Dr Sarah Myhill and that ‘witch-hunt’

Dr Sarah Myhill is evidently a doctor who cares passionately about her work and about people’s health. She is highly motivated to help and empower us to keep ourselves well and to make us better if we are sick. For her pioneering work treating patients with chronic fatigue syndrome (CFS) aka myalgic encephalomyelitis (ME), she has become a heroine to many of them.

There are heartfelt testimonials on various internet fora from people she has helped — mostly CFS sufferers who hadn’t been helped by the NHS and who were desperate enough to turn to a private doctor with a  website containing some highly questionable assertions about a range of health issues. I’ve no reason to doubt the sincerity of the stories of recovery from grateful patients. Those telling them demand to know why the only doctor who has actually helped them is being investigated by the General Medical Council (GMC) and faces losing her licence.

Yesterday Dr Myhill attended a hearing of the GMC’s Interim Orders Panel in connection with two complaints made about her. The first complaint, by a group of doctors, was filed in June 2009 and apparently concerns Dr Myhill’s recommendation on the strength of one blood test that a young patient with a neurological disease, whom she had not met nor seen the medical notes of, be administered B12 and magnesium sulphate injections

The second complaint was filed a few weeks ago. The complainant, who posts on the Bad Science forum under the name of ‘Jonas’, started a thread over there with the announcement that he’d made a complaint about a range of recommendations Dr Myhill makes on her website. These, Jonas argued, are contrary to national guidance and safety limits and so may place people at risk. The recommendations are in connection with nutritional supplements, heart disease, contraception, breast cancer diagnosis and vaccines. None of this complaint appears to be about treatment relating to CFS, with the possible exception of the vitamin supplements.

The purpose of yesterday’s hearing was to decide whether any interim order should be placed on Dr Myhill pending the full hearing of the complaints. The worst case scenario for her would have been suspension for up to 18 months. The panel were not required to decide on matters of fact but on whether Dr Myhill was acting within her competence and expertise as a physician and whether there might be a need to protect the public in any way. They concluded that she probably wasn’t and there probably was.

Dr Myhill is now forbidden from prescribing any prescription-only medication and has been ordered to remove from her website content relating to the following:

  • The medical management of cases relating to cardiology, or cardiovascular disease including; chest pain due to ischaemic heart disease; acute coronary syndrome; heart failure; or pulmonary embolus;
  • The treatment of asthma;
  • The treatment, testing, identification, diagnosis or management of breast cancer;
  • The use of hormonal contraceptive medication;
  • The pharmacological management of primary or secondary prevention of vascular disease;
  • Any immunisation or vaccination;

They have also placed a range of restrictions on her with regard to seeking employment. See the hearing transcript and full verdict here.

Naturally, Dr Myhill will be very distressed as will her supporters. I’m not sure to what extent the CFS sufferers might be affected by her inability to prescribe prescription-only meds; I’ve seen speculation that it will have a catastrophic effect while they will be largely unaffected by the changes to her website.

I fully accept that CFS is an identifiable condition and that it can have a life-shattering effect on sufferers, a couple of whom I have known. (I recommend an account from Margaret Nelson’s blog: ME and me and the Daily Mail.) I have no opinion on the causes of CFS because I haven’t read enough about it. I am aware of some of the conflicting ideas about these. Indeed, I am aware there is conflict over the very existence of the syndrome. At one end of the spectrum seem to be arch cynics calling it a fake disease adopted by malingerers; at the other end are sufferers who take furious exception to anything that they rightly or wrongly interpret as implying their condition is pyschosomatic.

Medical opionion is divided but those who claim some degree of expertise, while disagreeing over precisely what it is and the likely causes, do apparently agree that the syndrome exists. Prof Simon Wessely is beyond the pale for some sufferers because of a perception on their part that he doesn’t allow the possibility of a physiological cause (edit: see comment below from Prof Wessely); Emeritus Prof Malcolm Hooper takes a contrary view to that of Prof Wessely. In a paper published last year, Dr Myhill summed up these two positions thus:

  • Hypothesis (A) the metabolism of people with CFS is normal, but the fatigue and other symptoms are due to psychological factors.
  • Hypothesis (B) there is a metabolic dysfunction with the result that not enough energy is being produced.

Sliding off the edge of reason at the angry sufferers end of the spectrum are the conspiraloons who see the GMC investigation into Dr Myhill as a ‘witch-hunt’, a view Dr Myhill shares. Unfortunately, the real and very important issues raised by the latest complaint are getting drowned in the the sea of nonsense spewed out by this vociferous group.

These are some of the reasons and views I have collected from different people who subscribe to the witch-hunt hypothesis:

  • There are other people, procedures, practices and meds that harm people;
  • This is the umpteenth complaint to the GMC about her;
  • The complainant is anonymous;
  • She helps people;
  • She harms nobody;
  • None of the previous complaints has come from patients and nor does this one;
  • A person who genuinely had an issue with the website would complain to the  owner in the first instance

Let’s consider these in turn:

‘What about the other people, procedures, practices and meds that are harming people?’

The argument that if one cared about people’s health, one would be targetting things that really harm it, is made repeatedly by some of those supporting Dr Myhill so I’ll deal with it briefly. The fact that people have complained about Dr Myhill doesn’t mean they don’t care about anything else or that they are doing nothing about anything else. The only thing of importance we know about the complainants is that they made these particular complaints. Anything else is speculation and not an argument.

It’s the same point that gets made repeatedly to skeptics. “I wish you could find a space in your evidently caring heart for the thousands and thousands who die each year at the hands of ’scientific’ medicine, or don’t those matter?” said one commenter on this blog. In the interests of balance, I’ve been told, I should blog more about what they want to read and less about what I want to write. As if there weren’t enough people writing about the wrongs of scientific medicine already and as if my writing about it as well is going to make any difference to anything.

Anyway, back to the witch-hunt:

‘This is the umpteenth complaint to the GMC about her.’

There have been a number of previous complaints about Dr Myhill. These have all happened since she left the NHS and moved to private practice in 2000. I understand that all or most of these previous complaints concerned her recommendations on prescribing thyroid hormones. (I’m getting my information from her defence statement; I stand to be corrected if I’ve misunderstood.) The point is that these earlier complaints seem to be about something different from the latest two, which are different again from each other, though the common denominator is the allegation that some of what Dr Myhill says and does is potentially harmful.

Whereas, to a disinterested party, the fact that there have already been several complaints against her might set off alarm bells, to her supporters the important thing is that these previous complaints were unsuccessful. That there should be yet another complaint when there have been several unsuccessful ones already, confirms their darkest suspicions: Dr Myhill is being deliberately targeted by the GMC, who will use any excuse to stop her helping people. That previous unsuccessful complaints should serve as reason enough not to consider any more is a very curious argument, yet to her supporters it makes perfect sense. Look at the petition, for example,

We the undersigned wish to register our strong objections to the GMC (General Medical Council) over the witch hunt campaign to discredit Dr Sarah Myhill. This is the 6th time that Dr Myhill has been subjected to such a hearing and enough is enough!

That is one of the most idiotically-worded petitions I’ve ever seen and I don’t think I would sign a petition for someone I supported if it was worded like that.

Let’s say, for example, somebody I know and love keeps getting arrested and questioned for various crimes but none of the allegations stick. The sixth time he’s arrested I’m definitely thinking, ‘This isn’t fair. They’re just picking on him — what have they got against him? Who benefits from his conviction? They’ve never been able to prove anything against him — he’s obviously innocent’. This is somebody I know and love, right? I’m allowed, in my distress, to be irrational in my thinking.

Once I think about starting petitions and campaigns, however, I hope I’m going to run it past someone more objective than I’m capable of being in the circumstances. Hopefully I’ll realise that, even if he was innocent before, that doesn’t mean he’s innocent now; if a complaint has been made it still has to be investigated and an argument like ‘enough is enough’ isn’t, well, enough to not investigate it.

To an objective bystander like me, the idea that GMC members themselves are conducting a witch-hunt seems a bit silly. If someone submits a complaint, they can’t just say, “Flaming Norah! Not this woman again. Look, we’ve already thrown out a number of complaints about her already so let’s not waste time on any more.”

A bit more plausible is the idea that the complainants themselves are conducting a witch-hunt: a bunch of people don’t like someone so they take turns to make vexatious complaints to the employer, regulatory body or whatever. But why would they target a doctor that helps people and harms nobody? This is where we get the full chorus of cacophonous loony tunes.

After ‘Jonas’ announced on the Bad Science forum that he had complained about Dr Myhill, a vitriolic thread was started on Phoenix Rising, a ME/CFS forum, apparently for the purpose of hissing and spitting at posters on the Bad Science forum. The PR thread contains the usual nonsense about Big Pharma paying ‘shills’ to post on internet fora as well as some less than complimentary comments about Bad Science posters in general. The thread also contains this post on page 3:

As far as I am concerned this is Goldacre on a further a self destruction course. He is providing amo for the proposal I have made to report him and his website to the GMC. They have already set a precedent by taking a case against Dr Myhill. So let the junk and attacks continue on his site, save them, don’t reply and let them build their own case against themselves. We will just have to forward to the GMC. If this is not putting patients at risk as Dr Myhill was so pathetically accused I don’t know what is.

Thankyou Ben Goldacre for being the author of your own misfortune, yet again!!!

Can one fault the reasoning here? Ben Goldacre owns a website with a discussion forum and, athough he rarely posts there himself, he is responsible for everything said on it including any unpleasant comments about Dr Myhill, whether or not he personally expresses an opinion.

The idea that Ben Goldacre is somehow responsible for the latest complaint against Dr Myhill doesn’t stop with the Phoenix Rising ME/CFS forum. Take, for example, About.com’s Thyroid Disease Blog, authored by one Mary Shomom.

It is precisely because doctors like Sarah Myhill use successful approaches that are not part of the narrowly prescribed dogma that they are successful — but it seems that to the GMC, results and healthy, satisfied patients are less important than conformity.

So the GMC’s decision to pursue a case against Dr. Myhill raises a key question: who is the GMC actually trying to protect?

That is clear. The doctors on the GMC want to put her out of business. She is not part of the NHS, and she takes an integrative, holistic approach to treatment — which is an anathema to the old school NHS doctors. The GMC members are selfishly protecting themselves — their financial interests and their “status-quo treatment is best” egos — rather than protecting the health and safety of patient.

Have we got that straight? NHS doctors don’t like the “integrative, holistic approach to treatment”, so they want to ruin someone practising it outside of the NHS. There simply aren’t enough people queuing for treatments and using up the NHS’ finite resources already so they must stop those people from going to Dr Myhill after the NHS has failed them and bring them back and offer them more of the expensive but ineffective treatments they’ve tried already. Right, gotcha. I’m sure that is indeed why the complaints against Dr Myhill were made.

That Ben Goldacre is an NHS doctor who owns the Bad Science website is enough for Mary Shomom to write one of the most burningly stupid and gratuitous attacks on him I’ve ever seen. To show just how badly the stupid burns, here’s one sentence:

One also has to wonder whether Goldacre himself is actually the one who anonymously sent the complaint letter about Dr. Myhill as a publicity stunt to help sell books and get more media attention for himself.

Of course, writing an anonymous letter is exactly what you would do if you wanted publicity. Gah!

In the comments beneath the post (which include, by the way, some excellent comments in defence of Ben) we see evidence that the stupid is infectious in this gem:

The timing of this attack on Myhill from Goldacre’s site is interesting.

Goldacre doesn’t let on that he is “a member of the Royal College of Psychiatrists, and is a research fellow at the Institute of Psychiatry, King’s College London.” (Wikipedia). “Trust me I’m a psychiatrist” doesn’t sound so good, does it?

Goldacre is supervised by Simon Wessely, who has built a career arguing CFS and GWI are psychiatric conditions, the opposite of what Myhill thinks. Now it’s turning out they are real physical ailments, not just maladaptive beliefs, so the shrinks are lashing out wildly at anyone in reach, as their ship sinks.

It has never before occurred to me that Ben Goldacre is ashamed of being a psychiatrist. I wonder who held a gun to his head and forced him take it up? Next time I hear Ben repeat his favourite catchphrase, “Trust me, I’m a doctor,” I’m going to call him on it. But the most important thing here is the uncovering of the Goldacre-Wessely connection. Wessely, remember, is despised by some CFS sufferers. The latest complainant is a registered user on the website forum that Ben owns. Voila! A link between Wesseley and the complainant is established and it’s obvious Goldacre is a key player — maybe even the instigator — of this evil mission to destroy Dr Myhill. As Mary Shomon says,

A quackbuster is a quackbuster — and in the end, quackbusters are NOT on the side of wellness or truth.

Note to readers: In case you missed it, every bit of my paragraph above is sarcastic. It’s what happens to me when I read things that are unutterably and irredeemably stupid and that would be my description of the “arguments” that there is some ulterior motive — and someone other than Jonas — behind the latest complaint against Dr Myhill.

The fact of the matter is they haven’t a clue why anyone would bother complaining about someone so wonderful and they are desperately making stuff up. The thought that people might complain because they genuinely think that she is giving dangerous advice and they are genuinely concerned about the effects this could have on people’s health, doesn’t enter their thick heads!

‘The complainant is anonymous.’

Anyway, whoever complained had better not walk out alone at night, or so one blogger (edited to add: the blog’s now closed to the public for some reason) would like him to fear. That would be Rita Pal, who presents herself as a heroic NHS whistle-blower, which she may well be, I’ve no idea. I only know that what she writes about the latest complainant makes her sound like a complete nutjob. First she — like Shomon and numerous other commenters — labours under the misapprehension that the complainant is anonymous.

Perhaps the big girls blouse will fight like a real man and stop “hiding behind the skirts of the GMC”. Of course, identification is really easy really, we get the IP, we get the internet company and we get the address. It is about a 48 hour job if I put my mind to it…There will be no problems in outing Dr /Mr Anonymous. After that, we will do what was done to Dr (name redacted). The matter was faxed to all local papers, to every PCT and posted on the internet. In the end, (name redacted) became depressed. I can’t help it if some doctors make vexatious complaints then can’t sustain it.

Then she offers to give advice to anyone who wants to make complaints about — you guessed it — Ben Goldacre to the GMC.

Just to remind Ben — I don’t like him messing with my friends…So far two of my friends have gone down due to the Bad Science Forums. Either Ben controls it or he doesn’t. The choice is his. I though am highly pissed off — and not a lot of people like it when I lose my patience.

Oh get over yourself, you silly moo! (The deliciously ironic title of this piece, by the way, calls the Bad Science forum ‘crackpot farm’.)

Let’s remind ourselves that the complainant only posted on Bad Science after he’d submitted the complaint and after Dr Myhill had commented on it on her own website. The Bad Science forum is just a place where skeptics hang out, a bit like an on-line SitP but without the guest speakers. Instead, everyone who registers, regardless of whether they are good, bad or ugly, can say pretty much what they like. It’s called ‘free speech’. The suggestion that the complaint arises from the Bad Science forums or from anyone other than the complainant doesn’t stand up to a nanosecond’s scrutiny.

Good tip about the IP addresses though, Rita. Obviously, I have the IP addresses of all the lovely people who leave their quackolades on this blog. I’m sure a quick email to their internet service companies will secure their names and addresses for me in a jiffy. Beware when you answer your front door, losers. [/more sarcasm]

It’s time to nail this one: the complainant isn’t anonymous. The complainant’s name and address are known to the GMC, while we can infer from what Dr Myhill says in the letter she sent to supporters on 9th April  that she knows his name.

However, on the basis of this unsubstantiated complaint by an anonymous complainant (I am told his name but not who he is), the GMC have decided that “there is a potential risk to public safety”.

In her defence statement Dr Myhill elaborates:

I do understand and respect the complainant’s request for anonymity and have no desire to know his name or whereabouts. However I did wish to know whether he was acting out of personal concerns or if he was acting for a third party. I wanted to know this because in the past other practitioners of nutritional medicine have been harassed by investigative journalists.

On the Bad Science forum, Jonas mentions he’s a junior health professional.So if Jonas is a doctor or a nurse or a physiotherapist or a dietician, or even if he is an investigative journalist representing other interests, it makes what difference, exactly? None. What matters is whether the complaint has any merit, regardless of who filed it. (Edit: according to the hearing transcript Jonas is a UK registered Clinical Scientist.)

Dr Myhill’s supporters do her no favours by banging on about this being an anonymous complaint but, unfortunately, they are taking the lead from her in this as in everything else about the case. Dr Myhill has already made much of the original post Jonas made on the BS forum. She quotes from it on her webpage: ‘Our anonymous complainant has announced himself on the internet’ and again in her defence statement. In case her supporters had missed seeing it, she read it out in her speech to them outside the GMC yesterday. This can be seen on youtube, nearly five minutes in. “And I quote from what he put online verbatim!” she says, angrily, before reading out some of the post and making clear from her tone her contempt for its contents.

Notably, what is missing from each of her accounts of Jonas post, is the actual substance of his complaint, i.e. the links to the pages on her website that contain the (allegedly) harmful recommendations he has complained about. These have always been quite visible in the post and there would have been little point in his posting without them. They are what his complaint is all about, what he is inviting other posters to comment on and they are what the GMC is being asked to look at. Yet they are ignored by Dr Myhill, who appears to think there is some advantage to be gained by quoting the rest of his post ad nauseum and theatrically describing the GMC’s position on the complaint as

Setting my opinion against an anonymous observer and coming down on the side of anonymity.

And perhaps there is, if the intention is to divert attention away from the substance of the complaint and vilify the GMC by implying the complaint they have agreed to investigate is frivolous, unsubstantiated and anonymous.

‘Dr Myhill helps people, harms nobody and no patient has complained.’

Outside the GMC premises in Euston Road yesterday, dozens of Dr Myhill’s supporters gathered, some of them holding placards saying they owed their life to her, all of them angry at the way she is being treated. Many more supporters have posted vivid accounts on the internet of the desperation that drove them to turn to Dr Myhill and of the improvements they’ve made since being treated by her. Behind much of the anger at these complaints lies the fear that someone who is helping people who’ve suffered horribly with CFS may lose her licence and won’t be able to continue helping them or help others who are suffering.

I am not qualified to comment on the treatments Dr Myhill gives to CFS patients or to anyone else. Let’s just say, for the sake of argument, that Dr Myhill has stumbled upon a treatment regime that really does help many sufferers. It would indeed be a terrible thing if she were not able to help them anymore. I am already desperately sorry if the restrictions placed on her yesterday mean that ill people will suffer.

I am equally sorry if anyone suffers as a result of misinformation on her website. I know it can be difficult to imagine that someone to whom you feel indebted can be guilty of anything but I’m sure you’re not too blinkered to acknowledge that the fact that she might be doing some things right doesn’t preclude the possibility that she’s doing other things wrong.

Hand in hand with the argument that she helps people, is the one that she’s done nobody any harm and none of the complaints against her comes from patients. I have to wonder if they are being deliberately obtuse when they say this. This is what Jonas says,

The complaint does not focus on matters of opinion that I may not agree with. It clearly identifies specific examples where, according to national guidance and safety limits, patients may be being placed at risk. It does not mention anything about any financial aspects of Dr Myhill’s practice. It does not target her approach to diagnosing/managing specific conditions such as thyroid disease or CFS.

The complaint focuses on what I consider to be specific examples of dangerous practice that are a risk to patient safety.

I can’t see a way of putting it any clearer. If someone can point to specific examples of advice given that contravenes national guidance and safety limits, these having been determined by the weight of scientific evidence available, how can it be wrong to complain about it?

I’ve heard a range of responses to this question, from ‘the complainant is wrong; the website content is scientifically supported’ to ‘the national guidance is wrong and Dr Myhill is right’ to ‘some of the stuff is quackish but it doesn’t post a significant risk to health’.

The vaccination pages

For all I know, there may be some truth in all of these responses. But I also believe there is substance to Jonas’ complaint and I defy anyone to actually examine the pages complained about (if they are still there) and say that there isn’t. I’ve limited my reading of Dr Myhill’s website to a few articles, mainly those on immunisation which, for reasons I won’t go into, is something I feel rather strongly about. What I’ve read is, in my humble opinion, indefensible.

On 18 April jdc wrote a blog post criticising Dr Myhill’s web article entitled, MMR vaccination — should my child have it? The following day the content of that page had been removed and replaced by this notice:

Update April 19th 2010

I have received several emails from authorative sources who tell me my information on vaccinations is out of date. Thank you very much for getting in contact! This page was originally based on a lecture which I attended in good faith!

I am grateful for new information that I will incorporate as soon as reasonably possible!

This would have seemed a very positive and gracious response, were it not for the fact that she directs readers to her main article on vaccinations: Vaccinations — good or bad? (See pdf here.) Someone influenced by the opinions expressed in this article wouldn’t have their child immunised against anything. The fact that she includes a ‘recommended schedule’ for some vaccinations at the end of the article doesn’t mitigate the strongly anti-vax message and (what I believe to be) misinformation throughout the rest of it.

In the speech she wrote for her supporters yesterday, Dr Myhill made this controversial claim.

Lynn Gilderdale who died from ME aged 28 had her ME triggered by a BCG vaccination.

Lynn got the BCG jab at age 14. How does Dr Myhill know that Lynn’s ME was triggered by the BCG vaccination? When she actually delivered the speech, Dr Myhill helpfully departed from the script, just very slightly. (See the youtube vid at 2:50)

Lynn Gilderdale who died from ME aged 28; her mother tells me her ME was triggered by a BCG vaccination.

Spot the difference? How can it be ethical to present the opinion of a grieving mother as if it were an established fact? (Let’s not bother talking about Lynn’s death “from ME” actually being death from an overdose of morphine in an assisted suicide. Her mother was acquitted of her attempted murder.)

Amongst Dr Myhill’s recommendations, by the way, are that babies receive no vaccinations before six months and are kept at home. Is this advice — which is, I’m sure, much appreciated by mothers whose live-in nannies can be persuaded or coerced into staying at home with the baby for six months  — an example of the “holistic approach” revered by Mary Shomon and others?

As Dr Myhill evidently sets so much store by anecdote, here’s one from me.

My first baby got his BCG jab in November 1984 at eight weeks of age. This was followed, shortly after, by the DPT — the latter, I would add, accompanied by huge anxiety on my part, thanks to anti-vax scaremongering at the time about the whooping cough vaccine. His sister got the same jabs two and a half years later.

Their father worked long hours leaving me to spend twelve hours of every day with the two of them and no help from anyone else. We lived in a small flat. If, in the interests of protecting their health, I hadn’t been able to take them both out to toddler groups, friends’ homes and suchlike, I’d have ended up killing both of them and myself, probably.

When the MMR was launched after a year in which 16 children in England/Wales had died of measles, I was banging on the door of the clinic to get it for my two. Fortunately they, like every one of their similarly immunised friends, grew into strong, healthy adults who — unlike me — never knew the miseries of feeling ill and lonely and missing weeks of school because of a series of loathesome infectious diseases, which left some children of my generation with permanent disabilities and others dead.

On the basis of my anecdotal experience, I’m tempted to recommend that all children get all the jabs my children had, starting with the BCG at eight weeks, though you may as well stick with what the NHS is saying nowadays.

I don’t intend to spend any time on what else I think may be wrong with Dr Myhill’s site. A lot of it is coming down anyway and there is another thread on BS where people are posting on this very topic, which brings me to a final argument from Dr Myhill’s supporters and from Dr Myers herself:

Why couldn’t the complainant just complain directly to Dr Myhill about the content of the website?

I have some sympathy with this. It would have given her the opportunity to either convince the complainant that all the website content is sound or to change the content so that it is accurate. Jonas, however, points out that:

These complaints date back to at least 2001 and yet she still continues to practise in the same way and offer the same inaccurate information that attracts all of this adverse attention? She could quite easily continue to help the CFS patients, to whom she is quite clearly a benefit, without promoting such misguided and dangerous practices.

This is precisely why I chose to complain to the GMC as I felt that personal communication would simply be futile. Why would she listen to a junior health professional with only a few years experience when she has repeatedly resisted multiple challenges from her senior peers over the course of 10 years? We would probably still be debating the intricacies of thyroid function assessment many years later whilst her dangerous information continued to mislead patients and risk their safety.

This, as an argument, I find altogether more persuasive than any of those presented by her supporters, most of which aren’t arguments at all. The most intelligent post from a CFS sufferer — and one whose calm reasoning contrasts starkly to many that I’ve seen — was posted by a newly registered poster at BS. Here it is in full, with bold added:

I feel a little silly now, although not altogether regretful, to admit that a couple of years ago I took the ATP test on Dr Myhill’s site and then took to ‘prescribed’ supplements including injecting B12 and Mag. Although reading through the ‘inaccuracies in Dr Myhill’s website’ thread has made me feel very naive for doing so. At the time I was so ill, and so desperate to find a/. a diagnostic test and b/. some kind of treatment, that I know in my heart of hearts that I put aside my analytical thinking for the sake of hope.

And that’s the point, when you are ill and looking for information and hope you try and find any authority to give it to you. For me, it did me no harm (apart from financial (which in so small matter actually)), in fact it helped, but that’s not the point — what if I had been a patient with lung cancer believing that medical treatments wouldn’t work and supplements would? Or a mother who now believed that putting my baby on her side (rather than her back) is good protection for cot death?

I think it is such a shame that we (as the ME community) can’t see that the complaint is about the inaccuracies in the website that a Doctor shouldn’t be putting forward, and not an attack on the validity of the illness. The problem is that it is very hard to want to see the flaws in Dr Myhill when she is one of the only doctors out there offering actual treatment for ME/CFS (founded, unfounded, or er..otherwise). We want to believe! We want hope, and that sometimes blinds you to really being unbiased when looking into to these things.

Which is why this forum and others like it are important.

I hope that Dr Myhill is able to continue helping CFS sufferers, that her pioneering work is fruitful and justifies the loyalty her supporters feel for her.  As for the possibility that they might stop thinking about themselves long enough to see the truth of the complaint about the website — after reading Dr Myhill’s speculation over why the GMC have imposed such “fierce and inappropriate sanctions“, I won’t be holding my breath.

78 thoughts on “Dr Sarah Myhill and that ‘witch-hunt’”

  1. Nice summary, and very brave of you to stick a toe into anything relating to CFS/ME, Skepticat.

    When you “talk” to the more anti-mainstream medicine CFS/ME people on the blogs, it is never long before Simon Wessely’s name comes up. But from a read of a couple of Wessely’s recent papers, the kind of line Shomon trots out is a travesty of Wessely’s views. It is, though, a line commonplace in the ME/CFS “activist” circles, judged from posts on Dr Crippen’s now disappeared blog.

    Quite a lot of Wessely’s recent research actually seems to be looking for physiological changes in CFS, e.g in things like the immune system – see Wessely’s Wikipedia entry. It is true that Wessely appears skeptical about “mystery underlying illness”, but (i) he certainly isn’t ruling it out, (ii) he and other mainstream people are actually looking to see if anything is there; and (iii) from the science his skepticism is perfectly understandable.

    As I posted on jdc325’s blog a week or so back, one of the interesting things about Myhill’s basic schtick is that it is actually old stuff. You can actually trace the “fear of mystery disease from mystery toxins” idea back even further than that comments says, to the immediately post-WW2 years.

    There is an interesting Guardian article from 2002 about some of the CFS/ME controversies here, written, surprise surprise, by Patrick Holford’s mate Jerome Burne.

  2. Thanks for all that, Aust. I didn’t know I was being brave. I’m scared now.

    What you say about Wessely doesn’t surprise me at. I edited my blog to try to make it clearer that it’s their perception, not necessarily the reality of Wessely’s position that makes him a pariah to them.

  3. You ARE brave! If nothing else, you’ll get a lot of comments and page hits which is probably why you blog in the first place.

    Prof Wessely is a psychiatrist, he believes that some type of viral event precedes CFS, which in turn creates a false perception of illness, that is sustained by deconditioning and behavior long after the viral event has faded. There is some controversy about how he and other like minded researchers diagnose and selects patients for his studies, which in turn casts doubt on the quality of his research. His viewpoint seems to be specific to the UK and Europe; in the US and other places researchers focus on some of the endocrine and immune oddities they’ve found. Research is sadly underfunded everywhere and unfortunately for patients it will likely be a controversial diagnosis ad infinitum.

    I think the fervor of the Myhill debate could be framed differently; remember that many of her supporters are patients, not scientists, physicians or people familiar with scientific processes and lacking the skills to sort science from pseudoscience. You touched on that in the end of your article. Many patients are quite ill and face all kinds of catastrophic problems resulting from their disability; they struggle to survive financially, get their basic needs met, people in their 20s and 30s shop for wheelchair and scooters. They have little to no support from the NHS. Myhill, though obviously on the wrong track scientifically, is the only kind face many of them have seen.

    It’s all very sad.

  4. Dear Skepticat.

    I am not here to comment on the main theme of your blog, but to take issue with your comment “Prof Simon Wessely is beyond the pale for some sufferers because, as I understand it, he doesn’t allow the possibility of a physiological cause”

    In fact I very much allow the possibility of a physiological cause. Like most psychiatrists, as I have written elsewhere, I believe that many disorders that we treat, often as a result of the way in which professions have emerged rather than for any more coherent reason, have physiological causes. Myself and probably the majority of my colleagues think for example that schizophrenia and bipolar disorders are primarily either neurodevelopmental or genetic disorders of the brain.

    We have not found such clear cut evidence of either brain abnormalities or genetic disorder in CFS, but there is no doubt that there is dysfunction of the central nervous system and equally no doubt that there are genetic contributions as well, if not as strong as those found in other disorders.

    And a quick look at our publications would put paid once and for all the canard that I as a researcher, and those with whom I work, have no interest in looking for the physiological substrates of CFS:

    Here are a few papers myself and my colleagues have produced, from one of my very first ever publications to some of our most recent:

    Halpin D, Wessely S. The VP-1 antigen in chronic postviral fatigue syndrome: a controlled study. Lancet 1989; i: 1028-1029.
    Bearn J, Allain T, Coskaran P, Miell J, Butler J, McGregor A, Wessely S. Neuroendocrine responses to D-fenfluramine and insulin induced hypoglycaemia in chronic fatigue syndrome. Biological Psychiatry 1995;37:245-252.
    Peakman M, Deale A, Field R, Mahalingam M, Wessely S. Clinical improvement in chronic fatigue syndrome is not associated with lymphocyte subsets of function or activation. Clin Immun Immunopath 1997;82:83-91.Heap L, Peters T, Wessely S. Assessment of vitamin B status in patients with chronic fatigue syndrome. JRSM 1999: 92: 183-185
    Skowera A, Stewart E, Davis E, Cleare A, Hossain G, Unwin C, Hull L, Ismail K, Wessely S, Peakman M. Antinuclear antibodies (ANA) in gulf war related illness and chronic fatigue syndrome (CFS) patients. Clin Exp Immunology 2002: 129:354-358
    Skowera A, Cleare A, Blair D, Beivs L, Wessely S, Peakman M. High levels of type 2 cytokine producing cells in chronic fatigue syndrome. Clin Exp Immunology 2004: 135: 294-302.
    Winkler A, Blair D, Marsden J, Peters T, Wessely S, Cleare A. Autonomic Function and Serum Erythropoietin Levels in Chronic Fatigue Syndrome. Journal of Psychosomatic Research 2004: 56: 179-183
    Cleare AJ, Messa C, Rabiner E, Grasby P. Brain 5-HT1A receptor binding in chronic fatigue syndrome measured using positron emission tomography and [11C]WAY-100635. Biological Psychiatry 2005: 57, 239-246.
    Jerjes W, Taylor N, Peters T; Wessely S, Cleare A. Urinary Cortisol and Cortisol Metabolite Excretion in Chronic Fatigue Syndrome. Psychosomatic Medicine 2006: 68: 578-582
    Roberts ADL, Charler M, Papadopoulos AS, Wessely S, Chalder T, Cleare AJ (2010). Does hypocortisolism predict a poor response to Cognitive Behavioural Therapy in Chronic Fatigue Syndrome? Psychological Medicine in press

    Sometimes we find evidence, sometimes we don’t. Exactly the same is true of our studies looking at psychological factors, either influencing susceptibility or determining outcome. We certainly have found and published evidence confirming the role of some (for example a history of depression before exposure to precipitating viral infections) and sometimes we haven’t (studies of hyperventilation or personality).

    But that is what research is all about. One’s mind should be constantly inquiring to any possibility, and constantly critical to any claim, including one’s own.

    With kind regards

    Simon Wessely
    Chair and Head of Department of Psychological Medicine, King’s College London

  5. Thanks for the comments, everyone.

    Simon, I thought I’d edited the bit you take issue with fairly swiftly after feedback when I published last night but it turns out I didn’t save the edit. I guess I was tired last night.

    Anyway, I have now changed it from “because, as I understand it” to “due to a perception on their part”. It is pretty clear this perception exists even though it is wrong. Thanks for the clarification and the references.

  6. Simon said,

    “But that is what research is all about. One’s mind should be constantly inquiring to any possibility, and constantly critical to any claim, including one’s own.”

    I wonder if Simon has made serious enquiry into the possibility that MMR might not be safe for all children. Andrew Wakefield’s inquiring mind recognised that possibility and called for further research. There has been constant criticism of his claim that MMR might be linked to inflammatory bowel disease and autism in a small subset of genetically vulnerable children. There is as yet no reliable scientific evidence for MMR’s universal safety. Andrew Wakefield is about to be struck off the medical register: does the eminent research psychiatrist from KCL think this capable and charismatic researcher has been fairly treated?

  7. Is that you, Shabby?

    What on earth has Wakefield got to do with Wessely?

    The answer is nothing.

    And Wakefield was not busted for “looking into a possibility”. He was busted for being “dishonest, irresponsible and callous” – to quote the GMC. That is, for his deficient medical ethics and repeated untruths. And (in the opinions of most scientists and doctors with any level of knowledge of the case) for twisting the data unforgiveably and repeatedly to fit his predetermined conclusion.

  8. ME/CFS sufferers who take issue with Simon Wessely do have some legitimate concerns about his research aside from the one part that was corrected, as lemon eloquently explained.

    But it’s true that chronic illness communities in general are often driven far more by emotion than by reason. I’ve written about my decision to leave one of those communities for that reason and since then I haven’t found a place where critical thinking prevails. I empathize with my fellow patients but as a skeptic with CFS, I just don’t have the energy to put up with posts about chelation and so forth.

    Not being too connected with these fora and also being an American, I wasn’t aware of the controversy about Dr. Myhill. Thanks for your interesting and fair-minded perspective. And I feel obligated to reiterate that there are *some* chronically ill rational thinkers out there — Margaret, whom you mention, is one of my favorite people I’ve never met in person — and by and large we’re embarrassed by the others, empathy or no.

  9. Q. “What on earth has Wakefield got to do with Wessely?”

    A. Quite a lot

    Wessely and Wakefield both graduated in medicine in 1981. Wessely became a psychiatrist and Wakefield a surgeon. They both became medical research scientists. Wessely’s main research interests lay in the “grey areas” between medicine and psychiatry. Wakefield developed an interest in that “grey area” of science between the inflamed bowel and the brain.

    Wessely pootled safely along in the grey area of psychiatry while toeing the establishment line. Wakefield did some real science, gastroentrology and nerology and picked up a fellowship from the Royal College of Pathologists. But he stepped on the toes of the vaccine establishment. Wakefield will be struck off the medical register and Sir Simon will soon be meeting the Queen. We certainly live in a topsy-turvy world.

    PS. I recommend reading Alan Moore’s book ‘V for Vendetta’ about the world we’re in and how vengeance will be sweet.

  10. Cybercat, you deluded old conspiracy theorist loon, what on earth is wrong with you? Are you postulating a link between CFS/ME and MMR? Or are you unaware of the fact that your post is completely off – topic?

    Also, maybe you can clear up something else; did you have his misreporting of results in mind when you wrote about the “real science” Wakefield did? Or was it his failure to disclose how patients were selected for his study? Or maybe you meant his acting against the clinical interests of the children on whom he performed unnecessary lumbar punctures?

    Of course, none of tha above has anything to do with the GMC’s findings or any future action they may take against him, it’s all because he was/is an heroic figure battling against the financial might of the pharmaceutical industry and the “medical establishment.”

    To sum up, Cybercat you’re a total, complete and utter twat, aren’t you?

  11. Cybercat, you truly are on a different Plane of Reality.

    Let me see if I’ve got this straight.

    Wakers and Wessely are both doctors who graduated the same year and both went into research.

    [Oh, and they both have surnames beginning with “W”. Don’t forget that.]

    One of them bailed out of treating patients (ever) and has been found by his own professional body to be “dishonest, irresponsible and callous” – plus no-one in science or medicine I have met believes that a word in any of his published papers can be relied on.

    The other “W” is a full Professor at King’s.

    PS I agree that “V for Vendetta” is great stuff, though. Though once more, utterly irrelevant to the matters under discussion.

    PPS Wakers got his Fellowship of the RCPath, which you seem impressed by, not by doing the exams but by “submitting his published papers”. That’s the same papers where we are now all wondering which bits are actually real.

  12. I’m too knackered to comment on this excellent post (not just because I’m the Margaret who’s mentioned), apart from saying that it would be good if someone could get to the bottom of what ME/CFS is all about. Then we might be able to separate all the pseudo-science from the real science, and shut the angry brigade up for good. And pigs might fly.

  13. rwf098 intoned,

    “To sum up, Cybercat you’re a total, complete and utter twat, aren’t you?”

    There is something comically sinister in how ‘newthoughtcrimes’ are spoken of by the robotic spokesman of Newspeak. Come in, drone-rwf098, your number’s up!

  14. Flashmaggie whines about how pigs might fly and says,

    …. that it would be good if someone could get to the bottom of what ME/CFS is all about.

    Well, maggie, we do know that vaccines are NOT implicated in what ME/CFS is all about. We do know that for CERTAIN. [/more sarcasm]

    The idea that vaccines might not be totally safe for everyone has been thoroughly discredited. Andrew Wakefield and his anti-vax cronies have been found to be callously and dishonestly irresponsible in letting measles out of the bag to kill and maim little children in every corner of the world and the universe. Vaccines are SAFE. [/more sarcasm]

    It is NOT possible that vaccines could possibly be implicated in ME/CFS or any other illness where the etiology is almost certainly in the mind and the province of government research psychiatrists of the post-1984 era.
    [/more sarcasm]

  15. So Cybercat, having initially posted a comment which was off – topic and which demonstrated a total lack of understanding of the MMR/Wakefield issue, you have moved on to a course of action with which many of us will be familiar ie writing posts which consist largely of meaningless and bizarre slogans (or attempts at sarcasm which are actually meaningless and bizarre slogans by proxy).

    You will not, of course, actually respond to any of the points raised about your posts, except with more meaningless, bizarre slogans taken from your favourite conspiracy theory websites. The reason for this, which you have clearly demonstrated, is that you just don’t understand any of the science, do you?

    So, I’ll stick with my “you’re a twat” assessment but I need to tweak it slightly, in the intersts of accuracy. You have been upgraded from Total, Complete and Untter Twat to the more prestigious Total, Complete and Utter Thick Twat.

    Congrats, me old mate. It’s probably the closest thing to an achievement you’ve ever managed, isn’t it?

  16. Was rwf098 whining like an unexploded drone? Or was it rather cross? Where’s Professor Sir Simon when you need him?

  17. ZenMonkey enigmatically wittered,

    “Cybercat illustrates my point beautifully.”

    What point was that?

    PS. I love beautiful points too – if only I knew what they were.

  18. The bitter-lemon said this of Professor Sir Simon Wessely

    “There is some controversy about how he and other like minded researchers diagnose and selects patients for his studies, which in turn casts doubt on the quality of his research.”

    Whoa! Hold on there you pipsqueaking lemon fella! Aren’t you straying into the “dishonest, irresponsible and callous” territory that Wakefield allegedly occupies. Do you want to see Sir Simon up in front of the great regulator for crimes against probity and other callosities? Shurely not!

  19. Cybercat wrote:

    “Dr Wakefield was persecuted blah blah Myhill witch hunt blah blah Kennedy shot by CIA controlled GMC robots blah blah alien abduction and the MMR vaccine.”

    That’s about right, isn’t it?

  20. Goon-rwf098 blah blah lacks intellectual subtlety. But then what can one expect from a radio-controlled newspeaking drone?

  21. Cybercat went on to write:

    “I know nothing about scientific method or any of the facts relating to the Myhill complaint or Wakefield’s claims but blah blah medical establishment blah blah some names I’ve made up for people who posted on this thread blah blah conspiracy blah blah more conspiracy blah blah but I’ll have to go now as two doctors and a social worker are at my door saying something about a section of the mental health act.”

    Pretty accurate?

  22. Cybercat: “Whoa! Hold on there you pipsqueaking lemon fella! Aren’t you straying into the “dishonest, irresponsible and callous” territory that Wakefield allegedly occupies. Do you want to see Sir Simon up in front of the great regulator for crimes against probity and other callosities? Shurely not!”

    You sound insane, but, I’ll try to answer this as best as I can.

    I am somewhat familiar with ME/CFS, enough to know that the underlying disease process is mysterious. I also know that many many patients have complained about exercise making them worse; I’ve observed this enough to be convinced that it’s probably true. The dodginess about Wessely’s patient selection is concerning because so many things can cause fatigue, I really doubt that 3% of the population has ME/CFS like he suggests. However, not much causes problems with exercise except ME. They seem to be two different things — fatigue and getting sick from exercise. If you want to study horses, a bunch of zebras in the herd is going to muck things up, right? So there are evidence based studies showing ME patients do well with exercise and I’m very concerned about that; something’s not right.

    Would I want to take Wessely to trial? No, but, I think they should at least study whether or not patients are getting hurt from exercise. The Americans are doing this — pushing patients to excercise and THEN running bloodwork to see what’s amiss. To me that makes much more sense.

    Wakefield’s a quack. That’s all I have to say about that.

    It’s a shame that this whole Myhill thing has gotten so political; I’m getting the gist that people are perceiving the patients badly rather than trying to understand the situation they’re in that drives them to people like Myhill. It makes me very sad.

  23. I don’t think the fact that Myhill’s supporters are behaving badly prevents us from understanding the situation CFS/ME sufferers are in and why they go to people like her. Rather, I think the noise they are making are diverting attention away from the very important subject matter of these two complaints against her and on to them but not in a useful way.

    The concern about Myhill is that she is giving potentially harmful advice and making potentially dangerous recommendations that she is not qualified to make, that are scientifically unsupported, that go against national guidance and that she has no business making. This isn’t about CFS/ME as far as most of us are concerned: it’s about cancer and asthma and heart disease and vaccines etc. Having now read the hearing transcript carefully, I am horrified at her lack of up-to-date training and knowledge of topics that she presumes to advise on. I’ve lost what little sympathy I had for her and will probably write a more critical post next time.

  24. I appreciate the issue concerning Dr Myhill has little to do with ME or CFS, however, in response to Simon posting-

    “I’m going to talk not about an illness, but about an idea” – Simon Wessely

    “I will argue that ME is simply a belief, the belief that one has an illness called ME.” – Simon Wessely

    “In fact I very much allow the possibility of a physiological cause” – Simon Wessely

    It’s always confusing when you stumble upon Simon’s work or comments, because there’s so much there which appears to conflict. Perhaps his views have shifted considerably over the many years he’s been associated with this disorder, or maybe he’s learned to be more circumspect and diplomatic when choosing his words. The impression that I have, however, is that Simon still works upon his long standing belief that ME is primarily a psychosomatic disorder (correct me if I’m wrong here Simon), but has left the escape hatch ready should his theory prove to be wrong. He’s certainly cultivated and promoted an unfortunate and widespread perception of ME as somatization, the modern day neurasthenia, and helped push all policy, funding and research in this direction. There’s been little balance there, despite his apparent openness to a physiological cause.

    The real tragedy here is that those holding the purse strings have been seduced by Simon’s early arguments, to the extent that they appear, unlike Simon, to not allow the possibility of a physiological cause. Why waste money on biomedical research into ME when it could be put towards a real illness, right? And so ME research has remained in a stranglehold, advancing one baby step at a time from the paltry amount of money the ME community can afford to throw at the problem.

    Just how much has the MRC ever invested investigating a physiological cause of ME? Given the UK has an estimated 250,000 sufferers with this illness you would imagine it was one of their top priorities. The answer is next to nothing.

    “We have applied several times to the MRC and on each occasion we were invited to submit those applications and on each occasion we got scores typically of 9, 8 and 3 – the 3 score was obviously from a psychiatrist who was complaining about our way of enrolling the patients, the criteria we had etc… David Tyrell told me the MRC will never fund biomedical research in CFS because they are in the thrall of the psychiatrists – so far, he has been right”. – Dr Kerr

  25. Skepticat – I agree with your view that the CFS/ME issue is distracting from what should be the real focus ie the complaints against Dr Myhill. However, I think that the complaint about the website content is actually performing a similar function with respect to the other, arguably more serious, complaint. I wouldn’t downplay the potential for harm of some of the madder advice given on the website but I think this issue is less significant than Myhill recommending treatment for someone she’d never set eyes on, or even spoken to, for a disease he didn’t appear to have.

  26. Skepticat – your presumption that an ISP will simply and easily give you the identity of their subscribers upon request is silly and false. Without proper legal procedure and a reason to file a complaint, no ISP worth their money will reveal the identities of their subscribers. Furthermore, there are several worthy services such as anonymizer and anonymouse which make leaving anonymous comments free and easy.

    Your views regarding the ease of depriving others of their privacy are in harmony with your views of depriving others of their right to free choice regarding medicine and health. At least you’re consistent, albeit toward dragging everyone back into the dark century of politically limited medicine.

    Go ahead – try to get my identity. Waste your time. You do not have my permission to attain or reveal my identity. Where I live, privacy is a right, and some of US take that seriously.

    Yes, there were two hints in the previous paragraph. The hint I’d like you to take is to leave people’s identities alone.

  27. @Rocky

    I am not interested in yours or in anyone else’s identity, you moron. You evidently missed that I followed that paragraph about getting IP addresses with this:

    [/more sarcasm]

    Or perhaps you don’t know what ‘sarcasm’ means? You are most welcome to come back and discuss something of substance. Your idiotic comments about “depriving others of their right to free choice regarding medicine and health” and “dragging everyone back into the dark century of politically limited medicine” will do for starters. Or are you just a cowardly drive-by troll?

    PS. I trust you’ve had a go at Rita Pal as well?

  28. @rwf098

    I half agree with you in that it’s unfortunate that people are focussing so much on the website and ignoring the first complaint. However, I do think the website stuff is extremely serious. In fact, the more I read of it the more serious I think it is.

  29. Oh, can’t resist this one…

    If you know anything at all about Mary Shomon you wouldn’t be surprised that she would come out with something as vacuous as what she wrote. (If she comes across your blog she’ll probably be most irked that you spelled her name incorrectly!)

    Of course Mary Shomon is going to support Sarah Myhill and have the perception that some sort of conspiracy is taking place. Mary Shomon is one of the suffering somatizers who after fluttering around from one made-up disease to another, landed on thyroid disease, went doctor shopping for that kind of diagnosis and finally got it. She has now parlayed that into an internet business that makes money off other somatizers hoping for the same outcome.

    One marketing pitch Mary Shomon employs is that of conveying herself as a thyroid disease patient advocate. But what she advocates for always comes back to the same thing – purchasing something from her. Those purchases range from books to personal phone coaching to profits from home medical testing kits. The books alone, containing recommendations for things like hypnosis and a variety of herbs, are enough for some doctors to directly recommend that diagnosed thyroid disease patients avoid anything she says.

    Like so many followers of medical mythology, Mary Shomon’s followers when backed into a corner will always proclaim, “But what’s the harm?” Like Mary Shomon they don’t seem to have the education, personal experience or maturity to realize that there is indeed harm. For one thing, like so many medical situations, the symptoms of thyroid disease can overlap with other diseases. Another thing is that taking thyroid disease medication when not necessary or taking too much can be harmful. Specific to following Mary Shomon is that she recommends seeing an alternative doctor over a general practitioner or endocrinologist (feeding into one symptom of somatization – avoid the very doctor who can confirm nothing’s physically wrong). The prospect of going to an alternative doctor to diagnose and treat thyroid disease is one that can become dangerous. In the U.S., anyway, alternative type doctors, including integrative and holistic practitioners, do not possess an adequate enough license to order the full range of thyroid disease testing. Ergo, something like thyroid cancer could get missed and could result in later jeopardy.

    Perhaps Mary Shomon’s own simple-minded words about the Sarah Myhill situation will enlighten some of her mislead followers to see her for what she really is. Let’s hope so. Perhaps too Mary Shomon will become like Sarah Myhill – who appears to have done the best job at burning herself at her own so-called stake!

  30. Thanks for your very interesting comment, B. I’m appalled that someone like Shomon has an about.com blog. Not that I know anything about about.com blogs but one assumes that the people who write them aren’t completely doolally.

    Thanks for the heads up about spelling her name wrong. Can’t believe I spelt it wrong in two different ways as well. 🙂

  31. I’m appalled too. What’s especially surprising is that about.com is owned by the “New York times.” And they appear to have no issue with the fallacies Mary Shomon comes out with. Like when she claims there’s a specific medical diet pertaining to thyroid disease – like that of a diabetic diet. There is no such thyroid diet. You’d think the “New York times” would have higher standards, but they don’t. On the other hand, it’s my understanding that newspaper is in steady decline anyway. So, I guess it shouldn’t be all that surprising.

    I’m sure you’d agree, the important thing about charlatans that’s most disturbing is not what they are saying…but who is actually listening. Mary Shomon’s book about some nonexistent idea of a thyroid diet was a moneymaker for her. Plus look at how many people believe everything Sarah Myhill has to say.

  32. Given this is your blog, obviously you are free to accept or reject anything. But may I attempt to respond anyway?

    After revisiting this page and then reading what you posted regarding it on badscience.net my first reaction is that I’m not surprised. Again, if you know anything about Mary Shomon you will know that another tactic she uses is to make it seem as though she has but one critic, that that person is this one particular doctor in California, U.S.A., and that he continuously “cyberstalks” her on the internet using different pseudonyms. None of this is true. What is true is that Mary Shomon has a variety of critics, they have nothing to do with the doctor she keeps referring to and the only one doing any “cyberstalking” seems to be Mary Shomon herself – the threatening email she sent you appears to be an example of this.

    I am indeed one critic of Mary Shomon. I have made public criticisms of her lies. That is something that’s not been all that difficult, given the sheer volume of blatant nonsense she comes out.

    But I’d like to state here a few things about myself personally, if I may. First of all, in case it’s not obvious, I am not a “he.” Secondly, I do not nor have I ever encountered either in person or through any personal correspondence the doctor that Mary Shomon and her followers keep referring to. Third, I really am a thyroid disease patient. With that, I certainly have something to say on this one topic for which Mary Shomon claims herself to be an expert on. I believe it’s this part that drives Mary Shomon to want to deflect what I point out about her by accusing me of being someone else.

    I write the above in case things appear to be looking just a tad too weird.

    I have to say I admire your response to the email Mary Shomon sent you (there are well known, well paid journalist in the U.S. who wouldn’t take a stance like that). Perhaps she’ll show it to her “legal team.” Plus I got a laugh out of you considering that any future actions by Mary Shomon might just be delightful fodder for a future blog post! However, I want you to know my intent was never to drag you into some petty tussle.

    I promise I won’t keep bothering you on this and I know I should really be creating a blog of my own. But I do want to throw out one more point and hope it gives Faith Stanfield and those like her something to think about: Between Mary Shomon and I, the only one attempting to profit financially on any of this is Mary Shomon.

    (Again, it cannot be said enough that it’s not just about what the charlatans are saying…it’s also about who’s listening.)

  33. Hello again, B. I did note that the IP address you post from is not in California.

    Because of Shomon’s ignorant comments about the Myhill case and disgracreful attack on Ben Goldacre, I wasn’t well-disposed towards her in the first place and her ridiculous attempt to intimidate me into censoring your comment and hilarious references to her ‘legal team’, etc. have made me positively hostile. She comes across as a real nasty piece of work.

  34. Many years ago considered a work colleague to be a malingerer because she developed Carpal Tunnel Syndrome — a condition that seemed to have emerged out of nowhere and was then “all the rage.”

    Since then I have changed my view somewhat. I still don’t understand how “real” CTS or CFS are, but I figure that at root there *is* something amiss, and that it needs attending to.


  35. The GMC’s treatment of Dr Myhill seems harsh to me, in spite of your comments, Skepticat.

    How about a more constructive response, as follows. I do not know if the GMC would have powers to do this, but it seems to me to be more likely to engage with her and her patients. The GMC could appoint a referee, who would produce some brief comments on some of her dubious claims, together with pointers to orthodox references and advice, which Dr Myhill would be compelled to place on her website.

    Readers of the website would therefore know in specific terms in what ways mainstream medical opinion differed from Dr Myhill’s.

    This would likely not be as expensive as the full complaints machinery. It would not be reasonable for a referee to be continually updating comments: but the presence of adverse referees’ comments would be a clear indication to her readers that there are other, well justified points of view.

    I think there is a wider issue here. Prescription drugs are widely available over the Internet; perhaps they should not be, but the fact is that they are. Dr Myhill’s advice pages are just some of millions of pages available on the Internet. She makes no secret that her opinions are her own, and that they are different from those of most other doctors, and from those of the medical establishment. (She may not have done this point by point, but anyone reading her pages can be in no doubt that she gives out her own forthright and sometimes eccentric opinions.) Orthodox advice is bountifully available from a great many reputable and high-prestige sources.

    How dangerous is her advice? Not very, I suspect: note that she does recommend a vaccination schedule, if not the one recommended by NICE.

    Is the right response really to institute disciplinary action and ban her from prescribing? I think not. To crush an eccentric in this way is bad politics and anti-libertarian. Conventional scientific orthodoxy can sometimes be wrong too.

  36. Thank you for your comment, CW.

    Whether you ‘suspect’ her advice is not very dangerous is neither here nor there. Personally, I suspect that her advice to women who may have breast cancer is extremely dangerous but so what?

    The right response to a serious complaint is to investigate it properly and I expect this to happen. The right response in the short term when there is a strong suggestion that people’s health may be put at risk by a doctor’s specific activities is to prevent those activities from continuing and I’m glad this has happened.

    Dr Myhill will survive the GMC’s action but you can’t necessarily say the same of anyone who follows dangerous advice.

  37. Thank you for your reply, Skepticat.

    As a first-time poster to your blog, and a late-comer to this discussion, perhaps I should say a little about me. I’m an academic scientist (non-medical) from a medical family: I’ve been a sceptical scientific rationalist ever since I could think. (Literally – my earliest memory of church is of staring about in wonder, thinking “Why are the grown-ups pretending to believe all this?”) I haven’t yet felt the need to take any kind of “alternative” medicine, and I think evidence-based medicine is precious, and NICE is a truly wonderful organisation.

    And yet I think there is indeed a witch-hunt against Dr Sarah Myhill, and the GMC is, in some respects, making an ass of itself.

    First, let me emphasise that if there are specific allegations that she actually harmed patients, or that she has done things that are actually dangerous, then the GMC should investigate, as they would for any other doctor.

    Next, we come to her web-pages. The GMC has decided that some of them contained such bad advice that they should be censored.
    This has been comically ineffective — you can’t censor the Internet. http://www.doctormyhill.com contains the uncensored pages, under the banner “Dr Sarah Myhill ungagged”. She has been presented as a martyr to censorship, and there is an on-line petition in her support with nearly 4000 signatures. To paraphrase Rahm Emanuel, members of the GMC should not seek alternative careers in public relations.
    Maybe if the GMC published a review of her work (and compelled her to link to it prominently from her website) they would persuade more people, correct more error, and not create a martyr.

    You say you suspect that one censored page contained “extremely dangerous” advice on the diagnosis of breast cancer. Oh really? Let’s see how dangerous this censored advice really is.

    Dr Myhill first remarks:
    “Standard screening tests currently available for breast cancer are not very satisfactory because they lack specificity and because the test involves radiation. We know that radiation can cause cancer and exposures should be kept as low as possible. We now have top cancer specialists telling us that overall routine screening with mammograms barely changes the rate of diagnosis or cure of breast cancer. My view is that the jury is still out on the overall benefits of breast screening. ”

    Well, there was a recent New York Times article pointing out that there had been four major changes in US guidelines on mammography since its introduction. There have been repeated and and continuous changes tightening guidelines on exposures to radiation. It would be appropriate for Dr Myhill to refer to the current (changeable) view on benefits of X-ray screening, but her failure to do so is not “extremely dangerous”.

    Next, she advises thermography rather than mammography. An evidence report on thermography (2004, from New Zealand) is two clicks away on the NICE website. It’s inconclusive: there are not sufficient studies to show thermography is equally as effective as conventional mammography. I haven’t read the whole document, but results from 1978 demonstrate some effectiveness, but less accurate than results from X-rays at that time. As the report remarks, rather large studies would be needed to tell if thermographic screening was an effective alternative to conventional screening. Engineering common-sense would indicate that the effectiveness of thermography might depend on the thickness of tissue to be examined.

    Is Dr Myhill’s advice “extremely dangerous” ? Surely not. Plenty of people don’t have their breasts screened at all, and this is a marginal risk, rather than “extremely dangerous”.
    The worst-case scenario would be for someone to go for thermography, get false negative result, and then ignore a lump for longer than they otherwise would have. This would be a marginally longer time to detection, which would carry some extra risk. “Extremely dangerous”? I think not.

    Finally, Dr Myhill remarks:
    “If there is a lump, do not let someone stick a needle in it to biopsy it. This is because the needle spreads the tumour cells up the needle tract and seeds them elsewhere. Ask what is the point of a biopsy? If, regardless of the result, excision biopsy is required, do not make a situation potentially worse by sticking a needle in! I have seen two patient srecently with tumour recurrences at the exact site that a needle was pushed through the skin for such a biopsy.”

    Now this is perhaps carelessly phrased, and there is unhelpful an unbalanced emphasis on a remote possibility of spreading a cancer up the needle tract. But the force of the entire paragraph is fairly clear. It is: if someone wants to do a needle biopsy on a lump, ask why not take out the whole lump anyway? This seems good decision theory and good common sense. Histology on the whole lump would be at least as accurate than histology on a small sample of it; and if there is a significant possibility of malignancy, instant removal rather than biopsy might be better. Note that Dr Myhill recommends asking a question of the oncologist.
    No doubt oncologists have done extensive studies on this obvious point. However, a back-of-the-envelope calculation of the size of experimental study that would be needed to show that needle biopsy carried, say, a less than 1% extra relative risk of a tumour metastasizing shows that such a study would have to be of the order of tens of thousands of patients. A confidence interval of 1% in relative risk would seem a bit wide to me in those circumstances: but smaller confidence intervals would not be achievable from practical studies.
    If an oncologist wanted to do a needle biopsy on a little lump in me, one of the first questions I would therefore ask would be: “Why not whip out the whole lump and take a look at it? Surely more accurate, and better safe than sorry?”, which is exactly the question that Dr Myhill recommends to ask.

    So is Dr Myhill’s advice “extremely dangerous” as you suspect? Of course not. But her style is a little punchy, and perhaps she could do with an editor.

    Should this page be censored by order of the GMC? How ridiculous.

    Dr Myhill is one of the very few doctors who take a sympathetic approach to chronic fatigue syndrome. I don’t have CFS, but I know several people who do. It is a miserable condition that can last for many years and destroy people’s productive lives. It is surprisingly common. There is less research devoted to it than would be expected for a public health problem that is so large and so serious. One reason for lack of research is that are no good leads on what to investigate; another reason is that, in the UK at least, CFS is commonly regarded as a psychosocial condition.

    I was interested in Professor Wessely’s post above. I have read some of his articles on CFS — but I had not appreciated that he had done so many studies on possible organic causes of the condition.

    However, I had a revealing encounter with a London consultant psychiatrist (who was not Professor Wessely), whom I shall call Prof X.

    Prof X generously came to my university to give a talk to academics on how to deal with students with CFS. He gave an academic presentation and then there was a discussion session; the whole event lasted about two hours. Prof X started off with rather similar remarks to Professor Wessely’s, about how little is understood about the condition, how he was agnostic about its cause, and how there is real evidence that CBT and graded exercise therapy (GET) can help some people.

    He then described some interesting and suggestive evidence that there is a significant psychosocial component to CFS. The evidence was certainly suggestive — but far from conclusive. He described evidence that the onset of CFS was associated with some virus infections, but he had no detailed view of what the mechanism of onset might be, or of whether there could be a continuing organic process underlying CFS.

    As the session went on, it was my impression that Prof X felt himself among professionals, and he let his guard slip, and he revealed his true underlying views. It became quite clear that he regarded all the symptoms of long-term CFS to be simply the result of inactivity, and the solution was for the patients to be persuaded, as it were, to pick up their beds and walk (in a carefully graded manner). He regarded CFS patients as delusional somaticizers, who needed persuasion that exercise would do them no harm.

    In my view, Prof X’s underlying beliefs went considerably beyond the evidence he presented. Not everyone is helped by GET, and he had no theory of what causes CFS to start in the first place. I felt that his position was perhaps an appropriate bold intellectual attitude for a researcher — but inappropriate for a doctor treating patients. If I had severe CFS, I would not want to fall into his hands for treatment. I wouldn’t want my friends to either.

    The people I know with CFS were previously highly active, and they are obsessed with trying to exercise themselves out of it, as any reasonable person would be. But for them it doesn’t seem to work.

    Dr Myhill is a sympathetic doctor to one of my friends: she recommends treatments that she believes will do no harm and which may do some good. Without Dr Myhill, my friend would feel abandoned by medicine. My friend understands, and I am sure that Dr Myhill understands, that these treatments do not have the kind of evidential support that NICE would require. But there are no treatments that do, except for GET, which doesn’t help everyone. In this situation, my friend is, I think, taking a rational decision to try out a range of nutritional therapies.
    I think Dr Myhill provides a valuable service, and she is loved by her patients.

    I don’t think the medical establishment handles dissent well. It is a witch hunt.

  38. Some stuff for CW, bit hurried, apologies.

    Para 4: So we should wait until some of her dubious advice actually harms someone? Take a moment to think about that when applied to, for instance, financial advice from an accountant. Or drunk-driving.

    Para 5: You can censor the internet, but that’s irrelevant and not what’s being done. A person in a position of responsibility and authority is being told not to publish daft unsubstantiated misleading nonsense from this position of trust. As far as the GMC publishing a review of her work, how about having Dr Myhill publish the research upon which some of the more ludicrous claims are based. She can’t, of course, as there is none.

    Para 7: Your selective quoting aside, the “jury” is not out on screening. There is a vast published and reviewed body of literature on the subject. The recent revisions to US practice recommendations were made based on such a review. The review’s conclusion was not simply that “overall routine screening… barely changes the rate of diagnosis or cure of breast cancer” but that screening is less effective for different age-groups, and that the screening error rate causes significant over-treatment (roughly speaking) for very little benefit in mortality rate reduction.

    Para 9: So she recommends a treatment which might be as rubbish, or worse than conventional mammography. You don’t seem to have a problem with her recommending an inferior diagnostic tool; Smashing!

    Para 10: You’ve identified one possible outcome through using a poor imaging technique. What about “false positives” (which is a major issue with mammograms). These often lead to biopsies. Which…erm…she…doesn’t like.

    Para 11: Not all lumps are cancerous. She, however, suggests that over a fifth spontaneously regress; could this possibly be construed as a “do not get treatment statement”?

    Her advice is dangerous; it is often inaccurate tripe mixed with some truth. At best it’s confusing, at worst potentially harmful.

    Your penultimate paragraph sums it up, really, recommending stuff, “she *believes* will do no harm and which *may* do some good”; you might have included “treatments without evidence of efficacy” and “which she charges desperate and very ill patients money for”. It seems to have passed you by that she frequently has a financial interest in the outcomes of the advice she’s giving (she charges
    for these treatments, the tests she recommends, consultations, chelation nonsense, letters etc) but doesn’t back it up with any actual reliable data.

    It’s not a witch hunt- she’s had years to make sure that her website is accurate and referenced, but chooses quackery instead. Rather than answer the substantial allegations made she screams witch-hunt and ducks the questions. It’s simply
    *daft* bahaviour.

  39. @CW

    In case there is any doubt that Dr Myhill’s advice is misleading and potentially dangerous I direct you to this discussion:


    To reiterate a point I have made many times over, the issue here is not just the dodgy info she has on her website, it is what this info suggests about her fitness to practise medicine. Do not forget that the GMC launched this investigation after two separate complaints, one of which has nothing to do with her website.

  40. @Jonas

    Thank you for directing me to the Badscience thread on errors in Dr Myhill’s website, which I had not seen, and I had not read more deeply into her website. With sadness, I think you are right. There are serious errors, and it is particularly unfortunate to mix such errors in among truths and part-truths, without carefully detailing how her advice differs from standard guidelines. In particular the comments on SIDS and on lung cancer (which I had not seen) seem capable of causing harm through web advice alone.
    Some people can write rather badly, and think better than they write.

    Perhaps on libertarian grounds, and for the sake of intellectual variety, there is a role for private doctors who offer idiosyncratic or anecdotally supported treatments to consenting patients.

    For a disease like CFS, this may be the only way to provide the human needs for a ceremony of treatment and the gift of hope.

    But such doctors surely have an obligation to detail where their advice differs from standard guidelines, to confine their practice to a restricted area where they can achieve significant relevant experience, and, above all, not do anything believed to be significantly harmful. The website doesn’t look good.

    @Sam Sewell

    A small point: I did not say that the GMC should wait until somebody got hurt, but:

    “…if there are specific allegations that she actually harmed patients, or that she has done things that are actually dangerous, then the GMC should investigate, as they would for any other doctor.”

    which is rather different.

    Second, what to do about the website? As some blog comments have said, watching the protests against the GMC’s action has been like watching a cult form… not good.
    For the GMC to publish a review of it would be more Machiavellian and more effective than suppressing it: it’s hard for someone to claim they are a martyr if the GMC has forced them to link to a review that points out in measured and sober terms that they have made (among many other mistakes) basic errors about the number of cells in the body, the structure of the kidney, have recommended obsolete treatments, etc etc. This would be considerably more embarrassing than having the website taken down.

    You say: “As far as the GMC publishing a review of her work, how about having Dr Myhill publish the research upon which some of the more ludicrous claims are based. She can’t, of course, as there is none.”
    I quite agree. All the more reason, perhaps, for the GMC to ask her to produce evidence. Actually this is a good idea: she has, after all, more experience in recommending nutritional supplements to CFS sufferers than anyone else in the country.

    You say: “So she recommends a treatment [thermography] which might be as rubbish, or worse than conventional mammography. You don’t seem to have a problem with her recommending an inferior diagnostic tool; Smashing!”

    In this case, I don’t have a problem with it. It is blindingly clear to the adult patient that thermography is not the standard screening procedure; in this case Dr Myhill makes it clear that her opinion differs from standard advice, and the patient can decide whether to accept her opinion or not. The reason for the opinion is clear: to avoid an X-ray. There is an enormous amount of information on screening freely available on the web and elsewhere. As far as I’m aware, patients are allowed to have no mammography at all if they wish, or to use divining rods if they prefer.
    I think we basically agree here, except that I am not shocked that some people will make a deliberate decision to go to an idiosyncratic private doctor.

    You say: “You’ve identified one possible outcome through using a poor imaging technique. What about “false positives” (which is a major issue with mammograms). These often lead to biopsies. Which…erm…she…doesn’t like.”
    Well, after a positive thermogram, the patient will visit an oncologist, who will smile pityingly/roll her eyes and require a mammogram before further investigation, which will only occur if the mammogram is positive. The number of false positives is necessarily less than for mammographic screening alone, therefore.

    You say: “Not all lumps are cancerous. She, however, suggests that over a fifth spontaneously regress; could this possibly be construed as a “do not get treatment statement”?”

    Sheesh, give the woman a break. Why would anyone not get treatment on the basis of single punchy unsupported statement of 22% spontaneous regression?

    You say: “Your penultimate paragraph sums it up, really, recommending stuff, “she *believes* will do no harm and which *may* do some good”; you might have included “treatments without evidence of efficacy” and “which she charges desperate and very ill patients money for”. It seems to have passed you by that she frequently has a financial interest in the outcomes of the advice she’s giving (she charges
    for these treatments, the tests she recommends, consultations, chelation nonsense, letters etc) but doesn’t back it up with any actual reliable data.”

    Er…how stupid do you think her patients are? You don’t have to have a medical qualification to detect when a doctor is suggesting a test for which they will then send you a bill. It is your decision, as a private patient, to decide if you want to pay for it or not. The reason that the (CFS) patients pay is that they are ill and desperate and they want somebody to sincerely try to treat them, which, I believe, she does.

  41. @CW thank you for some well thought out honest posts that look at both sides of the discussion re Dr Myhill.
    When you consider the number of times that she has been investigated by the GMC it is not surprising that it comes across as a “witch hunt”. Especially when there has been found, on 6 previous occasions, no case to answer. It could appear that someone has a vested interest in preventing her from continuing with her work. I have read on BS and on forums like this that the poor Myhillers, possibly with ME, are stupid and lacking in commonsense and are hood winked into paying exhorbitant amounts for quack treatments. Not so! We have choices and are free to make them at will. Many people are helped by her regime, some of these are among the 4100 who have signed in support an on line petition-they cant all be wrong. In my opinion the complaint by Jonas would have been “dead in the water” like previous ones had it not been for the other complaint by the Yorkshire doctors. Which quite frankly should have and could have been dealt with between Dr M and that drs practise had they contacted her personally to discuss it. Regrettably they did not and untruths were told and within the IOP Dr M was not given the opportunity to dispute/raise/counteract them. So we have to wait for a full hearing when it will all come out. Meanwhile a good dr has been the subject of an online campaign of abuse from people who should hang their heads in shame. Nothing of her public or private life is excluded and she has become “fair game” for ridicule in all areas. Plain point of fact is that the majority of the medical profession have failed people with illnesses like ME/CFS miserably and try to discredit the few drs who try to help. If these are the medics who we have to rely on to investigate such conditions for solutions then heaven help us all.

  42. For CW; from Dr Myhill’s website, quoting a previous encounter with the GMC and their advice to her in 2006 “it is not the place of the GMC to validate or otherwise comment on alternative medical treatments or make a statement on proper treatment for controversial disorders. The advice given to Dr Myhill was that she should use up to date well balanced material, avoid alarmist statements and avoid linking her views with unproven unlicenced medication which she or her associates sell on their website or by other means”. I suspect you will agree she has flagrantly ignored this recommendation.

    As to how stupid her patients are; reading some of the stuff on the support Dr Myhill website one could be forgiven for thinking that one or two are short of some very basic common-sense. You seem to imply it’s fine for a Doctor of medicine, which carries with it some degree of authority (which is recognized in law, hence various prima facie assumptions of inequality of bargaining powers etc in court), to make unfounded claims to their patients which fly in the face of evidence based medicine and advise their patients to take ineffective tests, unproven treatments and “magic minerals”. Since the effectiveness of some of the tests she offers is suspect, the results which even if accurate do nothing to identify either a cause or a course of treatment, taking money to perform them is, at best, dubious. At worst it could be construed as something of a con.

    A quack holistic chakra healer is one thing, but quack doctors shouldn’t be doing peddling nonsense under the auspice of being licensed medical practitioners; the licencing requirements for medics are stringent, and with good reason.

  43. leafy-lee said “In my opinion the complaint by Jonas would have been “dead in the water” like previous ones had it not been for the other complaint by the Yorkshire doctors.”

    On what grounds? If the website seems to contain potentially dangerous misinformation – and even CW appears to agree that it does, judging by the first paragraph of his last post – why wouldn’t the GMC have investigated it regardless of the other complaint?

  44. Heh, I shuld lern to prufe reed bettah.

    Last word for now for CW; the Badscience forum stuff is worth trawling though, I think nearly every angle of the debate has been covered multiple times. There are also links therein which refer to other comments by some former patients (which predate this kerfuffle) and show marked dissatisfaction with their treatment in the Myhill clinic.

    For Leafy-Lee, the statement , “Many people are helped by her regime, some of these are among the 4100 who have signed in support an on line petition-they cant all be wrong” doesn’t prove anything other than how easily 4000 people can be hoodwinked. Myhill has consistently misrepresented the substantial charges against her, focusing instead on the form of the complaints, claims of procedural impropriety, stirring up a storm in a tea-cup and seeking funding for her defense from her supporters and patients. She could, if she had so chosen, simply have corrected the erroneous website information, explained the confusion over the telephonic mis-diagnosis and recommendation for treatment. Instead she’s adding more nonsense to it. What a *splendid* manner to serve her patients.

  45. leafy-lee wrote:

    “Meanwhile a good dr has been the subject of an online campaign of abuse from people who should hang their heads in shame. Nothing of her public or private life is excluded and she has become “fair game” for ridicule in all areas.”

    This is demonstrably false. A quick perusal of the Bad Science forums will show a number of threads about various quacks. Most are about 5 pages long.

    The remarkable thing about the Myhill thread is how quickly her supporters joined in the fray (mainly because Dr. Myhill or one of her entourage posted the link to the thread). Myhill and her supporters have actually ensured that every page on her website is scrutinized and commented on. It stands to reason that we would make statements about her benefiting from the questionable tests and treatments which she sells to the desperate.

    Some of the posts on the Facebook page and at various other sites are frankly scary. Some people think that Dara O’Briain is “Jonas”. Others are trying to find out as much as possible about “Jonas” in order to subject him/her to a campaign of bullying. There have been numerous thinly-veiled threats posted.

    The biggest difference between “Bad Science” and the Myhill-supporting sites is the fact that there is no censorship on BS. However, any dissenting voices on Facebook or Phoenix Rising are ruthlessly expunged.

    The reason is simple: Your arguments don’t stand up to scrutiny. If they did, you’d welcome the criticism and engage in debate…

  46. Simon W is contradictory as has been pointed out. His practice, as far as I know, is to promote only psychological/behavioral treatment and, as far as I know, his cooperation with professionsls who take a more biophysical line is limited if non-existant.
    He wrote an article for New Scientist informing us that little understood (fatigue) conditions attract different names in different countries, with one speculative interpretation holding sway in one jurisdiction and a different one in another sometimes with according nomenclature. True enough as far as it goes.
    We learnt that the French have an ME like neuromuscular condition called spasmophilia. SW did not mention that the Czechs do too. And what have they found? That in a good number of cases spasmophilia patiients have low magnesium. Guess what? Low Mg is common in ME. Spasmophilia has been successfully treated at Olomouc University with Mg eplenishment. This might be worth a mention, perhaps, if only to show that spasmophiliacs may have an underlying treatable biophysical condition and that arbitrary names do not imply non existent organic pathology. Mg is no panacea for ME but can help some, and that might just be because ME is in many cases NOT spasmophilia, but then the different names would be fully justified and the pitch of the article queered. None of this is discussed (did SW do any research on spasmophilia?) and an ensuing opportunity to discuss whether the really important question as to whether our terms ME/CFS in fact cover anumber of different organic and/or psychological pathologies, rendering these terms of limited validity, was totally missed.
    It would have been nice to read the article and feel that SW as a scientist was making some serious attempt to blow away the cobwebs of foolish names and highly speculative interpretations, by taking seriously some of the biologigal findings on these differently named conditions.
    Instead many were left with the impression that his aim was to conflate nomenclature based on speculation as to organic cause with condition(s) and thus to suggest that if the nomenclature is subjective the condition might be too.
    I’m afraid many of us do not trust the guy and it is not all our fault.

  47. Only those who have had this wretched illness know just how crap doctors and the NHS are in dealing with it. They frankly haven’t got a bloody clue and even if you are diagnosed, all they offer is a choice of psychotherapy, physiotherapy or a graded exercise program – all of which are completely useless. I have had this bloody illness for ten years and have read every book I can find on it. Almost every one is pretty close to Sarah Myhill’s approach to treatment and it is significant that once skeptical doctors, who contract the illness, very quickly come round to the same point of view. See books by Dr Anne MacItyre and Dr Jacob Teitelbaum.

    It is easy to be skeptical if you haven’t got it and it is true that there are a lot of quacks out there. However, Sarah Myhill isn’t one of them, which is why her patiet’s are up in arms.

    I find it outragous that people with little or no understanding of this illnees – and that includes most doctors, can dismiss the opinions of over a thousand patients as deluded or wrong headed. The arrogant GMC will not even hear their testimony or even their letters.

    This illness can stike anyone and I guarantee that anyone who is currently critical of Sarah Myhill will soon come round to her way of thinking.

  48. Myhill has not had the right to a fair trial. I doubt the high court will look favourably on the GMC. They have also broken the data protection act and the freedom of information in the course of this case. Also, B12 injections are a well known and accepted treatment throughout the world for ME. Really we should be asking why the NHS does not support the use of them.

  49. By the way, for those who are interested, you can find what Simon Wessely has to say for himself on Skepticat’s blog here.

    This highly specious bit of nonsense (Skepticat) fails to mention that on 6th January 2011 the Interim Orders Panel, GMC, made the decision to lift the suspension of Dr. Myhill’s GMC registration and to restore the licence to practise medicine.

    In addition it fails to mention that in March a High Court hearing is scheduled to consider the GMC’s abuse of its powers in this case.

    Others may be interested in the BBC’s fairly eye-opening revelations about the activities of the GMC in a recent Radio 4 programme.

    Face the facts: Doctors in the Dock
    Is the General Medical Council the right organisation to regulate the medical profession?

    As I type you can still get it on – Listen again.

    These threads are fascinating for what people try to pass off. And Skeptikat… rubbish isn’t it????

  50. Since her April Hearing, Dr Myhill has conducted her own defence without any legal assistance. She pointed out to the GMC at her October, December and January hearings that the GMC had not presented any formal allegations or indeed any case against her – this the GMC is obliged to do by law. She did not even know if she faced criminal or civil charges. In the course of her defence Dr Myhill pointed out to the GMC that it had broken the law with respect to the 1983 Medical Act, the GMC’s own 2004 Fitness to Practise Rules and procedures, the Data Protection Act and the Human Rights Act. In particular it had abused her right to a Fair Trial, her right to Freedom of Expression and her right not to be punished without due process.

    Dr Myhill was particularly concerned because the GMC had taken patients’ NHS private and confidential medical records without patient knowledge or permission and in breach of the GMC’s own procedures. Furthermore, it used confidential information contained within those notes that it had no right to use.

    The GMC initially refused to consider evidence presented by Dr Myhill, it refused her right to call witnesses, refused to accept facts as facts and refused to accept that the accusing doctors had told lies against her. The GMC obtained and used documentation improperly, which is in breach of the Data Protection Act, it failed to give her adequate time to prepare her defence, failed to try her within a reasonable time, failed to take basic witness statements from complaining doctors, and accepted the most trivial of complaints to try and bolster their case. One such example of this was when the GMC upheld the most ridiculous of assertions against Dr Myhill. At her December IOP GMC prosecutor Gareth Branston presented Dr Myhill with the following complaint:

    “I think finally in the bundle, time-wise, you have an email from a JR to the GMC, which draws the GMC’s attention to an entry that is on the internet and as I understand it, it is on the Support Dr Myhill website concerning Dr Myhill’s assistance with the labour and birth

    concerning a pregnant family friend.”

    If the GMC had bothered to click on the link at the bottom of the Support Dr Myhill website page they would have seen a picture of her pet pig Rosemary and realised this was a spoof as indeed the heading ‘A Christmas ‘Tail’’ suggested. Indeed, at her hearing yesterday Dr Myhill wanted to inform the GMC of this error. However, when she tried to, she was prevented from speaking by the Panel. This constituted a further breach of the 1983 Medical Act in which the defendant has the right to be heard.

    Dr Myhill had planned to take the GMC to the High Court in December but this hearing had to be postponed because of the snow. It remains Dr Myhill’s intention to pursue her High Court action against the GMC on the grounds that it has blatantly infringed and broken the law and its own rules. As a direct result Dr Myhill, together with thousands of her patients, has suffered as a result of GMC maladministration. The GMC has imposed minor administrative sanctions of Dr Myhill’s practice but she expects to get these GMC face-saving gestures lifted at the High Court so she has a completely clean license to practise.

    Further information from:


  51. S. England, I have been reading Skepticat’s blog for more than a year now and not once has a comment disappeared – wonder how you get the idea that would change now? I was planning on letting you talk to yourself, but you seem so desperate for attention and I haven’t got anything to do this weekend, so here you have it:

    “If any of you are doctors… you should all be struck off.” – On what basis? Because you don’t like their opinion?
    This blog post is alsmost a year old, why should it need to mention that the ban was lifted last month?
    Why do you think a personal blog needs external funding? I don’t know how much traffic Skepticat gets, but usually blogs aren’t super-expensive.
    Martin Pall’s theories are far from being accepted or even found plausible – if they were they would have been published in a high quality journal with peer review rather than ‘Medical Hypotheses’.
    How do you decide what is “useful reading”?
    Finally, who is “we”? Does it really take more than one person to patrol the comments of a blog post that nobody but you really cares about?

  52. Thanks, Vicky. It looks like S. England was just another drive-by drunken ranter but just in case “they” are monitoring:

    S. England said,

    “This highly specious bit of nonsense (Skepticat) fails to mention that on 6th January 2011 the Interim Orders Panel, GMC, made the decision to lift the suspension of Dr. Myhill’s GMC registration and to restore the licence to practise medicine.”

    If only I’d known I could have included it in the article. Unfortunately, my crystal ball let me down on 30th April 2010, when I wrote it. As it happens, I’d forgotten all about Dr Myhill until S. England’s comments (why do ranters always do several posts in rapid succession – can’t they engage brain before hitting ‘submit’?). I had no idea what’s been happening. I do now, though, having done a bit of research on the website you helpfully linked to.


    Here’s a quote:

    “In considering the protection of members of the public and the wider public interest, the Panel is satisfied that, based on the complaints made, and the concerns raised, there is sufficient information before it to indicate that there may be impairment of your fitness to practise and that such impairment may pose a real risk to patients and to the public interest.”

    The panel decided that the requirement to protect the public could be met by replacing the current interim order of suspension with a list of 9 stringent conditions, which would seem to address the issues that gave rise to the complaints about Myhill in the first place. In a nutshell, Myhill can continue doing what she’s good at but can’t do all that she was doing before and she will be very closely scrutinised for the forseeable future.

    That seems like a good compromise to me and I’ve no idea why S. England (and, of course, all the rest of them who “will be monitoring”) would think I would object. But then I’ve noticed that, though this blog post gets more hits than most others and has been mentioned on Myhill’s facebook support page, none of Myhill’s supporters have ever actually engaged with the arguments I’ve expressed.

    I guess that’s asking a bit much of the poor dears.

    By the way, I fund this blog by cracking open my piggy bank at Christmas. It just about covers it.

  53. The original post seems pretty fair; clearly Dr Myhill was giving out advice on matters she wasn’t qualified to do so and deserved her reprimand.

    Does this mean she doesn’t know what she’s talking about on other topics? Not necessarily.

    She had an article on mitochondrial dysfunction published in the International Journal of Clinical and Experimental Medicine, which shows she has some teeth. The editorial board on the journal looks pretty weighty to me (http://www.ijcem.com/editorial_board.html), so clearly there are some serious doctors out there who don’t think she’s full of hot air.

  54. I stumbled apon your blog as a ME sufferer, recently advised to contact Sarah Myhill regarding my ‘imaginery’ symptoms. I am not a medical person, or an academic, but am merely searching for some more satisfactory answers to the very real day to day problems I have to face. Obviously, I am now rather wary of following this lead further, but have found your dialogue interesting & rather amusing at times – so I thank you & wish you well.

  55. Any idea why Professor Wessely is appearing at this lot’s conference? That’s right, the College of Medicine. Go to , and click on ‘speakers’, and you’ll find him there.

  56. Bit late on this one, but I note in addition to CW comments that the GMC procedures have often been criticized both by those exonerated and those not, and on some occasions by the legal profession.

    I suspect an organized campaign against certain doctors, at least I wouldn’t rule it out, and I’d probably take part. In particular a number of cases before the GMC raised by non-patients suggests there might be activity, but it is hard to be confident that it isn’t just business as usual.

    The slow speed and inadequacies of the GMC process may be turning what is a well meaning campaign against suspect doctors into what looks like a witch hunt.

    The recent GMC activity surrounding Dr Skinner was a key point, where the GMC restarted procedures over allegations they had received before their previous action against Dr Skinner. They quickly realized their mistake when Dr Skinner’s legal team pointed it out to them, but with a regulator with such a poor track record it is hard not to feel sympathy for some of those who are called before it.

    There are balances to be struck, between allowing unorthodox opinion and preventing unsafe medical practice. It is never going to be an easy line to draw. Although where a doctor is in disagreement over a broad range of medical claims, rather than say one specific area, it must be a big red flag that it is the doctor, not the prevailing opinion that is in error.

  57. Paul; Saturday 9th December 2017.

    Dear All,
    I have only just seen your blog. I am a patient of Dr. Myhill’s.
    I was diagnosed with Somatization 17 years ago for the same symptoms most recently diagnosed as D-Lacic acidosis without short bowel syndrome (yes it exists and I believe a possible cause of ME/CFS and corroborated by a number of authors including a psychiatrist in the ‘Journal of Translational Medicine 2017’ that examines the similarities between D-Lactic acidosis and ME/CFS based upon findings of high levels of D-Lactic producing Bacteria in CFS patients).

    Dr. Myhill had asked for Blood Gasses to be performed and believed that I may have Bacterial Overgrowth and also an immune disorder. She was absolutely correct, but no local doctors took any of this seriously and A&E never performed Blood Gasses in the 17 years that it took for me to obtain a diagnosis.

    I suffered frequent neurological symptoms for many years and was very unwell at times with breathing difficulty, slurred speech and confusion, abdominal pain, muscle weakness, fatigue and even seizure.

    I must have seen several neurologists and at least two of them went with the original Somatization disorder that had been given instead of treatment.

    I believe that at least a percentage of patients who have ME/CFS may have symptoms similar to my own caused by Bacterial Overgrowth, which Dr. Myhill has been advising and writing about including Bacterial Overgrowth and D-Lactic symptoms (which she notes can be caused by antibiotics alone, which can select for Bacterial Overgrowth through resistance and destruction of symbiotic colonies).

    I first thought of Dr. Myhill as ‘Fringe Medicine’ and some of her ideas did not fit with anything that I had imagined could be true and I started off dismissively. But everything that she has predicted has been proven correct.
    I now think of her as leading edge medicine.

    Wessely has made a number of groundless statements including establishing a lack of relationship between hyperventilation and CFS. I suffered with frequent hyperventilation during exaccerbations of D-Lactic acidosis. Hyperventilation is an autonomic response to acidosis.

    I was close to suicide at the time that Somatization was diagnosed because I could not endure the frequently painful and traumatic symptoms. I was helped by Dr. Myhill and Professor Malcolm Hooper who also gave me hope and strength as well as advice that has greatly helped and led to both diagnosis an treatment.

    I have found that many of the statements made by Wessely have been incredibly dangerous to patients like myself with real illness, which has led to the prolonged failure to diagnose or take my condition seriously because it looks much like ME/CFS and has many of the same neurological symptoms that ME patients have complained about for decades.

    I was offered CBT and GET which could have greatly worsened my illness.

    For psychiatrists like Wessely to make such absolute proclamations as Somatization in ME/CFS, demonstrates a delusion that psychology or medicine has absolute knowledge and understanding (which can be found throughout history as a shamanic belief dependent on subjective influence) that can only damage to Psychology which aims to act as a Science. If Psychology is found to be wrong concerning ME/CFS it could have significant repercussions for the integrity of Psychology.

    I think that it is time that the NHS, Psychiatrists and Doctors start to listen to what Dr. Myhill and a number of others have to say concerning ME/CFS.

  58. Dear All,
    As per earlier Blog, I am an ME/CFS patient who has recently been diagnosed with D-Lactic acidosis after a 17 year delay in diagnosis due to misdiagnosed Somatization Disorder. I will provide some extremely robust evidence that backs Dr.Myhills claims concerning ME/CFS. The same authors have recently republished an updated version, but the abstract below should suffice.

    2009 Jul-Aug;23(4):621-8.
    Increased d-lactic Acid intestinal bacteria in patients with chronic fatigue syndrome.
    Sheedy JR1, Wettenhall RE, Scanlon D, Gooley PR, Lewis DP, McGregor N, Stapleton DI, Butt HL, DE Meirleir KL.
    Author information
    Patients with chronic fatigue syndrome (CFS) are affected by symptoms of cognitive dysfunction and neurological impairment, the cause of which has yet to be elucidated. However, these symptoms are strikingly similar to those of patients presented with D-lactic acidosis. A significant increase of Gram positive facultative anaerobic faecal microorganisms in 108 CFS patients as compared to 177 control subjects (p<0.01) is presented in this report. The viable count of D-lactic acid producing Enterococcus and Streptococcus spp. in the faecal samples from the CFS group (3.5 x 10(7) cfu/L and 9.8 x 10(7) cfu/L respectively) were significantly higher than those for the control group (5.0 x 10(6) cfu/L and 8.9 x 10(4) cfu/L respectively). Analysis of exometabolic profiles of Enterococcus faecalis and Streptococcus sanguinis, representatives of Enterococcus and Streptococcus spp. respectively, by NMR and HPLC showed that these organisms produced significantly more lactic acid (p<0.01) from (13)C-labeled glucose, than the Gram negative Escherichia coli. Further, both E. faecalis and S. sanguinis secrete more D-lactic acid than E. coli. This study suggests a probable link between intestinal colonization of Gram positive facultative anaerobic D-lactic acid bacteria and symptom expressions in a subgroup of patients with CFS. Given the fact that this might explain not only neurocognitive dysfunction in CFS patients but also mitochondrial dysfunction, these findings may have important clinical implications.

    PMID: 19567398

  59. …To an objective bystander like me, the idea that GMC members themselves are conducting a witch-hunt seems a bit silly. If someone submits a complaint, they can’t just say, “Flaming Norah! Not this woman again. Look, we’ve already thrown out a number of complaints about her already so let’s not waste time on any more.”

    A bit more plausible is the idea that the complainants themselves are conducting a witch-hunt: a bunch of people don’t like someone so they take turns to make vexatious complaints to the employer, regulatory body or whatever. But why would they target a doctor that helps people and harms nobody?…

    This argument would have a bit more strength if it were not for the fact that witch-hunts are exactly how humans behave.

    I know of NO establishment organisation that does not suppress ‘non-standard’ attitudes as a default. The scientific world is full of examples, from
    Alfred Wegener to Marshall and Warren.

    In this world of excessive and misleading data, we all need a default position to work from. In most cases I start by looking at where the money is coming from, and a doctor who runs her own supplement shop is immediately suspicious. If I were going further down this road I would look at her company profits to get a feel for the size of the temptation that this must bring.

    But in this instance I am also struck by the quality of the accusations that have been levelled at Dr Myhill. There have been many such. Typically, they claim that she does not follow current medical thinking. I do not see this as a justifiable accusation. If she were actually damaging patients then surely one of her accusers could have produced solid evidence for this? That they have not is a strong point in her favour.

    I do not believe it is sufficient to claim that ‘not following current medical practice’ is in itself dangerous. The patient is surely central in deciding what course of treatment (if any) to follow. Patients should certainly be well-informed about all available treatments, but to try to suppress non-standard treatments on no other ground that that they are not ‘conventional’ is oppressive.

  60. Well, I have the most utmost respect and support for DR Sarah Myhill.
    There have been other doctors that got into Hot Water for mentioning problems concerning vaccines and dangerous results. The action for chasing these doctors for this seems way over the top for their concerns. I thought it was everyone`s right to their own opinions. And why anyone should be stopped in their research is beyond me.
    I am aware of certain discussions concerning certain vaccines, but I think both sides should be openly encouraged to speak their minds.

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