Sorry I’ve not been blogging recently. I put the blog to one side to concentrate on another project but I didn’t realise how long it would take. Needing to take breaks every five minutes to replenish my brain when I’m writing doesn’t make for speedy progress. Today, however, it has been May 12, ME Awareness Day, and I managed to share a link to Robert Saunders’ excellent ME-related version of Dylan’s ‘Blowing in the Wind’ on my (mainly non-ME specific) Facebook page. I read what I’d written to introduce the piece again just now and decided it was worth sharing it here too. If you’re involved in the ME world in some way, you’ve probably come across Robert’s splendid video already, but if not then do please take five minutes to listen – and maybe to share it with others.
Even if you think you know something about ME, some of the quotes used in the video may surprise you:
‘I split my clinical time between ME/CFS and HIV and I can tell you if I had to choose between the two illnesses, I’d rather have HIV.’ – Dr Nancy Klimas, Director, Institute of Neuro Immune Medicine, NSU.
‘People with ME are more disabled and have a lower quality of life than people with most other chronic illnesses including heart disease and multiple sclerosis.’
‘When the full details of the PACE Trial become known, it will be considered one of the biggest medical scandals if the 21st century.’ Carole Monaghan, UK MP
The PACE Trial spent £5m of UK taxpayers’ money and purported to illustrate the effectiveness of graded exercise therapy for ME. However, it was eventually discovered to be so full of flaws that it is now being taught in some university courses as an example of how not to do research. In spite of this, PACE is still highly influential worldwide, including here in the UK, its researchers being so embedded in the higher echelons of the medical establishment that mere facts seem to do nothing to damage their ‘credibility’ in the eyes of their peers.
Time and again, the faults and subterfuge which lie behind PACE have been laid bare, first by patients – many working from their sick beds – and more recently by commentators such as Dr David Tuller who have taken the trouble to look at the evidence and understand that the trial, and the biopsychosocial theory which underlies it, need to be exposed as the sham that they are. Time and again, the argument is won, and the PACE researchers are left mumbling the same excuses which didn’t hold water the last time around, yet to change the consensus view of the illness appears to take decades rather than years. Press coverage is slowly improving but the PACE researchers have a powerful lobbying group, the Science Media Centre, on their side, and though journalists are often well meaning, their idea of balance seems to be to present both sides of the argument, irrespective of where the truth may lie. The equivalent of most articles about ME would be a feature on the shape of the planet which gave equal time and weight to the views of the Flat Earth Society.
As the song puts it:
How many times must an idea fail
Before it is seen to be flawed?
How many flaws can a Trial embrace
Before it is seen as a fraud?
So the process of exposing the truth is an arduous one and of course people with ME have little energy to spare. We fight the illness as best we can but it is a cruel truth that we also have to fight an intransigent medical establishment. Thank goodness for those few healthy people who are willing to help us.
The slow process of getting to the truth has to go on. Graded exercise as promoted by PACE is very dangerous for people with ME. It can – and does – leave patients bedbound, sometimes permanently so. Not only that but the persistent presence of the biopsychosocial lobby means that most research money, especially here in the UK, goes into various ‘rehabilitation’ research programs such as PACE rather than into much needed biomedical research.
Of the 14 million people worldwide estimated to have ME, about 25% are housebound or bedbound, many as a result of graded exercise programs. Many of these severely affected can’t tolerate light so they spend their lives in darkened rooms. Some are not even well enough to talk to those close to them, so they Iive lives of total isolation.
The photos in the video illustrate the worlds of a solitary room in which many such people must live. When the song talks of people screaming in the dark then, it is not exaggeration – except that in reality the scream will most likely be a silent one.
Thanks for listening and reading. Please help by sharing this. Thanks, too, to Robert Saunders and all involved in making this powerful video.
Dear Dr Hammond – I was very pleased to hear about your vision for the way ahead regarding CFS on your 25 October BBC Radio Bristol show with Jennifer Brea (available on listen again at 2-21)
You said: “I remember when HIV first hit in the 80s in the UK … it was the patients themselves who learnt all the research and became very assertive and demanded the best care… I see that same movement happening with chronic fatigue. We need to unite people across the globe and use their wisdom and experience to get better research and that’s the route to an optimistic future, I think.”
I very much agree that this is the way ahead. We patients are doing our best to move things along this path. Unfortunately “becoming assertive” in the way that has been so successful for HIV campaigners is being interpreted by some health professionals as ‘harassment’. I’m glad you do not share this view. We are not trying to be difficult for the sake of it. All we are trying to do is to help uncover the truth about this illness which devastates so many patients’ lives.
With this in mind, I wonder if you have the time to answer a few questions which arose from your interview with Jennifer Brea. You were kind enough to respond when I wrote to you about a year ago and any response you can make again now would be very much appreciated.
1) You mentioned to Jennifer that some of your young patients improve when they have graded exercise therapy at your clinic. When you responded to me last year, however, you said that ‘the mainstay of treatment ( at the clinic) is activity management’. Which of these do you actually use at the clinic? Or is it both?
2) You were also telling Jennifer that when you do graded exercise therapy, you cut back on the amount your patients are doing. I wonder if your approach is the same as that described in the Magenta protocol, where patients start on a baseline level which is the same as the median amount which is currently being achieved each week. The total level therefore remains the same but there is more consistency in the amount of exercise day to day. Once this baseline level has been achieved every day for 1 to 2 weeks, then according to Magenta, participants are advised to increase exercise by 10 to 20% a week. This means that any cutback in exercise is not substantial (really more a smoothing out than an actual reduction) and does not seem to last very long. Is this indeed what you do in the clinic? In which case, the overall emphasis seems really to be more about increasing the level of exercise rather than cutting back. Or do you do things another way? If so, why do you not use the same regime as Magenta?
3) Jennifer remarked that the regime in your clinic as you described it to her seemed very like pacing, but the Magenta advice to increase by 10 to 20% a week seems much less flexible than that. Even if the increase is not rigidly imposed, the therapist – and inevitably the patient – will feel under pressure to deliver it. The most crucial issue is: what happens if symptoms start getting worse? Are patients encouraged to cut back on exercise or to carry on regardless? The Magenta protocol doesn’t seem to say what the advice will be but the PACE protocol is clearly in favour of carrying on as far as possible in spite of worsening symptoms. Is this the advice given in your clinic I wonder? If so, then it certainly isn’t like pacing. And if otherwise, what is the advice given?
I’m sorry if these questions seem fussy and pedantic but it seems to me that a lot of the problem in understanding CFS is that so many factors are not precisely defined. From a short conversation, it can seem like a graded exercise program is very similar to pacing but the devil is in the detail. Similarly, so many researchers have made the mistake of assuming that patients diagnosed with different diagnostic criteria all have the same condition.
As you said in the interview: “we’ve noticed there are some kids who do improve when they have graded exercise therapy and cognitive behavioural therapy – and some who don’t, which suggests… either we’re dealing with different conditions or chronic fatigue syndrome is a variety of different things.” As Jennifer put it (with your agreement): “we have to make sure we are treating the right patients with the right treatments.” This is true not least because the wrong treatment can lead to long term disability.
So I couldn’t agree more that we need to distinguish between the different types of patients, but we’re not going to do this as long as we keep on using a dogs breakfast of different criteria to identify patients, frequently conflating ME/CFS with generic chronic fatigue and even making up new variations as we go along. I’m afraid that a prime example of the latter appeared in the original protocol for FITNET-NHS, which – for no very good reason – proposed using a version of the NICE criteria which did not require the presence of post-exertional malaise. I understand that this has now been scrapped but why on earth was it thought to be a good idea in the first place? Unless we start describing patients precisely and consistently, we will never get anywhere.
You mentioned that some of your patients do not respond well to graded exercise and it would be interesting to see if such patients fit the Canadian criteria rather than Fukuda or NICE. You also showed great interest when Jennifer described the use of the VO2 Max test to try to make sense of patient response to exercise. You even suggested collaboration. Would it not be possible to make that happen? It is indeed important to distinguish between the different types of patients so why are you not using some of these (what seem to me to be) obvious strategies to help you do so?
I think it is great that you are helping so many children who respond well to your therapies but you acknowledge that many do not and I can only agree that there is a very great need to distinguish between them, not least for the sake of those who you describe as having severe symptoms for a long time. As you say ‘that is where most of the attention needs to go’. Once again, I can only agree. I applaud what is obviously your heartfelt desire to help such children. As a concerned and assertive patient, I urge you to do whatever you can to bring that about.
Anyone reading through the numerous posts on this site could get the impression that nothing encouraging ever happens in the world of ME. Well it often seems that way, but good things do occasionally come along and I have to admit, if I’m honest, that these posts are more likely to be bearers of bad news than good because I’m more likely to pick up my tablet and write about something which has annoyed me.
Having moaned so much about journalists last time, however, it seems only fair to redress the balance by reporting when one of them has done a good job. So congratulations to Tom Whipple of The Times for a well informed article on the review of the NICE Guidelines. Thanks also to the ME Association for providing a way round the paywall – and to Dr Keith Geraghty who appears to have been instrumental in setting this article up. I really hope we can look forward to further reliable dispatches from Tom in the future. There’s a lot of opportunity in the ME field for any journalists who are willing to consider taking the trouble to get to the truth.
And speaking of NICE, the decision to review the guidelines after all came as another piece of good news. Bearing in mind the information available, the revised advice in the USA, the petition with 15,000 signatures, and the Early Day Motion in parliament, you might have been forgiven for anticipating a change of mind at NICE, but we’ve got so used to having our sensible arguments ignored, that it came as quite a shock when it actually happened.
And now yesterday, another good media item on M.E., this time a special phone in on BBC Radio 4’s ‘You and Yours’. Congratulations to Dr Charles Shepherd and to all the callers who did an excellent job. Prof Crawley was less impressive but more of that in a moment. I know that a great many patients contacted the programme so well done to you lot too. Here, for what it’s worth is my own contribution, dashed off yesterday afternoon. Yes, I’m moaning again…
Dear You and Yours – Thank you for your programme on ME/CFS which was much better informed than most items concerning the condition which appear in the media. I’m sure that many patients will have welcomed it. However, there are a few things I would like to bring to your attention:
1) There are two types of CBT used for ME/CFS. The first is simply to help patients come to terms with having the condition, dealing with feelings etc. This is the same as would be used for any other physical condition, such as MS or cancer. This can be very helpful and most ME patients do not have a problem with this. However, the type of CBT most frequently used for the condition is very different. It is used to try to convince patients that there is nothing physically wrong with them, that they are simply being kept ill due to deconditioning and all they have to do is to exercise more to get better. This flies in the face of the physical evidence and when used in conjunction with graded exercise therapy can make patients a lot worse. Many patients have become permanently severely disabled due to this approach. (This is the type of CBT that was used in the infamous PACE Trial and is still used in many NHS clinics. So when its proponents say that there isn’t a problem because CBT is used for other physical conditions they are, I’m afraid, intending to deliberately mislead.)
2) No mention was made on the programme of the severely affected, who comprise about 25% of patients with ME/CFS. The vast majority of these are permanently housebound or bedbound. Many are unable to even sit up in bed, tolerate light, or converse with their loved ones. Most of these receive no medical attention whatsoever as GPs often refuse to visit them. Most doctors do not believe that people ME/CFS can become so severely ill, and wouldn’t know what to do about it even if they did.
3) The first forty minutes of the programme were excellent so it was disappointing that you gave five minutes at the end to Prof Crawley with no one to challenge her. She is one of a small group of UK doctors who have built a career on poor quality, misleading research which has only led to confusion in the field. Her latest paper on the lightning process is an example of this but there have been many others. Studies such as these (and the PACE trial itself) are misleading for numerous reasons but one of the problems is that many of the patients selected do not have ME/CFS at all but fatigue due to other conditions such as depression. Many of these will respond well to graded exercise or possibly the lightning process, ‘treatments’ which are harmful to people who really have ME/CFS. This would not be a problem if efforts were made to clearly distinguish between the different types of patient but Prof Crawley persistently fails to do this, conflating patients with ME, CFS and generic fatigue. These days she is frequently in the media, much to the dismay of many patients. We have noticed that there is never anyone to challenge her point of view. Why not? It would have been interesting to listen to Dr Shepherd in conversation with her, for instance. I hope that if you cover the subject again, Prof Crawley will not be allowed to go unchallenged.
Notwithstanding the above, your programme was like a beacon of light amid a sea of misinformation about our condition. Thank you for producing it.
Hmm, ‘beacon of light’ may have been a bit over-enthusiastic but it’s best to give encouragement where it’s due. Lets hope to see further outbreaks of truth in the UK media soon…
P.S. Yes, I know I’ve conflated ME and CFS myself. Sorry. But it seemed best to write using the same terminology they used on the programme. Advance notices for ‘You and Yours’ spoke of ‘chronic fatigue’ but it seems that someone put them right on that one. By the time of the actual programme they were saying ‘ME/CFS’. At least that’s some progress.
Time after time over the years, people with M.E. (myalgic encephalomyelitis) have had to put up with hearing total bunkum about their condition, but rarely does the ‘science’ get as flaky as last Thursday’s announcements on the ‘Smile’ Trial, a study which purported to assess the efficacy of the ‘Lightning Process’ for children with M.E. This process (known as LP for short) could be described as a cross between neuro-linguistic programming (NLP) and amateur dramatics, or (to put it less kindly though perhaps more accurately) as a form of brainwashing.
The precise nature of LP is wreathed in secrecy and participants are told not to disclose the details. However, according to anecdotal reports, patients undergoing the process are told that they are responsible for their illness and are free to choose to live their life without it if they wish. They are told they can achieve this through LP but it will only work if they believe in it. Everything they think and say must be positive. They must tell everyone they are better. When they feel any symptoms or negative thoughts, they must stretch out their arms with the palms facing out and shout “Stop!” If the process doesn’t work, they’re doing something wrong: it is their fault if they’re still ill.
Can you guess what results this trial has achieved?
Well, the researchers reported that LP combined with standard medical care produced better results than standard medical care alone. If you look at how they assessed this, the outcome was scarcely surprising. In common with other similar trials assessing ‘psychological’ treatments for M.E. (including the controversial £5m publically funded PACE trial) it was unblinded and there was very little in terms of objective assessment of outcomes. The results were almost entirely assessed using self-completed questionnaires. So in other words what they did was to tell the children they were better and then ask them if they were better. Just in case this didn’t achieve the desired outcome, remember that the children had also been told that the process would only work if they believed in it and if they didn’t recover it would be their fault.
Remember too that these were children being questioned by adults in positions of perceived authority.
Now what was that answer again, children?
Apparently we are supposed to treat this extraordinary procedure as a piece of serious science. After all, we have the science editors at the BBC and the Guardian as our role models. As with the many previous papers from the PACE researchers and their colleagues, these so called professional journalists swallow the whole thing without so much as a grimace and repeat it all back just as they have been told it, like performing parrots. The source on which they rely to tell them what to think is the Science Media Centre, a shadowy organisation which purportedly exists to provide a balanced view of science but in fact appears to promote the agenda of vested interests: in this case those who have built careers on the backs of patients with M.E., promoting their unproven psychological theories, misdirecting patients and their families, and effectively diverting funds from much-needed biomedical research.
On top of all the nonsense they spouted in Thursday’s coverage about the trial itself, these ‘journalists’ have also been coached to repeat yet again the habitual misinformation about M.E. researchers being abused by patients, apparently to such an extent that most of them have left the field altogether. This simply isn’t true. While one or two psychiatrists have announced their retirement, at least one purportedly in fear of his life, this doesn’t seem to stop them continuing to write about M.E. or, in at least one case, issuing further papers on the subject. These accusations against patients reached their peak at the Freedom of Information Tribunal which released important data about the PACE Trial. The Tribunal ruled that the accusations had been greatly exaggerated. Apparently the sole piece of evidence produced for all the so-called threats was that one of the researchers had been heckled at a lecture. In reality, while any abuse which may occur is regrettable, by far the bulk of what these researchers complain about is simply legitimate criticism about abysmal so-called ‘science’ such as the Smile trial.
Meanwhile, those scientists researching the biomedical roots of M.E., of whom there are many worldwide – though precious few in the UK where psychiatrists take most of the funding – get on extremely well with patients, who in many cases raise the money they need to do their work.
Only a small proportion of such progress is reported in the UK media. The Science Media Centre don’t tell the journalists about it and, it seems, they can’t be bothered to look for themselves.
To add to the misinformation: on BBC Radio Four’s Today programme (approx 7-50 am), lead Smile researcher Esther Crawley grossly misrepresented the patient support group the M.E. Association by claiming that they didn’t want M.E to be researched in children. In fact, their complaint was not against research for children with M.E. in general, but the Smile Trial in particular, which they considered to be unethical. I have to say that I agree with them. Children frame their view of the world at least partially according to what adults tell them, so for them to be told they are not ill, contrary to their own perceived experience and to what is now understood about the physical reality of this neuroimmune condition, appears to be a betrayal of their trust. Research evidence by VanNess et al, among others, strongly suggests that it is harmful for M.E. patients to ignore the way they feel and push themselves beyond their capability. This can bring about a long-term deterioration in their condition. Unlike adults, children have a good chance of making a full recovery if they are simply allowed to take the rest they need. To encourage them to ignore the way they feel, as does the lightning process, is therefore particularly unfortunate. It can push children who might otherwise have recovered into a lifetime of chronic illness.
The conversation on this You Tube ‘video’ took place on BBC Radio 4’s PM programme on 11th July 2017 when Andy Burnham, prompted by host Eddie Mair, proposed the adoption of a ‘Hillsborough law’ to shift the balance in the many instances where ordinary people bring genuine complaints but are dismissed and even denigrated by the establishment. He described the latter in terms of a cosy network of relationships between high ranking people in public bodies and the media. Burnham, a former Health Secretary and now Mayor of Greater Manchester, was speaking after the announcement of an inquiry into the massive blood contamination scandal which cost the lives of over 2400 people who received transfusions in the UK in the seventies till the nineties. He compared this to other scandals such as the Hillsborough disaster, in all of which the complaints of those involved and their families have been dismissed and ignored for decades.
I’m sure there are many other examples of such injustices. Hopefully the recent Grenfell Tower disaster will be dealt with more swiftly.
The conversation reminded me of an issue in which I am very much involved, that of ME (myalgic encephalomyelitis), also known – misleadingly- as CFS (chronic fatigue syndrome). This may seem like a trivial issue compared to the others I have mentioned, but therein lies the primary injustice. Unfortunately the term ‘chronic fatigue’ gives the impression of patients who are just ‘tired all the time’ so this is the view that many people have of this condition.
The truth is that the lives of people with ME are more severely impacted than those with a great many other illnesses including MS, HIV, and congestive heart failure. They suffer with a wide range of symptoms, far more than just fatigue. Even those who are ‘moderately affected’ are severely ill by any normal standards, while those termed ‘severely affected’ are often confined permanently to bed, in continuous pain, unable to sit up, tolerate light, or even communicate with their loved ones. To make matters worse, the sicker they become, the less medical attention they get. Doctors don’t understand the condition or know what to do, so they just stay away. Many people have died from ME, though this is rarely acknowledged by the authorities.
ME has been trivialised by the medical authorities for decades, notably by two British psychiatrists who studied an outbreak of the illness at the Royal Free Hospital in the fifties and concluded that it had been due to ‘hysteria’. The only ‘evidence’ they cited for this was that most of those affected had been female.
The misconception that ME is a mental health issue has persisted over the years, in part due to what has seemed to be the deliberate intention of those in authority. They have spread this confusion by adopting the trivialising name ‘chronic fatigue syndrome’ and also by using a wide range of mutually contradictory diagnostic definitions. Many of these are so vague that they include other, less serious, forms of chronic fatigue which therefore get lumped in together with ME. This has led to inappropriate ‘therapies’ such as GET (graded exercise therapy) and CBT (cognitive behavioural therapy) being recommended for ME.
CBT can be a helpful therapy to assist patients to live with a wide range of physical conditions but its most common use in CFS/ME is very different. It is used to convince patients that there is nothing physically wrong with them and that all they need to do is to slowly increase their level of activity (using GET) and they will recover. This approach may be moderately successful for some forms of chronic fatigue (such as that due to depression) but it is likely to be extremely damaging for ME. It flies in the face of research evidence which has revealed substantial physical abnormalities and an abnormal response to exercise. It also runs contrary to numerous patient surveys which report that GET makes many ME patients considerably worse, sometimes permanently so.
It is interesting to note that the PACE Trial, a large scale UK study which purported to illustrate the efficacy of CBT and GET for ME, was part funded by the DWP (Department of Work and Pensions) who are of course responsible for the payment of sickness benefits but are not normally involved in funding medical research. This draws attention to the fact that the governmental authorities have a vested interest in ‘proving’ ME to be a minor condition which responds well to short courses of relatively inexpensive ‘treatments ‘ like CBT and GET – even though this approach contradicts research evidence.
The PACE Trial itself has been a subject of substantial controversy, concerned patients having discovered a great many irregularities, the most astonishing of which was the change of patient entry criteria after the trial was started, thereby allowing patients to be ill enough to enter the trial, deteriorate during it, yet still be classed as ‘recovered’ at the end. This has naturally resulted in an upward distortion of the success rate.
PACE, in common with other research into ME/CFS by related researchers, contains a great many such defects, any one of which could have resulted in failure in a high school practical exam. Concerns have prompted more than forty eminent doctors and researchers who work in the field of ME/CFS to write to The Lancet, the journal which published the original PACE paper, calling for an independent review of the study.
A substantial critique of PACE’s many defects has been produced by the investigative journalist and public health lecturer David Tuller, who has also produced critiques of other studies by related researchers. A list of links to these articles can be found here. Building on the initial work of concerned patients, Tuller demonstrates glaring errors in these studies, yet the researchers and the supposedly reputable journals which publish them have responded to such criticisms with dismissive, unconvincing replies or else no response all.
As Andy Burnham suggested on the radio, there is a cosy network of people in authority who close ranks to defend each other against the criticisms of ordinary people. He mentioned politicians and the media but unfortunately – though it might damage the career of a politician like Burnham to suggest it – this is equally true of the medical profession. The PACE researchers seem to believe so strongly in their own preconceptions that they see nothing wrong in they or their colleagues ‘tweaking’ their studies to get the result that they believe to be the right one, and their friends in high places have such confidence in the integrity of their clubbable friends that they defend them without question, not feeling there is any requirement to take a look at the actual facts of the matter.
Part of their strategy – again as Burnham suggested – is to denigrate those who try to hold them to account. Patients had to fight hard to get vital data from PACE released under the Freedom of Information Act and met with vilification from the researchers for trying to do so. They were accused of making ‘vexatious’ requests for information, of ‘harassing’ the researchers, and even – in their attempts to unravel the complex sleights of hand that had been employed to get the researchers the results they wanted – of having ‘obsessive attention to detail’. At the FoA Tribunal which eventually ruled that the data should be released, patients were accused of presenting ‘a serious risk of violence to trial participants and researchers’ but this was deemed by the tribunal to be ‘grossly exaggerated’ and the ruling noted that the only evidence presented of such ‘violence’ was of one of the PACE researchers being heckled at a lecture.
Patients feel intense frustration that in spite of all the work done to expose the shortcomings of PACE and associated studies, they have not been retracted, and GET and CBT remain the recommended ‘therapies’ for ME/CFS in the U.K. Furthermore one of the PACE researchers’ associates – herself the source of numerous flawed and misleading papers on the condition – is now giving lectures in which she routinely vilifies the patients who question her research and accuses them of being ‘anti-science’. In view of the quality of the research in question, this is beyond irony.
Sadly, the cosy network even extends as far as some of the organisations which supposedly exist to further the interests of patients. The two main national organisations belong to a research committee whose Vice Chair gives the lectures mentioned in the previous paragraph and who seems to believe that severe ME in children is really ‘pervasive refusal syndrome’, a mental health condition for which no evidence exists. The use of this alternative diagnosis can lead to children being taken away from their parents and forcibly given a course of GET, even though this is not recommended for the severely affected and can result in severe disablement.
One of the patient organisations, Action for ME, has supported and enabled the PACE Trial itself, supposedly being involved to support the interests of patients yet singularly and spectacularly failing to do so. Increasingly, the patients whose financial contributions enable these organisations to exist are complaining about their actions and the company they keep – but sadly the cosy network described above seems to extend to their trustees and celebrity patrons, who themselves prefer to support those in authority rather than patients.
So yes, in the case of ME, we patients feel that the odds are stacked against us. A Hillsborough law would indeed be useful. As things stand, we ordinary patients seem to have very little power against the network of those with vested interests who believe that they and their friends must be right because of who they are. We have the truth on our side and we have the evidence to prove it – but that does not appear to be enough.
A quick PS: The national patient organisation I didn’t mention by name above is the ME Association. I would like to make plain that I have a great deal of respect for their work and that of their Medical Advisor Dr Charles Shepherd, who much of the time do a very good job of representing our interests. An example of this work is their recent petition to NICE regarding the decision not update the guidelines on ME/CFS (do consider signing if you haven’t already – this is important). However, MEA’s decision to stay in the CMRC and continue to work with those who malign patients and whose research contributes further misinformation about ME seems to me – and to many other patients – to be a serious error of judgement. They really should listen to the voice of informed patients.
PPS Sorry my first YouTube video isn’t exactly a multimedia extravaganza. It’s been a steep learning curve. Many thanks to Nigel B for helping me get as far as this.
Following last Saturday’s interview with Prof Esther Crawley on BBC Radio Bristol, I sent the following letter to Dr Phil Hammond who hosted the programme. I think it explains a large part of the reason why patients with M.E. have problems with Dr Crawley and why we don’t want her involved with the proposed MEGA study:
Dear Dr Hammond
Thank you for putting the concerns of ME/CFS patients to Prof Esther Crawley in your interview on Radio Bristol last Saturday. Unfortunately, as I have tried to explain as briefly as possible below, her responses were largely factually incorrect. I wonder if next time you have her on your programme, you could also invite the investigative journalist David Tuller whose original in-depth analysis brought the many and in some cases outrageous defects of the PACE Trial to wider attention. This led to numerous condemnations of PACE from eminent researchers in the field of ME/CFS. Here are just two of them:
Prof. Ronald Davis of Stanford University said: “I’m shocked that the Lancet published it…The PACE study has so many flaws and there are so many questions you’d want to ask about it that I don’t understand how it got through any kind of peer review.”
Prof. Jonathan Edwards of University College London said: “It’s a mass of un-interpretability to me…All the issues with the trial are extremely worrying, making interpretation of the clinical significance of the findings more or less impossible.”
PACE’s recommendations for the use of CBT and graded exercise therapy (GET) for ME/CFS have frequently been reported by the British media but the important work of Mr Tuller has been ignored, so grossly distorting the information which has been made available to the British public. It would be an invaluable service if your programme could help to redress this imbalance.
Does Esther Crawley’s latest research really tell us anything about the prevalence of pediatric CFS/ME?
After a quiet time over the holidays and into the new year, ME/CFS has been back in the news again. This time the coverage has in many ways been rather helpful. Dr Mark Porter, writing in The Times painted quite an accurate portrait of the condition: usually starting after an infection; involving numerous symptoms rather than only fatigue; the fatigue itself “persistent and recurrent”; and “exacerbated by physical or mental exertion”. There was even a description (though not by name) of the all-important post-exertional malaise. Pacing was also well described: “some of the strategies are counter-intuitive”, “it is important to avoid the boom-and-bust cycle”, only the exhortation to avoid daytime sleep seemed to me to be off the mark: in some situations this is a useful strategy to restore natural rhythm but in my experience as a patient it’s not always feasible or desirable. Nevertheless I liked Dr Porter’s perspective on the possible psychological repercussions of having ME: “feeling awful for months on end will dampen the spirits of the hardiest person” and severe ME at least gets a mention: “when severe it can leave victims housebound and often bedridden (the worst cases require hospital treatment)”. Not that the hospital is likely to have a clue what to do about it but at least there is some acknowledgement of severity.
The piece on the BBC News website focused more on the new study from the University of Bristol which served as the trigger for this latest splurge of publicity. Chronic Fatigue Syndrome at Age 16 Years claimed that the prevalence of pediatric CFS was 1.9% in 16-year-olds, higher than previously thought. The BBC article rounded this up to 1 in 50 and contrasted it with the 1 in 1000 (it said) who are actually diagnosed. Hmm.
The study also claimed that CFS affected almost twice as many girls as boys at age 16 and was more likely to affect children from disadvantaged backgrounds. According to the article, the study authors said this dispelled the commonly held view that CFS/ME was a “middle-class” illness, or “yuppie flu”.
I think I would dispute the fact that this is a widely held view any more (except perhaps among journalists), most of the general population having either forgotten about yuppies or being too young to have heard of them at all. But I suppose it is a useful enough finding – if it can be trusted, that is, but more of that in a moment… Continue reading “None The Wiser…”