NICE Clinical Knowledge Summaries: Tiredness/Fatigue in adults (includes CFS).

Caroline Struthers said:
I have now heard back from Fiona Watt who has updated me on "data-gate". The data is no longer available via CSDR portal, which explains why I couldn't find it. It has been transferred - see letter below and attached

Dear Caroline,

Thank you for your email of 19th July regarding the PACE trial. I agree with you that the landscape has changed since my letter to the Times back in 2018, not least because we have funded new research into the potential link between genetics and ME/CFS (DecodeME) and because of emerging concerns about Long Covid.

You asked specifically why the anonymised data from the PACE trial had not been included in the Clinical Study Data Request (CSDR) portal. In fact, The PACE trial data has been available to request since November 2019, firstly via the CSDR web portal during a pilot which ran until March 2021. Following this pilot, the dataset listing was transferred to the Vivli portal where it is now available on request via the Vivli independent Review Panel. MRC has paid for the listing to be permanently accessible on Vivli. The review panel is independent of the trial investigators, sponsor and funders. Details of how to apply for access to the dataset can be found here whilst the dataset listing can be found here. Please note that MRC was not involved in the anonymization process, which was undertaken by the investigators.

I do hope that this update is helpful.


With best wishes,
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Will wait til I hear from Matt Westmore and the HRA before answering. I now regret mentioning the data issue as it allowed FW to focus on that, take credit for the changing the landscape, and deflect attention the main point of my letter. Ah well. I can be more specific about that next time.
 
Following on from my post here: https://www.s4me.info/threads/publi...t-of-20-october-2021.22867/page-8#post-385019

Apols if anyone else has already addressed this.

The Clinical Knowledge Summary (CKS) on Tiredness/Fatigue in Adults has now been updated, but maintains its complete erasure of any mention of ME. It refers only to CFS.

Although it references the new guideline NG206, it also references Fukuda (1994).

The management summary is here: https://cks.nice.org.uk/topics/tiredness-fatigue-in-adults/management/management/
 
Sly Saint said:
links to AfME https://www.actionforme.org.uk/uploads/newly-diagnosed-booklet-dec-15.pdf

from 2015 which is also out of date and ends with
"
Action for M.E. is enormously grateful to everyone who has contributed to this
booklet, including:
•
Dr Alastair Miller, Chair, the British Association for CFS/M.E"
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It could be worse - at least it makes no mention of GET or CBT.

Looks like @Action for M.E. have now removed the booklet from their website (presumably pending update) - but not the url path to the pdf.

[I've emailed them]
 
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Lucibee said:
The Clinical Knowledge Summary (CKS) on Tiredness/Fatigue in Adults has now been updated, but maintains its complete erasure of any mention of ME. It refers only to CFS.
Click to expand...
Seems like they are trying to undermine the NICE 'pattern of symptoms' of ME/CFS that the new guidelines have established, specifically the need for PEM to be present. They continue to fixate on the single symptom of chronic fatigue.

Then they want to ensure the specialist ME/CFS clinics continue to have referrals from patients with unexplained 'tiredness/fatigue' so that nothing changes for PWME with PEM, who would likely form a minority of the referrals (because the clinics still won't learn what is different about ME compared to idiopathic chronic fatigue, or fatigue that is a result of other chronic illnesses). This will mean that supposedly specialist ME/CFS clinics won't have the necessary capacity to do the extra work resulting from the new NICE guidelines, such as home visits for severe patients, drawing up detailed care and support plans, longer term reviews etc. Funding will be spread thinly amongst all 'chronically fatigued' patients with the most severe and the long term ME/CFS patients being the ones to lose out (as has historically been the case).

This decision for this is based on the clinical experience of the previous reviewers of the CKS for 'tiredness/fatigue', over-riding the significance of the changes in the new NICE ME/CFS guideline, that took 4 years to develop and was based on an independent review of the scientific and patient evidence. This seems so underhand, are NICE not able to show a strong hand in this?
 
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Lucibee said:
The Clinical Knowledge Summary (CKS) on Tiredness/Fatigue in Adults has now been updated, but maintains its complete erasure of any mention of ME. It refers only to CFS.

Although it references the new guideline NG206, it also references Fukuda (1994).

The management summary is here: https://cks.nice.org.uk/topics/tiredness-fatigue-in-adults/management/management/
Click to expand...

people can leave feedback without having to give their name or register.
https://www.nice.org.uk/leave-feedback
 
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Lucibee said:
The Clinical Knowledge Summary (CKS) on Tiredness/Fatigue in Adults has now been updated, but maintains its complete erasure of any mention of ME. It refers only to CFS.
Click to expand...
It also links to the awful recommendations of the new NICE Chronic Pain guidelines, not the NICE guidelines on Neuropathic Pain and the guidelines on headaches for over 12s that the new NICE ME/CFS guidelines link to! So this has clearly been written by some of the stakeholders who disagreed with the new NICE ME/CFS guidelines. There is some serious underhand manipulation of wording and links, which show a refusal to implement the new NICE recommendations for ME/CFS going on.

  • Other supportive measures for people with CFS include
    • Referral to a specialist physiotherapist or occupational therapist if the person has problems with mobility or reduced physical activity, or feels ready to progress with increased physical activity or would like to incorporate physical activity into their management
    • Referral to secondary care specialists for people who experience orthostatic intolerance
    • Pain management. See the CKS topic on Chronic pain for more information
    • Dietary advice, specifically for the person to maintain a healthy diet and fluid intake. Referral to a specialist dietician if the person is losing weight and is at risk of malnutrition or is gaining weight or is following a restrictive diet.
    • Cognitive behavioural therapy. This may be appropriate for some people with CFS specifically those who would find it useful to help manage their symptoms, improve their functioning and reduce the stress of living with a long-term illness.
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If you follow the links to the CKS topic on Chronic pain, you can see which guidelines they are basing the pain recommendations for CFS on.
 
Lucibee said:
It could be worse - at least it makes no mention of GET or CBT.

Looks like @Action for M.E. have now removed the booklet from their website (presumably pending update) - but not the url path to the pdf.

[I've emailed them]
Click to expand...

https://www.actionforme.org.uk/get-information/what-is-me/what-does-me-feel-like/

Oops. They've now restored the link. Sorry. That wasn't my intention. I hoped that they would at least indicate that the new guidance said something different. They said they would update NICE (about the CKS pages and their link) once they have updated the booklet, but in the meantime they felt that it might be useful to leave it there. Ah well. Let's hope they do it soon.
 
Merged thread

Not sure if anyone picked up on this document before (re compliance with new guidelines).

The National Institute for Health and Care Excellence (NICE) recommends a diagnosis of chronic fatigue syndrome (CFS) should be suspected in adults, if the person has persistent fatigue for a minimum of 6 weeks or longer, it has significantly impaired their ability to engage in their usual daily activities, cannot be explained by another illness and has all of the following features:

  • Debilitating fatigue which is worsened by activity, is not caused by excessive cognitive, physical, emotional, or social exertion, and is not significantly relieved by rest.
  • Post-exertional malaise after activity in which the worsening of symptoms:
    • is often delayed in onset by hours or days,
    • is disproportionate to the activity has a prolonged recovery time that may last hours, days, weeks or longer.
  • Unrefreshing sleep or sleep disturbance (or both), which may include:
    • Feeling exhausted, feeling flu-like and stiff on waking.
    • Broken or shallow sleep, altered sleep pattern or hypersomnia.
  • Cognitive difficulties which may include problems finding words or numbers, difficulty in speaking, slowed responsiveness, short-term memory problems, and difficulty concentrating or multi-tasking.
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Basis for recommendation


The recommendations on diagnosis of chronic fatigue syndrome (CFS) are based on the National Institute for Health and Care Excellence (NICE) clinical guideline Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management [NG206] [NICE, 2021].
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(why are they still diagnosing 'CFS'?)
Diagnosis of CFS | Diagnosis | Tiredness/fatigue in adults | CKS | NICE
 
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