Interesting article regarding ME in the Daily Mail.
Posted , 6 users are following.
i found this article in the Daily Mail newspaper a few days ago. I found it may offer a ray of hope that sometime soon there will be a blood test to prove the existence of this much maligned/readily dismissed disease and maybe a medicine to cure it. The article is in the Daily Mail archive. The article was published on the 15th August 2017. If you type 'M.E study'into their search engine you will come across it. Regards to all the fellow sufferers out there and chin up if you've got the energy that is.😓🛏
2 likes, 7 replies
jenny19687 simon13633
Posted
Thanks for posting. It's frightening how they were so desperate for the real results not to come out and that the whole approach in the uk is based on the flawed results.
simon13633 jenny19687
Posted
Yeah, disgusting and highly unethical. The loss of grant money will have played a major part in their immoral actions no doubt. A lot of 'scientists' would be out of work without their grants/bungs. At least the scientific community are at loggerheads with each other now. Shows the tide is turning and new opinions are being formed by people in the field of medicine/healing that this isn't just a psychological illness. I know pain when I feel it and my body has aches and strained muscle like pain almost all over and if this is an illness all in the mind I should be able to think my pain away just as easily as I'm supposedly thinking it up but you can't can you? That being because it's not psychological in origin.
cmann30 simon13633
Posted
I can't find it. Could you please send me a link? Thnx.
elaine62759 simon13633
Posted
Thanks for highlighting this. I was on the PACE trial and the GET made me worse and the CBT helped me cope better mentally but no change physically. I also ended up with a back injury doing a step test which they made you do to get on the trial which they later took out as someone else injured themselves too. There were a lot of irregularities with the trial and I wish I'd never done it!
Fidd elaine62759
Posted
Sorry to hear about your problems with PACE. It was so unfair on participants, who put themselves out to try to help other patients get useful info on patients, only to have the trial's researchers to poor work and then misrepresent their results. David Tuller pointed out that their failure to inform participants of the researchers conflicts of interests with the insurance industry actually breaches the Declaration of Helsinki.
They didn't report in the PACE papers that they stopped doing the step test due to injuries occurring, which would be another strange omission.
?The way they released results for this outcome was very odd though, with it only being included in graph form in 'Rehabilitative therapies for chronic fatigue syndrome: a secondary mediation analysis of the PACE trial?'. The supplementary materials for this paper showed 62-70% of participants completed the step-test (varying between groups), but I couldn't see anything about them dropping this outcome for some participants.
elaine62759 Fidd
Posted
It was a nurse that told me about them taking out the step test. Also the therapist doing the GET part left halfway through the year some people just had to get advice on GET from the CBT or Pacing therapist instead of the advice from the person who was meant to be specialised in the GET until they got another GET therapist. This is what happened to me.
?When I agreed to participate in the trial I hadn't had any help at all with the illness so was desperate to try anything in the hope that it would help. It wouldn't be so bad if I hadn't injured my back which is still a problem for me now. I know someone else who was on the trial too who got pacing and CBT and they probably found it more helpful than me. They refused to do the step test. Wish I'd done the same! Don't feel the whole thing was a fair trial at all. However you can't turn back the clock and learn from your mistakes!!
Fidd elaine62759
Posted
Interesting stuff.
"Also the therapist doing the GET part left halfway through the year some people just had to get advice on GET from the CBT or Pacing therapist instead of the advice from the person who was meant to be specialised in the GET until they got another GET therapist. This is what happened to me."
?They've not declared anything like that in their papers either, which would have been a major breach of their protocol. If things like that happened it's important that readers of the trial's papers are informed of them. Sounds like there are even more problems with PACE than people realise! It could be worth you contacting David Tuller about your experiences?
"When I agreed to participate in the trial I hadn't had any help at all with the illness so was desperate to try anything in the hope that it would help."
?Yes, I think that a lot of people are like that. So many patients are so desperate that medical staff can get away with a lot of quackery so long as they speak in a kindly tone of voice and act as if they're taking patients' symptom seriously and trying to help. Even though a lot of the quackery around CBT/GET has done so much to stigmatise CFS, individual patients can still feel grateful to CBT/GET therapists just for not completely dismissing them. Hopefully we'll be able to set higher standards than this!