The psychosomatic focus on CBT and GET has delayed scientific understanding of ME/CFS by 30 years

By David F Marks:

 "A new properly scientific framework for the understanding of MUS/MECFS is urgently needed, grounded in the biological bases of the illnesses. The psychosomatic focus on CBT and GET for MUS and MECFS has delayed scientific understanding of the disorders by 25 to 30 years." 

Work Rehabilitation and Medical Retirement for ME/CFS Patients. A Review and Appraisal of Diagnostic Strategies

Open AccessReview

Work Rehabilitation and Medical Retirement for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients. A Review and Appraisal of Diagnostic Strategies

by  Mark Vink ^1,* and Friso Vink-Niese ²

¹

Family and Insurance Physician, 1096 HZ Amsterdam, The Netherlands

²

Independent Researcher, 49032 Osnabrück, Germany

^*

Author to whom correspondence should be addressed.

Diagnostics 2019, 9(4), 124; https://doi.org/10.3390/diagnostics9040124

Received: 7 June 2019 / Revised: 11 September 2019 / Accepted: 13 September 2019 / Published: 20 September 2019

(This article belongs to the Special Issue Biomedical Insights that Inform the Diagnosis of ME/CFS)

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Abstract

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome leads to severe functional impairment and work disability in a considerable number of patients. The majority of patients who manage to continue or return to work, work part-time instead of full time in a physically less demanding job. The prognosis in terms of returning to work is poor if patients have been on long-term sick leave for more than two to three years. Being older and more ill when falling ill are associated with a worse employment outcome. Cognitive behavioural therapy and graded exercise therapy do not restore the ability to work. Consequently, many patients will eventually be medically retired depending on the requirements of the retirement policy, the progress that has been made since they have fallen ill in combination with the severity of their impairments compared to the sort of work they do or are offered to do. However, there is one thing that occupational health physicians and other doctors can do to try and prevent chronic and severe incapacity in the absence of effective treatments. Patients who are given a period of enforced rest from the onset, have the best prognosis. Moreover, those who work or go back to work should not be forced to do more than they can to try and prevent relapses, long-term sick leave and medical retirement. View Full-Text

Keywords: CFS (Chronic Fatigue Syndrome); ME (Myalgic Encephalomyelitis); medical retirement; prognosis; work rehabilitation

Cognitive behavioural therapy for ME/CFS is not effective. Re-analysis of a Cochrane review

Mark Vink, Alexandra Vink-Niese

First Published May 2, 2019 Review Article 

Abstract

Analysis of the 2008 Cochrane review of cognitive behavioural therapy for chronic fatigue syndrome shows that seven patients with mild chronic fatigue syndrome need to be treated for one to report a small, short-lived subjective improvement of fatigue. This is not matched by an objective improvement of physical fitness or employment and illness benefit status. Most studies in the Cochrane review failed to report on safety or adverse reactions. Patient evidence suggests adverse outcomes in 20 per cent of cases. If a trial of a drug or surgical procedure uncovered a similar high rate, it would be unlikely to be accepted as safe. It is time to downgrade cognitive behavioural therapy to an adjunct support-level therapy, rather than a treatment for chronic fatigue syndrome.

showFullText: https://journals.sagepub.com/doi/full/10.1177/2055102919840614

Damning criticism of the flawed #PACEtrial by psychologist Prof Brian Hughes

Damning criticism of the flawed #PACEtrial in a new book by Prof Brian Hughes on the “rampant methodological crisis” in psychology.

 'Rampant methodological crisis' - describes how psychologists invent their own study methods, change them part way if the data don't fit their preconceptions, misuse stats etc.

 “The controversies surrounding the PACE trial can be seen as emblematic of the real-world problems caused by psychology’s many crises.”

 From p. 140: That the PACE Trial continues to be so doggedly defended, despite a litany of damaging critiques, shows us how psychologists can retain an unswerving allegiance to their own ideas.

 You can read here part of the pages dedicated to the PACE trial (from p132 to 140, p 138 is missing).

The Times: Call for review of ‘flawed’ ME research in Lancet letter

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By Tom Whipple, Science Editor, August 21 2018, 12:01am, The Times

More than a hundred academics have joined ten MPs and scores of patient groups from around the world to sign an open letter calling for The Lancet to reanalyse a study into treatment for myalgic encephalomyelitis (ME).

The letter follows a debate in parliament in which one MP said that the study, which is used to set NHS guidelines, “will go down as one of the biggest medical scandals of the 21st century”. The authors of the research paper stood by their findings and said that the letter represented a campaign to discredit solid research and force the retraction of papers simply because patients disagreed with their findings.

The signatories, who include academics from Harvard, Stanford, UCL and the London School of Hygiene and Tropical Medicine, said that the 2011 Pace trial, which recommended therapy and exercise as a treatment for the condition, had “major flaws” and “unacceptable methodological lapses”.

The £5 million publicly funded trial was published in The Lancet and has informed advice on treating people with ME in the NHS and abroad, but is controversial among ME sufferers. Some claim that its advice perpetuates an idea that the disease, which causes debilitating disability, is all in the mind.

The Lancet declined to comment.

https://www.thetimes.co.uk/edition/news/call-for-review-of-flawed-me-research-in-lancet-letter-l75rvcprh   

Multidisciplinary rehabilitation treatment is not effective for ME/CFS : A review of the FatiGo trial

Review of the FatiGo trial (Vos-Vromans), one of the 13 pieces of evidence NICE will review. FatiGo, a trial with many problems including ignoring its own results.

Mark Vink, Alexandra Vink-Niese,

First Published August 6, 2018 Review Article 

Abstract

The FatiGo trial concluded that multidisciplinary rehabilitation treatment is more effective for chronic fatigue syndrome/myalgic encephalomyelitis in the long term than cognitive behaviour therapy and that multidisciplinary rehabilitation treatment is more cost-effective for fatigue and cognitive behaviour therapy for quality of life. However, FatiGo suffered from a number of serious methodological flaws. Moreover, it ignored the results of the activity metre, its only objective outcome. This jeopardizes the validity of FatiGo. Its analysis shows that there was no statistically significant difference between multidisciplinary rehabilitation treatment and cognitive behaviour therapy and neither are (cost-)effective. FatiGo’s claims of efficacy of multidisciplinary rehabilitation treatment and cognitive behaviour therapy for chronic fatigue syndrome/myalgic encephalomyelitis are misleading and not justified by their results.

Full text 

Dr Keith Geraghty's undeclared conflict of interest

Does the PACE trial represent professional misconduct?

PACE trial should acknowledge inefficacy and harmfulness of CBT and GET

By Mark Vink, (Family Physician) the author of the 2016 Review of the PACE trial for which he was nominated for the John Maddox Prize for Standing up for Science.

If CBT and GET had really been effective there would have been no need for an extensive number of changes to the recovery criteria made during an unblinded trial, making the definition much less accurate to the point that people who were still (severely) ill were classed as recovered.

The time has now come for the PACE trial authors to stop misrepresenting their own results; acknowledge the inefficacy and harmfulness of CBT and GET to prevent further unnecessary suffering inflicted on patients by physicians/therapists, which is the worst of all harms, yet totally preventable.

MORE @ Observantonline, the journal of the University of Maastricht

Berkeley's lecturer in public health: Bizarre PACE trial response

By David Tuller, lecturer in public health and journalism at the University of California, Berkeley:

They have recently argued, in response to Wilshire et al, that it doesn't matter that some participants were recovered on the physical function or the fatigue outcomes at baseline because there were other recovery criteria. This is truly a bizarre response for researchers to make. It is also a serious violation of the rules of honest scientific inquiry. It is unclear to me why we all have to waste so much intellectual time and energy simply to demonstrate that studies in which participants can be disabled and recovered simultaneously on key indicators should never have been published and, once published, need to be retracted immediately. The PACE authors have no scientific ground to stand on.

MORE @ Observantonline, the journal of the University of Maastricht

Psychologist Prof Coyne: PACE trial's CBT for ME/CFS is condescending pseudoscience

Psychologist Prof Coyne on #PACEtrial's CBT for #MEcfs: condescending pseudoscience presented to convince patients that their problems were in their heads

from Danish RCT of cognitive behavior therapy for whatever ails your physician about you | Mind the Brain http://blogs.plos.org/mindthebrain/2016/12/07/danish-rct-of-cognitive-behavior-therapy-for-whatever-ails-your-physician-about-you/

Sir Simon Wessely (the godfather of PACE): The PACE trial simply made whatever adjustments they needed in order to get the results they wanted

Sir Simon Wessely (the godfather of PACE): The PACE trial simply made whatever adjustments they needed in order to get the results they wanted

By spoonseeker 9 December 2016:

  As for the PACE authors themselves, I doubt that anything will make a difference. They had clearly decided how the trial was going to turn out before they even started it, and I can’t see anything changing their views about it now, whether peer reviewed or otherwise.

PACE was not a voyage of discovery. As the godfather of PACE, Sir Simon Wessely, inadvertently revealed, they always knew exactly where they wanted to get to.

They simply made whatever adjustments they needed in order to get there. They live in a world where they are right, patients are wrong, and the facts can be changed to support that. I doubt they’re open to any kind of reason.

Or as Professor Steven Lubet, a Professor of Law at Northwestern University, recently stated:

"Finally, you point to your own blog post, which ironically undermines your very point. You compare the PACE Trial to an ocean liner plotting a course from Southampton to New York, and express satisfaction that it made the trip “successfully across the Atlantic,” despite course corrections along the way. 

But surely you realize that a randomized controlled study is not supposed to have a fixed destination, but rather should follow wherever the evidence – or the current, to maintain the metaphor -- leads. 

You thus virtually admit that the PACE Trial was always intended to reach a particular result, and that adjustments along the way were necessary to get it there.  Just so."

LSE: The medical and psychiatric establishment has to admit and apologise for abusing ME/CFS patients

LSE: The medical and psychiatric establishment has to admit and apologise for abusing ME/CFS patients

  LSE, 21 November 2016:

  "the psychiatrisation of conditions like Myalgic Encephalopathy/Chronic Fatigue Syndrome (ME/CFS) where organic and physical conditions become ‘all in the mind’. Here, whilst there is a complex inter-relationship between the mind and body, psychiatric reductionism has resulted in a catalogue of instances of maltreatment, neglect and abuse."  

  "The medical and psychiatric establishment has yet to come clean, admit to or apologise for these abuses."

 

The inaugural Dr. Speedy health award goes to ...

The inaugural Dr. Speedy health award for a lifetime dedication to improving the health and quality of life for people with ME/CFS goes to a man who has taken on the mighty Pinocchio Psychiatrists; a fight based on scientific evidence, an essential part of modern day evidence based medicine against people who have ignored all scientific evidence for decades (even if they have produced it themselves) and have made a fortune out of opinion, non evidence-based medicine .

And the winner is, yes yes yes, Tom Kindlon. Congratulations Tom from everybody at the Dr. Speedy Network of Clinical Excellence, a well-deserved award.

PS: Please do not confuse us with NICE from the UK: the National Institute of ignoring Clinical Evidence

Bogus FITNET trial is a GET trial in disguise being tested on children who don't have #MEcfs

Bogus FITNET trial is a GET trial in disguise being tested on children who don't have #MEcfs

FITNET trial is an unblinded trial (not a RCT) using subjective outcomes which uses their own "ME/CFS" criteria so that they can select patients who do not have the disease but then label them as if they do ...

Which is not surprising as Crawley, Bleijenberg and Knoop are involved who make Diederik Stapel look like an honest man. Pinocchio research from Britain and Holland. And the medical councils are still hibernating.

If you want to make yourself sick have a look at their protocol but make sure that you've got a bucket ready or better still ask your GP for an antiemetic before you read it. You will need it.

How to make yourself important and waste a million pound by Esther CRAWLEY

Breaking news: Cause of ME/CFS is in the blood

By Cort Johnson (@CortJohnson) tweeted at 1:18 PM - 29 Oct 2016 live from the ME/CFS conference in Florida: #IACFS/ME #ME/CFS: ME/CFS cells put in healthy serum do fine; healthy cells put in ME/CFS serum poop out - something in the blood is cause (http://twitter.com/CortJohnson/status/792196306072633345?s=17)

NICE takes a dim view of foreign work on ME/CFS after first consulting a third party ...

Why the MEGA project wants to use a broad definition

MEGA is a great project but not with Crawley and her Pinocchio friends on board ...