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

[lilpink]

https://www.theguardian.com/comment...ill-health-services-catch-up?CMP=share_btn_fb

 

[user9876]

https://www.theguardian.com/comment...ill-health-services-catch-up?CMP=share_btn_fb

That's quite a change for the guardian although it seems to be written for the Australian version of there website. After the reanalysis was published on the virology blog they ran a story written by White defending himself and accusing patients of tweeking the definition of recovery. They then refused to correct such factual errors.

More generally negative comments about PACE have often been removed from below stories so as a paper the Guardian have seemed quite determined to defend PACE.

Hopefully this represents them loosing some influence over journalists.

 

[lilpink]

Hopefully this represents them loosing some influence over journalists.

I agree. It is something of a volte-face. I won't hold my breath that it's a permanent situation however!

 

[AndyPR]

Don't forget that even if you aren't inclined to comment on the Guardian comment, it's easy to sign up for a free account with them and upvote the useful and/or accurate comments on the article.

 

[Snow Leopard]

To quote charles shepherd on MEA fb

Charles Shepherd There are also a number of critical commentaries on the PACE trial being prepared for publication in a leading UK medical journal. I cannot say any more at this point but this UK coverage will add to the pressure on Psychological Medicine to carry out an independent analysis of the data in the recovery paper that they published. Dr Charles Shepherd - Hon Medical Adviser, MEA

They are being published in the Journal of Health Psychology, some have been published already (and discussed on this forum).

But of course that does mean that if there really are any decent proponents out there of a more rational form of BPS (is there one?), then now is the time they really need to stand up for honesty and truth, and decide which way they want history to judge them.

Lenny Jason is a proponent of rational BPS - he has done research in all the domains and comes to much more reasonable conclusions. (Lenny who incidentally signed the letter calling for the retraction of the Psych Med Recovery paper and wrote a commentary in the Journal of Health Psychology).

 

[Barry53]

Why would you feel sorry for them? Normal people who are just not that smart accept their limitations, not chase patronage by groups with conflicted interests in order to pursue confected glory in their field. What did they think was going to happen?

Sorry if that's overly nasty or poorly expressed.

I think @JamBob is saying that whilst we think of "the BPS crowd" as being mainly those in the Weasley brigade, there may be others not under his sphere of influence with less obsessive views. Almost certainly are in fact.

 

[JamBob]

Why would you feel sorry for them? Normal people who are just not that smart accept their limitations, not chase patronage by groups with conflicted interests in order to pursue confected glory in their field. What did they think was going to happen?

Sorry if that's overly nasty or poorly expressed.

Because on some human level - it is embarrassing and humiliating to be shown up in a very public way in the international press - hence I feel sorry for people who this happens to - even if they have done something very bad.

Mind you, I felt sorry for known tyrant Sadaam Hussein when photos showing him as a vulnerable older man in his Y-Fronts were broadcasted round the world - so maybe I'm a bit odd like that!

I suppose at the crux of my post was the feeling that the regime is about to come toppling down - those who previously held all the power are about to be made very vulnerable and I feel sorry for them on some human level. Even though they have treated us badly, things are going to improve for us whereas things for them can only get worse.

 

[slysaint]

things are going to improve for us whereas things for them can only get worse

here's hoping

 

[Cheshire]

FWIW
Two follow-up letters published by the NYT:

One by Fred Friedberg and none from White, Chalder and co.

https://www.nytimes.com/2017/03/27/...d-treating-chronic-fatigue.html?smid=tw-share

 

[BurnA]

One of the letters states :

The PACE trial referred to in the essay might be wrong in emphasizing increased exercise for patients with chronic fatigue syndrome. But at least the researchers acknowledge that the illness exists.

Not sure what to make of that. It's OK to do really poor research harming a patient population because at least you recognised that the disease exists?

 

[lilpink]

Not sure what to make of that. It's OK to do really poor research harming a patient population because at least you recognised that the disease exists?

I read that too. A mindset which is part of the problem even though whoever wrote it presumably thinks that sort of mindset is part of the solution. No wonder it's such an uphill struggle... with friends like those etc...

 

[Countrygirl]

https://www.nytimes.com/2017/03/18/opinion/sunday/getting-it-wrong-on-chronic-fatigue-syndrome.html

SundayReview | OPINION
Getting It Wrong on Chronic Fatigue Syndrome
By JULIE REHMEYER and DAVID TULLERMARCH 18, 2017

Continue reading the main storyShare This Page

• main study that has been cited as proof that patients can recover with those treatments overstated some of its results. In reality, the claim that patients can recover from these treatments is not justified by the data.
  
  That’s the finding of a peer-reviewed preliminary re-analysis of previously unpublished data from the clinical trial, the largest ever for chronic fatigue syndrome. Nicknamed the PACE trial, the core findings of the British study appeared in The Lancet in 2011 and Psychological Medicine in 2013. Patients battled for years to obtain the underlying data, and last spring, a legal tribunal in Britain, the General Regulatory Chamber, directed the release of some of the study’s information.
  
  The impact of the trial on treatment options for the estimated one million chronic fatigue patients in the United States has been profound. The Mayo Clinic, Kaiser Permanente, WebMD, the American Academy of Family Physicians and others recommend psychotherapy and a steady increase in exercise.
  
  But this approach can be harmful. According to a 2015 report from the Institute of Medicine, now the National Academy of Medicine, even minimal activity can cause patients prolonged exhaustion, muscle pain, cognitive problems and more. In severe cases, a short conversation or a trip to the bathroom can deplete patients for hours, days or more. In surveys, patients routinely report deterioration after a program of graded exercise. The psychotherapeutic intervention also encourages patients to increase their activity levels.
  
  Many patients (including one of us) have remained ill for years or decades with chronic fatigue syndrome, also known as myalgic encephalomyelitis, or ME/CFS. It can be triggered by a viral infection, resulting in continuing or recurring immunological and neurological dysfunction. The Institute of Medicine dismissed any notion that it is a psychiatric illness.
  
  Continue reading the main story

 

[alex3619]

I think a thread might have been started on this last year. Its a good commentary.

ps It appears the threads have been merged now.

 

[boolybooly]

I trust what I have read of Prof Leonard Jason's work as he has the insight which comes from having the condition himself.

I am sure there is value in down to earth, humane and logical psychological study of the vicious cycle of push crash in ME and other secondary aspects of the disease. Including the way social expectation and personal frustration exacerbate the suffering of PWME and contribute to mismanagement.

There is also how ME pathology affects our brains and can increase emotional lability and cognitive impairment causing social difficulty that way.

There is also the possibility that there is scope for broadly applicable studies on the way sickness changes behaviour as a result of instincts which have evolved within a social context and which affect our social lives. Something we barely understand intellectually but which is commonly recognised intuitively.

There may even be a BPS level explanation for the way some professionals have colluded to build careers out of misrepresenting the condition, though that would probably also require a degree in criminology which I dont have, suffice to say narcissism, megalomania and resulting psychopathology in medical professionals is a complex and difficult area of study. IMHO the treatment of PWME from some quarters is up there with putting insulin in I.V. feeding tubes and deserves thorough and transparent scrutiny from relevant bodies including the police.

For myself I considered trying to discuss all of these at one time or another in my blog but decided it was a bad idea because there is already a lot of confusion about ME and any BPS theory about how the disease impacts our lives as a secondary affect would only add to confusion about primary causes of ME, at this time.

For now I think its absolutely right our research strategy continues to focus primarily on empirical physiological science regarding subtypes and causes, because I am very sure it will give the lie to the misinterpretation of ME symptomology and will give us the legitimate authority to demolish the cult of antiscience which seeks to further its proponents careers in the absence of certainty. Even so I am always interested to hear what Prof Jason has to say.