Today WAMES, joins the ME Association, Tymes Trust, 25% Group, Invest in ME and Hope for ME in calling for the release of PACE trial data so that an independent investigation can begin:

To: Records and Information Compliance Manager, Queen Mary University London
Copy to: Professor Simon Gaskell, Principal, Queen Mary University London

RELEASE OF PACE TRIAL DATA

Dear Sir,

WAMES, the national charity representing people with ME & CFS in Wales, feels compelled to write and express immense concern at the continuing refusal of QMUL to share data from the PACE trial with other researchers. This refusal makes life difficult for patients and healthcare professionals alike.

In Wales WAMES is working with Welsh Government officials and Health Boards to improve healthcare pathways and services for people with ME and CFS. Health Boards wish to develop services with a sound evidence base. Patients wish to be sure that services offered are safe and appropriate for them, but currently there are so many questions and doubts surrounding the so-called evidence base and especially the PACE trial:

  • Researchers around the world are challenging the methodology and interpretation of the results
  • Patient surveys and personal stories highlight the harm or lack of help from exercise programmes
  • Results of research reveal ongoing dysfunction following exercise, which is at odds with the assumptions underlying the PACE trial.

Perhaps some people can be helped by the recommended therapies, but patients need to know if they will be helped or harmed and if they can trust the professionals who promote the therapies at the expense of other approaches. Health Boards need to know if there are better ways to spend their money in these cash strapped times.

Sharing data from the trial and cooperating with an independent investigation will hopefully provide enough clarification of the value of the therapies to:

  • safeguard the health and safety of the estimated 250,000 people with ME and CFS in the UK
  • promote trust between patients and NHS staff
  • enable Health Boards to spend money effectively

With so much to gain from data sharing, we urge you not to delay and face up to the inevitable.

Yours sincerely,   Jan Russell

Jan Russell          jan@wames.org.uk
Chair / Cadeirydd
Welsh Association of ME & CFS Support
Cymdeithas Cefnogi ME a CFS Cymru

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