Tymes Trust Alert 2016-02 : STATEMENT ON MEGA Message from Jane 27 November 2016 ====== TYMES TRUST STATEMENT ON MEGA MY MEDIA INTERVIEWS ON FITNET ====== We are extremely concerned about the new MEGA and FITNET studies that have been announced. We were, like so many of you, appalled at the recent media coverage for the FITNET trial of Cognitive Behaviour Therapy (CBT) in children, leading to Graded Exercise/Activity. This type of therapy is known to make people with classic ME deteriorate. The same researcher is doing MEGA and FITNET and is part of the CM Research Collaborative that spread accusations about people with ME (later dismissed in a legal tribunal). Below is a section of our Statement. MEGA STATEMENT FROM TYMES TRUST : A STUDY TOO FAR >>EXCERPT>> ...FITNET was recently covered by the media. The study on which it is based showed a null 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)" is at www.tymestrust.org/pdfs/shiningalight.pdf <