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

[SNT Gatchaman]

Looks like she has blocked me!

Remember you can view public tweets, even if blocked, if you are currently logged out of Twitter. You wouldn't be able to reply of course.

(I used to follow Twitter accounts for years without an account of my own, by just bookmarking them in my browser. Only signed up in order to promote rationality and push back against the US and UK you-know-whos and you-know-whats in Dec 2020).

 

[Sean]

Looks like she has blocked me!

And they call patients hysterical snowflakes.

 

[Andy]

I've not received anything yet, and unless they are working overtime I assume I won't see anything until tomorrow now.

Looks like an admin error on our part meant that we hadn't returned the confidentiality agreement to NICE, this was done last night so we should receive the guideline in due course.

 

[Dx Revision Watch]

There is now another article, this time in the Times, on the three resignations:

‘Experts quit over call to drop exercise as treatment for ME’
https://www.thetimes.co.uk/article/...u_ncWQ15uLHWOt1BiMAQ0sJr8Rzjc01IDj77TJzaL6iBU

Just to note in this morning's print edition, the article's headline is:

Divisions rife among chronic fatigue experts

(page 22 of the edition for the South West)

The text is not quite the same as the web version, there is no mention of AfME, and the headline uses the term "chronic fatigue"):

File attached

 

[Barry]

On the other hand, I am disappointed that the committee does not appear to have agreed the new Guideline by unanimous consensus.

I think that would be hoping for too much. Hopefully it means the new guideline will not be a watered down version of the draft, in an attempt to win everyone over.

 

[Barry]

The author of the news piece notes:
It is unclear, however, how the evidence became unsupportive.

Well it is quite clear from my report in the draft appendix. It did not become unsupportive, it always was.

[my bold]

Yes! BPS spin yet again, trying to divert attention from the fact that what has really changed, is people are finally waking up to how bankrupt their pseudo-science really is.

In 2007 NICE recommended interventions such as cognitive behavioural therapy and graded exercise therapy for people with mild or moderate ME/CFS, whereas the draft update cites a “lack of evidence for the effectiveness of these interventions.” It is unclear, however, how the evidence became unsupportive. The draft update also emphasises the potential harms of exercise, based on qualitative evidence provided by a small number of service users

That is part of the reason for updating the guideline, the old one got all of this stuff wrong.

 

[Barry]

Brian Hughes comments the BMJ article

Sounds very strongly like babies throwing their toys out of the pram.

 

[Barry]

The psychiatrists barging in, the renaming to 'CFS' and the notion that CBT/GET was any kind of 'treatment' for this serious physical disease, had not yet happened.

They have such a lot to answer for, and I cannot help admitting part of me hopes they end up having to, via strictly legal mechanisms I emphasise. In a very real sense they have, by their incompetence and arrogance, effectively destroyed the lives of so very many good people, with no a hint of acknowledgement or contrition. I respect their basic human rights, as is necessary in any decent society, but I have no respect for them as individuals, their behaviour towards others. They demonstrate minimal respect for the basic human rights of others.

I can't understand why on earth Paul Garner, whose own public account of his confused experience complicates his objectivity and who is now obviously biased, would be used in this article. It's so suspect. How is he even got involved?

It's what they do when they get desperate, and in a rather tragic way echoes their approach to science itself. The have no one credible to quote, so quoting low-credibility opinion will have to do instead, vainly hoping that nobody will notice.

I don't understand why anyone would say there is a need for agreement and unity. There is good and bad science and that is what needs to be recognized. There should be no compromise and negotiation with those backing bad science.

Absolutely. Often means you end up with the worst of everything.

 

[chrisb]

I think that we must, at least, recognise the possibility that those who resigned may have found themselves in an impossible bind. How do you put your name to a report which suggests that the evidence for the treatments you have been recommending for many years is flimsy. Insurers might not be impressed.

 

[Andy]

 

[Barry]

Also a tip from a programmer but copy your text often in the clipboard (ctrl-c). You can inadvertently overwrite it but more often than not if you make a mistake you'll likely still have it in your clipboard.

Yep, I often use a temporary Word document, Ctrl-C into. And with any word Doc etc I habitually save it anyway, Ctrl-S.

If the draft guidelines stick, there will be a misinformation campaign to convince the public that CBT/GET rehab is valid and was withdrawn for reasons other than valid ones.

In due course this may all prove to be the most convincing and damning evidence yet to the wider public of what the these people really are like.

 

[chrisb]

Are we to assume that Leda and the swan is symbolic of more than just reframing?

 

[Barry]

Are we to assume that Leda and the swan is symbolic of more than just reframing?

I think you may be right . Leda being Truth and Integrity here.

 

[Ariel]

Just to note in this morning's print edition, the article's headline is:

Divisions rife among chronic fatigue experts

(page 22 of the edition for the South West)

The text is not quite the same as the web version, there is no mention of AfME, and the headline uses the term "chronic fatigue"):

File attached

Is there any effort to stop people from using the term "chronic fatigue"? It's one of the most difficult things I encounter in actual medical appointments, with illness constantly dismissively referred to as "your chronic fatigue", as though it's some imaginary pet.

 

[JemPD]

illness constantly dismissively referred to as "your chronic fatigue", as though it's some imaginary pet.

Ugh. i totally agree

 

[Peter T]

Is there any effort to stop people from using the term "chronic fatigue"? It's one of the most difficult things I encounter in actual medical appointments, with illness constantly dismissively referred to as "your chronic fatigue", as though it's some imaginary pet.

We could do with a stock response ready to send off every time someone confounds ‘ME/CFS’ with ‘chronic fatigue’ something along the lines of:

’Chronic fatigue’ is a symptom found in many diverse conditions, including ME or Chronic Fatigue Syndrome. To mislabel ME/CFS, a serious debilitating multi system illness, as just one symptom is as insulting and as misleading as referring to a brain tumour as a nasty headache or Alzheimer’s as chronic forgetfulness.

Is there any thing in the draft NICE guidelines that could be quoted here?

 

[Suffolkres]

Remember you can view public tweets, even if blocked, if you are currently logged out of Twitter. You wouldn't be able to reply of course.

(I used to follow Twitter accounts for years without an account of my own, by just bookmarking them in my browser. Only signed up in order to promote rationality and push back against the US and UK you-know-whos and you-know-whats in Dec 2020).

I confess to having more than the one account!

 

[Dx Revision Watch]

Is there any effort to stop people from using the term "chronic fatigue"? It's one of the most difficult things I encounter in actual medical appointments, with illness constantly dismissively referred to as "your chronic fatigue", as though it's some imaginary pet.

Yes, it's frustrating - both in media usage (often seen in headlines and often when there would have been room to at least write "chronic fatigue syndrome" in full) and in medical notes.

My son's initial diagnosis, as a child in 1999, was "PVFS" which was subsequently firmed up to "ME". The 6 monthly outpatient appointment follow-up letters to his GP and school would use a variety of terms depending on which paediatric consultant or registrar he had been seen by on that occasion. So we would see, variously, "PVFS/ME", or "ME/prolonged fatigue", or "ME" or "ME/chronic fatigue syndrome" or "CFS/ME".

Last May, he had routine bloods done plus additional bloods for ruling out potential indicators for coeliac disease and IBD. I noticed that the referral form he was given by the GP to hand to the phlebotomist listed "Chronic fatigue" as existing diagnosis. Once GP practices are operating normally again, we will need to take up this use of terminology with the practice. I expect to find that he is still coded under G93.3/SNOMED CT SCTID: 52702003 but the GP practice should not be using "Chronic fatigue", even as shorthand on phlebotomy referral forms.

 

[Dx Revision Watch]

I confess to having more than the one account!

Yes, you can now toggle back and forth more easily between two or more Twitter accounts. But you do have to take care when posting to remember which account you currently have selected.

 

[Ariel]

Looks like she has blocked me!

I am wondering whether she has blocked anyone else in the replies for example, which aren't too keen on the piece - if she has, perhaps this could be mentioned - would not be the first person to be blocking ME/CFS patients and advocates on twitter