NICE ME/CFS draft guideline - publication dates and delays 2020

Esther12 said:
The 'primary cause' bit is vital imo.
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Wonko said:
I'm fairly sure that they have never said deconditioning is the primary cause.
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I think the notion of a "primary cause" is ambiguous in itself. Is it a newly-introduced terminology?

Typically there is the BPS notion of some kind of illness acting as an initial trigger, such as a virus, and then something else then perpetuating the resultant deconditioning, in the form of unhelpful beliefs.

But "primary cause" could refer to either. Deconditioning as the primary cause of the perpetuated illness. Or a virus as the primary cause of the illness in the first place. All very woolly.
 
Barry said:
But "primary cause" could refer to either. Deconditioning as the primary cause of the perpetuated illness. Or a virus as the primary cause of the illness in the first place. All very woolly.
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I think it is quite deliberately making use of the BPS doublespeak that says of course there is a biological trigger so the disease is not 'primarily' either B or P or S. It is all mixed in a way that all the answers are right.

It might of course be coming from the subconscious via the id taking to the ego but only a psychologist could know that.
 
Barry said:
I think the notion of a "primary cause" is ambiguous in itself. Is it a newly-introduced terminology?

Typically there is the BPS notion of some kind of illness acting as an initial trigger, such as a virus, and then something else then perpetuating the resultant deconditioning, in the form of unhelpful beliefs.

But "primary cause" could refer to either. Deconditioning as the primary cause of the perpetuated illness. Or a virus as the primary cause of the illness in the first place. All very woolly.
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I was thinking of someone I know who labelled a persons illness as their fault - psychological. Partly I think it's some form of indoctrination i.e. to believe that it won't happen to them because of you beliefs/aptitudes whatever --- maybe it's just comforting---

Lets face it, there are a lot of illnesses we do not currently understand well e.g. dementia.

I think these people are simply as ignorant as the rest of us i.e. they don't know the answers. Yet we may/probably have the techniques to begin to understand the underlying cause of ME e.g. the GWAS study may give us pointers.

In the meantime we shouldn't empower the ignorant.

In fact I think ME is partly chance, genetics, environment --- roll the dice enough (generations) and this will turn up.

I recall Jaime Seltzer pointing out that Governments shouldn't fund psychological studies because we know they don't work - why spend more money on them?

So maybe we need to reinforce that message - these approaches have been tried and we know they do not work.
 
email from #MEAction UK
For the past 13 years, the National Institute for Health and Care Excellence (NICE) has recommended the harmful treatment of Graded Exercise Therapy for people with ME. Our community knows the steep cost of this recommendation - how it has worsened the health of so many of us.

On Tuesday, 10th November, NICE will release its draft guidelines for ME/CFS. This could change the healthcare offered to everyone with ME in the UK, and have implications for the care of people with long COVID, as well
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Give your Input on NICE Guidelines

As a key stakeholder, #MEAction UK will be submitting an extensive response to the guidelines, but we need your input to do so. Whether you live with ME, care for someone with ME, or are an ally to the cause, you are welcome to participate.

#MEAction UK’s NICE team - many of whom have ME or care for someone with ME - will be writing the submission. The consultation will be open for 6 weeks, ending on the 22nd December.

We will be holding two community calls to discuss topics in the ME/CFS draft guideline. These will be open to anyone in the community who wants to participate and offer input on #MEAction’s official response.

First call: 4pm, Tuesday, 17th November
Second call: 8pm, Monday, 23rd November

Join the Calls
Together, we are creating a world where people with ME will finally have access to good care.

See you there,
All of us at #MEAction UK
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adambeyoncelowe said:
It's not long now!
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When are you free of the confidentiality agreement, once the full revised guidelines are published?

We (the committee) are considering how a forum response might be organised and it would be helpful to know, roughly, how the draft is organised.

The existing guideline has these following sections
  • presentation
  • diagnosis
  • general management after diagnosis
  • referral to specialist care
  • managing setbacks/relapses
  • review and ongoing management
  • principles of care for people with severe CFS/ME
can you say if the draft is organised in a similar way?
 
Andy said:
When are you free of the confidentiality agreement, once the full revised guidelines are published?

We (the committee) are considering how a forum response might be organised and it would be helpful to know, roughly, how the draft is organised.

The existing guideline has these following sections
  • presentation
  • diagnosis
  • general management after diagnosis
  • referral to specialist care
  • managing setbacks/relapses
  • review and ongoing management
  • principles of care for people with severe CFS/ME
can you say if the draft is organised in a similar way?
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You should consider the scope's main topics instructive as to how the guideline is structured.

We're not free of NDA until it's all done and dusted, but each item enters the public domain as and when it's published, and so is no longer confidential. So we can point to what's in the consultation docs, and therefore already in the public domain, but couldn't go beyond that.

ETA: We couldn't discuss committee discussions, for example, or express our own opinions. We could direct people to what's currently in the public domain. (Edited for clarity.)
 
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I've had a chance this morning to read back over this thread. I hope the guidelines have been overhauled and are quite different in content and context. I'm keen to see the work.

I was taken aback by Jo Daniels' comments re CBT. It's the context of how things are said that can be so important. Sure CBT can be helpful for someone with cancer who is highly distressed. It can help them to cope better, be less distressed and look after themselves well. BUT: No one would suggest CBT cures their cancer. I know I'm preaching to the choir here: but, most, but not all of the literature re CBT and CFS is about curing patients re overcoming deconditioning (never objectively defined) and undoing 'unhelpful' thinking. That's totally different and offensive to patients. There is a smaller literature which is more aligned to the supportive CBT in other medical conditions. The two are separate and polar opposite ways of working. I hope NICE make that clear.

Jo Daniels is on the guidelines review committee? Am I correct in thinking that she is the only psychologist on the committee? If so, then I will take a good look at the psychology / CBT aspects and let you know my thoughts/concerns. I'm happy to contribute here to formal response to NICE, if you feel my input of value. Please do let me know.

Will you be starting a new thread for the feedback / comments?

Warm regards
Joan Crawford
Counselling Psychologist
 
Joan Crawford said:
I've had a chance this morning to read back over this thread. I hope the guidelines have been overhauled and are quite different in content and context. I'm keen to see the work.

I was taken aback by Jo Daniels' comments re CBT. It's the context of how things are said that can be so important. Sure CBT can be helpful for someone with cancer who is highly distressed. It can help them to cope better, be less distressed and look after themselves well. BUT: No one would suggest CBT cures their cancer. I know I'm preaching to the choir here: but, most, but not all of the literature re CBT and CFS is about curing patients re overcoming deconditioning (never objectively defined) and undoing 'unhelpful' thinking. That's totally different and offensive to patients. There is a smaller literature which is more aligned to the supportive CBT in other medical conditions. The two are separate and polar opposite ways of working. I hope NICE make that clear.

Jo Daniels is on the guidelines review committee? Am I correct in thinking that she is the only psychologist on the committee? If so, then I will take a good look at the psychology / CBT aspects and let you know my thoughts/concerns. I'm happy to contribute here to formal response to NICE, if you feel my input of value. Please do let me know.

Will you be starting a new thread for the feedback / comments?

Warm regards
Joan Crawford
Counselling Psychologist
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Another appearance of Jo Daniels is in the article linked in this post, Possibility of ME or PVFS after COVID-19, Long Covid, where she is called "one of the leading experts in the treatment of ME/CFS and PVFS in the UK" and she massively mis-represents what CBT for ME (a la PACE) actually is in it.
 
Joan Crawford said:
Will you be starting a new thread for the feedback / comments?
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Yes. Sometime tomorrow soon a committee member will start appropriate threads for forum discussion of the draft guideline to feed into the forum's response. The committee are currently discussing how to manage the process and will let members know.

Joan Crawford said:
I'm happy to contribute here to formal response to NICE, if you feel my input of value. Please do let me know.
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All members interested will be encouraged to participate in the forum discussion that contributes to our response. We haven't decided who or how we will produce the final response. Your offer of help is noted with thanks.
 
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I have written to my MP reminding him of the publication of the Nice guidelines tomorrow. With all that is happening in the world, I doubt if anyone outside the ME community will have this as a focus.

He has responded positively. Do we need to ensure our allies who live with a different focus are prepared in the sense of knowing that this issue may need time and attention over the next weeks whatever else is happening? We don't know at this point what we may need to say or do, nor what help might be useful.
 
I think I'd wait until we see it before going all out with publicity.

I've just had a lovely fantasy that we will all read the new guideline, heave a sigh of relief, and all our response needs to be is 'thank you'.

Given Jo Daniels banging on about CBT, I rather doubt it. Let's wait and see.
 
adambeyoncelowe said:
You should consider the scope's main topics instructive as to how the guideline is structured.

We're not free of NDA until it's all done and dusted, but we can discuss each item as and when it's published. So we can discuss what's in the consultation docs, but couldn't go beyond that.
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@adambeyoncelowe It’s my understanding that we can’t really “discuss” the draft guideline - at least not in the way I would have done prior to being on the committee. I understand we must still refrain from expressing opinions on what the guideline says, and on how the committee reached the conclusions they did. We are allowed to point people to the relevant published documents, but really not much more than that, I think. ;)

Personally, I intend to read as many responses to the new guideline draft as I can, but I do not intend to be drawn into any discussion, nor will I try clarify any parts of the document or it’s intent. This is my understanding of the extent of our confidentiality agreement. This will not be easy for me.
 
Keela Too said:
@adambeyoncelowe It’s my understanding that we can’t really “discuss” the draft guideline - at least not in the way I would have done prior to being on the committee. I understand we must still refrain from expressing opinions on what the guideline says, and on how the committee reached the conclusions they did. We are allowed to point people to the relevant published documents, but really not much more than that, I think. ;)

Personally, I intend to read as many responses to the new guideline draft as I can, but I do not intend to be drawn into any discussion, nor will I try clarify any parts of the document or it’s intent. This is my understanding of the extent of our confidentiality agreement. This will not be easy for me.
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That's my intent too. For the avoidance of doubt, it's easier to just direct people to what's already written.
 
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