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To: The ME Association

ME Association to leave the CMRC

ME Association to leave the CMRC

The ME Patient community respectfully asks the ME Association to leave the CMRC

Why is this important?

This is to show that the ME Association should best use its resources on biomedical research already happening in the UK and indicate that the CMRC (CFS/ME Research Collaborative) is not fit for purpose.

The collaborative is run and consists of people who consider the PACE trial a good piece of science. The initial aim for the collaborative is to raise a huge amount of money for a biobank when the ME Association is already involved with one which could be improved upon instead. The collaborative has a poor grasp of the definition of Myalgic Encephalomyelitis and the need and urgency of those on the severe end of the spectrum.

The ME Association in leaving the CMRC will help the political situation ME patients find themselves in by opposing those who defend poor science not collaborating with them and thereby indirectly giving them credence. Other authorities and the government will then see clearly where the ME Association stands (and therefore patients) with regards to the biopsychosocial model of ME.

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Reasons for signing

  • The CMRC is under the control of Esther Crawley conistantly recruiting a biased patient selection. The entire manner in which the steering groups are run is not professional. Stepehen Holgate is equally guilty. This organisation has proven itself unfit for purpose in almost every way, the same can be said of the MRC. It's time our charities withdrew their support and demanded action by parliament.
  • The CMRC supports the continued pushing of a dead theory and abuse of the sufferers of this illness with the BPS model including still releasing papers blaming that patients for continuing the illness when it has resolved.
  • After watching the previous two CMRC conferences and trying to explain to the ME association as a member over the last two years that it's a dead end route, I have now withdrawn my membership with the ME association. That the good research organisations arent involved but all patient groups refuse to leave, neatly explains why patients in the UK are still marooned without treatment or access to medical care in 2017. We need a new grassroots charity to move forward.

Updates

2017-07-09 17:51:12 +0100

100 signatures reached

2017-07-09 15:23:58 +0100

50 signatures reached

2017-07-09 14:33:19 +0100

25 signatures reached

2017-07-09 13:20:19 +0100

10 signatures reached