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NYT: "Getting It Wrong on Chronic Fatigue Syndrome" by REHMEYER and TULLER

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Yogi

Senior Member
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1,132
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Murph

Murph

:)
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1,799
Seems like it's in the print version as well as online:

"A version of this op-ed appears in print on March 19, 2017, on Page SR4 of the New York edition with the headline: Wrong on Chronic Fatigue."

Which is great as a sign they're giving it real coverage. I am very happy!!

If I may, as a writer, register a small complaint it is that the writing is a little too dense to reach a vast lay audience.
 
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Yogi

Senior Member
Messages
1,132
Murph said:
Seems like it's in the print version as well as online:

"A version of this op-ed appears in print on March 19, 2017, on Page SR4 of the New York edition with the headline: Wrong on Chronic Fatigue."

Which is great as a sign they're giving it real coverage. I am very happy!!

If I may, as a writer, register a small complaint it is that the writing is a little too dense to reach a vast lay audience. And this complex sentence, which is the hook for the whole piece, relies on the extremely unimpressive verb 'overstated' while burying it in the middle of the sentence amid a jumble of clauses.

"The main study that has been cited as proof that patients can recover with those treatments overstated some of its results"

It's just not how you make a concept pop. Compare:

"One study has been cited time and again as proof that patients can recover with those treatments. But it has come into question. In fact, experts now believe some of its results were substantially exaggerated."

(Please forgive me this digression. I am simply a student of the craft of making writing effective, and mostly I am delighted to see the world's most respected newspaper publish this! I suspect it will have a tremendous effect on the status of PACE.)
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Does anyone know if the NYT paper version can be bought in the UK?

Would be great way to show thanks to NYT and to keep the paper copy as it is a big moment in destroying Pace given the circulation and respect that the NYT has.

Been waiting for years for this 30 year scandal of wessely and his partners in crime to breakthough in major news media.
 
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Forbin

Forbin

Senior Member
Messages
966
The 2011 David Tuller article in the NYT that Julie Rehmeyer refers to can be found here.

The article is broadly about the importance of accurate case definitions of illnesses. It specifically uses the PACE trial as an example of where the use of an insufficiently narrow case definition (Oxford) could impact the treatment of subgroups who happen to fall under that definition.

The PACE authors responded that the trial was also judged effective in participants who had met two other (unnamed) definitions "favored by some scientists." They concluded by answering a question raised in Mr. Tuller's original piece:
So to Mr. Tuller’s question “Does the evidence from that study prove that these strategies would help patients identified as having chronic fatigue syndrome through very different criteria?,” the answer is “Yes, it does.” Patients and their doctors now have robust evidence that there are two safe treatments that can improve both symptoms and quality of life, however the illness is defined.

http://www.nytimes.com/2011/03/08/health/research/08fatigue.html
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Tuller countered:
The gold standard for making comparisons across groups of patients identified by three varying case definitions would be a study with three completely separate cohorts, not one large sample with two embedded subgroups.
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Little did Mr. Tuller know how much more there would be to write about concerning this study.

[Does anyone know what those "two other definitions" of CFS were, or if those results were reported?]
 
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A.B.

A.B.

Senior Member
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3,780
At some point, when a critical mass of awareness is reached, nobody will want to be associated with CBT/GET for CFS or PACE anymore. Especially when it becomes apparent that there is a real risk of deterioration and harm, and how much dishonesty and incompetence was involved.

We have to keep working on raising awareness of the problems.
 
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Barry53

Senior Member
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2,391
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UK
Incidentally I think the artwork accompanying this article, by Jacqueline Tam, is superb and thought provoking and could itself help some people perceive ME/CFS differently. A sort of quasi-sleeping beauty syndrome, where a person is overwhelmingly locked down into minimal activity/interaction, and can only observe rather than engage.

Edit: When I wrote the above I had missed Aurator's earlier post commending the artwork. In fact Aurator spotted what I missed re the doctor :redface:.
Aurator said:
Well done also to Jacqueline Tam for her very sensitive artwork accompanying the article! The magnitude of the problem that is ME and the Liliputian role doctors have so far played in tackling it is well summed up in the size disparities of the figures in her image, which also succeeds in giving a quiet dignity to the notional patient.
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Barry53

Senior Member
Messages
2,391
Location
UK
A.B. said:
At some point, when a critical mass of awareness is reached, nobody will want to be associated with CBT/GET for CFS or PACE anymore. Especially when it becomes apparent that there is a real risk of deterioration and harm, and how much dishonesty and incompetence was involved.

We have to keep working on raising awareness of the problems.
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Exactly. We are in the midst of a transition, history in the making, and such times are often hard to perceive in the time. Your phrase "critical mass of awareness" is spot on; the point at which the snowball has had its last push, after which it carries on down the slope on its own. The more public awareness perceives the reality of ME/CFS, and the role PACE and its authors have played, the nearer the point where advancing towards truth and justice will become self-sustaining, carried along by its own mass of public awareness.

Your phrase "nobody will want to be associated with CBT/GET for CFS or PACE anymore" is also crucial; I think that is becoming evident and playing out now. Such behaviour tends to be exponential - each act of dissociation from PACE itself encouraging/provoking further such acts of dissociation - the snowball effect. It becomes unstoppable (PACE authors and proponents please note).

We would never have got anywhere near this point without "working on raising awareness of the problems", and now is the time, more than ever, to keep on with that. The race is not won until it is done, and you have to continually strive for the winning post until it is.
 
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arewenearlythereyet

Senior Member
Messages
1,478
really good news. A couple of missed opportunities to highlight the science though. I get the link to viral onset to tie in with the publication of the letter but they could have made more of key science links to dysfunctional metabolics etc. A lay person would ask ...so what is it then? Reading this, they may be given the impression that it was virus that needs treating.

The significance of this is an enormous step forward...I hope the British press pick up on it particularly the link to the government considering GP cost saving in the NHS via carting us all off to MUS clinics to receive psychotherapy (ever hopeful).
 
A.B.

A.B.

Senior Member
Messages
3,780
I wonder if we will see large scale legal action by GET victims. If it is demonstrated that the mitochondrial problems can result in exercise being very harmful, and that patients were for twenty years trying to tell authorities and researchers that exercise is harmful only to be ignored, and that maybe PACE even covered up harm, then yes we may well see legal action.

There is still a lot of PACE data that hasn't been investigated independently. This includes audio tapes of patients speaking with therapists. Do these tapes contain evidence of harm? Is this why PACE authors are desperately trying to "protect patient anonymity"?
 
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Barry53

Senior Member
Messages
2,391
Location
UK
A.B. said:
I wonder if we will see large scale legal action by GET victims.
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I hope so. Honest mistakes are one thing, but wilful arrogant pursuance of strategies that put self interests ahead of patient safety, should at the very least warrant a public enquiry. There has never been any solid proof that GET does not risk harm, and in any other safety-implicated field, that would be enough to preclude its use until there was such proof.
 
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user9876

Senior Member
Messages
4,556
A.B. said:
I wonder if we will see large scale legal action by GET victims. If it is demonstrated that the mitochondrial problems can result in exercise being very harmful, and that patients were for twenty years trying to tell authorities and researchers that exercise is harmful only to be ignored, and that maybe PACE even covered up harm, then yes we may well see legal action.
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The problem is who would the legal action be against.

But that is one of the reasons for pointing out the flaws. The authorities cannot say we just looked at what the best science was at the time because they dismissed patients pointing out flaws without putting any serious thought in. So we have the MRC who failed in any governance role to ensure that PACE was correctly reported; we have NICE who failed to take account of the issues with PACE and other trials (particularly over patient reports of harm and only subjective improvements). We then have QMUL who failed to provide proper governance over PACE and spend considerable sums of money to keep data secret so as not to expose the issues. We also have the SMC, SAS and doctors professional bodies who were happy to push a line (or support those with the line) that stigmatized patients by saying they were anti-science nutters who just harassed scientists to deny that ME is psychological. Such view are pervasive and yet would be frowned on if you changed the group to any other patient or minority group.
 
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arewenearlythereyet

Senior Member
Messages
1,478
A.B. said:
I wonder if we will see large scale legal action by GET victims. If it is demonstrated that the mitochondrial problems can result in exercise being very harmful, and that patients were for twenty years trying to tell authorities and researchers that exercise is harmful only to be ignored, and that maybe PACE even covered up harm, then yes we may well see legal action.
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There must be a lot of people who could claim. I guess without independent testing immediately prior to and after the "treatment" it would be difficult to prove one way or another. The best way would be for a study to show that GET definitely does harm....this would still rely on mainly anecdotal evidence (backed up by the latest scientific theory) so any study would have to have a load of respondents (500 plus?). Any court could then refer to this and this could unlock any claims by simply proving you received the treatment. A bit like PPI insurance. Sadly we don't yet have that crucial piece of evidence. I wish we did.
 
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