NEW NICE GUIDELINES PUBLISHED 29th October 2021

Countrygirl

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https://www.nice.org.uk/guidance/indevelopment/gid-ng10091

Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management

In development [GID-NG10091]Expected publication date: 29 October 2021
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August 2021: NICE pauses publication of updated guideline on diagnosis and management of ME/CFS


This guidance will fully update the following:

StatusIn progressDeveloped AsCGID number869
Provisional Schedule
Expected publication29 October 2021
Project Team
DeveloperNational Guideline Centre
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hapl808

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Seems relatively reasonable at a quick glance. Pulled these from two different sections.

The committee wanted to highlight that cognitive behavioural therapy (CBT) has sometimes been assumed to be a cure for ME/CFS. However, it should only be offered to support people who live with ME/CFS to manage their symptoms, improve their functioning and reduce the distress associated with having a chronic illness.


In this guideline, graded exercise therapy is defined as first establishing an individual's baseline of achievable exercise or physical activity, then making fixed incremental increases in the time spent being physically active. This definition of graded exercise therapy reflects the descriptions given in the evidence that was reviewed, and it is this approach that the guideline says should not be undertaken.

An individualised approach that should be taken for people with ME/CFS who choose to undertake a physical activity or exercise programme is described in recommendations 1.11.10 to 1.11.13.
 
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Second star to the right ...
I did my best, but just don't have the focus or cog right now to parse thru all of it ...

Two things I noted: no suggestion that help will be forthcoming for those who need to apply for disability .... no outright rejection of GET, just an updated softer definition. Continued support, tho subtle, for the " ... it's a head-case ...." crowd thru the ongoing support, recommendation and promotion of CBT, which has limited benefits the more severely affected a patient is ...

But on a happier note, at least they are definitively rejecting any suggestion that the Lightning Process or anything like it is a viable 'treatment'. Not that that's news to most of us ... but apparently it had to be clarified for healthcare professionals ...

Will have to try to absorb it bit by bit, but in the words of that master of the apt quip:

The report, by its very length, defends itself firmly
against the risk of being read -- Churchill
 

keepswimming

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BBC News item here.

I didn't like the quotes from the two doctors at the end o_O

"I worry that this guideline seems to suggest that patients need to learn to live with CFS/ME, rather than be helped to recover from it."

I don't know where to start with that one. Learning to live within our limits does not mean we don't want to recover... It means we want to give ourselves the best chance of recovering...
 
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Yeah, see my comments above.

Generally, it's about what I expected .... equivocation, careful rebranding, artful rewording, but there are some interesting changes and modest improvements that could help patients manage their care, and their Drs facile dismissals, more easily.

But then. I just gave it a quick read, cause today is not .... focus-y. Or thought-y ....
 

hapl808

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Sorry to be a party pooper but I find there is little to 'celebrate' in this new guideline. It basically takes us back to 2007 before the GET/CBT era. There are so many issues/omissions in this guideline which I have commented on in a different thread.
Not a party pooper and I don't disagree. I guess as someone where GET and overly aggressive physical exams dropped me from moderate and functioning to severe and completely non-functioning, this admittedly minor 'improvement' would have improved my quality of life immensely. Doctors all told me to push through.

Granted I'm in the US, so they'll just continue to tell us to push through or offer antidepressants - but at least we'll pay $1k for the privilege of that Level 5 Consult (plus facility fees), and feel lucky when we only owe a few hundred because insurance 'covers' the rest.
 

Countrygirl

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The Royal Colleges revolt against the NICE guidelines:

https://www.rcplondon.ac.uk/news/me...dDL0Knf_DMbfJze4iIuj0VQuYZtNkr88O_8Q90_IzFW0Y

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
 

wabi-sabi

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Why do I have the awful, haunting feeling that very little will have changed, it'll just be dressed up in even vaguer language with more quibbles and subjunctives ....
Seems that's exactly what happened. Not sure I really feel better about this. Trying to redefine GET? Really, how is this not just gaslighting?
 

Pyrrhus

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Can we do an RCT where we see if CBT will help them? I will volunteer to learn to do CBT on people and try to change their false beliefs.
I believe some prominent ME advocates have already tried that.
Hard to find suitable controls, though.

Unfortunately, they seem to now be suffering from Pervasive Refusal Syndrome.
(A diagnosis that only they seem to recognize, albeit in others!)
 
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Unfortunately, they seem to now be suffering from Pervasive Refusal Syndrome.
(A diagnosis that only they seem to recognize, albeit in others!)
Do they ever speak to sick ME people? Actually ask them what their symptoms are?


I think somewhere in all these comments the Royal ones make, there is a bit more room for being helped on comorbid conditions, which we seem to have swirls of. Those are from a mistaken belief as well?

If I could over come personal inertia, and get myself out of my apartment to run a few errands which involves physical/mental activity that is taxing, well I"d then come back and its PEM For three days.

So often I decide to NOT do the errands.