The UK National Institute for Health and Care Excellence (NICE) has on 29th October 2021, published the new guideline 2021 (NG206) for diagnosis and management of Myalgic Encephalomyelitis (ME.) This replaces the dangerously flawed guideline from 2007.
The controversial treatment, called graded exercise therapy (GET), has been removed from guidance given by the UK National Institute for Health and Care Excellence (NICE) for diagnosing and managing Myalgic Encephalomyelitis (ME)
ME is a complex long-term multi-systemic condition that causes disordered energy metabolism and can be profoundly disabling. ME is classified by the World Health organisation as a neurological illness, ICD G93.3 since 1969.
The new NICE Guideline (NG206) says that ME is a complex condition where there is no “one size fits all” approach to managing symptoms.
The new NICE guideline recommends a route to earlier diagnosis for those with ME.
Graded exercise therapy (GET) and cognitive behavioural therapy (CBT) cannot now be offered as treatments for ME. The new guidelines echo the longstanding views of many people with ME, their carers and families.
The new NICE Guideline (NG206) for Myalgic Encephalomyelitis (ME) WHO ICD G93.3 is a small but welcome step.
The new guideline published on October 29th 2021 is only a small attempt to undo the damage done by inaction, ignorance, gaslighting and negligence since 2007. While the new guideline published is very far from ideal, and there is still a long way to go to provide appropriate guidance and policy development in Ireland, the removal of the most harmful treatment recommendations (GET & CBT) is a significant milestone on the road to proper recognition and treatment for ME.
It remains to be seen how implementation of the new guideline will work in Ireland as well as the UK and the rest of the world.
Even well before the release of the new guidance, worrying evidence emerged about how GET, now removed, was already being repurposed by certain quarters (psych) in treating patients at clinics in the UK and the new label that is being used is Graded Activity Management (GAM).
Even more worrying is the response by some stakeholders, i.e. the Royal Colleges, who, immediately following the publication of the new NICE Guidelines, indicated that they do not agree with the new guideline and will continue to promote their own brand of exercise and cbt treatments.
In the light of the new
NICE Guideline 2021 (NG206) we in ME Advocates Ireland (MEAI) recognise that there is a lot of work to be done re NICE recommendations and implementation. In the interim we would hope that the HSE, Department of Health and all doctors and medical staff across all tiers would consider the following:
1. How will you be changing your policy and practice with regards to Myalgic Encephalomyelitis (ME) in light of sections
1.11.14 and
1.12.28 of NICE Guidelines NG206.
2. Your assessment of someone with ME carries the risk of harm due to the pathophysiology of ME. What guideline do you follow and what evidence base do you rely on which supports your diagnosis and management of ME.
3. When do you expect your specialist medical team to match that of page 54 NICE Guidance 2021 (NG206), and if you do not expect your team to match that as defined on
page 54 then please consider which types of professionals your team will consist of.
4. Your assessment of someone with ME carries the risk of harm due to the pathophysiology of ME. What guideline(s) do you follow and what evidence base do you rely on which supports your diagnosis and management of ME. Have you created a risk assessment policy that you will be using from now on prior to each interaction with a person who has ME in order to be in line with section
1.17.4. in NICE Guideline 2021 (NG206)
Invest in ME Research (UK)
Statement October 2021
NICE Guidelines - Taking Us Forward to 2007
'When a national organisation that has been given responsibility for clinical
excellence and care announces that a new set of guidelines for a disease is to be
created, following fourteen years having passed since the last version was
published, then it might be considered to present a great opportunity.
Indeed, Invest in ME Research had campaigned for, and welcomed the review.
Here was an opportunity to evaluate new research, to document and recommend
new treatments and practices, and to introduce new recommendations and
guidance in order to remove flaws in the previous outdated guidelines.
After all, new research into the disease would inevitably have taken place during
those fourteen years that would necessitate modification, and effective
treatments may well have become available.
It is a damning indictment of the state of affairs regarding ME in the UK that the
updated NICE guidelines can do no such thing.
Instead, the guidelines document of 2021 is only able to attempt to undo the
damage done by inaction, ignorance, apathy and negligence during the past 14
years.'
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