NICE ME/CFS guideline - draft published for consultation - 10th November 2020

https://twitter.com/user/status/1326164517152305154

 

a response from AfME would be good.

 

The section on the level of care needed to support those with severe and very severe impairment, and in particular the nature and extent of sensory sensitivites, is very welcome, having been ignored by CG53. The guidelines make frequent reference to health care professionals "who have training and experience in ME/CFS". These either do not exist in many areas of the country - and, where they do exist, they are teams of psychologists and physiotherapists who themselves have very unhelpful beliefs as to how to manage our illness. Even those that are supposedly physician-led are so only for the initial diagnosis.

The detailed descriptions of how to support a patient to maintain independence, including the provision of aids and even home adaptations, are - as someone living in a very inaccessible home - dearly welcome.

I expect that there will be extensive pushback during the consultation period from many, if not all, of the existing NHS CFS clinics. The SMC's statement is, perhaps, a harbinger of things to come. One fear I have - a worst-case scenario - such clinics, especially those led by psychiatrists, may start to diagnose somatisation disorder, FND or undifferentiated somatoform disorder in order to avoid making a diagnosis of ME/CFS and therefore release them from their obligation to follow these recommendations.

I do not understand the over-emphasis throughout on the putative value of a "multidisciplinary team", although obviously occupational therapy and social care professionals have their place. A doctor who genuinely understands ME is worth far more than any NHS-CFS MDT.

 

Yes, I will write

 

surprise, PW 'expert'.

Looks like PEM is being replaced with PESE (post exertional symptom exacerbation)

page 49
page 51
https://www.nice.org.uk/guidance/GID-NG10091/documents/evidence-review-4

 

I imagine they are pretty pissed off that he would use a position he no longer has to claim expertise and in doing so undermine all the work he knows A4ME have done to distance themselves from such hogwash. Really scraping the barrel.

 

Fatigue:

p50
https://www.nice.org.uk/guidance/GID-NG10091/documents/evidence-review-4

 

I really hope this will be good for us but the usual suspects have always managed to destroy any official reports that would help us.

Remember Peter White got the last set of guidelines changed from recommending wheelchairs to be used if needed because they would just make patients believe they were physically ill.

 

memes already

https://twitter.com/user/status/1326185306471747584

 

Thank you so much to the people that helped make this happen. This is so many steps forward, I couldn't have dared hope for this (after all we've been through).

I'm so relieved by seeing Lightning Process mentioned as something that shouldn't be offered.

I read the 2007 guidelines to compare, and the new ones read to me as taking ME so much more seriously, with much more concern for patients' safety, and with a whole lot more understanding of what the patients struggles are.

 

I agree with what you’re saying. I have to admit I use noise and sound interchangeably - I always used to think of them as the same! When my mum is cleaning something in my room, I say “stop making noise!”. I think even the word noise could be used though, given, that we make clear that what we mean, is exposure to normal environmental levels of it.

Ie as you say, most people wouldn’t think rustling is an issue as it’s just a normal environmental sound. The noise that comes from hospital, even a busy one like the NHS - most people would think is just “normal”, certainly compared to something like a pub or club, it’s probably less noisy. But actually this “normal” level of environmental sound can be far too much to tolerate.

even “normal” conversation is often too much to tolerate.

That’s why I tried to be careful in the posts I wrote on the other threads to mention “exposure to normal levels of hospital noise”, when talking about hospital. I hope that adequately explains what I mean. (Although I think you are right, the word sound could be used in the guidelines more, but the normal environment levels is really important).

 

Treatment Guidance for ME Proposes Curbs on Graded Exercise Therapy

A login required to read the whole article

https://www.medscape.com/viewarticle/940671

 

NICE backtracks on graded exercise therapy and CBT in draft revision to CFS guidance

Link requires a login but I was able to access it with a google search of "chronic fatigue syndrome" and within last 24 hours.

https://www.bmj.com/content/371/bmj.m4356.full.print

 

What the BMJ is saying

 

Is it just me or is there no depth to Dr Mujtaba Husain's expert commentary! Reads like a job advert - no explanation about how this works, measures of success or failure, NOTHING. I find that quite odd really - anyone else?

I have an idea how some of these things he mentions might look in practice - but I could see how things could alternatively look very bad if taken in a different direction. Context is all really. He waffles on with few specifics - he supports GET - but is this what is actually delivered by the physiotherapists in his team? How does he justify this versus the principles of science and objective measures / objective outcomes in clinical trials (or lack of them). Or does he not really think critically about what he does - just follows guidelines / colleagues recommendations? Blundering on thinking he is great...... !

What model of CBT is being used and why? I suspect he could not answer that question.

It doesn't give me confidence that he has an understanding of what he does and how he goes about his work with ME patients!

 

A selection of points the Barts CF Service made during the development of the 2007 NICE Guidelines for CFS/ME, extracted by Tom Kindlon, can be found at this post on my old ME agenda site. Bart's responses to: disability aids and equipment; making information available on audio tape et al:

https://meagenda.wordpress.com/2007...g-the-nice-guidelines-for-cfs-me-tom-kindlon/

If IAPT were to get their November 2019 request approved, a Concept term for "Somatic symptom disorder (SSD)" would be added to the SNOMED CT UK Edition for availability for use in the new IAPT Data Set Version 2.0 and potentially added to the SNOMED CT International Edition.

IAPT leads wished to replace their previous data set term, "MUS - not otherwise specified" (a term they now consider inappropriate) with the term "Somatic symptom disorder" for their new IAPT Data Set Version 2.0 and associated literature, which was rolled out in September.

Since there is no ICD-10 code for SSD, a request was submitted last November for authoring a new SNOMED Concept code for addition to the UK Edition of SNOMED CT [1].

This request from IAPT leads was deferred by NHS Digital, in March 2020, for consideration for adding to the April 2020 release (and subsequently for the October 2020 release). The request was referred on to SNOMED International, in March 2020, for the consideration of their terminology leads. Its review status is currently unknown.

An interim November 2020 release of the UK Edition is scheduled for publication tomorrow, November 11. The next scheduled release of the SNOMED CT International Edition is January 31, 2021.


1 Spreadsheet: IAPT v2.0 Terminology Mapping Guidance Current version 3.3 Last updated: 17 July 2020

https://dxrevisionwatch.files.wordpress.com/2020/07/revised-iapt-3.3-mapping-ssd-for-october.png

[Edited to add additional text and a link to screenshot from IAPT spreadsheet]

 

The Science Bit by prof. Brian Hughes
Could this actually be happening?

Mark this day in your calendar. We could be observing the beginning of the end of a decades-long medical scandal.

 

I was in hospital a few years ago where the noise was so bad I literally felt like jumping out of the window (and it was probably high enough to be fatal if I had been able to). It consisted of various alarms, some going off completely unnecessarily, and I was not the only person to be disturbed by it, as there was a group of older ladies notifying the staff about it. It was horrendous. I was in isolation!