Reinvention - The Cycle of Research into ME in the UK

The latest extensive and biased media coverage given to the biopsychosocial (BPS) lobby has been prominent, not for providing anything new – it is always all the same. What is new is the way that these protagonists for the BPS lobby are now beginning to sprinkle their language with 'biological' and 'biomedical' – and attempting to morph into something more acceptable to ME patients who have criticised the dead-end approach of UK research in the last generation.

This REINVENTION doesn’t fool anyone but the most naïve.

When the MEGA study (M.E./CFS Epidemiology and Genomics Alliance) was announced by the CMRC collaborative some people wished to believe that a change had occurred - that, after a lifetime of wasted opportunity, where the PACE trial had eventually been pulled apart and shown to be the flawed and tawdry #nullfield research that it is, then a new age of research would begin where patients could begin to trust what was being put forward.

This was despite the misgivings about the MEGA project from some patients who were street-wise to the machinations of those influencing research policy, as detailed in the OMEGA petition [1]. IiMER expressed our views [2].

The recent days’ orchestrated media blitz about another doubtful research project called FITNET-NHS (Fatigue In Teenagers on the interNET) [3], led by Professor Esther Crawley at Bristol University, has surely put the final nail in the coffin of any hope of rational science and clear vision from the Science Media Centre-assisted forces who paint ME to be an illness maintained by the young person’s behaviour which can be corrected via CBT, GET or even a pyramid business dressed up to be a treatment.

As often occurs in establishment publicity of ME-related stories the Science Media Centre were involved - heavily influencing a number of media outlets and journals and newspapers, and, of course, the BBC acting as always providing their usual auto-scripted, research-less propaganda.

This media hype and attention around FITNET is intended just to shore up the failing biopsychosocial paradigm.

In the past it has been the PACE trial, the MAGENTA trial, the MRC “expert panels”, the MEGA project.

It has been the attempts to compare ME patients to animal rights extremists simply because they are fighting to get research that will translate into treatments so that they become well again.

The readily available access to these establishment entities - where television, radio and news appearances are set up with no impediment from production departments - contrasts embarrassingly with the news blackout concerning the biomedical research taking place which is making progress - or with the efforts of patients and their friends and families to raise funds for the research that is actually required.

This free access given by the media to the CMRC collaborative and their supporters at the drop of a hat indicates how corrupt is the establishment policy toward ME - a betrayal of people suffering from this terrible disease.

And all of this goes on with the complicity of some organisations that really ought to be criticising this. They are, in fact, part of the problem.

The fact that these stories cause great distress to patients who feel they have no way of countering the lies being made or of expressing their views would seem to mean little to some of these people.

Professor Stephen Holgate’s comments in the BBC report [] is perhaps one of the most shameful items in a sea of dross being pushed by the media -

Prof Stephen Holgate, from the Medical Research Council, said: "CFS/ME is an important disabling condition.

"It has been chronically underfunded for years; patients deserve high-quality research like this."

This is truly appalling and totally disingenuous of Holgate – somebody who has had ample opportunity to move research away from the failed BPS approach. Yet these remarks clearly illustrate how compromised the MRC policies to ME are. Here is someone who could have changed things since 2008 when he became officially involved – and yet, in our opinion, he has totally failed.

It also underlines our request to the MRC to replace completely those who have been responsible for MRC policy in recent times.

An endorsement of failed theories, even by association, demonstrates that nothing is changing as far as the establishment is concerned.

Can any real ME charity remain silent on the PACE trial? Or on its paediatric offspring the SMILE (Specialist Medical Intervention and Lightning Evaluation) which should have been published at the end of 2015, MAGENTA (Managed Activity Graded Exercise in Teenagers and Pre- Adolescents) and FITNET study - or, by way of association and intent, the MEGA project? It is something that people with ME and their families ought, perhaps, to consider.

Perhaps it is a good thing for people with ME that it is possible to identify all of those advocating, supporting or remaining silent about the renewed BPS publicity and projects - at least one can see all that is wrong with ME research together in one “tent”.

The headlines for failed psychiatric research, the readiness of establishment media puppets to continue to shore up these failed theories, and the disingenuous statements issued by some in the ME community are of no great consequence for us.

What does matter, however, is the effect this barrage of appallingly flawed and dangerous soundbite healthcare has on the health and future of patients.

It seems to matter little to those in the establishment how this new orchestrated assault on vulnerable and sick patients by the BPS school and their representatives is making ill people even more ill.

We end with remarks from David Tuller – responsible for taking apart the now infamous PACE Trial – in connection with the recent media onslaught supporting more BPS research – succinct and accurate.

“What a mess!”

The same could have been stated about MRC and UK government policy on research into ME for the last decade or more – and of the views of those continuing to support this flawed BPS ideology.

We need a new direction for research – and Invest in ME Research have offered that.

Our Centre of Excellence approach [4] can lead to more immediate attention and results.

We invite support for this.

Things don’t have to be the way they are – We CAN Change Things

We need a rework.


1OMEGA Petition

2 IiMER Comments to OMEGA Petition

3 FITNET-NHS (Fatigue In Teenagers on the interNET)

4 Centre of Excellence for ME

5 Behind the scenes: Setting up the UK CFS/ME Research Collaborative (cmrc)

Last Update 05/11/2016