Statement from Invest in ME Research

17 August 2021

NICE Updated Guideline on the Diagnosis and Management of Myalgic Encephalomyelitis (ME or ME/CFS)



17th August 2021

Statement from Invest in ME Research

Whilst in the process of summarising our review of the new NICE guidelines for Myalgic encephalomyelitis/chronic fatigue syndrome: diagnosis and management) we have received the following notification from NICE via email (as IiMER are a stakeholder for this topic) -




NICE MEDIA STATEMENT

NICE pauses publication of updated guideline on diagnosis and management of ME/CFS

NICE has today (17 August 2021) taken the decision to pause publication of its updated guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS).
The guideline recognises that ME/CFS is a complex, multi-system, chronic medical condition where there is no ‘one size fits all’ approach to managing symptoms. The causes of ME/CFS are still poorly understood and because of this there are strong views around the management of this debilitating condition.
Because of issues raised during the pre-publication period with the final guideline, we need to take time to consider next steps. We will hold conversations with professional and patient stakeholder groups to do this. We need to do this so that the guideline is supported.
NICE has used its usual rigorous methodology and process in developing this guideline but despite the best efforts of the committee, that followed these to the letter to bring together the available evidence and the real, lived experience and testimony of people with ME/CFS, we have not been able to produce a guideline that is supported by all.
We want to thank everyone who has contributed to this guideline and particularly the committee and the patient groups who have worked so diligently. However, unless the recommendations in the guideline are supported and implemented by professionals and the NHS, people with ME/CFS may not get the care and help they need.
In order to have the desired impact, the recommendations must be supported by those who will implement them and NICE will now explore if this support can be achieved.



After the chaos of setting up the "balanced" working group we now received this news on the day prior to the announced publication of the final guidelines. IiMER - as a stakeholder - were given less than two weeks to review the final guidelines. In order to be in a position to publish final guidelines NICE must already have been in a position where they were content to publish these guidelines on the date chosen - 18th August.

For NICE now to state that "we have not been able to produce a guideline that is supported by all. " is irrelevant - this is why there was a review.

The ominous statement - "However, unless the recommendations in the guideline are supported and implemented by professionals and the NHS, people with ME/CFS may not get the care and help they need." indicates that more manipulation is going on behind the scenes from an establishment that has for years done anything but provide the care and help that ME/CFS patients deserve.

This is gross incompetence by NICE and probably background manipulation from others.

It deserves a full scale inquiry into the role of NICE and those who are really controlling the agenda with regard to this disease.

It should be noted that Invest in ME Research repeatedly commented on the need for retraining and the lack of specialist teams when the NICE draft guidelines were published in November 2020 -
https://www.investinme.org/IIMER-Newslet-20-12102.shtml
despite NICE claiming repeatedly that no extra costs would likely be incurred or required.

What a debacle!

Last Update 17/08/2021

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