Forward ME respond to NICE consultation on new guideline for suspected neurological conditions

[AndyPR]

Forward-ME submission to NICE suspected neurological conditions consultation.

There is a new guideline being considered by NICE (National Institute for Health and Care Excellence) that has a direct bearing on M.E. and Fibromyalgia.

The Suspected Neurological Conditions guideline attempts to set out the initial symptoms and signs that might indicate a neurological condition, and the circumstances under which it is considered advisable to make a referral to neurological services:

This guideline covers the initial assessment of symptoms and signs that might indicate a neurological condition.

It helps non-specialist healthcare professionals to identify people who should be offered referral for specialist investigation. The guideline has separate sections for adults (over 16) and children (under 16).’

Who is it for?
– Non-specialist healthcare professionals in primary and secondary care.
– Healthcare professionals in neurology departments.
– People with suspected neurological conditions, their families and carers.

Overview and ME Association position

The consultation is now at the stage where stakeholders must submit comments against the current draft before 19 September.

Forward ME – the collaboration of ME/CFS representatives that includes the ME Association – has now provided its own submission and made it available on its website.

The new guideline should be a useful resource for patients just as much as it is for healthcare professionals, but there are some significant concerns for people with M.E./chronic fatigue syndrome and fibromyalgia.

Perhaps the first thing to note is that ME/CFS and fibromyalgia are the only conditions named in the guideline (aside from anxiety and depression).

Second, and of more concern, is that they are both erroneously conflated with ‘functional’ syndromes, illnesses or disorders.

And third, that people with these conditions are not recommended to be referred to neurology for specialist care.

Overall, the new guideline is attempting to reduce the number of referrals to neurology services.

Read more at http://www.meassociation.org.uk/201...ed-neurological-conditions-11-september-2017/

 

[charles shepherd]

ME/CFS and neurologists:

The majority of UK neurologists

(84% in one rather flawed peice of research: http://www.meassociation.org.uk/201...eurological-illness-survey-results-discussed/)

do not believe ME or CFS is a neurological disease and see it as a functional somatic sydrome

Abstract
In this month's issue, we report a survey of members of the Association of British Neurologists, which asked if they viewed chronic fatigue syndrome (CFS) as a neurological condition--84% of respondents did not. This is at odds with current classification in ICD-10. We discuss the difficulties of classifying CFS and myalgic encephalopmeylitis (ME), including historical and sociological factors, the pitfalls of the physical/psychological dichotomy and why classification matters to doctors and patients.

Chronic fatigue syndrome: Labels, meanings and consequences (PDF Download Available). Available from: https://www.researchgate.net/public...gue_syndrome_Labels_meanings_and_consequences [accessed Sep 11, 2017].

In other words, they believe cause and magagement should be largely based on the psychosocial model whereby ill health and disability in ME/CFS is far more related to abnormal illness beliefs and behaviour than any form of underlying disease process

Dr Charles Shepherd
Hon Medical Adviser, MEA

 

[anni66]

I sincerely hope that biomedical research ( sadly largely elsewhere) continues at the same pace as the previous couple of years and refutes this " false belief" . Perhaps neurologists would benefit from a particular version of CBT.
The most upsetting aspect is that UK was at forefront of biomedical research in the 1980s. Think where we might have been now ....