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

[Tom Kindlon]

 

[Sly Saint]

Report in Guardian: https://www.theguardian.com/society...me-exercise-therapy-loses-nice-recommendation :

“I am aware that there has been controversy over these approaches but there has never been any evidence of harm and they remain the only evidence-based treatment approach in CFS,” said Dr Alastair Miller, deputy medical director at the Joint Royal Colleges of Physicians Training Board and former principal medical adviser for Action for ME.

a response from AfME would be good.

 

[Nightsong]

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.

 

[Caroline Struthers]

Report in Guardian: https://www.theguardian.com/society...me-exercise-therapy-loses-nice-recommendation :


I hope someone might be persuaded to write a letter to the Editor about harms (ie evidence from surveys and the lack of a system for reporting harms). Unfortunately, it’s too late to get a letter published in tomorrow’s paper but still a chance for Thursday. (I’ve already sent a letter making a different point.)

If anyone does write, please remember to keep it as short and concise as possible (certainly no more than 250 words) to maximise chance of publication. Send email to: guardian.letters@theguardian.com and remember to include full name, address and tel no.

Yes, I will write

 

[Sly Saint]

PW:
“It is also remarkable that the committee use the symptom of post-exertional fatigue as a reason for not providing GET"

surely they (NICE) used PEM ie post exertional malaise not fatigue?

surprise, PW 'expert'.

Suspecting ME/CFS and making a diagnosis of ME/CFS – description of 6 recommended criteria and committee discussion 7
The signs and symptoms common to most of the criteria are listed below, the criteria that do 8 not include that sign or symptom is in the brackets: 9
 Post exertional malaise (not included in the Oxford Criteria) and other severe and 10 prolonged fatigue unexplained by activity 11
 Pain, specifically joint pain (not included in the IOM) and headache/eye pain (not 12 included in the Oxford Criteria or IOM) 13
 Cognitive impairment, specifically memory problems (not included in the Oxford 14 Criteria or IOM) and brain fog (not included in the Oxford Criteria) 15
 Unrefreshing sleep (not included in the Oxford Criteria or the CDC 1998) 16
 Tender lymph nodes (not included the Oxford Criteria or IOM)

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

Criteria agreed by the committee

On this basis the committee agreed the criteria and recommended that ME/CFS should be suspected in people with these 4 key features:

1. Debilitating fatiguability that is not the result of ongoing excessive physical,
emotional or mental exertion, and is not substantially alleviated by rest.
2. Post-exertional symptom exacerbation, which is disproportionate to the amount of exertion (cognitive, physical, emotional and, social), and can be delayed
3. Unrefreshing sleep
4. Cognitive difficulties

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

 

[Gecko]

a response from AfME would be good.

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.

 

[Sly Saint]

Fatigue:

The committee discussed the different types of fatigue identified in the ME/CFS literature and 28 their own experiences. There was agreement that there is a marked difference between 29 ‘normal tiredness’ and the profound fatigue caused by ME/CFS and that the term fatigue 30 does not reflect the actual symptoms that people with ME/CFS experience. Several 31 alternative terms were suggested by the committee members to capture this including; 32 fatiguability, debilitating fatigue, post-exertional exhaustion; post-exertional debility; post-33 exertional weakness.

The committee decided upon ‘debilitating fatiguability’ with a short 34 explanation in the recommendation clarifying that is not the result of ongoing excessive 35 physical, emotional or mental exertion, and is not substantially alleviated by rest. A further 36 explanation of fatiguability has been added to the terms used in the guideline to provide 37 further support for clinicians.

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

 

[Trish]

Don't forget if you want your comments on particular sections of the guideline to be part of the discussion of the S4ME submission, put them on the individual thread for that section. They are likely to get lost on this general thread.

The threads for the sections are all linked in the second post of this thread.
https://www.s4me.info/threads/nice-...ltation-10th-november-2020.17687/#post-300145

If you want your post moved to one of these threads, use the contact moderators button on your post to request it.

 

[Mithriel]

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.

 

[Kalliope]

memes already

 

[rainy]

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.

 

[lunarainbows]

I'm sorry i dont know where this quote comes from in the GL (taken from Sly Saint's post above (#109) on the section that seems to be describing other important symptoms, & i not well enough to search. Perhaps someone could move this post to the relevant section for me.



It is not 'noise' it is SOUND. This may seem like a small point in comparison to tohers but i think it's important. It is a source of ongoing frustration for those of us with significant sensory sensitivity where sound is the worst one, that people perceive it as a problem with 'noise'. 'Noise' is something that is loud & intrusive. In order for the list to describe the other sensory sensitivities in effective comparison it would say including to very bright light, strong or rough pressure touching, and malodourous stink.

It needs to say sound.
here is a common type of conversation... with me barely managing to get the words out

"ouch pls quiet you're hurting me"
"but i'm not making any noise"
"you rustling the paper as you read it"
"for goodness sake it's not loud".

People understand 'the light hurts my eyes' they do not understand 'you rustling that crisp packet feels like it's caving my head in'.

The times i've said "pls be quiet" oly to be greeted with " we're not being loud", or gone in a shop "it's quiet in here, the music is only on quietly, or you can only hear quiet voices in the background.

The issue is whetehr whatever it is is AUDIBLE. If it's audible it's a problem, it doesnt have to be noisy.

It drives me mental that nearly every description i read of ME/CFS it will say 'sensitivity to light and noise', it's not sensitivity to noise, it doesnt have to be loud or intrusive to a healthy person, it's sound.

On hospital wards - relative says 'please situate her away from the nurses station because she cant cope with a lot of noise'.... 'there wont be a lot of noise, the radio is only on quietly'. Thence proceeds a cacophony of people murmuring quietly, phones ringing, bleeping, radio on low etc etc bringing on a massive crash, because even my relative cant grasp the problem.

ITS NOT NOISE ITS SOUND!

Sorry to go on about it, it's particularly big in my life atm & people reading that the problem is 'noise' is making it more difficult to be understood & to get what i need. And it always has done.

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).

 

[John Mac]

Treatment Guidance for ME Proposes Curbs on Graded Exercise Therapy

A login required to read the whole article

A controversial type of exercise regime for people with chronic fatigue syndrome should no longer be offered routinely as a treatment in England and Wales, the National Institute for Health and Care Excellence (NICE) said.

An updated draft guideline accepted that programmes based on fixed incremental increases in activity or exercise could harm some people with myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS).

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

 

[John Mac]

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

Graded exercise therapy (GET) should no longer be offered for the treatment of chronic fatigue syndrome (CFS, also known as myalgic encephalomyelitis), the National Institute for Care and Health Excellence (NICE) says in draft guidance.1 Instead patients should be encouraged to remain within their “energy envelope” so as not to worsen their symptoms, it advises.

Likewise, cognitive behavioural therapy (CBT) should no longer be offered as a treatment, NICE adds, although it can be offered as a psychological therapy that aims to help patients to manage their symptoms.

The revisions have been based not only on published evidence but also on patient reports that the treatments did not benefit them, and that in some cases GET caused harm.

In July, NICE cautioned against the use of GET for patients recovering from covid-19 who were experiencing post-viral fatigue, saying that its current advice on managing chronic fatigue may not be appropriate for this group of patients and hinting that its advice for other groups might be out of date.2

Hopes were raised among groups representing patients with CFS that NICE’s review of its 2007 recommendations3 might take account of multiple reports of harms associated with GET from patients. The long awaited draft update recognises that CFS is a complex, multi-system, chronic medical condition for which there is no “one size fits all” approach because an intervention that may benefit some could harm others. It stresses the need for a tailored, individualised approach based on establishing a partnership with the patient that allows joint decision making and informed choice.

The draft guidance says that patients should remain in their “energy envelope” when undertaking activity of any kind, emphasising that “each person has a different and fluctuating energy limit, and they are the best judge of their own limits.”

Specifically, because of the harms reported by patients and the guideline committee’s own experiences, the guideline says that GET should not be offered. Any physical activity programme should establish the physical activity capability level that does not worsen symptoms, be overseen by a physiotherapist or occupational therapist with expertise in CFS, and reviewed regularly, it says. The guideline also recommends reducing the time that a patient needs to have persistent symptoms before a diagnosis can be confirmed from four to three months.

Paul Chrisp, director of the Centre for Guidelines at NICE, said, “Controversy over the use of GET and CBT has served to alienate many people with CFS and in some cases undermine the confidence of those caring for them.

“The recommendations in this draft guideline have been developed by an independent committee that was guided not just by the clinical evidence, but also by the experience and testimony of people with CFS. The result is a guideline that will provide much needed clarity, set new standards for health professionals, and ensure that people with CFS have access to the right care and support.”

Some doctors were disappointed that GET and CBT would no longer be recommended by NICE.

Alastair Miller, deputy medical director at the Joint Royal Colleges of Physicians Training Board, said that while he was aware of the controversy over GET and CBT, many of his patients had benefited from them. “There has never been any evidence of harm and they remain the only evidence based treatment approach in CFS. It’s disappointing that NICE has chosen to exclude them from the updated guidelines,” he said.

Peter White, emeritus professor of psychological medicine, Queen Mary University of London, said, “NICE is usually commended for being led by the science. It is therefore a surprise that this guideline proscribes or qualifies treatments for CFS for which there is the best evidence of efficacy, namely GET and CBT.

“It is also remarkable that the committee use the symptom of post-exertional fatigue as a reason for not providing GET, when the largest ever trial of GET showed that it significantly reduced this symptom more than staying within one’s energy envelope.”

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

 

[Hoopoe]

What the BMJ is saying

Graded exercise therapy (GET) should no longer be offered for the treatment of chronic fatigue syndrome (CFS, also known as myalgic encephalomyelitis), the National Institute for Care and Health Excellence (NICE) says in draft guidance.1 Instead patients should be encouraged to remain within their “energy envelope” so as not to worsen their symptoms, it advises.

Likewise, cognitive behavioural therapy (CBT) should no longer be offered as a treatment, NICE adds, although it can be offered as a psychological therapy that aims to help patients to manage their symptoms.

The revisions have been based not only on published evidence but also on patient reports that the treatments did not benefit them, and that in some cases GET caused harm.

In July, NICE cautioned against the use of GET for patients recovering from covid-19 who were experiencing post-viral fatigue, saying that its current advice on managing chronic fatigue may not be appropriate for this group of patients and hinting that its advice for other groups might be out of date.2

Hopes were raised among groups representing patients with CFS that NICE’s review of its 2007 recommendations3 might take account of multiple reports of harms associated with GET from patients. The long awaited draft update recognises that CFS is a complex, multi-system, chronic medical condition for which there is no “one size fits all” approach because an intervention that may benefit some could harm others. It stresses the need for a tailored, individualised approach based on establishing a partnership with the patient that allows joint decision making and informed choice.

The draft guidance says that patients should remain in their “energy envelope” when undertaking activity of any kind, emphasising that “each person has a different and fluctuating energy limit, and they are the best judge of their own limits.”

Specifically, because of the harms reported by patients and the guideline committee’s own experiences, the guideline says that GET should not be offered. Any physical activity programme should establish the physical activity capability level that does not worsen symptoms, be overseen by a physiotherapist or occupational therapist with expertise in CFS, and reviewed regularly, it says. The guideline also recommends reducing the time that a patient needs to have persistent symptoms before a diagnosis can be confirmed from four to three months.

Paul Chrisp, director of the Centre for Guidelines at NICE, said, “Controversy over the use of GET and CBT has served to alienate many people with CFS and in some cases undermine the confidence of those caring for them.

“The recommendations in this draft guideline have been developed by an independent committee that was guided not just by the clinical evidence, but also by the experience and testimony of people with CFS. The result is a guideline that will provide much needed clarity, set new standards for health professionals, and ensure that people with CFS have access to the right care and support.”

Some doctors were disappointed that GET and CBT would no longer be recommended by NICE.

Alastair Miller, deputy medical director at the Joint Royal Colleges of Physicians Training Board, said that while he was aware of the controversy over GET and CBT, many of his patients had benefited from them. “There has never been any evidence of harm and they remain the only evidence based treatment approach in CFS. It’s disappointing that NICE has chosen to exclude them from the updated guidelines,” he said.

Peter White, emeritus professor of psychological medicine, Queen Mary University of London, said, “NICE is usually commended for being led by the science. It is therefore a surprise that this guideline proscribes or qualifies treatments for CFS for which there is the best evidence of efficacy, namely GET and CBT.

“It is also remarkable that the committee use the symptom of post-exertional fatigue as a reason for not providing GET, when the largest ever trial of GET showed that it significantly reduced this symptom more than staying within one’s energy envelope.”

References

1. National Institute for Health and Care Excellence. Guideline: myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management. Draft for consultation, November 2020. www.nice.org.uk/guidance/indevelopment/gid-ng10091/documents.
2. 1. Torjesen I
   . NICE advises against using graded exercise therapy for patients recovering from covid-19. BMJ2020;370:m2912. doi:10.1136/bmj.m2912 pmid:32694164
3. National Institute for Health and Care Excellence. Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management. Clinical guideline [CG53]. 22 Aug 2007. www.nice.org.uk/Guidance/CG53.

 

[Joan Crawford]

https://www.nice.org.uk/guidance/GID-NG10091/documents/supporting-documentation-3

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!

 

[Dx Revision Watch]

...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.

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/

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.

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]

 

[Kalliope]

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.

 

[NelliePledge]

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!

Shoddy effort. Hopefully he will read the whole document with Jonathan Edwards and Nina Muirhead’s thorough contributions and actually learn something about ME.

 

[MeSci]

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).

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!