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Through A Glass Darkly: ‘Implementation’ of the new guideline for ME in the UK

In October 2021 NICE issued its a long awaited new guideline for people suffering with ME. This was followed up in May 2022 by the issuance of an implementation directive, which is not done very often by NICE, as pointed out by the Lancet medical journal. NICE emphasized that the implementation of the guideline would require genuine co-production i.e. working in collaboration with the ME community.

This was followed up in September 2023 by the Department of Health holding a public consultation about how to improve the experience of public services used by and life outcomes for people with ME. It emphasised how it would work with the DWP, (which really should be called Department for War on the Poor), to improve life for pwME. There were no time lines given as to when or how the improvements would take place just vague commitments. There was no commitment of any funding to carry out the improvements which it mentioned in the consultation.

After being ignored for many decades and suffering from health inequalities, systematic discrimination and stigma at the hands of the British medical establishment people with ME could be forgiven for believing that all of this activity heralded a brave new dawn in which finally they would start to see steps to improve the situation they face.

I’ve spent the last year trying to negotiate with middle managers from my local ICB and with one of the senior decision makers from the ICB which covers the county I live in, as to how they are implementing the new ME guideline and address the health inequalities which pwME face.

It is very clear from recent discussions that the local ICB, which covers the boundaries of my local council, and the regional ICB that they do not have a penny to spend on ME provision when it comes to implementing the recommendations in the new NICE guideline.

Managers from the local ICB have also noted the problems they are experiencing just to stand still, which include redundancies of staff across the regional ICB due to yet another reorganisation.

Today I received a condescending reply from a question which I put to one of the public meetings which the regional ICB has each month. These public meetings are held to prove how transparent it is and how it really takes the public's view seriously. After two months of constant pestering the reply, from the Governance Board of the regional ICB, stated that the regional ICB has implemented some of the NICE guideline recommendations. That is a downright lie. I’ve been told by one of the senior decision makers that the ICB leadership recently had a presentation delivered to them which outlined the level of provision for ME across the region. It hasn’t taken any steps to implement the new guideline as it does not yet even have a member of staff in place to even start coordinating the implementation of the new guideline.

As an aside I could have saved them the money and time spent on this research by informing them that provision across our region is no existent apart from the regional ME clinic which is not fit for purpose.

So were do we go from here? I recall interviewing Dr William Weir a couple of years ago and he spoke about one of the problems which the ME community faces which is the dogma which dominates the thinking of the British medical establishment. This makes it resistant to any new scientific thinking which challenges its ultra conservative and dogmatic way of thinking. I suppose we have no choice in continuing to keep flying the flag of resistance and fighting our corner with officialdom.

After a battle the ME community got NICE agree to a review of the 2007 ME guideline and after a shameful delay, which involved closed door meetings between NICE and various organisations which claim to speak for the ME community, the new guideline was finally published in October 2021. Despite its grandiose declarations that this represented a new beginning there was no mention of any funding to implement the 18 separate recommendations. The Department of Health public consultation in September last year again makes lots of promises but again makes no mention of funding for the improvements it claims will be made.

This all smacks of emotional abuse of a gravely ill section of the population, who have suffered and continue to suffer from health inequalities, by the medical establishment. Ho hum what’s new there.

As the late Dr Ian Gibson pointed out in his book Science, Politics and ….ME the British medical establishment has played politics with our illness for far too long. It appears that it is not prepared to put money into the changes which are necessary to help bring about an improvement in the low health related quality of life which many people with ME experience. Shame on them!