TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study

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Tom Kindlon

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Vincent Racaniello https://plus.google.com/+VincentRacaniello/posts/APubWEXPL9W
Shared publicly - 21 Oct 2015

Journalist David Tuller returns to virology blog with an in-depth piece about the flawed PACE trial for ME-CFS. David has written previously about ME-CFS on virology blog, and now tackles this flawed trial which concludes that exercise is good for patients with this disease. A must read for anyone with ME-CFS who is considering going along with the conclusions of PACE.
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Graham

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The David Tuller articles are brilliant, but they are long and heavy, so if you want an easier way in for someone, remember that a group of us produced a basic video showing how little was needed to "recover" according to PACE. It's not in the same class as David's work, but it may be useful.
 
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Tom Kindlon

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Graham said:
The David Tuller articles are brilliant, but they are long and heavy, so if you want an easier way in for someone, remember that a group of us produced a basic video showing how little was needed to "recover" according to PACE. It's not in the same class as David's work, but it may be useful.
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Cort's summary piece includes three of your other videos on the PACE Trial:
http://www.cortjohnson.org/blog/201...-chronic-fatigue-syndrome-pace-cbt-get-trial/

All four are definitely worth a watch.
 
Graham

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Some of you have commented about doctors telling you not to join any ME support groups or get onto the web. One main reason for this is a piece of "research" from way back, where a large group of patients were looked at before and after attending ME clinics. (Of course, the assessments were by questionnaires, not real, objective data!)

They found that people involved with such support groups showed less improvement than those that were not. Now this could just be that they were less susceptible to changing their answers in response to exhortations by support staff to take less heed of their symptoms. But assuming that it really did measure a difference, as a mathematician my first step would have been to rattle off in my mind that correlation does not mean cause (in the UK, months with more consonants in their name have more rainfall overall, but changing December to Deebe is unlikely to reduce rainfall). So now it is important to consider all possible reasons, and look for ways of testing them. The only one that they considered was that membership prevented patients from benefiting from treatment (remember that the "treatment" is talk therapy) by poisoning their minds against it. But of course, one equally valid explanation is that membership of a support group meant that patients had already experienced a measure of this benefit by finding out about the illness, pacing etc, and, in the year or ten leading up to the appointment at the ME centre, had acted on it and had already experienced that benefit.

Curiously enough, this didn't occur to any of them, and the fable has been repeated throughout the medical profession, probably because it panders to their prejudices.
 
Snowdrop

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moosie said:
I was repeatedly warned by doctors not to read anything about it on the web. Also told not to join any of the patient groups/charities. (I think I was warned particularly against the Me Association.) By doctors that seemingly had no connection to one another. And I didn’t for years. A Doctor told me. Continued pushing myself a bit more all the time (after a year completely bedbound at the start). Eventually started getting worse and worse – kept pushing – mind over matter. I charged on with my life as much as I could. I had/have so much that I wanted/want to do with my life. Who wants to be ill?? Now mostly housebound, mostly bedbound. How different would my life be now if I’d had proper advice and maybe even a little help? Who knows. I’ve been ill about 20 years and I’ve never had a good day – health wise – in all that time. Not one. The same as many people here.

This amazing piece by Tuller will have to be recognized by the UK at some point – you just can’t deny the information in it. Slam-dunk. Thanks to the tenacity and hard work of, in particular, Tom Kindlon and the others who have been making a stink with FOI requests. It’s just how long is it going to take?? I’m a Guardian reader and I’ve been so disappointed that they have been so - excuse me – crap over this illness. I’m going to try to write them a letter. This has taken me hours to write so it may be a while.
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The guardian writer of all things crap Re ME is Haroon Siddique. Take your time with the letter. Then sleep on it and go over it.
Good luck.
I wish we could collect all the stories like yours of people who gave GET an honest go and found the hard way that it truly does not work.
Maybe you could find a few people here and quote them with their permission.
 
Marco

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@Graham

Did their analysis include duration of illness as a variable? I hadn't accessed any forums until the XMRV story broke in Oct 2009 by which time I'd been PWME for twenty nearly 25 years. Even in these days of ubiquitous membership and use of social media I would bet that many people don't resort to forums until they've exhausted the standard medical routes.

ETA - Sorry I'm listening to the F1 race while writing this. The point I was trying to make is that forum members I believe are more likely to be long term, more severe or possibly less susceptible to bullsh*t.
 
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SOC

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Denise said:
I wish I really believed that teens have a better prognosis and that some actually recover....
In those who seem to have recovered, I would very much like to know how they were originally diagnosed, how recovery is defined (what level of activity do they actually have....)....
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FWIW, my daughter was 12yo when we both came down with the viral illness that initiated ME for us. She was diagnosed by Dr Lapp and Dr Lerner at different times, and had her diagnosis confirmed by Dr Rey quite a few years later. There's not much doubt that she has ME.

Although she and I got the same treatments, she was always less ill than I was and responded better to treatments. At worst, she was moderate and would have had to drop out of college if she hadn't been living at home so that we could drive her from class to class when necessary. Currently she is in a sort of remission. She lives a normal life -- married, working full-time, engages in social activities, travels. She has not had a PEM episode in several years. She is still under the care of an ME specialist and takes many symptomatic treatments to maintain her ability to function. She does not engage in competitive sports or run for exercise. We don't know if those activities would PEM her and have no interest in experimenting with that at this time. We do not consider her cured, but she's fully functional.

Given that my daughter and I got ill at the same time with the same flu-like illness and that she has always done better than I have, I am willing to accept, tentatively, that the young can (not will, no guarantees) have a better prognosis than those of us who became ill later in life. There are a number of reasons why this might be true, but we really have no evidence to indicate if there's any validity to any of the ideas. We need more research.
 
Graham

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The trouble is, SOC, that there are always "on the other hand" examples. My son went down with ME ten years before I did, when he was 8, but there isn't much difference between us. You are right that we need more information, more accurate information.
 
SOC

SOC

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Graham said:
The trouble is, SOC, that there are always "on the other hand" examples. My son went down with ME ten years before I did, when he was 8, but there isn't much difference between us. You are right that we need more information, more accurate information.
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True enough. :) One case does not a pattern make. All I'm willing to stand behind atm is that it may be true in general, but that we really know diddly squat about this illness right now.
 
Hutan

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SOC said:
True enough. :) One case does not a pattern make.
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Ha, FWIW, three of us in the family got ME at the same time. Teenage daughter has essentially recovered after two years while teenage son and me (middle aged woman) still sick at mild/moderate level after 3 years.

I was diagnosed with ME when I was 10 (a long time ago) and recovered completely within a year until this latest bout.

SOC said:
All I'm willing to stand behind atm is that it may be true in general <that young people are more likely to recover>, but that we really know diddly squat about this illness right now.
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Yep

http://emerge.org.au/dr-kathy-rowe-understanding-mecfs-young-people/#.Vi1dfums5Cg
Kathy Rowe's work on recovery rates in young people is interesting. She followed up nearly 800 young CFS patients. This link has a set of slides with data from the study. Recovery rates in two cohorts were 33% and 50%. 67 patients were followed for at least 12 years; of these 68% reported recovery (although hard to know if it was complete recovery to previous levels of health).
 
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Graham

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@Marco
Sorry about the delay: I had to find the study! My filing system is completely structured with files, sub-files, sub-sub-files etc, and is so brilliant I can lose anything at the drop of a hat. So I did an online search, remembering that it was one of our old favorites involved. I didn't succeed with "Wessely", but hit the jackpot with "Sharpe" (bjp.rcpsych.org/content/181/3/248): I also got this one with Bentall (bjp.rcpsych.org/content/181/3/248). Apparently they both considered length of illness, and found no correlation. But frankly, anyone who only relies on answers to questionnaires to measure the success of anything needs to have attended one of my classes where I proved that maths was the best subject in the school (90% approval rate).
 
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Tom Kindlon

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Graham said:
@Marco
Sorry about the delay: I had to find the study! My filing system is completely structured with files, sub-files, sub-sub-files etc, and is so brilliant I can lose anything at the drop of a hat. So I did an online search, remembering that it was one of our old favorites involved. I didn't succeed with "Wessely", but hit the jackpot with "Sharpe" (bjp.rcpsych.org/content/181/3/248): I also got this one with Bentall (bjp.rcpsych.org/content/181/3/248). Apparently they both considered length of illness, and found no correlation. But frankly, anyone who only relies on answers to questionnaires to measure the success of anything needs to have attended one of my classes where I proved that maths was the best subject in the school (90% approval rate).
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Bourke (2015) has said the following about the PACE Trial which will presumably be published in a PACE Trial paper had some stage:
Support Groups. Membership in support groups was associated with a worse outcome in the PACE trial. This is surprising and conflicts with reports for other disorders, although the reasons for this association are unclear.
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"Worse outcome" probably means less improvement/a lower mean improvement on average rather than specifically meaning more deteriorated.
 
Graham

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Alex, you taught me so much. But of course, that is only my belief. I'm thinking of creating a questionnaire to test whether it is actually true.

question 1: did Alex teach you very much?
multiple choice response: (a) yes (b) certainly (c) without doubt (d) clearly
 
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Sean

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Graham said:
They found that people involved with such support groups showed less improvement than those that were not. Now this could just be that they were less susceptible to changing their answers in response to exhortations by support staff to take less heed of their symptoms. But assuming that it really did measure a difference, as a mathematician my first step would have been to rattle off in my mind that correlation does not mean cause (in the UK, months with more consonants in their name have more rainfall overall, but changing December to Deebe is unlikely to reduce rainfall). So now it is important to consider all possible reasons, and look for ways of testing them. The only one that they considered was that membership prevented patients from benefiting from treatment (remember that the "treatment" is talk therapy) by poisoning their minds against it. But of course, one equally valid explanation is that membership of a support group meant that patients had already experienced a measure of this benefit by finding out about the illness, pacing etc, and, in the year or ten leading up to the appointment at the ME centre, had acted on it and had already experienced that benefit.
Click to expand...

Two other possibilities are that sicker patients are less likely to benefit from these 'therapies', and (independently) are more likely to seek out support groups.
 
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