Posted by The Young ME Sufferers Trust on 14th November 2016 –
(resposted here in full with kind permission)
Let us establish at the start, that Tymes Trust does not endorse or support MEGA.
What disease does this study purport to study? Does it even study ME? The criteria are so wide, there will be various forms of fatiguing illnesses in this study which do not, in real life (epidemiology) exhibit the classic signs and symptoms of ME (Myalgic Encephalomyelitis). What will that tell researchers about ME? In our view, given the loose selection criteria, the term ME should have been omitted entirely from the study before asking the public – through a petition, of all things – to endorse it. Fatigue is not ME, and ME is not fatigue. This can be determined merely through reading Ramsay’s original ME definition and comparing it with the woolly MEGA criteria. What sort of science is it that does not remain true to the definition of the disease that describes so accurately how it affects patients?
Next, what about those we are asked to put our trust in to conduct this study? It has been observed by others that the list includes people who were involved with the PACE trial. The PACE investigators were responsible for a quarter of a million pounds of taxpayers’ money being spent to hide the data for five years from both patients and scientists. When, finally, an appeal tribunal Judge ruled against them, and ordered them to release the data, it was found on independent analysis that the claimed results had been wildly exaggerated. The resulting press coverage touting the bogus success of Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET) for people with ME was therefore also wildly exaggerated.
Then there is the infamous CFS/ME NICE Guideline, recommending CBT and GET. One of those involved in producing the NICE recommendations, and now involved in MEGA, is attempting to subject children to GET, and to online CBT (which the protocol reveals leads to a form of GET) through the MAGENTA and FITNET trials. The potential damage to children with classic ME who might thereby undertake GET has horrified many parents and ME organisations alike, given the evidence that now exists for physical deterioration after exercise.
FITNET was recently covered by the media. The study on which it is based showed a nil result on follow-up. Yet we were led to believe that a two thirds cure rate could be hoped for from the new trial by this MEGA researcher. Our Executive Director, Jane Colby, explained our concerns on a current affairs programme, the BBC’s Victoria Derbyshire Show.
From The Victoria Derbyshire Show
Victoria: Jane, you don’t like this idea of CBT treatment. Why is that?
Jane: Well, I don’t think it’s as simple as that. I think it’s the fact that somebody has got a serious physical illness. We deal with children – and I’ve been there myself too as a result of a virus related to polio – who are completely bedridden and may be unable, hardly, to eat, or move, or have to be even tube-fed, seriously ill people – and if you give people like that some kind of CBT which encourages them to feel that their illness belief is wrong, which tends to happen with a number of people who deliver CBT, you encourage them to do too much. As a result of this, they will actually crash and they will actually get a lot worse.
We deal with children who are basically suffering from Myalgic Encephalomyelitis, and ME was originally defined as an illness where making a lot of effort, or even just a little bit of effort, would make you a lot worse. It also was defined as being very variable during the day, with an alarming tendency to become chronic. And all that has been backed up by the American Institute of Medicine recently. And I think people who have got these classic cases of very severe ME are different from people who have other types of fatiguing illness, and the chronic fatigue umbrella is pulling in people with this classic ME illness, which is NOT a mixture of illnesses. But Chronic Fatigue Syndrome IS a mixture of illnesses. The term is “heterogeneous”, and we know it’s heterogeneous, so you have to be very careful what you’re doing with your patient selection, otherwise you are going to give the wrong sort of treatment.
Jane was asked her views on the researcher’s promotion of this treatment UK-wide:
Jane: If these children and their parents are pretty much told that this is probably going to help, and then it doesn’t help, they’re very often not believed. Now what we see happening a lot, unfortunately, is that when this doesn’t improve the child’s condition, then the parents get accused of making the child ill, or the child is made to feel it’s their own fault and they’ve got some kind of psychiatric condition.
Victoria: You feel very passionately about that – the sort of not being believed about what’s causing it.
Jane: Well, the reason is that it leads to these erroneous false allegations of child abuse against the parents. We’ve seen 151 cases of this, and had to help them, and not one of them has been proved to be child abuse. Now this happens when some kind of psychological treatment is given and it doesn’t work. If it doesn’t work, then the parents and the child must be believed.
Jane was also asked for a comment on the BBC’s Today Programme:
Jane: I think if you use a psychological treatment to try to help people reduce anxiety and worry, that is one thing. If you try to use it to persuade people that they have a wrong belief when they say they are physically ill, you end up encouraging them to do enough to make themselves much worse, and there is plenty of evidence for that. And people are sick of experts who think they know better than they know their own children. They know what makes their children worse.
Apart from this misleading impression painted by some of the MEGA researchers that ME (which they persistently mix with chronic fatigue) can be cured by psychological means, it must also be remembered that the public’s opinion of people with ME has been tarnished by several of those involved in MEGA. This has been a smear campaign, spread by these researchers, and launched to the press through the medium of the UK CMRC Research Collaborative. The accusations against patients, since repudiated in the PACE tribunal appeal Judgement, were also spread directly to Parliament through the Collaborative. We refer you to our newly retitled Report, which is now on our website and contains a quote from the PACE tribunal appeal Judgement.
Shining A Light On The CMRC Setup (Minutes And Emails Obtained Under FOI)
This Report from Tymes Trust never ceases to shock. It is the shameful inside story of the UK CFS/ME Research Collaborative. Our Report is based, not on speculation or conjecture, but on direct evidence from emails exchanged by the participants. We think this is key reading for the ME community, now in particular because of the involvement of these people in MEGA.
In conclusion, we find it difficult to credit that any supposed “ME” organisation would be happy to work alongside these same researchers on anything, much less on a trial that does not even study ME per se and which will be the recipient of yet more millions of public money.
Sign Opposing MEGA at change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs