Terrific Article on PACE Study and ME/CFS in General
Posted , 9 users are following.
The PACE study, as you may know, is the study conducted in the UK that recommended two therapies to cure ME/CFS: Graded Exercise Therapy (GET) and Cognitive Behavioral Therapy (CBT). This article (for which I've provided the link, below), discusses the junk science behind PACE, which has influenced treatment not only in the UK, but in the U.S. (and probably other countries) as well. This article is very well written and researched. It had me fuming. For instance, did you know that CBT was recommended by the PACE study not as a coping mechanism, which I could get behind, but as a cure? An actual pathway out of the illness? Both GET and CBT are still widely recommended. If any of you are told by your doctors to use GET, or just to use exercise as a way of getting better, please read this article and reconsider. It's a very sobering expose of science gone terribly wrong. Link to article:
http://undark.org/article/chronic-fatigue-graded-exercise-pace/
2 likes, 16 replies
jenny19687 jackie00198
Posted
sueliz57 jackie00198
Posted
kezza166 jackie00198
Posted
Oh thankyou. I feel vindicated. I have just read your opening comment about CBT. I was i n the Royal Have when diagnosed with CFS. The doctor was fantastic she diagnosed me and signed me off immediately as unfit for work with CFS. I then ended up with the Psychiatrist. An argument then insued. The psychiatrist insisted it was a psychological illness and should be treated with CBT, the doctor insisted it was physical. Luckily for me the psychologist tasked with providing the CBT took me aside and said don't worry. I know its physical, I know a friend who is a very respected psychiatrist who coincidentally came down with CFS and said there was no way on gods earth it wasn't a physical illness. Sadly due to the continued debate about treatment and push to use GET and CBT to treat me I requested a medical discharge for the sake of my health. I made a plus 90% recovery using sunshine , rest sleep. Vitamins food . repeat repeat.
jackie00198 kezza166
Posted
Yes, when a psychiatrist gets ME/CFS, and says it is not a psychological illness, that rather puts a dent in results of the PACE study. I have to admit, perhaps a mean part of me wishes the authors of that study had to live with this illness for, say, 1 week. Then tell us it's all in our heads.
clivealive kezza166
Posted
kezza166 jackie00198
Posted
elaine62759 jackie00198
Posted
I was a participant in the PACE trial and got CBT and a little bit of GET. I was told before I did it that it was an experiment to see if any of the therapies worked but there was no guarantee that they would work and there was a risk that it might make my symptoms worse. The CBT actually helped me cope with having M.E. mentally but did nothing for me physically. When I tried the GET it made me a lot worse. I also permanently injured my back walking up and down a block of steps which I had to do as a test of my fitness to get on the trial!! A nurse told me that someone else got injured doing this task so they took that part out half way through the survey. Also they ended up with no GET therapist so people doing the CBT and pacing therapy were just telling people roughly what to do. Not everyone even got given the same advice and treatment on the trial so how could it even be a fair study?? Never be a guinea pig for anything. I wasted a year of my life to come away with a back injury and some positive thinking ideas which I could have got from a book. They were also supposed to contact people after treatment to moniter their progress which didn't happen. All I got was a leaflet posted to me with the so called results of how many people had supposedly improved (not many!!). I will read this article with interest.
jackie00198 elaine62759
Posted
Elaine, thank you so much for posting your experience with the PACE trial. It's very interesting to hear about this trial from someone on the inside, who experienced it. It sounds like the study basically self-selected for people who still had a certain level of function, by requiring possible participants to walk up and down a block of steps. What you post is so outrageous it's beyond belief. I've heard so many stories of patients becoming worse through GET. At least we can help get the word out to the patient community through this forum. I hope others who participated in the trial will post here. As I mentioned in my post, I think (as you've said) that CBT can be a useful coping mechanism. But when authors of the PACE trial claim CBT can help cure the illness, they're going beyond the pale. Their basic premise, that ME/CFS is a psychological illness, is an insult to sufferers everywhere, and has done great damage to medical research, to our ability to get disability, and to our health.
elaine62759 jackie00198
Posted
Hi Jackie, yes it was certain people they were looking for to participate in the trial. You had to be not bedbound as you had to be well enough to attend the appointments but not too well either. To get on it I had to first wear a tag on my ankle for a week which I couldn't take off (apart from washing) which monitured your activity level which they fed into a computer. Then at the hospital they made you walk up and down a step block with 2 steps on it 20 times with a heart moniter on and after that you had to walk up and down a corrider constantly until you were shattered and not able to walk any further. After that you had to fill out a huge questionnaire about your symptoms. I was ill for weeks after the assessment then I had all the travelling to and from the appointments when I got on the trial. When I was doing the GET part they told me to buy and exercise bike and I was supposed to increase the time I went on it every week. Stupidly I wasted money buying one and feel like I was going to pass out when I was on it and had a huge relapse. They went on about body deconditioning at the time trying to make me believe that I was just really unfit and that exercise would make be better. I was so desperate to get better I just tried doing what they said and made myself a lot worse. They were implying at the time that it was 'all in the mind' and made me feel like it was my fault I wasn't getting better as I wasn't pushing myself hard enough. If I had know what it would be like I'd never have done the trial in the first place. M.E./CFS is a real physical illness - it's not 'all in the
?mind' !!! Thanks for putting the article on - it was really interesting reading.
jackie00198 elaine62759
Posted
Again, very interesting, Elaine. I just looked up the credentials of the authors of this study. They are all involved in psychiatry or psychology, especially the lead, Peter White. So I believe they had a preset notion that ME/CFS was a psychological illness--then set out to prove that idea. I think they conveniently discarded any evidence that didn't agree with their theory. This is the worst science imaginable. They have even tried to block their original statistics from being made available to the public. This in itself is suspect. Any scientific study should make itself available for peer review. That's the very basis of scientific research.
elaine62759 jackie00198
Posted
Yes, I'd heard about them trying to block the results - think that says it all! I remember one of the questions I had to answer at the beginning and end of the trial was 'do you believe that M.E./CFS is a psychological or a physical illness?' I answered a physical illness at the beginning and after the trial. Think they were hoping people would start off saying physical then change their minds to psychological at the end to prove their theory that it's all in the mind.
sueliz57 elaine62759
Posted
The whole thing beggars belief! Thank you Elaine and Jackie so much for the information. I'll pass it on to my daughter's friend who is going thro the diagnosis process. Thanks again both.
dawn94288 jackie00198
Posted
Wow! I'm thankful for the journalist who wrote that article. I'm in the U.S. and my primary physician who we have loved for years just told me to excercise my way out of this illness. What I thought to myself when he said it was, "He is uneducated about this illness". I suppose a more accurate thought would have been, "He has been falsely educated concerning this illness".
nan16458 jackie00198
Posted
Ladyliegh jackie00198
Posted
The PACE study, was a joke, so many things were incorrect & done unprofessionally. There is a lot of info out now on the list of things wrong with the study. Not to mention it only dealt with mild cases, not the really sick & incapacitated. I was furious when I heard about it. I have had ME/CFS for 30 years, trust me when I say, if it was that simple to cure, we would all be well.
When someone is on the mend from ME/CFS, a gentle exercise routine is helpful to regain stamina. But not forced exercise or overdoing it, this will cause a relapse & can make someone sicker & weaker.
elaine62759 Ladyliegh
Posted
Totally agree with you. I've had it 21 years now and know from awful experience on PACE trial GET does not help - it make you worse!! I was supposed increase my walking every week then speed up my pace so I was power walking between lampposts plus go on an exercise bike and increase the time on that. You can imagine the effect it had on me!!! I've since managed to build up my walking over a long period of time only trying it when my body lets me. It's ridiculous to suggest an exercise programme where you increase your activity all the time will make you well when you have M.E./CFS. When you have have this illness you are not unfit and lazy as some people seem to think - you are ill!! I've also found gentle yoga stretches helpful - but only when my body lets me. I think the key to managing this illness is to listen to your body not work against it.