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The new NICE Proposals for the Guidelines are up and SMC gives voice to the Deluded


Senior Member
I am very disappointed by the new draft guidelines. At last NICE recognises that GET/CBT are not cures for ME and that GET is not an appropriate treatment. Plus it acknowledges that there is a dire need for education of health professionals and the distrust that many pwME feel towards the medical community. Is that it?!

The recommendations are weak and I do not believe will do much to significantly improve the life outcomes for pwME. The draft talks about specialist services working with pwME to draw up personalised care plans and support them. However, there is a dire shortage of these services across the UK. Do the draft recognize this? NO Does it recommend a big investment into providing specialist care for pwME? NO
I live in West Yorkshire (pop approx 1.9 million) there is one NHS specialist centre to my knowledge based in Leeds. I've been to it twice and I got alot worse under its tender mercies.

The recommendations for future research are again weak. Take the issue of pain. I recently interviewed Professor Jan Nijs, who has spent the many years researching chronic pain and ME. His latest research points to a link between neuro-inflammation and diet as contributing factors in causing pain in pwME. Will NICE recommend research into these biological causes of pain in pwME? NO

I could write a book about bad this draft is. I agree with a press release recently put out by Invest in ME that this is tepid stuff that won't make much of a difference to the life outcomes for pwME.

Am going to carry on fighting against the dire lack of resources put into supporting pwME - hell yes.

it does seem odd if the guidelines doesn’t acknowledge the services problem. Who best to discuss it than the commitee giving service use recommendations?
People are saying the research recommendactions are a problem, are the recommendations supposed to be general ones or ones specific to what the NICE committee would find helpful in their remit of writing management guideline?
I am concerned by draft guidelines complete refusal to acknowledge the massive under funding of community/specialist health services for ME.
The draft makes no mention of how there needs to be a big increase in funding for such services.

It makes no mention of the huge increase in funding for biomedical research into ME that is so desperately needed.

The draft keeps talking about patients and care plans.
Where is the commitment to roll out a comprehensive education programme of health professionals so they can at least be empathetic towards ME patients even if there are no effective treatments?

The draft makes no mention of how pwME are to get a better treatment when it comes to applying for disability benefits. I did a FOI request tot he DWP 4 years ago and it revealed how thousands of pwME had their applications for ESA/PIP turned down. The DWP's treatment of disabled people is shockingly bad in this country and this draft will do nothing to address the problems pwME face when accessing the benefits system.

I am still angry at this lame draft. It will do nothing to improve the quality of my life. The medical establishment made concessions on GET in the face of overwhelming evidence that it is harmful. The people at the top of the medical establishment are indifferent to our fate. It is only our community's continuing pressure that is going to bring about meaningful reform.


Senior Member
U.S., Earth
Chat To NICE ME/CFS Guideline Committee Members

MEAction said:
After too many years of waiting, the final version of the new ME/CFS guideline developed by NICE will be published on the 18th August 2021!

On Tuesday 24th August at 5pm, we’re holding a community Q&A, and will be joined by two of the NICE committee members, who have spent almost 3 years working on this guideline.

We’re excited to welcome:
  • Adam Lowe, lay member and person with ME
  • Caroline Kingdon, Research Nurse and Research Fellow working with the UK ME/CFS Biobank
This is your chance to delve into more depth around the guideline, ask questions about the processes that were undertaken, or find out what these committee members see as the most noteworthy recommendations this guideline makes. You could ask how they see care for people with ME changing, or what they think the next steps are now the guideline is published.

They can’t tell us what other committee members said during meetings, but they will answer all your questions to the best of their ability.

You will be able to ask questions by putting your hand up and speaking, typing in the chat box, or sending us a question in advance to uk@meaction.net

There are only 100 spaces to attend so register now!


Senior Member
U.S., Earth
NICE Guideline To Be Implemented In Scotland

MEAction Scotland said:
NICE news for Scotland! Throughout the development of the NICE guideline for ME/CFS, #MEAction Scotland has been in regular contact with the Scottish Government about the change needed in Scotland. Now that the guideline has been published, the government has got in touch to involve us in a development.

What is the plan?
The government plans to create practical guidance to support the implementation of the NICE recommendations in Scotland. This will be a new process and they have brought in an external consultant, Blake Stevenson, to interview stakeholders and advise on the best way to do this for patients and professionals.

#MEAction Scotland is a stakeholder and will engage as fully as possible with the process to achieve the best outcome for people with ME. The consultation will take place over the next couple of months and we will keep the community updated.