Discussion in 'Latest ME/CFS Research' started by Tom Kindlon, Mar 20, 2017 at 12:00 PM.
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There is a 100-word limit for this journal's abstracts so hard to say that much. Full paper is over 3000 words.
Thanks to the reviewers and to those who gave me feedback on earlier drafts.
Well done Tom.
The abstract is excellent, but the article is behind a paywall, so I can't access the rest.
I always suspected those with ME with PEM would have been unable to keep increasing their activity, and would have self protected by not adhering to the set regime, either by cutting drastically back on other activity in order to do the prescribed walks, or by not doing the exercise as they were told to.
I hope for their sake they did listen to their bodies. In that case there would indeed have been less harm than there might have been, so the trial gives a completely false impression of safety.
That's yet another reason why the trial was invalid. They should have worn activity meters throughout the trial.
I am glad to see that written on a paper !!!
That´s something I will show to some of the doctors who still think GET is the way to go.
Thank you so much for this great work
As you know, there are a number of critical commentaries (including one from CS) on the PACE trial awaiting publication by JHP and it would be really great if both public and health professionals could read them in full
The MEA has paid for open access publication of the Wilshire paper on reanalysis of the PACE trial data
Do you know what JHP would change for making these commentaries open access?
I can't remember seeing the figures (usually you get asked if you want to pay for open access).
This is what turned up when I did a search but there is a chance it is not correct:
You may be able to bargain them down to a lower price.
Also if you pay from more than one, perhaps you would get a reduction.
Great work, Tom!
At one point I had a Dr say to me that trying graded exercise was unlikely to do me much harm even if it didn't work. I sent him a copy of the paper you wrote regarding the under reporting of harms on the PACE trial. That was the end of that discussion. While we wait for the PACE edifice to come crashing down, your papers are helping on the "front line".
Thank you very much. That is nice to hear as papers, particularly when I am the sole author, take a lot out of me.
Here's the paper she is referring to. It's open access:
@Tom Kindlon - thank you so much for all your work on our behalf! It's very much appreciated!
I have one question re your abstract where it says:
When you say "reporting of harms was much better" - do you mean there was more accurate reporting of harm, or that less harm was reported than in other trials? or maybe something else?
More accurate reporting of adverse events. Most ME/CFS trials of CBT or GET don't mention the issue at all. People just assume there were no adverse events because overall people on average either didn't deteriorate or else improved on the measures used. However you can have a group of people who improve on average but have people within the group who got worse, or suffered specific adverse events.
Congratulations, @Tom Kindlon and thank you for your hard work!
I understand from @Keith Geraghty that there will be 10 special commentary articles of the PACE trial in one journal.
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The cost of an individual single print issue would be £6? is that correct? Definitely would be worth buying the paper version (a souvenir copy) and also a great way of thanking the journal.
It will be interesting to see if they can find any supporters who can come up with coherent arguments.
@Tom Kindlon you are a hero! Thanks.
@Tom Kindlon Were you able to find any studies which showed harm from CBT or GET? (By harm I mean worse outcomes or worse adverse effects from CBT/GET as compared to either a control group or another treatment group.)
Your abstract implies that there were none, but I wanted to ask directly.
Given the BPSers hog all the research fund & not just all the psych research funds......I think not. Why look for something you don't want to find? Much better to let well meaning medics (some of 'em are well meaning) assume that there haven't been any studies because none are needed.
After all - exercise can't possibly harm anyone, right?
Do you honestly think they would publish a study that showed their treatments don't work?
It's an ethical issue because people are so pro and against GET. Proponents will design a trial so that only very serious harm is recorded (not necessarily cynically but they don't expect problems). People who already believe it's harmful can't really design ethical research trials because they would be knowingly inflicting harm. This is particularly true when you think of how long people say they are worse (I'm thinking of this quote)
The best evidence is survey data which unfortunately isn't taken that seriously
I know this is a pipe dream, but what would be enlightening would be a qualitative study of the original PACE participants asking them about their experiences and perceptions of the study.
You can also try a Google Site Search
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