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." 

Systematic review: widespread disruption of the autonomic nervous system network in ME/CFS

RESEARCH ARTICLE

A systematic review of neurological impairments 

in myalgic encephalomyelitis/chronic fatigue 

syndrome using neuroimaging techniques

• Rebekah Maksoud, 
• Stanley du Preez, 
• Natalie Eaton-Fitch, 
• Kiran Thapaliya, 
• Leighton Barnden,
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• Hélène Cabanas, 
• Donald Staines,  …
Published: April 30, 2020

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• https://doi.org/10.1371/journal.pone.0232475

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  Abstract

  
  

  Background

  
  

  Myalgic encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) is a multi-system illness characterised by a diverse range of debilitating symptoms including autonomic and cognitive dysfunction. The pathomechanism remains elusive, however, neurological and cognitive aberrations are consistently described. This systematic review is the first to collect and appraise the literature related to the structural and functional neurological changes in ME/CFS patients as measured by neuroimaging techniques and to investigate how these changes may influence onset, symptom presentation and severity of the illness.

  
  

  Methods

  
  

  A systematic search of databases Pubmed, Embase, MEDLINE (via EBSCOhost) and Web of Science (via Clarivate Analytics) was performed for articles dating between December 1994 and August 2019. Included publications report on neurological differences in ME/CFS patients compared with healthy controls identified using neuroimaging techniques such as magnetic resonance imaging, positron emission tomography and electroencephalography. Article selection was further refined based on specific inclusion and exclusion criteria. A quality assessment of included publications was completed using the Joanna Briggs Institute checklist.

  
  

  Results

  
  

  A total of 55 studies were included in this review. All papers assessed neurological or cognitive differences in adult ME/CFS patients compared with healthy controls using neuroimaging techniques. The outcomes from the articles include changes in gray and white matter volumes, cerebral blood flow, brain structure, sleep, EEG activity, functional connectivity and cognitive function. Secondary measures including symptom severity were also reported in most studies.

  
  

  Conclusions

  
  

  The results suggest widespread disruption of the autonomic nervous system network including morphological changes, white matter abnormalities and aberrations in functional connectivity. However, these findings are not consistent across studies and the origins of these anomalies remain unknown. Future studies are required confirm the potential neurological contribution to the pathology of ME/CFS.
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First transferable factor in #MEcfs blood?

https://twitter.com/BhupeshPrusty/status/1223242526188089344

»We could have our first transferable factor in #MECFS blood« Big news from Prusty Lab at University of Würzburg! But they need financial resources to continue their great work. Now we all can help them out together! Retweets appreciated! #GOfundMECFS https://bit.ly/gofundmecfs

Dr. Prusty believes that a viral infection is disturbing mitochondrial function in #MECFS via blood factors and wants to investigate this. Read more here: https://www.gofundme.com/f/gofundmecfs-support-scientific-research-mecfs?

Preprint Article Version 1 This version is not peer-reviewed

Cell-Based Blood Biomarkers for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Daniel Missailidis * , Oana Sanislav , Claire Allan , Sarah Annesley , Paul Fisher *

Version 1 : Received: 2 February 2020 / Approved: 3 February 2020 / Online: 3 February 2020 (10:36:05 CET)

How to cite: Missailidis, D.; Sanislav, O.; Allan, C.; Annesley, S.; Fisher, P. Cell-Based Blood Biomarkers for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Preprints 2020, 2020020029 (doi: 10.20944/preprints202002.0029.v1). Missailidis, D.; Sanislav, O.; Allan, C.; Annesley, S.; Fisher, P. Cell-Based Blood Biomarkers for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Preprints 2020, 2020020029 (doi: 10.20944/preprints202002.0029.v1).

Abstract

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a devastating illness whose biomedical basis is now beginning to be elucidated. We reported previously that, after recovery from frozen storage, lymphocytes (peripheral blood monocytic cells, PBMCs) from ME/CFS patients die faster in culture medium than those from healthy controls. We also found that lymphoblastoid cell lines (lymphoblasts) derived from these PBMCs exhibit multiple abnormalities in mitochondrial respiratory function and signalling activity by the cellular stress-sensing kinase TORC1. These differences were correlated with disease severity, as measured by the Richardson and Lidbury Weighted Standing Test. The clarity of the differences between these cells derived from ME/CFS patient blood and those from healthy controls suggested that they may provide useful biomarkers for ME/CFS. Here we report a preliminary investigation into that possibility using a variety of analytical classification tools, including linear discriminant analysis, logistic regression and Receiver Operating Characteristic (ROC) curve analysis. We found that results from three different tests, lymphocyte death rate, mitochondrial respiratory function and TORC1 activity could each individually serve as biomarker with better than 90% sensitivity but only modest specificity vís a vís healthy controls. However, in combination they provided a cell-based biomarker with sensitivity and specificity approaching 100% in our sample. This level of sensitivity and specificity was almost equalled by a suggested protocol in which the frozen lymphocyte death rate was used as a highly sensitive test to triage positive samples to the more time consuming and expensive tests measuring lymphoblast respiratory function and TORC1 activity. This protocol provides a promising biomarker that could assist in more rapid and accurate diagnosis of ME/CFS.

https://www.preprints.org/manuscript/202002.0029/v1

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

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

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

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."

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.

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 ...

Does "the President of The Royal College of Psychiatrists condones what is widely considered to be scientific fraud?"

Sheila Campbell

SEPTEMBER 25, 2016 AT 9:08 AM

Posted on behalf of Margaret Williams:

Simon Wessely is at pains to distance himself from involvement with the PACE trial, but once again he seems to have overlooked the facts.

The Trial Identifier is clear:

“Section 4. TRIAL MANAGEMENT

4.1 WHAT ARE THE ARRANGEMENTS FOR THE DAY TO DAY MANAGEMENT OF THE TRIAL?
The trial will be run by the trial co-ordinator who will be based at Barts and the London, with the principal investigator (PI), and alongside two of the six clinical centres. He/she will liaise regularly with staff at the Clinical Trials Unit (CTU) who themselves will be primarily responsible for randomisation and database design and management (overseen by the centre statistician Dr Tony Johnson), directed by Professor Simon Wessely, in collaboration with Professor Janet Darbyshire at the MRC CTU.

4.4. WHAT WILL BE THE RESPONSIBILITIES OF THE NAMED COLLABORATORS?
Prof Simon Wessely will oversee the CTU”

It also needs to be recalled that the post of Statistician Clinical Trials Unit Division of Psychological Medicine Ref No: 06/A09 was described as the “Johnson_Wessely_Job” (07/07/2006) at The Institute of Psychiatry where: “The team works under the direction of Professor Simon Wessely, the Unit Director. The team is supported by the regular input of a Unit Management Group from within the Institute of Psychiatry. The statisticians within the Unit also have regular supervision meetings with Dr Tony Johnson from the MRC Clinical Trials Unit. The post holder will be directly responsible to the CTU Manager (Caroline Murphy), supervised by the CTU Statistician (Rebecca Walwyn) and will be under the overall direction of the Head of Department, Professor Simon Wessely”.

So please, Professor Wessely, stop dissembling, as you are fooling no-one but yourself.

Despite the fact that post-hoc changes showed reported results that were up to five times better than those derived from the original protocol, you continue to defend what has been described by many as “fraud” in the PACE trial.

Can it be said that the President of The Royal College of Psychiatrists condones what is widely considered to be scientific fraud?

Margaret Williams
http://www.margaretwilliams.me

The PACE trial and jumping without a parachute ...

Classical case of projection: PACE trial's Peter White accuses Prof Stark and Levin and Matthees, Kindlon and Maryhew of scientific misconduct

Classical case of projection: PACE trial's Peter White accuses Prof Stark and Levin and Matthees, Kindlon and Maryhew of scientific misconduct. And at the same time he still claims that 22% of patients with this disease recover due to CBT and GET; Pinocchio Psychiatry at its best. That and More in today's Guardian; article by Peter himself:

"Our research, and that of our colleagues in this field, has attracted its fair share of criticism. Some campaigners have even called for the research to be stopped, the findings retracted, and CBT and GET abandoned completely as they cause harm. One recent focus of criticism has been whether CBT and GET can actually bring about recovery or remission from the illness, not just reduce the symptoms. And by recovery we mean recovery from a patient’s present episode of illness – which is not necessarily the same as being cured, as someone might fall ill again.

To address this we did another test on the data, and found that 22% of people could be considered as recovered with either CBT or GET. Though not a large proportion it was about three times more than the recovery rates achieved by the other two treatments. Other studies showed similar proportions recovering after CBT.

"In the latest step in this saga, a blog  that hasn’t gone through the rigours of scientific peer-review, or being published in a journal claims that CBT and GET are not as effective as we reported. The authors got their figures by tweaks such as increasing the pass-grade for what counted as recovery, and excluding patients who had reported themselves as “much better”."

https://www.theguardian.com/commentisfree/2016/sep/30/me-chronic-fatigue-syndrome-patients-suffer-put-off-treatments-our-research



PS: A review of the PACE trial by Vink, that has gone through the rigours of scientific peer-review, and was published in a Medical journal found that CBT and GET are INEFFECTIVE, aka a NULL effect. You can read the excellent PACE trial review here

  PS 2: I hope that somewhere in the UK there is still a psychologist who hasn't gone to sleep to give PACE trial's Peter White emergency CBT to cure his false Therapy beliefs and turn him into an honest psychiatrist

"You can't ignore me now" Naked Millions missing protest at Whitehall to demand better care for M.E patients

By Reya El-Salahi (@_Reya) 27 Sep 2016:
"You can't ignore me now" Naked protestor demands better support for M.E patients. Details on @LondonLive before 2pm #MillionsMissing https://t.co/o9SIbwSO1q (http://twitter.com/_Reya/status/780728125181353984?s=17)