From The Times, 2 November 2016. Story by science editor Tom Whipple.
A mixture of cognitive behavioural therapy and exercise treatment seemed to be effective for two thirds of ME sufferers.
Children suffering from ME will receive online therapy at home in a trial of an intervention previously shown to help two thirds of patients.
Between 1 and 2 per cent of children are affected by ME, or chronic fatigue syndrome, a debilitating condition that leaves them feeling persistently tired and often means they miss out on months of schooling.
The causes are unknown, but a study in the Netherlands found that a mixture of cognitive behavioural therapy (CBT) and exercise treatment, delivered through an app, seemed to be effective for two thirds of children.
Now the same treatment, which also involves controlling and cutting down on sleep, will be tried out on 350 young people in the biggest clinical trial into the condition. They will be compared with 350 children on conventional treatment.
Esther Crawley, a children’s doctor from the University of Bristol, said that the disease was devastating for young people. “The first thing they drop is socialising and fun things, then they drop school, so this is very different to teenagers just being tired,” she said.
She said that NHS help for ME is extremely patchy, meaning children have to travel from all over the UK to see her, often arriving exhausted and unfit to be seen. The new approach includes video consultations, allowing them to stay at home.
Even so, the treatment is controversial. Some ME sufferers are strongly opposed to the idea that the condition is psychological. One of the leading theories is that ME is the result of the body overreacting to a viral infection.
A major British trial involving adults that claimed to find there was an improvement after CBT and exercise has been heavily criticised by some ME activists and the researchers behind it have complained of harassment.
Professor Crawley said that she firmly believed the condition was biological in origin but that because no drug treatment existed the methods in the trial were the best option. She also said that changes to sleep and exercise have strong effects on the body. “It’s not a pill, but it might as well be a pill in terms of the changes to biology.”
The results of the study will be published in 2022.
Does ME Ass think that the condition is a psychological one? If not, then get singing that from the rooftops. Defend us. Don’t sit on the fence
CBT was shown to have no long term benefits. Don’t let them get away with misusing research to tout a flawed therapy. We don’t need PACE 2.
Some members aren’t aware of all the bad science that has been exposed, we need ME Ass to give them sound advice
Please, ME Ass – condemn this article and the people behind it. Condemn in loudly and widely, don’t sit on the fence.
“..because no drug treatment existed the methods in the trial were the best option…” is a bit like saying because the lane where the drunk dropped his door key is too dark, he should search for his key under the street light in a different road.
Perhaps also – because CBT does not help adults, we have decided to pay a million quid to try it on teenagers. Why would that get better results?
We already have research. It was quite hard to get the truth about it but now we know: CBT will not cure ME. It will not usually help. It will sometimes make things worse.
CBT. delivered by phone is not an improvement.
In the unlikely event that the very best CBT treatment did have some benefits in a well run research project, the NHS would give some half baked twit an afternoon’s training to deliver the programme to all and sundry and decline to admit that that would not replicate the conditions of the research.
The claim that “A major British trial… has been heavily criticised by some ME activists and the researchers behind it have complained of harassment” is one that must be balanced by a different point of view on this. Nobody approves of aggressive or threatening behavioru towards anyone, of course, but science really must be subject to challenge or it is no longer science.
https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/
“The proposed study – known as ‘FITNET’ – shares many flaws with the debunked PACE trial, which was described as “the height of clinical trial amateurism” by Dr. Bruce Levin of Columbia University. It was subsequently discovered that scientists misrepresented the efficacy of cognitive behaviour therapy and graded exercise therapy in ME patients — but only after a protracted battle to obtain the open-sourced data.
It’s “more meaningless research based on flawed assumptions and bad studies,” said David Tuller, of University of California, Berkeley. “What a huge waste of time and money! When will these people let go of their dysfunctional and delusional belief that CBT is the pathway to ‘recovery’ from this disease? It’s complete nonsense.”
“Time and again, research has shown that graded exercise and cognitive behavioral therapy are not effective treatments for those suffering from ME,” said L.A. Cooper of #MEAction Network UK. “To state that it is curative would be misleading, and ultimately very damaging.”
Meanwhile, researchers worldwide continue to forge ahead with groundbreaking discoveries in ME/CFS: Fluge and Mella of Haukeland University have shown that an anti-cancer drug causes remission in a significant percentage of patients; Ian Lipkin and Mady Hornig of Columbia University have shown disturbed cytokine production patterns that differ early versus late in the illness; and numerous researchers in the US and UK have identified metabolic abnormalities in patients that differ vastly from controls, including Naviaux, who memorably stated that patients’ cells appear to be in a form of metabolic hibernation. Last year’s US Institute of Medicine Report unequivocally stated that ME/CFS is not a psychological illness after critically reviewing over 9000 pieces of scientific literature. The US Agency for Healthcare Research and Quality downgraded its recommendations for CBT and GET, stating that there was not enough evidence to label them effective treatments for ME/CFS.
“We can’t continue to feign ignorance and pretend other countries aren’t speeding ahead. The concept that ME can be improved with solely behavioural techniques is decades old, and frankly, an embarrassment to the nation’s scientific and patient community,” added Cooper”
http://www.meaction.net/2016/11/02/meaction-denounces-use-of-cbt-in-treatment-for-chronic-fatigue-syndrome/.
Janet Dafoe has tweeted that (Prof) Ron Davis says “if UK thinks CBT is so great they should try it on drug-resistant TB, congestive heart failure, cancer, diabetes, burns and aging!”
Well said. Yes, shame on UK “treatment” of ME, shame on its advocates and enablers, shame on the stranglehold of vested interests and their lackeys such as the Science Media Centre.
Here’s some real groundbreaking research news (not that you’ll see the BBC and co. saying so much as a peep about it, of course, Or NICE bothering their pretty little heads to have a look at it, given their woefully xenophobic and head-in-sand attititude to “foreign” research:
http://www.healthrising.org/blog/2016/11/02/complex-neuroinflammatory-conditions-preconference-mecfs-gwi/