Accountability and Action III

From Reuters Science News

A respected science journal is to withdraw a much-cited review of evidence on an illness known as chronic fatigue syndrome (CFS) amid fierce criticism and pressure from activists and patients. The decision, described by the scientists involved as “disproportionate and poorly justified”, is being seen as a victory for activists in a research field plagued by uncertainty and dispute over whether CFS, also known as ............... (ME), has physical and psychological elements.

from - https://in.reuters.com/article/us-health-chronicfatigue-dispute/exclusive-science-journal-to-withdraw-chronic-fatigue-review-amid-patient-activist-complaints-idINKCN1MR2PI?fbclid=IwAR0smuLKvBSDo0eg9Fi4xQl9iJMTvhd-Y_BbIMKAaT5mpb5_vOl1EZpynEM


Comment

This article concerns the decision by Cochrane to withdraw its review of Exercise therapy for chronic fatigue syndrome [2].

Despite the sensationalist headline [Exclusive: Science journal to withdraw chronic fatigue review amid patient activist complaints] the Reuters article does illustrate a couple of salient points.

One is that the media and establishment gatekeepers still portray those seeking to have relevant and high-quality research carried out on ME as militants, using the now derogatory term of "activists" and portraying those who seek honest research as a lobby that is intent on destroying science.

The other point is that, however much the establishment is resisting it, the tide is continuing to turn against the forces which have been controlling this area of healthcare, so hideously influenced by flawed research and biased reviewing.

Rather than the misleading and puerile theme of the Reuters article (that it was activists whom Cochrane caved in to in order to make this decision) it may be a sign that some integrity in reviews of research is forming in place of the shambolic old-boys' network which has existed for years by a corrupted establishment.

As with more calls being made to make research more open perhaps it shows that finally some common sense is being directed toward science.
Perhaps.

Nowadays, with social media enabling a more equitable portrayal of this disease to be provided to a wider audience, it may well be that self-interest is accounting for this change in strategy.

Cochrane states that it aims to create the best current evidence to guide health decisions. Yet Cochrane is no longer being viewed as the automatic gold standard.
Examples of this have illustrated this [3].

It has been evident to patients and any open-minded scientists for a generation that GET and CBT is harmful for people with ME.

The media misinformation about ME has always seemed to require a separate lexicon to really fathom the meaning and determine at whom their ire is directed against. This Reuters article is no exception and retains the well-worn media propagandist dross usually peddled by the Science Media Centre about ME.

In this article -
For “activists”
read
patients”.  

For “lobby groups”
read
some concerned charities and scientists trying to stem the tide of the evil BPS theology/doctrine”.  

For “uncertainty and dispute”
read
human rights”.  

For “Scientists conducting studies on potential therapies say they are often harassed and verbally abused by groups that disagree with their approach”
read
scientists who are funded by charities carrying out research that is relevant and required are welcomed and fully supported by groups who wish to find answers to this disease”.  

For “The withdrawal would also be “a departure from the principle that has always guided Cochrane reviews — that they should be based on scientific and clinical evidence ... but not influenced by unsubstantiated views or commercial pressures.””
read
The withdrawal would also be a confirmation of the principle that has always guided Cochrane reviews — that they should be based on scientific and clinical evidence ... but not influenced by unsubstantiated views or commercial pressures.

For “…this was a sign of Cochrane’s editors sidelining evidence under pressure from CFS/ME campaigners who insist their illness is a physical disease and not a psychological disorder.”  
read  
USA Agency for Healthcare Research and Quality (AHRQ) has issued an Addendum to the 2014 ME/CFS evidence review and downgraded CBT and GET.  https://www.ncbi.nlm.nih.gov/books/NBK379582/”     

For “ “This could change medical practice …… And that could mean that patients with this very serious condition are denied access to treatments that might help them, and which evidence suggests can help some of them.””  
read  
There are no treatments for ME currently, due to a large extent to the policies of the MRC and the influences of the BPS Lobby on people within the MRC and NHS. A serious change in medical practice and research orientation is required



The article quoted Sir Colin Blakemore - who for years presided over the debacle which has been the MRC policy to ME - with nothing of consequence happening and with an industry forming around flawed BPS theories which have continued to deleteriously affect patients and heavily influence the ignorant media who have no time for researching facts.

Blakemore's views seem still to be stuck in the past. The Reuters article states -

"Blakemore said this was a sign of Cochrane’s editors sidelining evidence under pressure from CFS/ME campaigners who insist their illness is a physical disease and not a psychological disorder."

These remarks would seem to show that Blakemore is as out of touch with the reality of ME now as in his MRC days.

It was Dr Clare Gerada - former chair of the Royal College of GPs - who stated at the IIMEC8 conference in 2013 that doctors know little about ME and that patients know their disease better than anyone.
Surely something there for Blakemore and Reuters' journalists to ponder.

Research into ME is only contentious due to the lack of funding that has been given to it by compromised research councils over the years. The lack of education about the disease spawns a raft of poorly researched or heavily biased media pieces based on lazy and superficial journalism that seeks not to inform but simply perpetuate myths based on false beliefs.

Hopefully, this decision by Cochrane will be a permanent one. Patients are owed that.

The time must be over when funds are given to flawed research and to false reviews, carried out by biased entities with vested interests and underlying careers and businesses, yet fails patients.



GET is, of course, only part of the story.
Now CBT needs to be discarded in similar fashion as any treatment for ME.
Then there might be more of a level playing field when discussing research into ME.

In fact, we wonder how much longer the establishment can carry on peddling these falsehoods about ME where CBT and GET are claimed to be in any way of benefit.
It is clear from IiMER's letters to Professor Mark Baker [5] that even NICE has implicitly accepted that neither CBT nor GET can be recommendations for ME- though for their own establishment-controlled reasons they will not be allowed to remove these recommendations before or during their current review.

We restate what we have written before - for ME patients there is no need to compromise, no need to accept poor advice or flawed and harmful treatments just to satisfy health services which are increasingly based on BPS-influenced soundbite healthcare policies aimed at saving money but not lives, or on false beliefs about ME.
There is no reason for ME patients continually to give second chances to failing organisations and disingenuous individuals.
By doing this patients will just get more of the same.


References

References for parliamentary debates, articles and reviews of the establishment policies toward ME


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Last Update 20/10/2018