Financing a judicial review of the NICE guideline on ME/CFS

The ME Association recently received an email from the One Click  Group asking for a contribution towards the costs of bringing a legal action for judicial review of the NICE Guideline on CFS/ME. The Association has been asked by members for its view on whether such a contribution should be made.

The Board of Trustees believe that each individual must make their own judgement as to the merits of donating to the One Click action but it has decided not to make any contribution from the charity’s funds. There are, at the moment, too many unknowns about the the chances of success or otherwise of such a case. The opinion of Counsel has not been disclosed and the judicial review expertise of instructing solicitor nor the barrister used is unknown. Launching a court action may well cost at least £20,000 but if fought the costs may be many times more than the amount requested. In addition, there is no indication whether a conditional fee agreement is in place and there is no guarantee that the court action will not be abandoned for lack of money. Even if successfully fought who knows what alternative to the existing Guideline will be brought into place.

There are other avenues open to seeking change to the NICE Guideline in respect of the failings that the ME Association identified in its Statement on the Guideline. Monitoring the practical application of the Guideline is crucial. It will be in the delivery of care to people with ME/CFS in the light of the Guideline advice that will guide our actions. In addition we shall continue to exert pressure for the failings of the Guideline to be amended and, to this end, we urge everyone to write to their Members of Parliament, using either the pro-forma letter which was sent with the October Edition of ME Essential or by using a copy of that letter which is available for downloading from the ME Association’s website.

The Board of Trustees has a duty of care in respect of the charity’s funds. We are ultimately responsible for everything the charity does and how it does it. We must make sure that the charity’s assets are used exclusively to pursue the charitable purposes which are set out in its governing documents, namely:

  • to offer relief to persons of all ages with ME/CFS through the provision of information
  • to further education in all aspects of the illness
  • to support research and to publish the useful results of such research

The Trustees believe that the best use of the charity’s funds lies in pursuing these aims rather than contributing towards a legal action where both success and outcome are problematic and over which donors to the fund have no control.

Neil Riley

Chairman of The ME Association

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