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MEA chairman Neil Riley unpicks a central thread in the PACE Trial

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Published online: 26 February 2014
‘Recovered’ – [or] do you only feel better?

“I feel so much better today, I’ll go back to work”. Ah, those halcyon days before you had ME. You were ill, you rested, you got better. Put simply, you had recovered.

So when a trial of treatments for people with ME/CFS reports that many of them had “recovered” you would imagine shouts of joy throughout the ME community.

But joy there was none and for good reason. “Recovery” as defined in the PACE Trial, involving the use of Cognitive Behaviour therapy (CBT) and Graded Exercise Therapy (GET), is not what you think it is.

In medical trials there are ways of measuring your physical abilities and the SF-36 Function Scale is one that’s often used. It’s useful in comparing the burden of different diseases, differentiating the health benefits produced by different treatments, and in screening individual patients.

A score of 85 or above on that scale indicates that an adult, even one who was previously ill, is able to carry out most everyday tasks. The Pace Trial took as patients, adults with CFS/ME who had a point score of 65 or less, so they were clearly ill. They were given CBT and GET.

Now common sense suggests to me that if the treatments had worked well, those patients would have recovered. Their SF36 score would be 85 or over and off to work they would go. Singing merrily as they went. Well, I was wrong.

Originally PACE said that a score of 85 would indicate their patients had recovered their function but later decided achieving a score of 60 was sufficient. So patients could enter the trial “severely disabled” with a score of 65 or less and exit the trial “recovered” with a score of 60. Yes, you read that correctly.

Some could be as ill at the end of their treatments as they were when they started, yet, says PACE, they had “recovered” their physical function.

PACE does a wonderful sleight of hand here by claiming that as the fatigue score for patients showed improvement then that constituted recovery. Imagine you have just finished treatment for an illness and you’re asked: “How do you feel?” You might say: “I feel much better today thanks”. Feeling “much better thanks” is, as we know, not the same as “recovered”.

If I still can’t go back to work, play football or score my 85 points, then I’m not sure I’d feel “recovered” even if I didn’t feel as knackered as before.

Did PACE check their recovery measures by asking patients scoring 60 if they had recovered? Well, blow me down with a feather, they did not. Here’s a suggestion, dear researchers. Why not go back and ask those patients if they can now do what they did before they were ill.

Why is this important to you? Because the treatment you get from your GP is often based on trials. If those trial results are not founded on common sense but on inappropriate formula on the wrong set of data, what use are they?

We live in a world where common sense rules, not in the world of PACE where “recovery” is not what it seems.”

This article first appeared in ME Essential, the quarterly magazine of The ME Association, in February 2014.

MEA Facebook: https://www.facebook.com/permalink....46122749&id=171411469583186&notif_t=notify_me

MEA Website: http://www.meassociation.org.uk/201...al-thread-in-the-pace-trial-16-february-2014/
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
For those outside the UK, the 'MEA' is the 'ME Association', which is perhaps the second largest UK national patient support organisation, in terms of paid members. (I'm not certain about that, but it is a high-profile organisation.)
 

Purple

Bundle of purpliness
Messages
489
Too bad this article is only preaching to the choir. It would be truly satisfying to see this article in a mainstream publication.

It's good for PWME to read this too (not all are aware about the controversy around the PACE trial) - they can then be better informed and be able to articulate this to e.g. doctors who want to send them for GET/CBT. :)
 

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
This comment, is only what, 3 years late?

It might have been useful back in 2011 before they tried to pull the same bait-and-switch again in the 'recovery' paper.
 

Min

Guest
Messages
1,387
Location
UK
In view of Mr Riley's comments, it is most surprising that the MEA (alongside AfME) continue to happily work alongside Prof White of the PACE trial as members of the CFS ME Research Collaberative. Dr Crawley of the SMILE trial of the Lightning Process on children is also a member.


Invest in ME will have nothing to do with the Collaborative, who seem to be achieving nothing.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
These comments were made years ago in various places by various people. Its really good to see it still being put out there though. We need the message reinforced again and again until it reaches the point the PACE papers are retracted, or that people are so aware of the serious flaws that they are discredited.

Indeed, redefinition of terms including "recovery" are one of the reasons I started writing my book.
 

Dolphin

Senior Member
Messages
17,567
(In case anyone missed it)
The journalist, David Tuller DrPH, on Wednesday posted a substantial piece on the PACE Trial:

TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study
http://www.virology.ws/2015/10/21/trial-by-error-i/

There's an introduction and summary at the start if you don't want to take on the whole thing.

It's being discussed in this PR thread:
http://forums.phoenixrising.me/inde...he-pace-chronic-fatigue-syndrome-study.40664/

ME Network have also posted their own summary piece:
http://www.meaction.net/2015/10/21/david-tuller-tears-apart-pace-trial/

Part two of David Tuller's piece is at:
http://www.virology.ws/2015/10/22/trial-by-error-ii/

Cort Johnson has done one of his easy-to-read pieces on it here:

http://www.cortjohnson.org/blog/201...-chronic-fatigue-syndrome-pace-cbt-get-trial/