Publication of the NICE ME/CFS guideline after the pause (comment starting from the announcement of 20 October 2021)

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Lucibee said:
But they've released it nonetheless, and no-one seems to have told them to take it down... (looks like it came from WAMES).
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As @Lucibee says the Pulse article referring to the Guidelines as released in response to an FOI request links to what looks like a pdf of the still embargoed 4th of August final draft, shared by NICE to all steak holders signing a confidentiality agreement. It is stored as a pdf on an ME patient group’s website, and seems to be identical to the final draft leaked on an individual’s blog on the 13th of September.

I assume if NICE had released a copy in response to an FOI request they would have released the more recent version that was shared with attendees of the roundtable event.

However I haven’t yet found any indication on the patient group site explaining the status of this pdf. This group is a steak holder, but was not invited to the round table event.
 
Jonathan Edwards said:
At the round table the main concern of those worried about removing 'curative CBT' was that a too negative view of CBT was being given, reducing hope That was countered by a committee representative and others indicating that patients do not want false hope. The discussion did not progress further.
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Yes, I strongly agree that it is important not to give patients false hope – not only because it is psychologically harmful in the long-term to patients, but also because it risks perpetuating the myth in the minds of services providers and research funders that some sort of magical individualised CBT is an effective treatment or cure. I would despair if the whole machinery of the current CFS services just morphed into the same people wasting similar resources on some other type of CBT. In order to make progress in service provision and research we need everybody to acknowledge that there are currently no proven effective treatments.

Having said that, I also think it’s important that people with post-viral fatigue are not given false despair. We know that most people with persistent symptoms following infection are likely to recover naturally within 2 years, and it would be harmful if those patients were wrongly convinced that they had an incurable life-long illness. I’m not sure that close observation by experienced physicians could not accurately differentiate most cases of naturally self-limiting PVFS from ME/CFS in the early stages of illness, but even if that were possible (and I’m not saying it is) such knowledge does not yet appear to have been acquired or published.

Until such differentiation can be accurately made, either by observation or diagnostic tests, patients should simply be told the truth about what is known and what is not, and given sensible advice on management – which in my view does not require any type of CBT. If and when it becomes apparent that the patient probably has ME/CFS from which they are unlikely to recover naturally they should be offered appropriate emotional and practical support to deal with the consequences.
 
Peter Trewhitt said:
As @Lucibee says the Pulse article referring to the Guidelines as released in response to an FOI request links to what looks like a pdf of the still embargoed 4th of August final draft, shared by NICE to all steak holders signing a confidentiality agreement. It is stored as a pdf on an ME patient group’s website, and seems to be identical to the final draft leaked on an individual’s blog on the 13th of September.

I assume if NICE had released a copy in response to an FOI request they would have released the more recent version that was shared with attendees of the roundtable event.

However I haven’t yet found any indication on the patient group site explaining the status of this pdf.
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The article doesn't say that the guidelines were released under FOI. It says the *briefing* was released!
NICE’s draft briefing on the guidelines to the Department of Health and Social Care, which was due to be published on 18 August, has recently been released under the freedom of information (FOI) act.
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Someone's made a booboo. Pulse have inadvertently published the guidance!
 
@Arvo

I think re CBT; the whole issue of 'what type' it is could have been avoided if 'self-help therapy'or 'counselling' were used ( I vaguely remember a comment about this being made in the ICC criteria).
Unfortunately, most NHS services only now offer CBT for any condition, or at least that's what they call it.
 
Lucibee said:
The article doesn't say that the guidelines were released under FOI. It says the *briefing* was released!

Someone's made a booboo. Pulse have inadvertently published the guidance!
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Looks like WAMES has uploaded a PDF to its site's files area (which if its a WordPress platform makes the file publicly accessible - if you have the file path for an individual file) and Pulse has linked to the wrong document.
 
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Opposing MEGA point out on their Facebook page that the Bedfordshire Chronic Fatigue Service appear to already be seeking to subvert the new NICE guidelines by offering CBT and GAM (graded activity management) as treatments.

What do we offer?

Bedfordshire Chronic Fatigue Service provides multi-disciplinary assessment, diagnosis and treatment for people living in Bedfordshire with medically unexplained fatigue as their main symptom. For people registered with Luton GPs, referrals can only be accepted once funding has been agreed.

What do we do?

We help clients to understand and manage their symptoms so that they can have a better quality of life and engage in activities which are most meaningful to them. For those who do not receive a diagnosis of chronic fatigue syndrome, the team will we offer advice and signpost to more appropriate services. This service offers NICE recommended Cognitive Behaviour Therapy (CBT) and Graded Activity Management (GAM).

See https://www.elft.nhs.uk/service/419...DgOqDNY60hW7TBAVnjULXT3Yn3JqTBs4SZ9HkJo-y8A9I
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Obviously it needs clarifying if they include ME/CFS within ‘people living with … … … medically unexplained fatigue as their main symptom’ [added - though the confusing sentence about referring people not diagnosed with CFS to other services implies they do.]

This also highlights the need to ensure that NICE updates any other guidance, such as those that more generally relate to fatigue, are updated in line with the publication of the new ME/CFS guidelines publication.
 
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Bedfordshire Chronic Fatigue Service are the people we struggled to get any info from a few months ago, requiring a few multidisciplinary team meetings, over weeks, just for them to release any information at all on what services they offered.

They do not do anything useful for anyone with ME - nothing.

They are a 'fatigue' service only - not interested in any issues that pwME have.
 
Jonathan Edwards said:
At the round table the main concern of those worried about removing 'curative CBT' was that a too negative view of CBT was being given, reducing hope That was countered by a committee representative and others indicating that patients do not want false hope. The discussion did not progress further.
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Re: the concern that removing "curative" CBT may make people less likely to use the services (as though this were a problem) - I think I saw this raised earlier as something that came up? - I thought this whole line of thinking was bizarre. I don't think I was able to write a comment at the time. If you knew the psychological treatments weren't supposed to "cure" your illness (I think we know they won't, because we know talking therapies don't seem relevant - it seems wrong) wouldn't you be more likely to use the services? If it was just about learning to cope with and accept illness and you knew it was about that, wouldn't that incentivize you? The people speaking seem to know nothing about this illness or about disability generally.

This "negative view of CBT/recovery from CBT" line is also fairly shallow and self-serving. The thought seems to be that CBT either is magic and is perceived to do things it cannot possibly do, or "negative thinking" has won the day. The idea that not being lied to about the prospects of treatment or recovery would remove "hope" is the kind of thinking that you can only buy into if you accept the brainwashing and patronizing CBT framework/"therapeutic" approach, which I am sure that many practitioners uncritically accept. It is a huge problem.

Re: hope, it would be pretty "positive" if you thought there was a service that would help you cope with becoming newly chronically ill and disabled, rather than trying to brainwash you into thinking you are not disabled or, in fact, ill at all. That is "hope". Of course, this should not be called CBT, but the ship has sailed on that one.

On a different but related note - and just from my own perspective - I have often thought that such services (you can call it CBT if you have to, as anything is and can be "CBT") should be run by and for disabled people, as we are best placed to help others cope with the same things we have been through. I would not go for "therapy" of any kind on the topic of being disabled and chronically ill by someone who was not themselves disabled or chronically ill. The idea seems laughable to me. It's hard to see how it would not all be coming from the perspective of abled people, and from that framework. It is not the right approach. There is so much that you learn over decades that simply cannot be taught in a short space of time. I know it took me years to learn and experience it. Disabled and chronically ill people should be the practitioners. I am sure there would be huge interest in this. I don't know if anything like that exists. Many healthcare practitioners still seem to think "disabled" is a bad word that you should avoid applying to yourself because it's "negative" (from their perspective), or because you are "not disabled enough" (from their perspective, not knowing much about the issues).

The hope lies in being able to accept your illness and have as fulfilling a life as possible in the circumstances. Too often the metrics of "fulfilment" from non-disabled healthy people are applied to us by people who cannot know any better because they haven't experienced it, and this can delay progress and acceptance. The kind of stuff they talk about in CBT is from a perspective and "framework" that is usually not really relevant to our lives. And that's okay. Some people may be okay with it and find it beneficial, but it can be harmful especially when one has just become ill and is at a vulnerable point psychologically. It concerns me a lot.

Sorry for writing so much I'm just quite concerned about the CBT; I understand realistically that none of what I am describing can happen. :(
 
Ariel said:
Sorry for writing so much I'm just quite concerned about the CBT; I understand realistically that none of what I am describing can happen.
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I share your concern for the same reasons, Ariel. Very well put.

Though I'm wary of assuming that people with ME are necessarily the best people to be the main source of help and advice for other people with ME. Someone well enough to be a therapist/support worker/clinician for people with ME would have to have very mild ME to be able to hold down the job and may either never have experienced severe ME, let alone very severe ME, and even if they have, may wrongly attribute their improvement to all sorts of quackery including positive thinking.

I think we need a combination of consultant led accessible specialist nurses to help with symptom management including pacing and medications, arranging practicalities like carers and finances, and emotional support with dealing with having a chronic illness; and information about patient support organisations for the person to join and get advice and support from if they wish.
 
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