IMAGE DESCRIPTION: A picture of a person's hand writing letters. The title reads: The Guardian: Letters: Why ME/CFS is still so poorly researched and treated. The ME Association Logo (bottom right)

The Guardian: Letters: Why ME/CFS is still so poorly researched and treated

Readers respond to George Monbiot’s article on the treatment and attitude of the medical profession to the debilitating condition.

Letters

George Monbiot has written an excellent critique of why the medical profession is still failing to provide proper care for people with ME/CFS. Although we now have a new guideline from the National Institute for Health and Care Excellence (Nice) that recognises ME/CFS is a genuine and disabling condition, there has been disappointing progress in implementing the key recommendations.

Nice recommends that a diagnosis should be made at three months from the onset of symptoms. But many people are waiting a year or more for a diagnosis. Very few existing specialist referral services are able to offer the type of multidisciplinary care that Nice recommends, and services for the 25% of people who are severely affected are not being prioritised.

Access to specialist care in England remains patchy and is nonexistent in Scotland, Wales and Northern Ireland. Children with ME/CFS are still being threatened with inappropriate childcare proceedings. For a condition that costs the country about £3.5bn a year and affects at least 250,000 people, government investment in research and management has been pitiful. This neglect, which has been based on what is now discredited science, can no longer continue.

Dr Charles Shepherd
Honorary medical adviser, ME Association

Dr Charles Shepherd,
Trustee and
Hon. Medical Adviser
to the ME Association.

Dr Charles Shepherd

 I was depressed but not surprised by the article. I worked as a GP for 34 years until retiring and looked after a number of patients with CFS. Several had switched to my list because their previous GP felt their symptoms were purely psychological. I felt that they had significant physical symptoms of fatigue that affected their health, as well as a psychological reaction to the impact of this on their daily life. They often gave a clear history of having been under a period of prolonged prior stress, then catching an unpleasant virus infection, particularly glandular fever, and failing to recover.

One of the few good things that has come out of the pandemic is that there is increased awareness that a viral infection can lead to long Covid, the symptoms of which are very similar to CFS. There is now research happening into long Covid and I sincerely hope it can also help people with CFS.

Dr Ros Kennedy
Bristol

N.B: The ME Association is providing a link to all the letters that have been published for information purposes only. We do not necessarily endorse what has been written in all instances.

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