ME Association Website Survey: Why we’re asking about medical evidence and ME/CFS | 03 December 2018

December 3, 2018


Dr Charles Shepherd, Hon. Medical Adviser, ME Association.

Each month, we feature a survey on the Homepage of our website and invite members of our online community to take part.

Results from November's website survey.

For November, we asked about the provision of health care plans.

This month we continue to gather patient feedback that will be useful in the preparation for the new NICE clinical guideline on ME/CFS.

We are asking about the provision and quality of medical evidence from NHS GPs and specialists.

These are most likely to be in the form of reports or letters and are used to help with:

  • DWP benefit applications,
  • Modifications (reasonable adjustments) relating to work or education,
  • Provision of social or respite care etc.

These are all key components of the overall management of people with ME/CFS and success is far more likely if a health professional who is actively involved with your care is being supportive and providing medical evidence upon request.

Anecdotal feedback to the ME Association indicates that while some NHS doctors and specialists are very willing to provide supportive written reports without charge, others charge a fee, provide unhelpful reports or may even refuse.

If you would like to comment on this survey, or provide additional information, please do so in the comments section below, or on the ME Association Facebook page, or by contacting us: Please title your message: “Website survey – medical evidence.”

Thank you.

ME Association Ramsay Research Fund Christmas Appeal

Help us do more for M.E. research in 2019

If you would like to support our Christmas Appeal, then please:

  • Donate online via our JustGiving page or to start fundraising,
  • Donate by phone using a card to head office (01280 818964).
  • Donate by cheque payable to The ME Association (with a note saying that it is for the Christmas Appeal) to ME Association, 7 Apollo Office Court, Radclive Road, Gawcott, Buckinghamshire, MK18 4DF.

If you have any questions about the Appeal, then please contact our fundraising manager, Helen Hyland.

ME Association Registered Charity Number 801279


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