Friendly Fire? The Fog of ME Politics

As a charity set up and run by volunteers we would hope that it would be clear to all that Invest in ME Research seeks to achieve the quickest route possible to finding cause(s) of and treatment(s) for ME.

That is the foundation for all that we do and the basis of our strategy of finding, facilitating and funding high-quality biomedical research into ME.

We would expect that many in the CFS/M.E. Research Collaborative (CMRC) would be supportive of Invest in ME Research’s attempts to build a strategy of biomedical research into ME and be respectful of our views on research into ME, as being in the best interests of patients suffering from this disease and their families.

So it comes as a surprise that, in recent days, Invest in ME Research has been made aware of an email to a member of our advisory board from Professor Stephen Holgate – chair of the CMRC – regarding the MEGA petition [1] and concerning the charity’s support of the sentiments expressed in the OMEGA petition [2] which opposes the MEGA proposal.

The email trail that we have seen – which may or may not be part of a larger email discussion that we have not seen – originates with an email from a CMRC board member (a trustee of another ME charity) to Professor Holgate suggesting that he (Professor Holgate) consider writing to the whole of Invest in ME’s medical advisory board regarding our position on the MEGA proposal.
Indeed, the title of the email that we have seen is “Scientific Advisory Board of Invest in ME”.

The original email also states that Invest in ME’s “enthusiastic support” to the OMEGA petition is one of the reasons why that petition had over 2000 signatures.

All of this has been carried out without the knowledge of the Invest in ME/Research chairman or trustees and with no direct contact being made to the chairman of Invest in ME Research.

We are assuming that the email from Professor Holgate to our advisor was sent in his capacity as chair of the CMRC, as he mentioned the CMRC in his email and the MEGA proposal follows a CMRC workshop, and the originating email was from a CMRC board member.

Though we have made our position about the CMRC very clear from the beginning [3] it would not be expected that the chair of that organisation, or any members of the CMRC board, should be involved in actions which might be interpreted as an intervention in the policy decisions of Invest in ME/Research.

We feel it would have been far better if Professor Holgate could have communicated directly to Invest in ME Research.

Whether it was intended or not it does appear to Invest in ME Research that this was an attempt to influence the affairs of the charity.

We have, therefore, sought clarification directly from Professor Holgate regarding these emails and the position of the CMRC with regard to this.

We have sent a letter to Professor Holgate and asked the following questions which we hope Professor Holgate will answer.

Our Questions to Professor Holgate

  • We have only seen this one email trail. Are there others that concern Invest in ME Research within the CMRC or MEGA proposal group?

  • Is this part of a larger campaign, or campaigns, against dissenting voices who oppose MEGA by the CMRC, or by those involved in MEGA, or by another group or organisation of which you are a member?

  • We note that, in your email to our advisory board member, you purposely included and cc:d several others of the CMRC – including some MRC representatives. Are all members of the CMRC aware of this and in agreement with your action in contacting our advisory board without the knowledge of Invest in ME Research?

  • Is it the norm for the CMRC to contact the advisors of other charities who oppose CMRC projects, without the knowledge of the charity chair and trustees – and is this a policy of the CMRC which is meant to influence the policies of that charity?
    If this is so then has that policy been authorised with the knowledge and agreement of the full CMRC board and of CMRC members? And if so has it been documented for the public to see?

  • Have you made contact to all of our advisory board or to others in the ME community or research community, or any others, in any attempt to influence the policies of Invest in ME Research?

  • Have you also contacted the advisory boards, or equivalent supporting bodies, of other charities who oppose MEGA without the knowledge of the charities themselves?

  • We note that the most recent organisation to have signed the OMEGA petition which opposes the MEGA project is the Irish ME Trust – an organisation not located in the UK. Have you also contacted their advisory board, or equivalent, to attempt in any way to alter their policy?

  • As we know that the Science Media Centre sits on the board of the CMRC then is it also with the involvement of the Science Media Centre that you have contacted our advisory board?

  • With your status as an advisor to Action for ME do you not feel that you have a distinct conflict of interest if one also considers your involvement in CMRC and MEGA and MRC - and that you should not be contacting our advisor in this way as it may make you appear to be less than impartial when attempting to influence research into ME?

  • Will you and the CMRC provide an assurance that you will not endorse or condone any attempt to subvert the policies of Invest in ME Research by influencing our advisory board and that you will contact the chairman of Invest in ME Research directly if you have any issue with the charity’s position on any subject related to ME?

Invest in ME Research has sought to do no more than comment on the MEGA petition when asked by supporters.

Regarding the allegation in the email trail that Invest in ME’s “enthusiastic support” to the OMEGA petition is one of the reasons why that petition had over 2000 signatures -
In our statement [4] we wrote “We support the sentiments expressed in the OMEGA petition.”
The jump in support numbers for the OMEGA petition actually came after the Science Media Centre issued a press release regarding the FITNET trial [5]. Reactions to that press release [6] and the following media circus, which gave an inordinate amount of coverage to the FITNET trial and a member of the MEGA team and vice-chair of the CMRC, was the cause of an increase in support for the OMEGA petition.

We feel the implications surrounding this matter are serious and that is why we have sought clarification and an explanation from Professor Holgate.

We do find it unacceptable that our advisory board is contacted without our knowledge in matters that relate to the charity’s affairs.
We hope that there was no orchestrated intent to somehow manipulate Invest in ME Research's decisions and policies.


References

1 MEGA (M.E./CFS Epidemiology and Genomics Alliance) petition

2 OMEGA Petition

3 A Tale of Two Collaboratives

4 Invest in ME Research Statement on OMEGA Petition

5 SCM Press Briefing Testing a ‘controversial’ treatment for CFS/ME in children

6 BBC Coverage of FITNET - "Landmark chronic fatigue trial could treat two-thirds"

7 Influences on Research into ME


Last Update November 2016