Saturday, 6 November 2021

NICE Guidelines October 2021

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]



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.



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.'

See more here.


Compiled by MD


National ME Survey by ME Advocates Ireland

 

Are you a person with ME or caregiver?
We need your help!

Take part in ME Advocates Ireland - MEAI’s national ME survey to help guide development of healthcare pathways for ME.

The survey is open to anyone in Ireland who has direct experience of #ME

Request survey pack by email please to address:
info@meadvocatesireland.com



In an effort to include your voice and perspective to identify the burden of Myalgic Encephalomyelitis (ME) and explore the needs of all people living with ME and their caregivers ME Advocates Ireland (MEAI) are conducting a comprehensive survey which is now available to complete.
The results of the survey will help us to lobby for services for people with ME and will inform our ongoing advocacy work. It will also provide evidence of where there are gaps currently in healthcare and service provision, and guide plans for the development of much needed services.
The information gathered will offer ME Advocates Ireland an evidence-based platform to campaign on your behalf. It is therefore important that we get as many responses as possible – this is a vital opportunity for people with ME and caregivers to have their voices heard and make their needs known. We would appreciate your time and feedback.
An estimated 10,000 – 19,000 people in Ireland live with Myalgic Encephalomyelitis, a disabling WHO classified neurological condition. Despite this, there are no healthcare pathways, no specialist services, and no guidelines. Very few medics are aware of ME and the more profound symptoms associated with it. The effects of ME can leave the most severely affected patients completely without specialist home services.
Through this survey we hope to raise awareness around the less visible aspects of ME and how it can impact on the day-to-day life of a person living with the condition. It is so important that everyone in the community of people living with ME in Ireland feel that their condition is properly understood and adequately managed by the medical community.









People with ME are suffering endlessly and needlessly without hope of appropriate healthcare services, treatment, empathy or respect.
Faultless knowledge via language - spoken, written, and pictorial - as well as compassion and understanding need to be visible.
Take part in ME Advocates Ireland - MEAI’s national ME survey to help guide development of healthcare pathways for ME.
The survey is open to anyone in Ireland who has direct experience of #ME
Request survey pack by email please to address:
info@meadvocatesireland.com



More information re the National ME Survey
Thanks to those who have already returned the Survey, and thanks to those who are pacing themselves and currently working through it. Please take your time and pace yourself.

We know a few people have returned their Consent Form but are still waiting for their Survey Pack, they will be posted or emailed soon.

Survey Consent Form
If you have already requested a Survey Pack and have been waiting for your Consent Form by email and have not received it yet please check your spam folder for an email with that attached.
Don’t hesitate to get in touch at info@meadvocatesireland.com if you can't find it.


Request a Survey
If anyone hasn’t heard about the national ME Survey or wants to get involved please get in touch.
You can request a hard copy of the Survey sent by post or a Word Doc copy by email which you can complete electronically.
Please contact us at info@meadvocatesireland.com if you are interested.


We need a much greater input from Guardians/Parents of children with ME so that the challenges and often desperate situation facing so many families is well represented.
We are ensuring we have a wide range of feedback. Looking forward to hearing from you.


Thank you for your support.
MEAI Survey Coordinators



Compiled by MD