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June 14, 2017

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twbb

Steve, could you explain the intense level of anger over this whole issue? I don't just mean yours, I mean generally: I know some of the PACE trial researchers are receiving death threats. Even if people have a legitimate problem with the research design and the researchers' responses to criticisms, a lot of the anger seems to be based on the original hypothesis that CFS is symptomatic of a psychological condition rather than a physical one.

The implicit argument there is VERY troubling because it stigmatizes those suffering from mental illness and suggests that it is somehow less "real" than purely physical problems. Some people (not saying you) seem to be suggesting that CFS sufferers insisting that it's a physical problem alone should have been taken at their word, which is profoundly inconsistent with good medical research practice.

I'm not trying to start a fight, I know this is close to you, but I really do have an issue with the implicit argument I note above.

Kyla

i'm not sure if there is a way to actually tag someone or repy here, but in reply to twbb:

1) in terms of "threats" to researchers, in a recent ICO tribunal hearing for the release of some of the PACE data, the researchers stated under oath that there were no threats. "It was clear that [Anderson's] assessment of activist behaviour was, in our view, grossly exaggerated and the only actual evidence was that an individual at a seminar had heckled Professor Chalder." Of Chalder's testimony, the Information Commissioner reported that "she accepts that unpleasant things have been said to and about PACE researchers only, but that no threats have been made either to researchers or participants. "
more info (and link to tribunal decision) here:
http://www.centreforwelfarereform.org/news/major-breaktn-pace-trial/00296.html

2) the idea that patients are objecting to psychology / psychologists is a straw man. the objection is to the shoddy methods of this small group of investigators, as well as to their campaign to smear anyone who questions them or asks to see the data, including not only patients but numerous scientists, clinicians and journalists
a few examples:
http://www.virology.ws/2017/05/03/trial-by-error-continued-my-libelous-blogging-on-virology-blog/
http://www.virology.ws/2016/02/01/trial-by-error-continued-a-few-words-about-harassment/
https://jcoynester.wordpress.com/2016/01/31/further-insights-into-the-war-against-data-sharing-the-science-media-centres-letter-writing-campaign-to-uk-parliament/

3) the "big deal" is that these treatments are causing real harm to patients.
In terms of PACE based therapies, the objections patients and ME clinicians have (beyond the poor science) is not just that the specific GET/CBT proposed  is ineffective, but that it is in fact harmful. The fact that exercise and a bit of talking therapy sound on their face to be something that couldn't possibly cause harm is a large part of the problem.
There is a huge body of literature showing abnormal response to exertion in ME&CFS - so much so that the Institute of Medicine has proposed renaming the disease to 'Systemic Exertion Intolerance Disease'. 
For an overview of some of the exercise and muscle findings try:
http://www.jacobspublishers.com/images/Physiology/J_J_Physiology_1_2_007.pdf

Every survey of ME patients ever done has shown the majority reporting harms from GET, the recent MEA report shows 74% saying GET worsened their condition, if you review the qualitative section at the end there are countless patients (including a few from the PACE trial) describing how GET rendered them permanently bedbound or wheelchair dependent. see: http://www.meassociation.org.uk/wp-content/uploads/2015-ME-Association-Illness-Management-Report-No-decisions-about-me-without-me-30.05.15.pdf

and in fact in the few cases where Objective measures have been used in GET/CBT studies the results have been negative for GET, even in studies that are heavily skewed to a 'biopsychosocial' approach: https://www.researchgate.net/publication/40846607_How_does_cognitive_behaviour_therapy_reduce_fatigue_in_patients_with_chronic_fatigue_syndrome_The_role_of_physical_activity
The Belgium government has dismantled its GET&CBT program based on results they collected showing these therapies had negative effects on employment rates and disability measures. In the PACE trial the “Fitness” data for GET – one of the original outcome measures – also showed GET having the worst outcomes of all trial arms. It was only ever published in a tiny graph in the supplemental materials of one of the papers, and it is impossible to tell in this format if it rose to the level of statistical significance, but it is noteworthy that this has never been addressed by the authors. In particular as an exercise therapy like GET should have improved “fitness”(in this case measured by a step-test), not worsened it.

4) I have never heard a patient (or anyone else involved in debunking PACE) saying psychiatric or psychological conditions aren't "real" or debilitating. The objection is with the "God-of-the-gaps" mentality that crams a psychogenic explanation into every gap in knowledge and then stubbornly refuses to budge that explanation even when masses of contrary evidence are found.
It's a pattern that has been repeated for everything from MS to ulcers, and it often has very real consequences in terms of blocking progress towards meaningful research and treatment. Example  https://goo.gl/at11LA
Not to mention access to benefits, assistance, and  appropriate medical care.

In the case of ME and CFS specifically, we actually have a great of evidence that challenges these assumptions. In fact one researcher declared this debate should be finished ten years ago, saying "there are now over 4,000 published studies that show underlying biological abnormalities in patients with this illness. It’s not an illness that people can just imagine that they have, and it’s not a psychological illness. In my view, that debate, which has raged for 20 years, should now be over.” – Dr. Anthony Komaroff (2006 Press Conference) . 
The recent Institute of Medicine report which reviewed 9000 publications on ME&CFS, was equally unequivocal that it is a systemic biological disease.  And researcher Betsy Keller recently declared that "Given what we have learned in the past eight years about this illness, it is intellectually embarrassing to suggest that ME is a psychological illness",  nevermind a psychogenic one.

Yet this model has been remarkably hard to dislodge from the minds of grant funders, policy-makers and clinicians. Largely since it is still being vigorously promoted by this small group of researchers associated with PACE, who seem to persistently ignore the piles of biomedical findings that contradict it.
 Though their language has certainly shifted around it and the words psychogenic and psychosomatic have been excised,  the theories of this group remain the same. The very real consequences of this are the 74% of patients reporting harms from treatments based on this theory, and most of the rest reporting no effect at all

If you are genuinely interested here are a few articles on the broader issue for you to read:
http://www.senseaboutscienceusa.org/pace-research-sparked-patient-rebellion-challenged-medicine/
http://www.centreforwelfarereform.org/library/by-az/in-the-expectation-of-recovery.html#.V1AtWDwUa8Q.twitter
https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/

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