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Rocky start for CFS/ME Research Collaborative

Why the Young ME Sufferers Trust declined to take part

When the UK CFS/ME Research Collaborative (UK CMRC) was set up in 2013, to bring together charities, researchers and funders, the Young ME Sufferers Trust (Tymes Trust) declined to attend the launch, claiming it had grave misgivings about the new spirit of cooperation between the groups involved.

The ME charity also presented a paper trail that implicated the UK CMRC in deliberations by Wessely School psychiatrists to change the name of the illness to CFS/ME and to promote ‘researcher harassment’ claims.

In a statement outlining why they would not participate in the Collaborative, Tymes Trust Executive Director Jane Colby said: “This Collaborative is continuing down the chronic fatigue route.

“By contrast, our priority is to end the confusion of including ME (myalgic encephalomyelitis), understood for decades by microbiologists as a persistent viral infection, under the umbrella term of CFS (chronic fatigue syndrome) which mixes patient cohorts and confounds definitions, research and treatment.

“Back in 1996, the national charities of the time rolled over and accepted the term ‘CFS’ as a result of the Royal Colleges Report, where the lead was taken by the psychiatrists. Subsequent events have proved that it is unwise to compromise on one’s principles, and the Trust will never do that.”

Colby believed that the charities were repeating the mistakes of history, “…some examples of which are detailed in our address to the Scottish Cross Party Parliamentary Group on ME in 2004.”

How the term CFS/ME came into being

In a summary of the contents of 212 email chains and associated attachments received from an FOI request to the Medical Research Council (MRC), Colby notes: “…Professor Stephen Holgate, Chair of what was initially called the UK ME/CFS Research Collaborative, initiated and facilitated discussions resulting in a change of terminology, with ‘CFS’ now predominating.

“The charities’ views were overridden; however, they accepted the situation and still took part,” said Colby.

He [Simon Wessely] replied: “Thanks for asking. I think we should stick with CFS/ME frankly. Keeps it in line with MRC and NICE.

Researcher Harassment

Colby was also critical of  a number of gagging clauses contained in the Charter for the Collaborative.

“This Charter, which Collaborative members must adhere to, contains ‘gagging’ clauses which appear to us to equate legitimate criticism and concern for patients with harassment. In our view it is intimidatory and entirely against transparency.

The information received in the FOI request also details behind the scenes efforts, with the involvement of the SMC,  to promote the issue of  ‘harassment of researchers’.

Coming out’ about the harassment has led to increased support for CFS/ME researchers, for example, from colleagues who were not aware of the situation.

Harassment is most damaging in the form of vexatious FOIs.  Complaints are also causing problems.

About the CMRC

The CMRC was launched in April 2013, bringing together researchers, major funders and M.E. charities, with the aim of:

  • Providing a mechanism for M.E. charities, researchers and clinicians to work together in a coordinated and collaborative way
  • Increasing awareness of M.E. within the research community
  • Highlighting priorities for research funding to assist funders such as the Medical Research Council
    increase funding for M.E. research.

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FEATURE PHOTO: Examination by Apionid

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Written by Russell Logan

Russell Logan worked as a magazine publisher and editor until forced into early retirement through ill health with ME. He has battled with moderate to severe ME for 25 years. He now lives in Noosaville, Australia.

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  1. It is disgraceful that FOI requests to try to obtain the £5m publicly funded PACE Trial data are being misrepresented as ‘harassment’. The data should have been published long ago.

    The charity ‘Action for ME’ were part of PACE, the results of which have been spun and used to prevent myalgic encephalomyelitis sufferers from accesing effective treatment.

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