Myalgic Encephalomyelitis Community
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Neurology Services

Myalgic Encephalomyelitis is a neurological condition coded ICD-10-CM G93.3 since 1969 by the WHO

(World Health Organisation) The neurological services and standards of care are very important for us as a community if the best treatment is ever going to be widely available.

I work with a patient reference group for The Neurological Alliance trying to improve how services are delivered this report looks at the services available across a wide range of neurological conditions before making recommendations.

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I think this is really important as I strongly believe Neurology services are the future for ME medical care. Obviously the neurologists will need training in ME and the services will have to be adapted to facilitate home visits etc.

But I strongly believe that the quickest and most effective way to give ME patients better long term medical support and monitoring and all the relevant health services is through neurology services.

I also see this as being the most likely alternative to the fatigue clinics (which cannot help most people, especially those who are moderately and severely affected, and these clinics only offer short term involvement and therapy and not the medical and health care management that is needed long term) to happen because of the WHO neurological classification.

If we are pushing for alternative to CBT and GET clinics then I believe transition to being under general neurology would be most realistic.

I think neurological alliance do good work and it's encouraging to see they have ME patients on their steering groups. I know ME Association are linked with them too.

This will help get better understanding of ME from the neurology sector.


Since July 2012 these reports have helped the neurological SCN (strategic clinical networks) shape long term service provision with patient input so that we get what we need not what a quango thinks would be best such as CBT and GET because of NICE guidelines.

The NHS faces many challenges not least of which is funding so combining our voices with other neurological conditions will increase the leverage, 250,000 ME patients may struggle but Alzheimer's is one of the fastest growing demands on service provision as the general population live longer SCN are charged with meeting this service demand.

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