UK RCPCH: Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS) - Member briefing on new NICE guideline

Sly Saint · Nov 17, 2021

The RCPCH raised a number of issues in the consultation on the draft guideline (RCPCH’s response is on pages 742-775), including safeguarding of children and young people (CYP), practicalities of assessment and recommended therapies.

Whilst we acknowledge that NICE has made further revisions to the final guideline, the RCPCH is concerned that the provisions described for safeguarding may preclude the rapid identification of abuse and neglect of children and young people in some (hopefully rare) instances. Where children are thought to have severe or very severe ME/CFS resulting in withdrawal and school absence, or where manifestations of the disease are similar to those that typically arouse safeguarding concerns, more frequent face to face review (than the six-monthly suggested in the new guideline) should be considered to ensure the child or young person’s wellbeing.

It is essential for paediatricians to be consulted to exclude other causes of fatigue and malaise such as cancer or occult infection. It is clearly important that alternative treatable causes of fatigue should not be missed.

Finally, NICE has acknowledged the disparity in which the definition of Graded Exercise Therapy is understood. We anticipate that this will be fully discussed between clinicians and patients (and their parents or carers) in respect of previous, existing or proposed therapy as these important specialised services continue to be developed.

We hope this briefing, which contains our view on some of the new recommendations, will support paediatricians in taking the new guidance forward.
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https://www.rcpch.ac.uk/resources/me-cfs-nice-clinical-guideline-member-briefing

Solstice · Nov 17, 2021

Some of the stuff that could be construed as positive isn't because of the people that will likely be involved. Seen how parents of children with M.E. and the children themselves have been mistreated in the past this seems to leave the door wide open for more of that. Be careful, but carry on.

But maybe I'm misinterpreting.

adambeyoncelowe · Nov 17, 2021

Reading their briefing, it seems their complaints are minor. The GL already says you can consider reviews more frequently than six months, so that complaint seems churlish.

Their GET comment seems misleading. And could possibly get their members in trouble. If they aren't offering GET, they shouldn't call it GET (and arguably, whatever they're offering is unevidenced anyway).

In general, though, it doesn't seem to add much.

CRG · Nov 17, 2021

Sly Saint said: ↑

https://www.rcpch.ac.uk/resources/me-cfs-nice-clinical-guideline-member-briefing
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The RCPCH pre August 18 grumbles, parsed by the RCPCH's lawyers !

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UK RCPCH: Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS) - Member briefing on new NICE guideline

Sly Saint Senior Member (Voting Rights)

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UK RCPCH: Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS) - Member briefing on new NICE guideline

Sly Saint Senior Member (Voting Rights)

Solstice Senior Member (Voting Rights)

adambeyoncelowe Senior Member (Voting Rights)

CRG Senior Member (Voting Rights)

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