UK - NICE guideline on Long Covid

[rvallee]

NICE have released their "COVID-19 rapid guideline: managing the long-term effects of COVID-19", see https://www.nice.org.uk/guidance/ng188

We were distinctly underwhelmed by their original draft, and on a quick scan of this, not much has changed. It would seem they are determined to steer clear of acknowledging any possible connection with any other post-viral syndrome and/or ME/CFS.

Text of our submission is integrated into the same document as everybody else who commented on the draft, so for ease of reading I've attached a copy of our submission (you will need to be a forum member to access it).

The panel list and declaration of interest, https://www.nice.org.uk/guidance/ng188/documents/register-of-interests, reveals that our friend Trudie Chalder is one of the 'experts'.

So because they can't possibly acknowledge having failed for decades in their mismanagement of ME, they decide to basically fail yet again by pretending it simply does not exist or has nothing to do with. Because this will hurt the LC community just as much as us.

I can't emphasize enough how significant the ME advice has been for long haulers. Everything from the basic vocabulary to the framing to the guidance about rest and pacing, all of this has been a lifeline to so many. And here they can't even acknowledge this basic advice, even as meanwhile medicine has had nothing to offer but pissing on their faces with the possibly worst advice.

Great work, folks. This is a great example of how to make a decision that is the worst case for all parties. Nobody's happy or well-serviced. That's just brilliant.

 

[Mithriel]

Clearly covid 19 is not a virus then.

As otherwise it would be impossible to legitimately not mention that an ongoing illness, after a viral infection, was post viral.

And as everyone involved in this is clearly a good apple, and wearing a white hat, that means that covid 19 is not a virus.

It is the same thinking that let the CDC investigate an epidemic and then give criteria for the disease that said you had to wait 6 months before you could say anyone had it.

 

[rvallee]

There is a link to comments on comments and I think they basically dismiss the relationship with ME but I've only skimmed through very quickly

https://www.nice.org.uk/guidance/ng188/documents/supporting-documentation-2

They summarize comments as
"Several stakeholders expressed concern that CFS/ME has not been mentioned. Although this is out of scope they commentedon similarities in symptoms and raisedconcerns that people will be considered as having post-COVID syndrome and not CFS/ME and may receive inappropriate treatment e.g. graded exercise therapy(see comment 15)"

Note the CFS/ME which indicates where they are coming from and in response they say:

"The panel discussed whether this should be added and considered that consideration of differential diagnoses was accounted for in recommendations in section 2 and 3 and nothing specific about ME/ CFS needed to be added to the guideline"

Out of scope.

Things do not get any more "in scope" than this. It is literally most of the scope, in terms of people affected anyway.

Amazing. The level of failure here is staggering. I'm not surprised but it's still shocking how this can happen over and over again.

 

[chrisb]

It was interesting to see in the list of expert advisors those who attended and contributed to the scoping but did not go on to become members of the panel.

 

[FMMM1]

I am amazed that this appears in the Lancet (if it did). It seems to be a lay group who want to invent a new disease called Long Covid based on the same sort of phoney science we have seen so much of for ME. The call for including masses of symptoms in criteria is familiar and completely inappropriate. Criteria for diseases do not include all the possible manifestations. Why do they want tailored multidisciplinary care when nobody knows what to do other than rest? They even mention mast cell activation.

Why do we need a new disease when we already have one that fits the bill?
Clearly to these people because ME is psychological.
Hopefully sooner or later the Long Covid community will come to realise that it would be more sensible to join forces with people who have had this illness for forty years rather than try to invent a new one.

To me that logic also applies to the post Lyme disease community and possibly a host of other post --- disease. One of the difficulties has been trying to get folks in other groups (often quite arbitrarily self allocated to those groups) to work with people with ME. Also, I recall advice to avoid conflict since that puts (Government) funders off. Logically I think we should all work together.

 

[rvallee]

I just read it, it's short, and it's pretty bad, starting over from scratch dismissing all relevant prior work and knowledge. Except starting over here means committing the exact same mistakes for the exact same reasons using the exact same arguments while being stubbornly obsessed with keeping its context a clean slate. And mostly to avoid having to acknowledge having failed miserably before. Oohhh boy. The dysfunction here. It's so damn excessive. Most of it does not apply to most long haulers. Everyone gets hurt, nobody's happy and no one gets help. This is the BPS way.

Basically most of it is fluff of little relevance since this is still a research problem and we know nothing about it. The only bits relevant to clinical practice seem to be the Service organization section and... drum roll...

The core team could include, but not be limited to, the following specialist areas:

• occupational therapy
• physiotherapy
• clinical psychology and psychiatry
• rehabilitation medicine.

Yup. Going for maximum failure here. I feared it would be this bad. Ugh.

There's also a bit somewhere about giving education and information about managing fatigue and brain fog. Which... uh... I guess physicians will just make up on their own? So basically a complete free-for-all, advise whatever you want, no one will check anyway.

Honestly... :

There's one bit in the Recommendations for research that should be quite interesting and not the least bit controversial:

What is the natural history of post-COVID-19 syndrome?

Ah, indeed, what is the natural history of this brand-new never-before seen thing? That one should be a doozy if someone ever has to actually go through a whitewash here and give a whole history that begins on March, 2020.

 

[rvallee]

Long COVID: A Primer for Family Physicians

https://www.aafp.org/afp/2020/1215/p716.html


I don't think this has been posted before. By Greenhalgh last month. Basically if you do not have organ damage or typical pneumonia symptoms: screw you. It's really bad that she will be giving a talk to Canadian physicians, she clearly has paid no attention to the ME issue beyond her past misunderstanding and her caring about LC ends at, well, here:

Recommended management for most patients in the outpatient setting, whose symptoms tend to be nonspecific and dominated by fatigue, consists of emotional support, ongoing monitoring, symptomatic treatment (e.g., acetaminophen for fever), and attention to comorbidities. Because the role of exercise in recovery is controversial,10 patients should be counseled to pace themselves carefully and cut back if symptoms worsen. Specific guidance has been published for athletes returning to sports participation.

This is where most people with Long Covid will be. So for most of them, the same old crap that doesn't work. And the very definition for most is precisely that symptoms worsen, but they can't acknowledge it because that's ME and that's taboo, hence why no discussion in the new guidance.

Mental health and well-being may be greatly improved by reestablishing social connections, community and peer support, and attention to structural determinants (e.g., measures to mitigate poverty, fight discrimination, and achieve social justice).16,17 Psychiatric referral may be appropriate for some patients.

Just completely missing the point of why people with LC lose their social connections. Those are real problems but unrelated to this.

Blegh.

 

[rvallee]

CSP gives cautious welcome to NICE 'Long Covid' guidance

https://www.csp.org.uk/news/2020-12-18-csp-gives-cautious-welcome-nice-long-covid-guidance

The CSP has expressed concerns that a newly-published NICE guideline on managing the long-term effects of Covid-19 (‘Long Covid’) does not completely address the rehabilitation needs of recovering patients.

Unfortunately, it's for the wrong reasons. Ugh, this is so absurd, the very worst mistakes are being repeated all over again and again and again:

CSP assistant director Ruth Ten Hove said: ‘While the published guidance is relatively comprehensive, it still doesn’t do enough to connect people with Long Covid to the right services to meet their needs. There are significant gaps relating to the rehabilitation needs of this cohort, with common treatments such as pulmonary rehabilitation, re-conditioning and fatigue management being overlooked, and a lack of detail on patient pathway development, MDT and self–management.

Although in a sense, ignoring the stupid deconditioning bit, this is pacing and addressed by the ME guidelines but NICE won't do that because they feel that most patients with LC should go away, apparently. Or be stuck with us, I guess is the most likely outcome of this. So at least it's good that the ME guidance may actually come out better than this sorry excuse of a guidance.

‘The guideline risks adding more steps to the patient pathway - delaying access to much-needed rehabilitation. The rehabilitation component of the guideline needs developing further by experts currently delivering Covid rehab, so that the pathways are clearly described and as effective as possible.’

But is it? And what rehabilitation? We know generic rehabilitation doesn't work here FFS.

 

[Amw66]

The king is dead ...long live the king

 

[Amw66]

The formal comments from long COVID support groups indicate they are less than impressed with the draft .
You can access the comments from the link on Afme ( posted previously on this thread)

ETA document below

 

[Jonathan Edwards]

Isn'this fromGreenhalgh pretty fair: ?

Recommended management for most patients in the outpatient setting, whose symptoms tend to be nonspecific and dominated by fatigue, consists of emotional support, ongoing monitoring, symptomatic treatment (e.g., acetaminophen for fever), and attention to comorbidities. Because the role of exercise in recovery is controversial,10 patients should be counseled to pace themselves carefully and cut back if symptoms worsen. Specific guidance has been published for athletes returning to sports participation.

If there is nothing more to offer then you cannot recommend more. Ongoing monitoring and symptomatic treatment are covered. At least the caution on exercise is there.

 

[Hoopoe]

Yes it's fair. Ideally it would list the comorbidities and better explain what pacing is.

 

[Jonathan Edwards]

The formal comments from long COVID support groups indicate they are less than impressed with the draft .
You can access the comments from the link on Afme ( posted previously on this thread)

ETA document below

Interesting to see comments from Derek Wade:

I cannot see how you can draw any clinical, conceptual or other logical difference between the syndrome, and the areas that you are deliberately excluding such as chronic fatigue syndrome or post intensive care
syndrome. Syndromes, by their very definition, have many symptoms which may have many causes, and there is no way to draw lines around them.

He acknowledges that in many cases it may as well be called ME. His pontification about syndromes having many causes by definition is rubbish though. A syndrome. is a cluster of symptoms signs that is named because it is thought likely to reflect common causal factor. You can draw lines too.


My personal view is that you would be much better simply stating that if a person has any symptoms 12 weeks after the onset of symptoms of infection that were not present before the onset of the infection, then they fall into this guideline. This will exclude people who simply have the same symptoms as before, provided they have no new symptoms.

That seems sensible.


A further problem is that you have not mentioned the word, functional illness. This is naïve. 25% of all hospital attendance is attributable to functional illness, and there is no reason to believe that people who have had Covid are immune to functional illness. There will be a significant number of people whose primary problem after Covid is functional, however that is conceived.

Here the doublethink comes in. What is functional if he is suggesting it does not matter how it is conceived. It seems he just knows what it is. The idea that it is 25% of hospital attendance's rubbish in my experience. Unless he is talking about any symptoms for which you cannot find specific structural roof of cause. A mature physician accepts that specific structural proof is not expected much of the time. A painful stiff shoulder may not be proven to be a rotator cuff irritation but it probably is. Why mention a term that has no explicit meaning - unless of course it is the hidden meaning that there is nothing really wrong or it mind-braininteyaction or some such drivel

On page 4, line 10 you draw a distinction that is not possible. You refer to symptoms as being physical and psychological as if these were two completely separate categories. I can have symptoms of tingling in my fingers, which could be considered physical, but it could be entirely due to anxiety or distress which is psychological. On the other hand I could have extreme anxiety and palpitations where the palpitations might be considered a manifestation of anxiety, whereas in fact the anxiety is secondary to the palpitations and arises as a direct result of a raised pulse rate.

So there is a difference between physical and psychological, as he explains. This is where the doublethink takes off.

On page 4 line 29 you refer to a "service model" as if it was likely that there would be a single service. I think it is obvious that the range of problems is large, and they frequently overlap, and that there will be no common single group warranting a particular service. It would be counter-productive to have a service for people with a particular syndrome given that the syndrome covers almost everything.

That seems sensible. Why setup special Covid clinics when there is already a big demand formic the same problems? Unless of course as a research base.

In summary, “I would not start from here!”

Fair enough.

I think that the fundamental assumptions underlying this proposal need to be reviewed, and it should be placed within the biopsychosocial model of illness which makes it clear that individual symptoms cannot be and should not be considered in isolation nor do any individual symptoms necessarily have the same causes in different patients.

Enough said.

 

[Hoopoe]

it should be placed within the biopsychosocial model of illness which makes it clear that individual symptoms cannot be and should not be considered in isolation nor do any individual symptoms necessarily have the same causes in different patients.

The biopsychosocial model of illness means that you can make up a psychosomatic cause of symptoms on the spot, whenever you want. He seems to be saying that they need this freedom, presumably because they aren't able communicate normally with patients and simply say that they don't understand and cannot help further.

 

[Barry]

On page 4, line 10 you draw a distinction that is not possible. You refer to symptoms as being physical and psychological as if these were two completely separate categories. I can have symptoms of tingling in my fingers, which could be considered physical, but it could be entirely due to anxiety or distress which is psychological. On the other hand I could have extreme anxiety and palpitations where the palpitations might be considered a manifestation of anxiety, whereas in fact the anxiety is secondary to the palpitations and arises as a direct result of a raised pulse rate.

So there is a difference between physical and psychological, as he explains.

So Wade states it is not possible, then immediately follows up with examples illustrating it is. Just because he may not know at the time which it is, does not therefore mean they must both be in the same category. It's as if he is saying: If you don't have the data available to tell if something is a rabbit or a train, then they must both be in the same category. Where would science be if this sort of thinking ruled the roost.

 

[Kalliope]

Michael Sharpe, professor of psychological medicine at the University of Oxford, said the guidelines were "an excellent starting point" for addressing the needs of people who had survived COVID-19 but remained ill.

 

[Sly Saint]

https://marlin-prod.literatumonline.com/pb-assets/Lancet/pdfs/S0140673620327057.pdf

 

[rvallee]

The formal comments from long COVID support groups indicate they are less than impressed with the draft .
You can access the comments from the link on Afme ( posted previously on this thread)

ETA document below

I feared a dumpster fire. I did not expect it to be so generously fueled. Wow. This is putting too much weight to my growing belief that health is too important to be left to medicine. This is an incredible level of dysfunction. It doesn't have to be this way, none of this is normal.

Sadly I think that the UK has basically checked out of the race and will not be part of the solution here. Not that other countries are doing great but this here is a perfect example of arguing about angels dancing on hairpins.

 

[rvallee]

Isn'this fromGreenhalgh pretty fair: ?

Recommended management for most patients in the outpatient setting, whose symptoms tend to be nonspecific and dominated by fatigue, consists of emotional support, ongoing monitoring, symptomatic treatment (e.g., acetaminophen for fever), and attention to comorbidities. Because the role of exercise in recovery is controversial,10 patients should be counseled to pace themselves carefully and cut back if symptoms worsen. Specific guidance has been published for athletes returning to sports participation.

If there is nothing more to offer then you cannot recommend more. Ongoing monitoring and symptomatic treatment are covered. At least the caution on exercise is there.

I don't think current practice is capable of delivering this competently, though. We sadly know this for a fact. Even more we know for a fact that no monitoring, oversight or accountability exists in this model. Right idea, poor execution guaranteed. It's good to put a notice against exercise but then the updated ME guidance is at least more relevant here. This basically leaves most of the patients out to dry. As many comments from physicians stated, how are they going to distinguish them from the other chronic illness patients anyway? They can't and won't.

Anyway this is a research problem so clinical support was always going to be minimal but I see very little in the way of a large-scale research effort under way so this feels like the same dead-end they gave us, with intent to leave this as is and only help those with "respectable" medical problems.

 

[rvallee]

Following NICE Guidance On Covid Treatment Threatens To Overwhelm Mental Health Services

http://www.cbtwatch.com/following-n...hreatens-to-overwhelm-mental-health-services/

CBTWatch, excellent as always in warning about the IAPT freight-train being obviously aligned to careen down LC lane.

Yesterday NICE issued guidance on the management of Covid post 12 weeks (long term) https://www.nice.org.uk/guidance/ng188 and recommends that those with mild anxiety or mild depression are referred to mental health services, with severe cases of anxiety/depression referred to psychiatrists.

Given that according to NICE the most common features of long term Covid are fatigue, ‘brain fog’ and breathlessness, and that ‘symptoms of anxiety and depression’ are presented as possible symptoms of Covid at any stage, how is it possible to make an additional diagnosis of anxiety and depression?

Those with long term Covid are likely to suffer the same fate of those with Chronic Fatigue Syndrome of not being really listened to.

It's kind of ironic that in blocking everything related to us they set themselves up for failure, because if it's "brand new" then nothing's been tried and it would be fair game for an entire new decades-long round of the same BPS crap, after all it's "never been tried" because it's a "brand new thing", right? Can't argue with that.

I had a laugh at this, although quite frankly it's more tragic than funny:

Matters have been compounded by the BABCP’s (the lead organisation for cbt) unwavering support for IAPT and the British Psychological Society’s endorsement of IAPT training. Despite any evidence that the competence of therapists trained relates to client outcome.

Paper is linked in the article. I would personally dispute the idea as obviously if outcomes aren't better, then "competence" is definitely not what is being evaluated. Typical as always in clinical psychology, to rate things according to some arbitrary thing that bears no relation to reality. Makes as much sense as stating that something is faster even though it takes longer to cross some distance. Zero common sense in this field, it's maddening.