UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

Given that it's massively important to take every media opportunity to remind people that this was an extensive 3+ years evidence review process, not a campaign of any kind, that lead to those conclusions. The only role activism played in this is to make it happen. And it did, but the conclusions are independent of it, we only made the review happen, it arrived at its conclusions by a thorough process.

 

York Press:
Health watchdog no longer recommends graded exercise therapy for ME

https://www.yorkpress.co.uk/news/na...atchdog-no-longer-recommends-graded-exercise/

 

Discussion of the new guideline taking place on LBC right now. Can listen here: https://www.globalplayer.com/live/lbc/uk/

(Sorry if this is elsewhere, didn't know where to put it!)

 

I am afraid Paul Chrisp doesn't get what this is all about.

He talks of exercise making people with ME tired and the harm of GET being that they are more tired.

He also goes on about the personalised versus fixed increment business.

If this is the top level take from NICE on its guideline it is not good.

 

Is it time to start replying to everyone with, "Read the guideline!"

Or perhaps even better, "Dare I say read the guideline!"

 

Is the word Graded Activity management mentioned in the new guideline?
Bedford fatigue clinic website just changed GET to GAM.
https://www.elft.nhs.uk/service/419/Bedfordshire-Chronic-Fatigue-Service

 

Journalists and editors wouldn't know to use them. What would be useful would be to provide those photos for the commonly-used platforms (e.g. Getty), properly tagged. Although there will always be a problem that any photo labeled "fatigue" will be completely inadequate, especially as despite the odd insistence of many, "sick" doesn't look like anything in particular. The only image that works well is someone with the flu but even then the main feature people see is the red nose from blowing too much snot, so hardly representative.

The only images that work would be something representative of immunology, but of course yet again the infectious origin of ME has mostly been glossed over so anyone unfamiliar with the issue wouldn't know to use them. We can't make people have an accurate picture of ME unless and until medicine actually does.

 

and another here
https://www.s4me.info/threads/misre...ory-are-we-telling-2021-mcmillan-et-al.22459/

 

I doubt it.
He has been aware of everything going on for 3 years.
He isn't a medic. I just don't think he has the background knowledge to appreciate what the real issues are. Either that or he wants to keep everyone in authority happy.

 

Letter from my MP, timed 8.29 this morning.


Dear xxxxxxxx. xxxxxxx

I am sure that, like me, you have been delighted to hear that the NICE ME/CFS guidelines have been published today with Peter Barry, Consultant Clinical Advisor for NICE and chair of the guideline committee, expressly stating:

“People with ME/CFS should receive individually tailored support focused on personal agreed goals and a range of approaches should be used depending on the patient's preferences and priorities.

And the guideline makes it clear that any programme based on fixed incremental increases in physical activity or exercise, for example graded exercise therapy (GET), should not be offered for the treatment of ME/CFS.”

I am sure that the campaigning by those such as yourselves who have direct experience will have played a huge part in this.

................

With best wishes,

Ed Davey


edit: letter of thanks sent

 

https://twitter.com/user/status/1454097033674072065

 

Thanks Adam pwme.

I think we should have a full copy on the thread:

https://www.rcplondon.ac.uk/news/medical-leaders-sign-joint-statement-response-nice-guidance-mecfs

Medical leaders sign joint statement in response to NICE guidance on ME/CFS
Details
29 October 2021

Press & public relations
Telephone: +44 (0)20 3075 1466 +44 (0)7896 416409
Email: media@rcp.ac.uk

Medical leaders have signed a joint statement in response to the National Institute for Health and Care Excellence (NICE) guidance on the treatment and diagnosis of Myalgic encephalomyelitis (ME) / chronic fatigue syndrome (CFS).

We are pleased that NICE have now published their guidance for the management of ME/CFS which is a chronic, poorly understood condition and can be highly disabling and distressing. It is important that all patients with this condition are given access to the best possible services and treatments available.

The published guideline contains some positive changes, but these do not go as far as we would have liked and understate the importance of activity and exercise in the management of ME/CFS and the connection between people’s mental and physical health. We also do not think the changes represent the positive discussions that have been had with patient groups.

As in many chronic conditions, people’s mental and physical health are intrinsically linked. This guidance risks undermining the importance of these links by dismissing the potential of treatments such as Cognitive Behavioural Therapy (CBT) as of less value in alleviating symptoms than pharmacological interventions.

There is considerable disquiet in the medical profession and some patient groups about the way the data and evidence have been assessed but the important thing now is that services are commissioned in a safe and effective way that does not disadvantage any patients being treated now or in the future.

When commissioning services we would reiterate that:

Graded Exercise Therapy) as defined in the guidance is not reflective of the personalised paced exercise programmes that are currently used in the NHS and termed GET. These have provided benefit to many patients and should not be discontinued. However, we recognise that the phrase GET is unhelpful and this terminology should be dropped to allow clinicians to work with their patients in a more productive way.

CBT remains a valuable treatment for alleviating symptoms in ME/CFS and services should ensure patients have access to this and other psychological therapies.

Specialist rehabilitation medicine services and exercise medicine services regularly look after patients with ME/CFS (and also provide complex care and long-term support for very severe ME/CFS) but are not specifically recommended in the guidance. There are very few dedicated ME/CFS specialist services either in the community or hospital setting and thus if commissioners do not use specialist rehabilitation medicine services and exercise medicine services, these patients will lose out.

Commissioners must also take action to ensure training and support is available for the full range of specialist ME/CFS roles needed and are easily accessible for GPs and other clinicians across the NHS, so that this guidance can effectively be put into practice.

Many patients with ME/CFS have other conditions including chronic pain and fibromyalgia which are improved with exercise as recommended in other NICE guidance. It is important that a holistic approach is taken to ensure that other conditions do not deteriorate.

Royal College of Physicians

Royal College of Physicians of Edinburgh

Royal College of General Practitioners

Royal College of Psychiatrists

Academy of Medical Royal Colleges

Faculty of Sport and Exercise Medicine

Faculty of Occupational Medicine

 

LBC Radio discussion today
(Still on going at 16.37)
Just had a plug from someone who 'teaches how to do graded exercise'. Claimed to be an ex-patient.

 

Still whinging, then.

 

Which raises the question "if the NHS isn't using GET, then what is the evidence that the use of this 'other' treatment is of any benefit ?

Edit to restore quotes

 

Apologies if already posted. Very interesting that the Science Media Center not only gave a range of opinions in their rapid response. But Prof Kevin McConway , a Trustee of the SMC gave a very long and 'detailed' quote supporting the process applied to the M.E Nice Guideline development. Also the negative quotes are limited to the few usual suspects. Are times a-Changin at the SMC?

[Edit to include link] https://www.sciencemediacentre.org/...deline-on-diagnosis-and-management-of-me-cfs/