NICE Statement about graded exercise therapy in the context of COVID-19

https://www.nice.org.uk/guidance/gid-ng10091/documents/interim-findings-2

"NICE is aware of concerns about graded exercise therapy (GET) for people who are recovering from COVID-19. NICE’s guideline on ME/CFS (CG53) was published in 2007, many years before the current pandemic and it should not be assumed that the recommendations apply to people with fatigue following COVID19. The recommendations on graded exercise therapy in CG53 only apply to people with a diagnosis of ME/CFS as part of specialist care, and CG53 is clear that this should be part of an individualised, person-centred programme of care, with GET only recommended for people with mild to moderate symptoms.

As the guideline is currently being updated, it is possible that these recommendations may change. The evidence for and against graded exercise therapy is one of the important issues the guideline committee is considering. NICE plans to consult on the updated guidance in November 2020.NHS England has recently published guidance on After-care needs of inpatients recovering from COVID-19 that includes advice on fatigue.

July 2020"

 

Mmmm

 

After-care needs of inpatients recovering from Covid-19

NHS, June 2020

Graded exercise is mentioned once in this document, from last month.

 

Well it is a sort of caveat for pwme but pwme still at risk :-(
At least something to quote.

 

I would like to feel optimistic, however making the distinction may also enable the professional.investment in GET to continue and the status quo to prevail.

 

I don't think it really says much. The NHS view on GET for ME/CFS is that it must be carried out by highly-trained individuals, which I find hilarious - as if the concept of slowly increasing the amount you do is some sort of great scientific revelation and not just common sense *for most other illnesses*. Perhaps they feel they don't have the capacity to roll this out to Covid patients?

I note that on the NICE ME/CFS guidelines page there is a date of 13 July 2020 set for 'Interim Findings'. It's not clear to me if this is something different from the release of this statement.

 

From this document, which is the one mentioned at the end of the statement at the top of this thread. My bolding.

More dismantling of the BPS ideology?

I'm also cautiously optimistic, given the statement at the top of this thread. If GET was considered safe and without problems, why issue this statement?

 

One reason is because Covid leaves some of these patients with clear lung damage and severe shortness of breath, and so exercise in these cases is counter-intuitive. Now it is for ME/CFS too, but the reasons why are much more complex.

 

It would be the ideal moment to circulate a good guide on pacing. Then patients and healthcare professionals dealing with covid 19 can decide for themselves what makes more sense.

 

possibly in response to this question raised in parliament?
https://www.s4me.info/threads/uk-house-of-lords-house-of-commons-questions.707/page-20#post-272551

 

Our article at #MEAction on this. A culmination of many pressure points leading to this I would say.

https://www.meaction.net/2020/07/11...-recommended-for-post-covid-fatigue-say-nice/

And tweet:

https://twitter.com/user/status/1281956132395810818

 

This looks to be more of a legal covering of asses but at least it's something. The wording is bizarre as well, "should not be assumed". I mean nobody needs to make assumptions or anything, it either is recommended or it's not. We actually know from some prior documents, including the RCGP recommendations, that they actually did plan on doing just that. So the framing is entirely about perception here, 90% PR and 10% sweating a bit about the legal storm about to hit them, that little nagging thing inside that never spoke: "wait, what if we actually are wrong about this?"

But it shows that faced with scrutiny they will not stand by advice they have controversially pushed on vulnerable people without evidence for years with catastrophic consequences. That is how confident they are in the credibility of this "evidence", they will pretend not to have said anything when actually pressed on substance. The same way as whenever you actually ask the BPSers about their underlying theory they never actually say anything, because they know it sounds too ridiculous to say outside of their mutual admiration society.

I assume that the official reason will be something to the effect that "CFS" has no clear cause and so there being a clear known cause it should be treated differently. Even though this is entirely arbitrary as even their own research shows the very high prevalence of a viral trigger. This is implausible deniability, it's simply not credible and yet I assume the institutions to respect the omerta.

At least it will make the case that the proper advice is the one that was trampled over decades ago by Wessely and his cronies. So there's that. However:

Screw you NICE, sideways. You never actually bothered with the evidence, there never was any to push this ideological monstrosity into practice in the first place. The simple fact is that there never was any reason to even consider the question, it is beyond absurd and reflects total willful ignorance and misunderstanding of the issue.

The BPS model and its FND/MUS/ACRONYMS derivatives will die and absolutely nothing of value will be lost. But this legal cover will not change the legal shitstorm of decades of deliberate infliction of egregious harm.

 

https://twitter.com/user/status/1282044398105174018

 

https://twitter.com/user/status/1282218686196178945

 

Clearly they have an "effort syndrome" .

Finally: Don’t give up hope. You can cure your Effort Syndrome if you really want to!

https://doi.org/10.1111/j.0954-6820.1986.tb08948.x

 

It's the same statement (which suggests there will be an announcement tomorrow to publicise this, but I don't actually know).

The placement and the title of the notice have presumably been chosen for a reason. I'm sure you can make your own inferences from that. That may be the point.

 

With more time to chew on this... it doesn't actually advise or say anything. It simply says "don't assume" but doesn't actually advise against GET or state a position as to whether exercise should be a recommendation for post-COVID rehabilitation. Basically a non-statement.

Some of which includes exercise. The RCGP guidance specifically planned on making exercise and CBT a central part of rehabilitation. There is nothing special to GET, it's just exercise. Advising exercise is the exact same thing as advising GET, there is no special training or recipe. There is no such thing as specialist GET, even less so any "personalized" specialist GET. It's as much personalized as a psychic seance is personalized. Technically true, ultimately meaningless.

It's even more cowardly than I saw at first. This organization is completely broken and ultimately only serves itself. What a mess.

 

Based on

I view this a bit differently. Person-centred care meaning that if the patient isn't responding as expected or the treatment is making them worse then how the patient responds should take precedence over the guidelines.

This could be read as a warning shot over the bow.

However, as usual I expect the patient would end up having to fight their corner given the lack of care, compassion and denial of the possibility of harm. It would take an "expert" patient to understand this and have a hope of dealing with it and an expert patient wouldn't easily allow themselves to fall into the clutches of the GET therapist.

Might be handy in the future though should legal action be considered.