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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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

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."

Dr Phil Hammond in this week's Private Eye Magazine: ME "is a proven and classified neuro-immune disorder"

Dr Phil Hammond in this week's Private Eye Magazine: ME "is a proven and classified neuro-immune disorder"

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)

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

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

The PACE trial manual for dummies by the President of SUK (the Society of Undeserved Knighthoods)

PACE trial's principal investigator Peter White has retired from clinical practice with immediate effect to avoid ...

PROOF POSITIVE ? (REVISITED)

Margaret Williams, 14th September 2016  

"The role of Professor Peter Denton White OBE
In 2004, Professor Peter Denton White was awarded an OBE for “services to medical education”;
notices circulating at the time proclaimed him as leading the research into “CFS/ME” and said his OBE was “a well-deserved honour and acknowledgement of his contribution to work on CFS/ME”.

He was born in November 1952: aged only 64, he suddenly retired from clinical practice just before he was compelled by an order of the court to release the raw data from the PACE trial, so any
investigation by the General Medical Council for alleged professional misconduct is unlikely to be
pursued, but is he guilty of misfeasance in public office?

According to the Crown Prosecution Service (CPS) website, misfeasance in public office is a cause of
action in the civil court against the holder of public office, the allegation being that the office-holder
has misused or abused their power: such misuse or abuse is an affirmative act that causes harm to
another party without reasonable justification. The NHS is a State body as it provides public health
care, so this matter is one in which the public has a significant interest.

Facts to be considered
1. Peter White has used his own money, as well charitable money and public money, in order to
lobby support for his belief that ME/CFS is a psycho-behavioural disorder that can be
overcome through “cognitive restructuring” and graded aerobic exercise
2. he has egregiously used large sums of public money (£250,000) to prevent the disclosure of
data that would falsify his belief
3. for nearly 30 years, he has ignored evidence that disproves his belief, including evidence from
his own trials
4. he has failed to correct errors of fact after being alerted to them
5. he has consistently failed to disclose significant financial, institutional and ideological
conflicts of interest
6. he has been in breach of his NHS contractual obligations in that he has persistently ignored
mandatory directives and has wilfully encouraged other clinicians to do the same
7. as a consequence of his actions:
 money which should have been used for biomedical research into the aetiology of
ME/CFS has been diverted to fund studies into therapies which were already known
to be ineffective and even harmful
 patients have been stigmatised as sociopaths and malingerers who refuse to accept
they have a behavioural disorder
 patients have been denied financial support from private insurers for whom Peter
White and his colleagues work (for example, he was Chief Medical Officer for the
giant re-insurer Swiss Re and was also CMO to Scottish Provident) and from the" ...

Proof positive (revisited) .pdf

World exclusive: picture of one of the "recovered" patients in the PACE trial

Important message from PACE trial HQ

Important message from the PACE trial psychiatrists to Mr. Matthees

The statement which we should have issued

Statement: Disclosure of PACE trial data under the Freedom of Information Act
http://www.qmul.ac.uk/media/news/items/smd/181216.html


The statement which we should have issued

We sincerely apologize for not releasing the data earlier. We now realise this was a big mistake; even more so as the trial was funded with more than 5 million pounds of public money and therefore the public has a right to see the raw data.
We also sincerely regret ignoring our own NULL effect and making it make it look as if our two favorite treatments ie CBT and GET are moderately effective; it was a major oversight on our side to suggest that 22% of people recovered courtesy of CBT and GET;
We now realise that we have been exposing people with this disease for at least 25 years to ineffective and harmful treatments and that hundreds of thousands of patients have been severely harmed by especially GET;
We also regret decades of ridiculing patients with a debilitating neuro immune disease and pretending it to be a functional disorder, MUS, PPS or words to that effect;
The only function that served was making ourself important so that we could pretend to be experts of this disease and that no one would listen to the patient;
We realize that we cannot make up for all the mistakes we have made over the last 25 years including coming up with the Oxford criteria so that we could select patients who do not have the disease but label them as if they do, in an effort to improve the effectiveness of our treatments;
A very nice side effects of these treatments for this disease was that no doctor will take a disease seriously or ask critical questions if we pretend that it can be cured with behavioral and exercise treatment;
We realize that we have not only let the patients down but also our Universities and our Medical colleagues worldwide; we fully understand that after 25 years of being very economical with the truth and spinning our results people will call us the British Diederik Stapel;
The only way we can make up for our mistakes is by resigning from all our posts with immediate effect and together with our universities and sponsors, we will donate 5 Million £££ ie the equivalent spent on the PACE trial to proper biomedical research as done by the Norwegian oncologists and for example by Stanford's Professor Ronald Davis in an effort to get patients with this debilitating disease effective treatments ASAP;
Our Biopsychosocial model as an explanation for this disease will go down in the history of Medicine and Great Britain as one big ego trip and we sincerely apologize once again for letting patients, our universities and the medical profession down in the biggest possible way;

Sincerely,

The three principal investigators of vested interest psychiatry who have now handed  back their professorships and more