Adam
@ABrokenBattery

Jun 7, 2022

Fiona Fox director of the Science Media Centre has a new book out called Beyond The Hype - The Inside Story of Media's Biggest Controversies. The chapter on ME/CFS "First they came for the communists" is biased, inaccurate and offensive. #BeyondTheHype Thread

Fox writes glowingly about a group of #MECFS researchers that are being harassed and discredited by a small group of 'activitists' and is concerned that science is under attack. The chapter title appears to liken these 'activists' to Nazis.

Fox claims the 'activists' are in the minority but over 80 charities and over 100 academics don't trust the research and 15,000 people have expresed no confidence in the treatments. virology.ws/2018/08/13/tri

Fox "doesn't fully understand their grievances" but suggests patients reject psychological treatments because it suggests #MECFS is all in the mind. A classic strawman which provokes debate about physical vs mental illness and distracts from the main issues.

Fox fails to explain that a major objection is that the treatments do not fit the patient experience. The hallmark symptom of #MECFS is Post Exertional Malaise, where minimal exertion can cause a flare in symptoms (a crash) that can last for days, weeks or even months.

Graded Exercise and CBT as a treatment for #MECFS is so absurd that an NHS doctor completely disregarded #MECFS as a diagnosis for herself for three months because exercise made her worse and CBT didn't seem appropriate.

Fox says that "some patients report poor outcomes", but doesn't mention that over 50% of patients consistently report Graded Exercise makes them worse. (11 surveys / 18,000 patients). Many patients who were previously able to walk ended up in wheelchairs or bedbound.

Post Exertional Malaise (PEM) is now widely acknowledged to be a characteristic feature of #MECFS but the bulk of the evidence being criticised used definitions of #MECFS from the 1990s where PEM is not required.

So patients in these studies may not have had #MECFS and may have had other fatigue-related conditions instead. This makes it difficult to be sure these studies show the treatments are safe and effective for people with #MECFS.

Fox writes about "good medical evidence" being "attacked and misrepresented" but major health organisations like NICE, NIH, Cochrane, AHRQ have identified significant issues with the evidence. NICE and the CDC have also withdrawn the treatments.

The £5M PACE trial was the largest trial of its kind but has so many flaws it's taught in University as an example of "How NOT to conduct a clinical trial" and the research into Graded Exercise is "based on science so bad" it's taught in Research Misconduct sessions.

Fox on the other hand believes that because a statistician who worked on PACE told her she uses it in her own training programme as an example of a "good clinical trial" it demonstrates it's a good trial.

PACE had many problems but the biggest is that it was non-blinded and relied on self report data (questionnaires). This meant patients were aware of the treatment they were receiving which could cause them to consciously or subconsciously feel better and influence the results.

Similar trials of Graded Exercise in #MECFS have the same design flaw - "so problems of bias, make more or less all the trials to date unsuitable as a basis for treatment recommendation.” - Prof Edwards expert testimony to NICE explains in more detail. mecfsresearchreview.me/2021/01/12/the

Update: the final guidelines, which apparently said much the same as the initial ones, were due to be published on 18 August, 2021. Unexpectedly, NICE announced on 17 August that it was pulling pub…

mecfsresearchreview.me/2021/01/12/the…

The expert testimony to NICE that took apart the case for CBT and graded exercise for ME/CFS

Fox writes PACE has been "attacked as ‘scientific and financial fraud’, ‘a piece of crap’ and ‘one of the biggest medical scandals of the 21st century’" Fraud is difficult to prove but there is evidence of outcome switching which led to inflated treatment effects.

Patients had to meet 4 criteria in order to count as "recovered". Midway through the trial the authors relaxed the thresholds for all 4 criteria. This made it much easier for patients to count as “recovered” than if they used the criteria defined in their original protocol.

Physical function was lowered to a level similar to patients with congestive heart failure. And because it was lower than the entry criteria, 13% of patients had already “recovered” on that physical function score before they’d had any therapy at all. meaction.net/2016/12/14/the

Minutes obtained by FOI also revealed that activity trackers were dropped mid trial because an unpublished Dutch study reported "no change in this in spite of improvement in fatigue". So patients reported feeling less fatigue but didn't manage to increase their activity.

Fox claims the Health Research Authority "vindicated" PACE and said it was a "good trial" but this is misleading because they couldn't comment on the quality of the trial as it was "outside their remit". They only said there were many elements of "good practice".

NICE spent 3 years carefully reviewing the evidence for Graded Exercise and CBT and concluded it was all "low" or "very low" quality and the treatments were potentially harmful. The treatments were not supported by the evidence so they withdrew them. thesciencebit.net/2021/08/15/the

Updated 29 October: A quick Q&A relating to the new NICE guideline for ME/CFS

thesciencebit.net/2021/08/15/the…

The new NICE Guideline for ME/CFS: Ten Questions Answered

Fox quotes the Royal Colleges saying they lobbied NICE after discovering many of their points from the consultation had not made it into the final draft and the evidence base seemed to have been manipulated.

NICE responded to every piece of stakeholder feedback which is available in a public document. They also re-analysed some evidence after feedback about PEM to make sure the grading was correct. There is no evidence of evidence being manipulated.

However, there is evidence an individual associated with the Royal College of Psychiatrists asked the Chief Executive of NICE to tamper with evidence in the weeks before the guideline was due to be published. domsalisbury.github.io/mecfs/nice-mec

The claim that "three members of the committee had resigned because they had felt unable to sign up to the final guideline" is false. The committee reached a consensus and signed off the guideline before the clinicians resigned. nice.org.uk/guidance/ng206

Fox writes about the Royal Colleges objections highlighting that NICE discarded the Cochrane review. NICE explained this was because they didn't agree with their approach to meta analysis but included all the same studies in their own review. nice.org.uk/guidance/ng206

NICE also noted the Cochrane review is "contested and that it 'is still based on a research question and a set of methods from 2002, and reflects evidence from studies that applied definitions of #MECFS from the 1990s'." and they were doing a doing a full update.

But Fox wrote that the SMC spoke to Cochrane & "they believed in the quality of the medical research available, and broadly rejected the criticisms circulating on social media and among patient activists". She failed to mention any of the limitations or the full update.

Fox mentions the complaint which led to the update in 2019 and includes a quote drawing parrallels with Animal Rights activists that Cochrane should not be influenced "by unsubstantiated views or commercial pressures".

But an FOI request revealed the Editor in Chief of Cochrane thought the complaint was "thoughtful and reasonable" and noted the author and "the trialists of the included reviews, tend to refer to all criticism of the trials and the review as being the result of ‘activism’."

Harassment has been used to discredit the patient community and deflect legitimate criticism. The SMC helped organise a campaign in the press that sensationalised the behaviour of a tiny number of individuals as a vicious attack on science and the researchers.

When claims of harassment were tested in court they were found to be "grossly exaggerated". A PACE author, accepted that "unpleasant things have been said to and about PACE researchers only, but that no threats have been made either to researchers or participants”.

The Information commissioner also commented on Professor Anderson drawing parallels with animal rights pressure groups and states his evidence was "an 'over-extension' from his work with completely unrelated animal rights activists". informationtribunal.gov.uk/DBFiles/Decisi

An FOI request to Esther Crawley's university also revealed that no incidents of harassment had been recorded despite her claims that colleagues opened her mail and screened her emails. vadamagazine.com/lifestyle/heal

A controversial researcher into treatments for ME/CFS claims she is being harassed by patients, but university's official records don't back claims.

vadamagazine.com/lifestyle/heal…

Esther Crawley claims harassment, university has no record

A controversial researcher into treatments for ME/CFS claims she is being harassed by patients, but university's official records don't back claims.

Many of the stories focused on Simon Wessely who pioneered the treatments. He has a vested interest in the research but was also on the board of the SMC & their advisory panel a COI that was never disclosed in any of the stories or Foxs book. They even nominated him for an award.

Fox writes about complaints against individual researchers but fails to mention there have been multiple examples of the PACE authors & their associates making complaints when people are publicly critical of the PACE trial or related research. me-pedia.org/wiki/Intimidat

It's also important to acknowledge the impact on patients. Alem Matthees health suffered significantly in part from the efforts to release the PACE data. A tribunal would not have been necessary had they just complied with the FOI and released it. virology.ws/2018/05/07/tri

Fox writes "The SMC is not in the business of championing one area of research or backing a particular approach". But thats exactly what they did with #MECFS like this fact sheet sent to journalists just before the publication of a PACE re-analysis paper. sciencemediacentre.org/wp-content/upl

It describes PACE as a "good quality trial", downplays the criticisms and harm and tries to discredit papers critical of PACE by saying they are published in low impact journals. It also fails to mention opposition from agencies like AHRQ.

Fox and the SMC have been criticised before "Perhaps the biggest criticism of Fox and the SMC is that they push science too aggressively — acting more as a PR agency than as a source of accurate science information." Article in Nature 2013. nature.com/articles/49914

This excellent short blog by @Lucibee 🌻🇵🇸 highlights how the SMC advised Climategate scientists to ignore personal attacks and restate the science clearly, instead of focusing on the harassment in the case of #MECFS research. lucibee.wordpress.com/2022/05/30/smc