Barrister-Patient publishes the 'paused' NICE Guidelines Online

[Countrygirl]

https://valerieeliotsmith.com/2021/...ZEOxhanbQdGDeWlIF8DdjFVj5LE-Gc7ZcuYC5t9yuMuXo

Valerie Eliott-Smith, a barrister with ME posts the new 'paused' NICE guidelines for ME on her blog

https://valerieeliotsmith.com/2021/...ZEOxhanbQdGDeWlIF8DdjFVj5LE-Gc7ZcuYC5t9yuMuXo

Abuse of process & abuse of power: a NICE publication (with file download)

SEPTEMBER 13, 2021
tags: CFS/ME, ME, ME/CFS, Myalgic Encephalomyelitis, National Institute for Health and Care Excellence, NICE Guidelines

Disclosure: I have lived with the discrete illness myalgic encephalomyelitis (ME) since 1981. I have written extensively about the NICE process (amongst other topics) in relation to this illness. I am a barrister.
For the full background to this post see previous post here. Alternatively, there is also a summary for new readers at the end of this post. Please scroll down to access it.

NB. I work independently and I am not affiliated to any organisation or group in the ME community. For more information see About.
******************************
The current situation with the “paused” publication of the new NICE guideline for “ME/CFS”

On 17 August 2021, the National Institute for Health and Care Excellence (NICE) “paused” the publication of the new guideline for “ME/CFS”, 9 hours before it was due to be released. Many stakeholder groups and other parties had been given access to the guideline 13 days earlier, on 4 August. The document was to remain confidential until general release on 18 August.................................................

It cannot now be argued that NICE is acting in good faith or with any degree of independence.

*******************************

AS I’VE SAID BEFORE ON THIS BLOG: LIKE ALL PUBLIC BODIES, NICE HAS A WIDE DISCRETION IN HOW IT EXERCISES ITS STATUTORY FUNCTIONS. HOWEVER, RECENT EVENTS SHOW THAT IT HAS NOW GONE BEYOND WHAT IS REASONABLE OR JUSTIFIABLE.

NICE’S ACTIONS SINCE 27 AUGUST AMOUNT TO AN ATTEMPT TO STIFLE LEGITIMATE DEBATE BOTH INSIDE AND OUTSIDE THE INTERNATIONAL ME COMMUNITY.

KNOWLEDGE IS POWER; NICE’S ACTIONS IN WITHHOLDING INFORMATION NOW AMOUNT TO AN ABUSE OF PROCESS AND AN ABUSE OF ITS POWER.

****************************

The case for community publication

The new guideline does not become operative until it is published by NICE.

 

[BrightCandle]

I like that it contains sections (1.8) about doctors seeing them at their best, that accommodations in regards to timing of appointments and light/sound/smell are included in this. Having been discharged multiple times because I was unable to attend and they were unwilling to accommodate my condition in any way is abusive and I think calling out they are required to do this will help patients sue easier when they inevitably fail to do so.

I am not sure where they are getting these ME/CFS specialist teams from, all the CFS clinics are choke full of psychology and physiotherapy experts. This is referring to something that basically doesn't exist, if you are a lucky long hauler of covid then maybe you see one of these multi-discipline teams but even then most are still just CFS clinics with the same staff as always.

Concerned about 1.11.8 which is all around sending patients to pysiotherapy for progressing physical activity and for use in mobility or those that want to incorportate exercise. It comes right after a pacing section, seems oddly placed and worded and really still represents potentially harmful recommendations. But then straight away in 1.11.9 they don't advice people with ME/CFS to undertake exercise, except with ME/CFS specialists. It is really unhelpful to have this here, GET is no better than just being told to exercise in terms of outcomes and NICE showed they understood this with the prior guidelines. Seems to be patient driven, only when we want it, but really this shouldn't be in here at all. At least offering as a cure is out and graded exercise (incremental increases) is out, but exercise at a level that doesn't cause crashes or manages those crashes is still in here, not good.

POTS is in here. Pain management for Nueuropathic and headaches are also in here briefly.

Food management is just "NHS well balanced", no recognition this isn't appropriate. Infact they are trying to correct those who eat a restrictive diet.

There is at least home visits and phone/online consultations for those with severe disease. Also organising what is needed if a hospital trip is necessary, although in my experience the existing system doesn't work anyway, I told them what I needed and they couldn't accommodate me and so cancelled my appointment, so that is going to work well!

Nothing in here for the very severe and feeding tubes at all.

Still nothing on specific drugs or treatments. It would have been better than what exists but its also not great either some of these recommendations shouldn't be in here and some of them have potential for harm. Nothing that would actually help an ME/CFS sufferer. Mostly the referring to ME/CFS Speciailsits annoys the hell out of me, they purged the lot from the NHS when they made the CFS clinics, these teams just don't exist.

I am glad we get to see what could have been, but its not a life changer it would just reduce the widespread abuse a bit.

 

[Bronc]

I like that it contains sections (1.8) about doctors seeing them at their best, that accommodations in regards to timing of appointments and light/sound/smell are included in this. Having been discharged multiple times because I was unable to attend and they were unwilling to accommodate my condition in any way is abusive and I think calling out they are required to do this will help patients sue easier when they inevitably fail to do so.

I am not sure where they are getting these ME/CFS specialist teams from, all the CFS clinics are choke full of psychology and physiotherapy experts. This is referring to something that basically doesn't exist, if you are a lucky long hauler of covid then maybe you see one of these multi-discipline teams but even then most are still just CFS clinics with the same staff as always.

Concerned about 1.11.8 which is all around sending patients to pysiotherapy for progressing physical activity and for use in mobility or those that want to incorportate exercise. It comes right after a pacing section, seems oddly placed and worded and really still represents potentially harmful recommendations. But then straight away in 1.11.9 they don't advice people with ME/CFS to undertake exercise, except with ME/CFS specialists. It is really unhelpful to have this here, GET is no better than just being told to exercise in terms of outcomes and NICE showed they understood this with the prior guidelines. Seems to be patient driven, only when we want it, but really this shouldn't be in here at all. At least offering as a cure is out and graded exercise (incremental increases) is out, but exercise at a level that doesn't cause crashes or manages those crashes is still in here, not good.

POTS is in here. Pain management for Nueuropathic and headaches are also in here briefly.

Food management is just "NHS well balanced", no recognition this isn't appropriate. Infact they are trying to correct those who eat a restrictive diet.

There is at least home visits and phone/online consultations for those with severe disease. Also organising what is needed if a hospital trip is necessary, although in my experience the existing system doesn't work anyway, I told them what I needed and they couldn't accommodate me and so cancelled my appointment, so that is going to work well!

Nothing in here for the very severe and feeding tubes at all.

Still nothing on specific drugs or treatments. It would have been better than what exists but its also not great either some of these recommendations shouldn't be in here and some of them have potential for harm. Nothing that would actually help an ME/CFS sufferer. Mostly the referring to ME/CFS Speciailsits annoys the hell out of me, they purged the lot from the NHS when they made the CFS clinics, these teams just don't exist.

I am glad we get to see what could have been, but its not a life changer it would just reduce the widespread abuse a bit.

Thank you for your comment. It is very helpful to hear variety of perspectives on the unpublished guideline. I am grateful to the pwME who worked so hard on this set of guidelines.

On the one hand there is a commitment to the education of health professionals who work with ME patients. Why no commitment to put ME on the curriculum of trainee doctors? My daughters friend completed her training last year and she told us there was no mention of ME in 7 years of training.

There is recognition of the complex, debilitating nature of the illness which might help with some of the stigma which many health professionals/media still have towards pwME. You never know it might even help with people making claims for PIP/ESA but then again the DWP breaks the law with impunity so maybe I'm being hopeful there.

I am disappointed with the recommendations for research. Several of the research recommendations have this stipulation about how 'cost effective' they are which shouldn't be there. More importantly, why do the research recommendations not address key issues? Why is there is no recommendation for research into post exertion malaise or immune dysfunction?

Currently, I have a supportive GP but when I go to see her she gets embarrassed as there is little or nothing she can do for me except be empathetic. Sadly, I don't see anything in these guidelines that will enable her to improve the quality of medical care she currently offers me.

 

[BrightCandle]

Thank you for your comment. It is very helpful to hear variety of perspectives on the unpublished guideline. I am grateful to the pwME who worked so hard on this set of guidelines.

On the one hand there is a commitment to the education of health professionals who work with ME patients. Why no commitment to put ME on the curriculum of trainee doctors? My daughters friend completed her training last year and she told us there was no mention of ME in 7 years of training.

There is recognition of the complex, debilitating nature of the illness which might help with some of the stigma which many health professionals/media still have towards pwME. You never know it might even help with people making claims for PIP/ESA but then again the DWP breaks the law with impunity so maybe I'm being hopeful there.

I am disappointed with the recommendations for research. Several of the research recommendations have this stipulation about how 'cost effective' they are which shouldn't be there. More importantly, why do the research recommendations not address key issues? Why is there is no recommendation for research into post exertion malaise or immune dysfunction?

Currently, I have a supportive GP but when I go to see her she gets embarrassed as there is little or nothing she can do for me except be empathetic. Sadly, I don't see anything in these guidelines that will enable her to improve the quality of medical care she currently offers me.

The research section is absolutely dreadful really and there is zero recognition of the research efforts already under way along with the findings such as immune issues, or gut microbiome problems or blood flow reductions or mitochondrial energy. Their research suggestions aren't looking for a cure or really root cause analysis, which given they are a good decade behind already is absurd. It is actually pretty bad from that perspective, I think worse than the prior draft on this and treatment front. Clearly the CFS clinics and vested interests have done serious damage to it already since there is less acknowledgement of the mistreatment of patients and a little wiggle room for them to still exist. A lot of the prior suggestions on future progress are gone.

There is nothing in here really now for the future, it just rules out GET and CBT for cures, it ignores the international environment and what it has already determined about the disease. Missing large lists of symptoms and co-morbities as well. It is not a good document, it has many flaws that many raised last time we saw a draft and in some ways its got worse. I agree about the rollout too, it really doesn't do much about fixing the widespread lack of information given to doctors and they have a lot of prejudice to undo due to their appalling prior guidelines.

Not that it matters, there is not going to be a set of guidelines released by NICE, it is clear the private CFS clinics pull the strings and its not interested in what is best for the patients. Time to defund the NHS, its corrupt to its very core and its never going to help ME patients, the diagnosis and treatment for this is definitely coming from another country.

 

[Inara]

Kudos to @Valerie Eliot Smith for her courage, and thank you @Countrygirl for posting a blog update.