Thursday, 27 May 2010

Dr Myhill at the International ME Conference

I found Dr Myhill's conference report very helpful in translating science down to my level. I can't agree with her that it is less important to find causes of ME than treatments for it (treatment being her own field) - I am just very glad that there are people focusing on both. We are very very lucky that people like Dr Myhill are working on treatments. However, I have not given up hope of a cure, so I place a lot of importance on research into causes too.




Here's the report:


May 26th 2010 - Invest in ME International - 5th Conference
A summary of the day and implications for treatment


Speakers: Professor Leonard Jason, Professor Norah Chapman, Dr John Chia, Dr Paul Cheney, Dr Jonathan Kerr, Dr Nancy Klimas, Professor Brigitte Huber and Doctor Judy Mikovits
The role of viruses in CFS/ME

The emphasis of this conference was very much on viral causes of chronic fatigue syndrome / ME and the immune responses that go with that. Much discussion went into the classification of types of ME by various sub-groups particularly by Professor Jason and Dr Kerr, but my view is that at present this has little implication for treatment. Norah Chapman concentrated on cocksackie B infections, Dr John Chia on enteroviral infections, Brigitte Huber on retrovirus HERV K-18 (which we all have in our genome) and Judy Mikovits on the new XMRV virus. All these viruses are implicated in cases of CFS/ME but what makes the difference between a short illness and recovery and illness and prolonged CFS is the response of the immune system to those viral insults. Studies show the virus continues to be present albeit at very low levels and because the virus is at such low levels this explains why many tests do not pick it up - it is simply below the level of the radar.

However this low level viral persistence may result in chronic inflammation in susceptible individuals wherever that virus happens to be and this would explain many of the symptoms of CFS/ME. So for example Dr John Chia found that in 165 patients with CFS 82% had high levels of entrovirus in the gastric antrum of the stomach. Norah Chapman found low level infection by defective cocksackie B viruses in non-dividing cells in particular muscle cells (including the heart muscle) and by implication brain cells (because these enteroviruses persist in non-dividing cells). Brigitte Huber showed that HERV K-18 MRNA levels are higher in CFS patients. Judy Mikovits of course has demonstrated the presence of XMRV infection in 67% of patients diagnosed with ME/CFS compared to 3% of normal controls.

What this tells us is that patients with CFS/ME are not good at dealing with viral infections, they do not eradicate them efficiently and this viral DNA gets in the way of cell metabolism causing a low grade chronic inflammation which means cells malfunction.

The most important point about all this wonderful work is that it clearly establishes CFS/ME as a physical disorder with physical lesions and physical treatments.
The clinical picture
John Chia made the point that enteroviruses are the commonest cause of 'flu-like symptoms. Enteroviruses may be picked up as a result of travel, water sports, gut infections or from local epidemics. He specifically mentioned vaccinations and allergies as risk factors. The way to diagnose an enteroviral infection is first of all to have an high index of suspicion! 'Flu-like symptoms that persist for more than two weeks are highly suspect, but blood testing for antibodies can be misleading. There are often few physical signs, perhaps some ulcers on the tongue, possibly lymphadenopathy and tenderness of the abdomen particularly in the epigastrium, left iliac fossa and right iliac fossa. Sometimes there is sinusitis, colonic inertia and pelvic pain.

How well one deals with the virus depends on whether the immune system is in a state of Th1 or Th2 activation. If one is in a state of Th2 activation one will struggle to get rid of the infection and this state is characterised by allergy, female sex hormones (pregnancy, Pill, between menarche and menopause - ergo women are much more susceptible than men), excessive exercise, vaccinations or another recently acquired infection.

So for example Professor Huber pointed out that we all have HERV K-18 (indeed 8% of the human genome is made up of retrovirus) but the expression of this is induced by Epstein Barr and herpes virus, this activates virus in a way to produce a super-antigen which results in massive T-cell activation, i.e. inflammation. Epstein Barr virus is particularly good at doing this.

An awful lot of the discussion of the day revolved round immune responses to virus. My interest of course is in getting patients well and I have to say I dozed off during some of these discussions - partly because I'd had a 4am start and partly because I don't see the relevance of esoteric immune discussions when it comes the business of getting patients well! I see the immune system as the army of the body and all the various players have army equivalents. So natural killer cells are our soldiers with machine guns, B-lymphocytes and T-lymphocytes are the messengers rushing around telling everybody what to do as well as lobbing cytokines and antibodies - our bombs and grenades. In chronic fatigue syndrome much of this activity is self destructive - it's as if the army can't stop fighting foreigners and has embarked on a civil war.

What is clear is that the total load of virus during the early phases is critical. Indeed this is well established in HIV infections. The above issues do of course have implications for treatment and this is how I see it all fits together.
During the acute stage
Treatment of the initial viral infection

Keeping viral numbers down helps a lot. Viruses are killed by fever, one should rest up in bed to allow the immune system to be active, take high dose vitamin C which effectively kills everything in the gut - indeed in high doses this will cause diarrhoea and strip out virus yeasts and bacteria generally in the gut. An acid stomach will be protected against enteroviral infection because acid will kill virus. Do not take symptom suppression medication which reduces fever and pain because these are useful symptoms which kill virus - see Viral infections - avoid them and treat them aggressively.
Interventions to reduce inflammation
Inflammation is highly desirable in the early stages of viral infection but after two weeks probably counter-productive. Nutritional interventions to reduce inflammation will be very helpful. The problem with Western lifestyles is that with their high levels of sugar and refined carbohydrate, lack of sleep, lack of sunshine, chemical, physical and mental stress etc. they tend to be pro-inflammatory. This predisposes us to states associated with chronic inflammation - see Inflammation. All this will tend to be made worse by having poor antioxidant status - this is a disease-amplifying process - poor antioxidants means more free radicals means more inflammation. See http://drmyhill.co.uk/wiki/Antioxidants

During the chronic stage
http://drmyhill.co.uk/wiki/Summary_of_my_approach_for_CFS_/_ME_sufferers.
Oxymatrine
John Chia looked for Chinese herbs which had anti-viral activity - the idea here is to try to get rid of those last few viral particles that were causing so much havoc in terms of chronic inflammation. He came up with oxymatrine which he has now trialled in 500 ME/CFS patients and seen beneficial effects in 52%. In the short term this can increase symptoms, but in the medium term beneficial effects were seen in 52%. In a few of the responders and non-responders in which he measured cytokines gene expression there was an increase in the IL12/IL10 ratio in 7/7 and no increase in any of the 10 non-responders. Again those that responded showed low levels of enteroviral protein in stomach biopsies. This suggests that oxymatrine is useful in half of patients with chronic and low grade viral infections. Dr Chia has made up his own product Equilibrant which contains the active principle oxymatrine and recommends starting at one daily, gradually increasing to 3 twice daily according to clinical response. Expect to get worse initially, hence the need to start with low doses and build up slowly. My guess is Equilibrant will be more effective if the basic work up to treating CFS is followed (as in summary approach above!).
Paul Cheney and heart problems in CFS
I have already written extensively about Paul Cheney's work in chronic fatigue syndrome and how he demonstrates it is a symptom of low cardiac output - see http://drmyhill.co.uk/wiki/Dr_Cheney_on_heart_function and Patent foramen ovale as a cause of fatigue.

Essentially people with CFS have diastolic dysfunction. Let me explain. One would think that the hardest job of the heart was the business of pumping blood round the body as it contracts. Interestingly this is not the bit that goes wrong in chronic fatigue syndrome. What goes wrong is the ability of the heart to fill with blood during the relaxation phase. This doesn't happen properly and it is called diastolic dysfunction. Essentially the heart muscle is stiff and doesn't relax so the heart doesn't fill with blood properly and therefore there is less available to pump around the body. So this begs the question why is the heart muscle stiff?

In order to contract, muscle needs calcium. In order to relax it needs magnesium and we know magnesium deficiency is pretty much pandemic in CFS. Magnesium is also necessary in oxidative phosphorylation in order to make ATP, furthermore it is also necessary for ATP to release its energy and be converted to ADP. So magnesium is centrally important in energy production and muscle function in the heart.

I see the heart as working like a coiled spring but in a rather counter-intuitive way. During relaxation energy is required to pump calcium out of cells and drag magnesium into cells. This is a little bit like charging up a battery with electricity. When the heart contracts this is triggered by a bolt of lightening as calcium suddenly influxes back into cells and magnesium out - indeed this bolt of lightening is the energy by which this process happens. So relaxation is coiling of the spring and contraction is its release - as I say rather counter-intuitive!

Mitochondria are centrally important in this diastolic dysfunction. I have to say that if I were Paul Cheney and delivering his lecture I would find it impossible to give the lecture without discussing mitochondrial function. Afterwards when I spoke with him he agreed that mitochondria are likely to be centrally important in diastolic dysfunction.

This low output cardiac state explains a great many of the symptoms of chronic fatigue syndrome from low blood pressure, postural orthostatic tachycardia syndrome to low energy levels, lack of stamina and foggy brain.

There are further complications to this low cardiac output state - if the ventricle of the heart doesn't fill properly the heart responds by trying to squeeze more blood out of it to maintain blood pressure. This intense constriction can collapse the left atrium in a process called cavitation. When this happens blood is sucked from the right side of the heart and can blow open patent foramen ovale. When this occurs of course blood is shunted from the right side to the left side, doesn't pass through the lungs and oxygen levels can drop precipitously. So a patent foramen ovale again is a symptom-magnifying process that occurs downstream of poor mitochondrial function - again see Patent foramen ovale as a cause of fatigue.

So heart pathology is centrally important in chronic fatigue syndrome and the treatment of course is to address mitochondrial dysfunction.
Conclusions
A very worthwhile day! Professor Malcolm Hooper chaired the whole day and ran an excellent question and answer session at the end of the day. He brought the discussion back to reality by asking pertinent questions of the Panel of speakers about implications for treatment and this gave me a chance to explain the importance of mitochondria and how they explain many of the facets of CFS/ME. Let's face it - every living cell needs to be powered by energy! This explains the great many symptoms we see in CFS. I will give you some examples:

Foggy brain - the brain weighs 2% of body weight but consumes 20% of the total amount of energy of the body! No wonder cognitive function in CFS is slow. See http://drmyhill.co.uk/wiki/Brain_fog_-_poor_memory,_difficulty_thinking_clearly_etc

Light intolerance - the retina is part of the brain and this consumes more energy than any other part! No wonder there is light intolerance - there just is not the energy needed to process!

Heat intolerance - the skin is the largest organ of the body - to lose heat we need to pump blood round the skin - CFS patients just do not have the cardiac reserve to do this - they cannot tolerate hot days. See
http://drmyhill.co.uk/wiki/CFS_-_The_Central_Cause:_Mitochondrial_Failure#Low_cardiac_output_explains_the_symptoms_of_CFS

Understand what is going wrong and you have the key to treatment! This Invest in Me day helped us all to understand better the underlying processes that result in CFS/ME.

Monday, 24 May 2010

Fifth International ME Conference

is today.

Next year I promise myself I will marshal my physical, mental and financial resources and attend.

A very brave group are also planning a march today, so good luck to them and thanks for acting on behalf of so many others with the disease.

I'm thrilled to see that this year's conference is going to be available on DVD - I'll for sure be ordering myself a copy, and so9 able to take in all the information in 'manageable chunks'. This is a very thoughtful move on the part of the organisers, as many with ME have concentration problems - I know I find that after a while words simply turn into noise, lodging no meaning or lasting impression in my brain.

And a heads up for next year - if anyone with a non-ME brain and body fancies attending, I'm going to be looking for a partner to attend with (or to go without me if I have a flare and can't go), and to help write up the conference afterwards.


Wednesday, 12 May 2010

How did I get here...?

This is a post I've been putting off writing ever since I started Wood of Thorns. It should logically have been the first post - how did I get ME? Obvious, really.

Somehow, I've always found an excuse not to write it - too self-indulgent, perhaps, not as important as linking to new information about the condition, so much other information to get out...and all of that is, of course, self-deceiving bobbins. I haven't written about how ME entered and smashed up my life because thinking about my life pre-ME, how much I loved it, all the possibilities I thought I not only had but would always have - hurts. It hurts a lot. Admitting that it's gone, and isn't coming back, still makes me want to roll about on the floor like a toddler in a tantrum yelling "it's not fair!!!"

However, it's Awareness Day and I'm all out of excuses, so here goes.

My answer to those who assert people invent ME for themselves to escape from their horrible lives is just this: my life the month ME arrived was sweet. It was so bloody sweet that it hurts to remember it.

It was Autumn but the garden was still full of late roses. I loved that garden. My new(ish) partner and I had moved in together in the Spring. We adored the house we were renting - we admitted to ourselves that we secretly hoped one day to buy it, once we could afford it. The joy and excitement of having a new partner (now my husband) hadn't faded an iota by Autumn, it was simply enhanced by a growing sense of deep contentment. We had begun to talk seriously about starting a family.

I had a job I loved - working in the Historical Record Office at Huntingdon. Who would have ever thought my History degree would come in useful for work? I loved the people there, the work fascinated, I loved the smell of the old documents and brand new storage boxes. It seemed seriously possible that my employers would support me in studying for a full Archivist's qualification.

Physically, I was fitter and thinner than I had been in years (I know, way to be shallow, but I do miss it!). In 2003 I'd taken part in a 100km sponsored trek in Iceland, fund-raising for Macmillan. By 2005 I was no longer quite at that level of fitness but I was doing pretty well. After all, m,y job required me to run up and down stairs a dozen times a day, as well as climb ladders and lift boxes/books. I was wearing size 10 clothes (hard to imagine for anyone who has only ever seen me weighing in at my current size 18).

Then I got flu.

That's it.

One of those hard, fast, 72-hour flus. (Tests said it was 'influenza B, if that means anything to anyone.)

And I never got better. I seemed to simply stay in the aftermath stage anyone who's ever had real flu will recognise - exhausted, aching, head full of mist and glue, dizzy, sick, sweating, weak as a kitten, sore throat, swollen glands. I felt almost exactly as I had when suffering from glandular fever, but tests showed it wasn't that this time. Trouble was, they didn't tell me what it was.

My GP did her very best to help. Come December, I was still signed off work with 'post-viral fatigue'. My doctor told me she suspected ME, but that couldn't be diagnosed until the symptoms had persisted for six months.

In January, I tried to return to work. Major mistake. The people I worked with couldn't have been lovelier - but my employers, the County Council, couldn't have been less help.

I was supposed to try a slow and gradual return to work, one that recognised I might at first manage no more than an hour a day. All the physically-demanding aspects of my job were to be set aside - I wasn't to climb ladders, fetch anything from the downstairs document storage (the office where I worked was on the first floor and there was no lift). No lifting at all, ideally. This, I hasten to add, was the recommendation of the Council's own medical staff, by whom anyone longterm sick had to be reviewed.

I'd been prescribed amitriptyline to help with pain and disturbed sleep issues. It did help somewhat, but taking it at night left me muzzy and 'out of it' most of the morning - certainly unfit to drive to work. So I was to try working in the afternoons.

Did I say my employers were unhelpful? What I actually mean is, they were fucking evil.

Within a fortnight, there was pressure to know when I would be back up to full hours. No chance was lost to make me know how hard I was making life for my colleagues by not 'pulling my weight'. The Record Office had only 2 spaces allocated for 3 employees in the car park next to it - and they refused to allocate one to me, meaning I had to park in a public car park ten minutes' walk away - by the end of a 40-minute drive and then that walk I was generally ready to collapse and go right back home. I started simply parking my car on the pavement outside - if I got a ticket I'd just have to deal with it.

Of course, the Council's doctor had recommended urgently that I be transferred to the Cambridge Office, which I could reach without a long drive - I could,in fact, drive to a Park and Ride 2 minutes away from home and get a bus that stopped outside - and which had a larger staff which would be less impacted by my shortened hours and reduced abilities. Without the long journey,I would hopefully be able to work more hours. One of the staff in the Cambridge Office would happily have job traded with me, since she lived in Huntingdon...or I could be transferred to a different department for desk-only duties.

But my employers wouldn't do this. Don't ask me why they insisted I saw their doctor then ignored his decision and recommendation. The obvious reason seems to be the true one - they did not want to abide by their own code of conduct with regard to a severely ill employee, so they made life so difficult that I would quit. This is a County Council that employed literally thousands of people, but I was asked to believe there was not a single department to which I could be transferred to do less physically-demanding work.

The predictable happened - I got iller and iller and relapsed. And in the middle of all this, my grandmother died, causing my mother to become very ill indeed - and I had to keep travelling to Cheshire to try to help. My doctor was now diagnosing me with ME for certain.

Just to repeat that - my doctor made that diagnosis. I had barely heard of ME. I don't know where this public fiction of crazy ladies self-diagnosing with ME then 'doctor-shopping' till they get one who will agree, comes from. I can tell you, it's a hurtful and insulting image - insulting not just sufferers but their doctors.

At this point I decided to let my employers win, and I left my job. I was too damn tired for a fight - every ounce of energy was being spent just on getting to and performing those limited hours of work while being subjected to constant pressure. There was no life left outside that, for me or my partner (who was now my fiance, brave man that he is). Yes, reader, I quit. It seemed that it was a clear choice between fighting to stay employed and making myself iller every day, or giving in and trying to get better. Except for the occasional proof-reading contract (and a tiny joyful time writing for a children's book on dinosaurs) I haven't worked since.

Oh and - I also have never claimed a penny in benefits between then and now. Cowardice again - I have met too many made sicker by fighting the benefits system, and we decided that we would rather stay a bit poorer than have our lives revolve around a constant fight and series of aggressive reviews. I had the luxury of that decision, courtesy of my 100% supportive partner. Many don't. I really believed then that if I gave myself a year, really focussed on getting better,I would recover - at which point I would go out and get myself another job.


I noticed an odd thing, after I left work. I became invisible. I was no longer part of any 'system'. While I was still employed, my health was regularly monitored, because I needed to be certified as fit or sick for work. Once that was no longer necessary, there were no review appointments to see if I were better, sicker or the same. I didn't require check-ups to assess my entitlement to benefits, because I didn't claim any. And so, my health simply fell into a black hole. I started doing my own research into this weird condition I was told I had.

One result of this was that as Summer approached (I'd now had ME in my life for about 9 months) I went to my GP explaining that I felt as ill as I had back in the Autumn, and asked if I could be tested to rule out any non-ME possibilities such as lupus. By now I was desperate to know what was wrong, what was happening to my body, concentration levels, life.

I was sent to Addenbrookes to see their 'ME specialist'. I do wish I could remember the name (I suppose I should request my records). I had bloodtests, scans, x-rays...and there was nothing to explain what was wrong. It was officially official - I had ME. As you might expect, one of my first questions was 'so what does that mean - I mean, how long am I likely to take to recover?' Because still no one had told me that you don't recover. And the specialist said:

"You will be completely recovered in one to two years. Anyone who thinks they have ME for longer than that has a mental problem not a physical one."

On the basis of this inaccurate and irresponsible statement, we decided to stay in our beloved house and break into our savings to pay my share of the rent. Because, after all, it was only for two years at the most! We could just about manage that, and once I was back at work we'd pick up where we had left off in Autumn 2005.

In the meantime, I asked my GP if it might be possible to see someone for dietary advice, as many people seemed to have managed to reduce their symptoms by changing diet, checking for allergies and intolerances, etc. My doctor regretted to advise me that I stood no chance of being referred for this - 'if you're not diabetic, you'd wait years'. But she did have one thing she could offer me. She could send my for Cognitive Behavioural Therapy. Lucky, lucky me.

CBT really is a whole 'nother post, so I will be brief about it here. It did not 'cure' me. It did not cure anyone else in the group that I know of (one member was doing it for the third time - did no one see that she wasn't cured?). I wondered frequently which sadistic bastard had decided to hold it on Friday afternoons when some members of the group were still struggling into work for reduced hours and could be pretty much guaranteed to be at their most knackered and ill by Friday afternoons...CBT did, among a lot of twaddle, teach some useful coping skills, especially those closely related to pacing. At the end of the course I was as ill as when I began, but I had some tactics for working 'round' my condition. It wasn't 100% unhelpful,it just isn't in any way curative. No one in the group I was in bought into any bullshit about us having 'inappropriate illness beliefs' and the group leader didn't push it (perhaps because he knew the room would be empty the next week if he tried).

And that was - well, almost it.


It's now 2010. I am not back at work. My physical condition is a little better than it was then -I don't spend half of every day in bed - my concentration and coordination levels are much worse, almost as if there has been an odd kind of trade-off. Dizzy spells have recently added their unique contribution to the ever-changing feast that is ME. I have not been able to drive for the last three years. I have entered peri-menopause and the baby my now-husband and I talked about will never happen.

And my 2005 life shimmers like some luscious, irresistible thing that I once had and can't ever have back. So forgive me, if most of the time I try not to look back at it. Or too far forwards.

Friday, 30 April 2010

Plus ca change...

There's just no dealing with ignorant people is there? Quoting below a charming comment posted in response to an article reporting the outcome of Dr Myhill's IOP hearing yesterday. I remain stunned by the hatred people like this can feel for sick people.

If this was a game of 'ignorant bastard bingo', this guy's scorecard would be full. I don't think they miss a single misconception, untruth or prejudice.

"CFS and ME are designer diseases that only affect the cosseted, educated worried well of the Western World. These 'diseases' are completely unknown in the Third World, even when malnourishment, parasites and social deprivation abound. If you remove these factors in the Third World, the recipients blossom like flowers in the desert. It makes me mad that so much resource is poured out on these deluded people, who virtually ALL need prolonged psychiatric help or cognitive behavioural therapy, not vitamins and yet more expensive tests. The arrogance of denial and insistence on their 'rights' gets up my - and I suspect most - people's noses.

The one thing in common with most CFS and ME sufferers is the enormous energy they have to spend time talking about their disease, researching everything there has ever been published about it and how they 'feel'.

Thursday, 29 April 2010

Today is Dr Myhill's hearing

Dr Myhill's presentation to the GMC will be available on line at 9.30am Thursday April 29th.


Please follow events if you have the time. Dr Myhill is recognised as one of the UK experts on ME. It seems a remarkable coincidence, then, that the GMC (yes, the same GMC that has had its own files on ME locked up under FOA exemptions until 2071) is so eager to shut her up that they have acted in this case on an initially-anonymous enquiry about making a complaint to drag her to a seventh hearing (the complainant has since identified themselves on the Bad Science website, essentially saying 'what a laugh, the GMC grabbed the chance offered them when I sent a badly-typed and speculative email asking if it were worth complaining again after all previous complaints had been dismissed, and are forcing her to a hearing').

The GMC have refused to seek a declaration of interest from the complainant.

The GMC initially gave Dr Myhill one day to respond to allegations. As she says, has she simply been out of her office that day, she would be Mrs Myhill now. If you want something to compare that to, I believe Harold Shipman was offered four week to prepare his defence.

The GMC have refused a request to have the proceedings recorded by video camera. Said request was made (a) because so many wished to attend the hearing, but the GMC refused to provide extra space and (b) the GMC has an unfortunate habit of losing documents in Dr Myhill's case.



UPDATE: here is Dr Myhill's defence as presented by her this morning. I'm making no apology for posting it in full

Dr Myhill defends her case at the General Medical Council Interim Orders Panel hearing

My Background

I come from a large family of doctors and indeed my grandmother was one of the first lady doctors. I was brought up with an analytical approach to medicine, which emphasised diagnosing the causes of disease rather than merely the prescription of drugs to treat the associated symptoms. This sparked my interest in a branch of medicine which looks for the root causes of disease and uses diet and nutritional supplements to treat those root causes. We call this Ecological Medicine and in 1979 the British Society for Ecological Medicine (BSEM) was founded. It is made up of practising GPs and consultants with similar aims. Shortly after I qualified as a doctor in 1981, I joined this Society.

Between 1992 and 2009 I was the Honorary Meetings Secretary of the BSEM and for the latter ten years of my tenure I was also the Honorary Secretary . During that time I organised biannual scientific conferences, a five day international conference at Oxford together with training days for other doctors – up to six days a year. I continue to lecture regularly at those sessions and indeed more widely.

This ecological approach has proven particularly helpful in the management and treatment of myalgic encephalomyelitis (ME), otherwise known as chronic fatigue syndrome (CFS).

The BSEM has its own Special Interest Register and I was one of the first doctors to qualify for this in 2004, a process which required both my presenting long and short case histories and also my being subject to audit. My association with the Society is detailed in President Dr Damien Downing’s letter of 23.4.10, a copy of which has been passed to the Panel. I am lead author of a January 2009 paper published in the International Journal of Clinical and Experimental Medicine 2009 2 (1-16) entitled “Chronic fatigue syndrome and mitochondrial dysfunction”. Joint authors included Dr Norman Booth PhD of Oxford University and Dr John McLaren Howard DSc FACN. That paper was well received world wide and Dr Booth flew to the United States of America to present it at the International CFS/ME conference March 12-15 in Reno, Nevada in 2009. The Panel has a copy of this paper together with a letter to the GMC from Dr Norman Booth.

In that letter he states:

Dr Myhill is a guiding light in the field of CFS/ME. There is no other doctor, on indeed consultant, in the UK who has the up-to-date depth of knowledge of the scientific literature, the understanding of the nature of this illness, and the experience and expertise of working with patients to improve their condition.”

Much of the previous six GMC hearings I have faced were concerned with my prescribing of thyroid hormones. In order to clarify the issue I prepared a position statement with respect to the safe and effective prescribing of thyroid hormones. You have a copy of this position statement and also a covering letter signed by myself and another 12 doctors. As you can see it is extensively referenced and we hope that this will provide a stimulus for wider debate of this important issue within the scientific community. I move from NHS to private work and GMC investigations begin I have been seeing and treating patients with CFS/ME since 1982 when I first started work in NHS general practice. During this time I increasingly found that I did not have the clinical freedoms I needed to treat my patients effectively. For example to properly assess thyroid function one needs to measure a TSH, a free T4 and a free T3. The NHS laboratories would often refuse to do more than a TSH. A red cell magnesium is a very useful test – but the laboratories would only do a serum magnesium which is not helpful except in acute emergency situations. So, after 20 years of NHS practice, I finally moved to full time private practice in 2000.


During the last ten years, my Private Practice has built up and soon I was unable to accommodate all the patients wishing to see me. So I decided to set up a website where I could post all the advice and management techniques I had learned over the years. That website was subject to GMC scrutiny between 2005 and 2007 and was not found wanting at that time. Indeed I have been under almost constant GMC investigation during my time in Private Practice and have faced six Fitness to Practice hearings, all of which were cancelled with no case to answer. No complaints came from patients. No patient was harmed or put at risk. No allegations were upheld. No conditions have ever been placed on my practice.

An independent account of the investigations conducted by the GMC into my practice between 2001 and 2007 has been documented by Mr John Macdonald QC and you have a copy of his Opinion. I would like to repeat the Opinion of the GMC’s own QC Mr Tom Kark who, with respect to my case, advised the GMC on 04.10.07 as follows:

Dr Myhill’s good intentions are not seriously in doubt and it is known that she has very substantial patient support”

John Macdonald went on to opine

Anyone who has had any dealings with Dr Myhill is not likely to doubt her good intentions. I find it very surprising that these four charges were persisted with for so long. If Dr Myhill had been interviewed at an early stage by a senior member of the GMC’s investigating team and proper records had been kept, the overwhelming probability is that all four of these complaints would have been dismissed in short order. This, in my opinion, is what should have happened”.

On the basis of this advice to the GMC by its own counsel and also Mr John Macdonald’s Opinion I requested a private meeting with Jackie Smith, Head of GMC Fitness to Practice Investigations, and this meeting finally took place on August 12th 2009. I wished to request that the two QCs’ Opinion be observed by the GMC and that I be left to practise medicine in peace. Jackie Smith refused to allow Mr Macdonald QC to attend that meeting and so I attended alone. At the meeting she refused to address any of the concerns in Mr Macdonald’s Opinion . She also refused to sign the minutes of that meeting, a copy of which has been passed to the Panel. Indeed she has refused all further communication with me either by email or letter despite being prompting.

I apologise for speaking at length about my history of GMC investigations but I draw the Panel’s attention to GMC Guidance Imposing Interim Orders April 2008 Section 24 concerning interim conditions of interim suspension

The following factors may also be relevant 

a) Whether the practitioner has complied with any undertaking given to the GMC or conditions previously imposed under GMC Fitness to Practice procedures b) The practitioner’s history with the GMC (if any)

I reiterate that there have never been any conditions imposed on my practice by the GMC.

As stated above, as I have learned new information which I believe, through direct clinical experience, to be helpful to patients in general and ME/CFS sufferers in particular I have posted it on my website. I do this because there is much that can be done to improve the health of these sick people using simple dietary, nutritional and lifestyle interventions without ‘high tech’ medical interventions. Indeed I have received much positive feedback from people whose health has been improved as a result of the information contained on my website, information which is of course available without charge. This includes the ability to download my book on the management of CFS /ME from the website,again free of charge.

There is a standing invitation on the website for professionals and patients to send me ideas and indeed this has greatly improved the website content. I am always happy to change the content of the website given good reason.

The new Wikipedia look alike website

Many patients found my old website not to be user friendly and one of these patients, Mr Terry Ellison, built me a new site using a Wikipedia template. Mr Ellison did this without charge as a way of thanking me for the help I had been able to give him regarding his own Chronic Fatigue Syndrome diagnosis. This new website has greatly improved access to information and has generally been well received. Moving many hundreds of files from one site to another has been an arduous business, largely done by volunteers, and inevitably there have been mistakes and typographical errors. I have received very constructive comments from doctors, health professionals and patients from all over the world and this has helped me to correct these errors. Areas where I have been unclear as well as suggestions for further pages have been made and I am deeply grateful to all those people for their constructive input, which has undoubtedly enabled me to improve the quality of information on the site.

This is why it was particularly distressing to receive news of an anonymous complaint about my website made to the offices of the General Medical Council. I received the details of this complaint on March 31st 2010 and the GMC granted me 4 weeks to comment. As such, I started to prepare my response. However, four working days later, my office received a further communication from the GMC on Thursday April 8th to inform me that an Interim Orders Panel was to convene on Monday April 12th. I had one working day in which to respond. Had I been away from the office that day I should have returned to a fait accompli.

The GMC has concerns over two complaints – one complaint was detailed in a letter to the GMC dated June 18th 2009. The second came to the GMC in an email dated February 9th 2010. The GMC had allowed themselves 10 months to consider the first complaint and 8 weeks to consider the second complaint but I was permitted just one working day to respond to the GMC’s call for an Interim Orders Panel (IOP) and respond to both complaints.

The GMC’s own rules are that a doctor should receive seven days’ notice for an IOP (ref – Imposing Interim Orders April 2008 with August 2009 revision paragraph 11). So I appealed at once to the GMC and was relieved that I was granted a further 13 working days to prepare my defence.

The Complainant must be credible

I do understand that this is not a Fitness to Practise Hearing and therefore that there should be no examination of the content of either complaint. However I do have concerns about the credibility of both complainants and this is the issue I would like to address now.

I note that under GMC Imposing Interim Orders: Guidance for the Interim Orders Panel and the Fitness to Practise Panel April 2008 Annex 9 states:

The Interim Orders Panel will make no finding of fact but the complaint must be credible and backed up where possible by corroborative evidence.”

The First Complaint

There are discrepancies contained within the first complaint which should have been apparent to the GMC last August. The complainant’s letter to the GMC was dated June 18th 2009 concerning a patient. The GMC was sent the patient’s entire NHS medical records on August 29th 2009. It should have been clear then to the GMC that there were serious discrepancies between the allegations in the complainant’s letter and the contemporary medical records.

Furthermore I pointed out some of those discrepancies to the GMC in my letter, copied to the complainant, dated December 18th 2009. You have a copy of that letter in your bundle of documents.

In his letter of complaint to the GMC dated June18th 2009 Dr Y stated

On 24th March I had a further telephone conversation with X. I reiterated that we had not agreed to administer or train X to administer the injections”

But this is at odds with the patient’s medical records in which there is a letter from Dr Z to the district nurse which reads

Dear Colleague Please can X be taught how to administer the B12 injections. Yours sincerely Dr Z

The GMC acknowledged receipt of my letter on January 18th 2010 pointing out this discrepancy and confirmed that the complainant had also been sent a copy. The complainant was asked to respond to the GMC within two weeks. I do not know if the complainant complied with this request made by the GMC but he did not afford me the courtesy of even an acknowledgement nor was I copied in on any subsequent correspondence regarding this matter between the GMC and the complainant.

The GMC sent me that patient’s full NHS medical records on April 8th 2010 and within a few minutes of perusal it was clear that there were further discrepancies. I wrote as a matter of urgency both to the GMC and also to the complainant but both have refused to take any further actions to clarify these discrepancies.

The complainant has had more than enough time and warning to put the record straight. I have asked the complainant directly to attend this IOP to put the record straight but have received no response. I have also asked the GMC to subpoena the complainant for this express purpose but I am not aware whether the GMC has taken any such action.

I do not know if the complainant is present here today or not.

I also have concerns about the manner in which this first complaint was investigated. In the course of investigating this complaint, the GMC took the confidential NHS medical records of the patient involved. This they did without knowledge of the patient, without consent of the patient and without anonymising the medical notes. These medical notes have been sent on to me from the GMC, again without patient permission or knowledge. Since the GMC requires nine copies of all material pertinent to their investigation I assume they have nine copies of this patient’s private and confidential medical records.

The is in direct contravention of the GMC’s own policy in taking patient medical records as stated to me in a letter from GMC officer Patricia Collins 12th June 2007.

Over the nine years that I have been subject to GMC investigation my patients’ NHS notes have been taken by the GMC without knowledge, permission or anonymising the notes. I am not informed by the GMC when this has been done.

The Expert Witness Report

On Monday April 26th this week I received an Expert Witness Report. This Report has required my response because it forms part of the GMC submission placed before the Panel at my IOP hearing today Thursday April 29th.

On June 18th 2009 the GMC received the above complaint concerning my recommending B12 injections to a patient. The letter of instruction to the expert witness Professor Bouloux is dated 18 March 2010. His report is dated 22 April 2010.

It has taken the GMC over 10 months to obtain this expert witness report. By contrast I was initially given 2 days in which to respond. Once again, I am astounded by the lack of fairness and Natural Justice displayed by the GMC, particularly with respect to the time given by itself to prepare the case and the haste with which I have been forced to prepare my defence.

I apologise for the detailed analysis of Professor Bouloux’s report which follows, but I consider this document, to be so seriously flawed that the IOP needs to be aware of my most pressing concerns about it.

Professor Bouloux is an endocrinologist. By his own admission he is not an expert in mitochondrial disorders. In compiling his Report he has deemed it adequate to conduct only an on-line perusal of Pub Med for his information on mitochondrial disorders. He is not an expert on chronic fatigue syndrome. He has, by his own admission drawn upon the published NICE guidelines regarding the management of CFS. Using these sources of information Professor Bouloux concludes that

Dr Myhill has seriously violated the principles of good clinical practice by not adhering to duties of care and due diligence expected of a practitioner”

Available documents

Professor Bouloux does not list my paper, published in the International Journal of Clinical and Experimental Medicine (Ref: http://www.ijcem.com/files/IJCEM812001.pdf), as one of the six documents he studied in the preparation of his Report. This paper looks in depth at the biochemical lesions in mitochondria which underpin energy supply to the cell and relates this to patients with CFS. Essentially the worse the mitochondrial function the more fatigued the patient and vice versa. This is the first paper in the history of CFS which clearly shows that CFS has a measurable physical basis. The degree of correlation between mitochondrial function and levels of fatigue stands very well against rigorous statistical analysis and is significant to an extremely high degree of confidence level. My subsequent clinical experience suggests that nutritional and other interventions are highly effective in correcting this mitochondrial dysfunction. The Panel has before them the testament of many thousands of CFS sufferers and relatives and friends of CFS sufferers who vouch for this effectiveness. Whilst it could be argued that this represents only anecdotal evidence, there comes a point where the sheer volume of success stories from individuals represents substantive evidence as to the efficacy of a treatment protocol. I believe this point has been reached and, coupled with my published paper, contest that there is a firm evidence base for my interventions. However, despite apparently not looking at this paper, and presumably not having sight of the many thousands of afore mentioned testaments, Professor Bouloux goes on to comment about it and make derogatory comments that are simply not true. This paper was published in a highly reputable journal and was peer reviewed.

The report layout is unprofessional. Professor Bouloux’s report was sent to me pinned together by a paper clip. It was not sent on headed paper. The paragraphs and pages are not numbered. The last page with Professor Bouloux’s signature was sent to the GMC by fax, the rest of the pages apparently not. The Report contains grammatical errors, such as the use of the verb ‘advise’ rather than the noun ‘advice’ where Professor Bouloux is discussing the background to the complaint. Whilst the strength, or otherwise, of Professor Bouloux’s Report should not be judged solely on its grammatical accuracy, the existence of such basic errors does indicate a lack of care in its preparation.

I am used to reading medical papers which, when fact are made, are referenced. Professor Bouloux states in his expert witness report that

Some 50% of [CFS] patients respond to the use of serotonin reuptake inhibitors”.

This assertion is not referenced and I believe has no evidence base. Indeed his report has other unsubstantiated assertions and statements based on pure supposition. A combined example of assertion and supposition comes where he states:

Many patients have turned their back on allopathic approaches, preferring instead to seek treatment in an unconventional setting, where they not infrequently get greater support and understanding, and in some cases hope”

Patient record

Professor Bouloux was given by the GMC a full copy of the patient’s NHS records. Clearly he has not read these carefully and as a result his report is based upon misinformation. The important point here is that he has accepted unquestioningly the GP’s version of events instead of checking the facts for himself. In this sense, his Report does not constitute new evidence but rather merely a reiteration of previously submitted evidence. I have already rebutted these points in detail and would refer the Panel to my letter of December 18th 2009. But additionally Professor Bouloux has a third version of events. As you have read, Dr Y says that the Practise never agreed to train X to administer the injections. The letter to the district nurse says it did. But Prof Bouloux states that

"patient X  requested that a District Nurse instruct X to perform B12 injections"  

I can only infer that he has another source of information that he has not referenced. Clearly the Panel will need to see that reference and in the interest of fairness I should also like to have sight of this new information.

In the event no injections were supplied to X nor were any administered.

I would also like the Panel to observe that there is no letter of patient consent within those notes permitting them to be released to the GMC and third parties. Professor Bouloux should have been aware of this.

In his report Professor Bouloux states that another member of the family has a chronic fatigue syndrome. In the context of this comment the identity of the person is obvious. In preparing this report therefore he has breached yet another patient’s right to confidentiality.

Professor Bouloux states that my advice does not represent evidence based medicine. What he has clearly failed to do is to read my paper(Ref:http://www.ijcem.com/files/IJCEM812001.pdf). This is the evidence base for the treatment that I recommend. As I have already said, the testament of many thousands of CFS sufferers and their relatives and friends who have written to the GMC in my defence strengthens this evidence base.

In response to a question from the GMC vis

"Does the information provided by Dr Myhill to the GPs represent evidence based medicine?"

Professor Bouloux’s answer is a categorical

It does not, as there is no evidence base for the treatments recommended”

He goes on to say

“…..evidence base would require that a properly controlled double blind placebo controlled study be conducted to demonstrate the efficacy of the intervention” sic

These assertions by Professor Bouloux would be laughable if they were not so serious. Many highly effective medical interventions are practised in daily NHS work that are not proven by placebo controlled double blind trial. In his own area of expertise, namely endocrinology, on which I have written a position paper as listed above, I have seen no paper in which thyroid replacement therapy has been subject to placebo controlled double blind study. By Professor Bouloux’s standards, no one in the country should receive thyroid hormones and if such a bizarre policy were carried through, the Panel will be aware that many very sick patients would suffer and die as a consequence.

On receipt of this report, I had numerous immediate concerns and so I telephoned the GMC to ask if Professor Bouloux would be present at this hearing. Mr Bridge, the GMC Case Officer assigned with the task of dealing with the details of this Hearing, was not answering emails or the telephone. I spoke with GMC officers Alison Thompson and Scott Geddes neither of whom could answer my question. I was referred to Neil Marshall who was not answering his phone and, despite prompting from Scott Geddes has not contacted me.

So I remain unaware as to whether Professor Bouloux is here today to respond to my concerns.

The Second Complaint is Anonymous

My new Wikipedia lookalike website was launched in February 2010. The GMC received a complaint about that new website on February 9th just a few days later.

It is of great concern to me that this anonymous complainant chose not to contact me directly with any of his concerns. I would have been very happy to address those and, given good reason, changed the details in my website. Indeed this is the best way for science to progress! I am very mindful that I do not know all the answers and indeed the pleasure is in discovering new techniques to help patients!

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.

With this in mind I asked the GMC to approach the complainant and request a Declaration of Interest statement. The GMC refused even to contact the complainant let alone request such a statement. This refusal was given for, as the GMC put it “ reasons of confidentiality”.

However the complainant has identified himself on line in a website which goes under the name of “Bad Science”.

I reproduce below, verbatim, online quotes from the 'anonymous' complainant.

This was posted on Thursday April 15th at 2.20am

OK, so I finally bit the bullet and complained (anonymously for reasons that will become clear) to the GMC about uber-quack, Dr Sarah Myhill and to my surprise they have decided to launch a Fitness to Practise investigation. Her response has been quite interesting so I thought I would share it with the Badscience community. It will be interesting to see how the GMC proceed as I believe she has been in the same situation on numerous occasions in the past with similar public campaigns resulting in the GMC dropping charges for undisclosed reasons.

She has a (public) Interim Order Panel (IOP) hearing on 29th April at which she could have her license to practise suspended for 18 months.

Those who live in glass houses should masturbate in the basement - Dara O'briain”

At a further post he states

"I actually find this quite funny as my initial contact with the GMC was just a speculative email to the general enquiries email asking whether it would actually be worth submitting another complaint given the failure of the previous 6 efforts. This was written with some haste during a coffee break and hence contained a few typo’s. Amusingly, after submitting my full complaint the GMC decided to use this email to front the complaint to Myhill *sigh*."

These posts are accompanied by a photograph which I presume to be of the complainant himself. It pictures him underwater drinking a can of coca-cola.

GMC Investigation of Anonymous Complainant’s concerns Because of the design of the website it is possible to track who is looking at the web pages and for how long. The GMC received the complaint about my website at 5.42am on February 9th 2010. Six days later on February 15th the GMC accessed the very web pages flagged up by the complainant between 13.16 and 13.28. That is to say the GMC spent 12 minutes looking at my website.

I do not know who looked at those web pages nor whether they had any medical qualifications nor if they had any knowledge of diet or nutrition. I have received no expert witness report on those web pages and so I am led to believe that the GMC upheld the need for an IOP Hearing regarding this anonymous complaint on the basis of a 12 minute perusal by, for all I know, an unqualified GMC officer.

Conclusion: The Possible Outcome of this Hearing The GMC state that it is their primary duty to protect the General Public and I entirely concur with this. The letter I received on April 8th from Assistant Registrar Rebecca Townsley of the GMC stated that I should be subject to this Hearing because the Case Examiner considered “there is a potential risk to public safety”.

I repeat I am very mindful that this is not a Fitness to Practice Hearing and therefore there should be no examination of the content of either complaint. However I do have concerns about the credibility of one complainant and the complete lack of any corroborative evidence in both cases.

The GMC has been sent OVER 800 letters from patients and doctors which the Panel has before them. These letters collectively present a picture of support for my website and treatment protocols whilst at the same time expressing incredulity at the manner in which the GMC has behaved. The Panel also has a copy of the on-line petition which on April 27th had 3,345 signatories but also many thoughtful and incisive comments. This overwhelming show of support has happened in a relatively short period of time and emanates from not only within the United Kingdom but also from all around the World. I have been humbled by the level of support which in some cases comes from very sick patients who I know will have expended considerable reserves of their limited energy to put their point across in this way.

I am fed up with the way that I have been endlessly investigated by the GMC over the last nine years with issues that I can only describe as trifling. It is about time the GMC recognised that I have become expert in the application of nutritional medicine to simple and complex disease modalities for which this approach has much to offer.

In this field of nutritional and environmental medicine I am seen as a pioneer. The methods used are logical, scientific and evidence based. An understanding of this approach empowers patients to help themselves and, as evidenced by the pile of testimonies laid before it, seeing great success.

I fail to see how this can be construed, as the GMC case officer puts it, as posing “a threat to public health”. Indeed should I not speak out and keep this hard earned knowledge under wraps for fear of GMC prosecution, then I would indeed be putting patients and the wider public at risk.

Whatever the outcome of this hearing I shall continue to put the patients’ Best Interest at the heart of my medical practice.


Sarah Myhill April 29th 2010.