UK: NICE Longcovid guideline 2020

[FMMM1]

The best way would probably to raise this issue with UK long haulers, who are probably not much aware of those things. It takes a long time to get familiar with how bad this process generally works out. They need to start getting involved, I think by now they've gotten the message that wherever patients are not heavily involved, things are just plain bad.

Yea, I copy my emails to NICE, re the use of GRADE/Cochrane, to the LongCovidSOS group and the covid APPG i.e. as well as the ME/CFS APPG. I've also emailed the LongCovidSOS group to encouraged them to learn from the ME/CFS's communities experience [Note*]. I've also contacted Dr Nisreen Alwan who is fairly prominent Long covid sufferer. I've never received a reply. Perhaps folks like @Andy have contacts/would have more success.

Basically to force the same solution that "worked" for us: patient pressure and then some more pressure, but we can't do that, we did our own, they have to take it from there. Without accountability the system just falls back on the path of least resistance, the trolley just plows through. So resistance must be applied.

Yea it seems like the folks @Jonathan Edwards is aware of are the default position - once they are involved then that makes the outcome defensible.

I assume there would be the exact same foaming at the mouth for the ME guidelines in response, but without patient resistance it will end up just the same anyway.

Perhaps not; perhaps dancing in the street i.e. if they get their way re this NICE guideline ---- unlike that other one [EDIT - ME/CFS guideline] ---- system returning to equilibrium --- joy (ironic).

*Note - email to info@longcovidsos.org:
"Really just contacting you as you may find the ME/CFS community has knowledge & experience which may be useful - although, hopefully those with Long covid will not suffer the same marginalisation. One of the issue faced by the ME/CFS community is poor quality research, despite the fine words in this Parliamentary debate* it appears that nothing much has changed - poor quality studies, assessing exercise and CBT, which have no objective outcome indicators e.g. like electronic activity monitoring, are still being funded. So the researchers claim, based on flawed studies, that this is all in your head. The researchers who carried out low quality studies in ME/CFS are now being funded to carry out the same low quality studies in Long covid. Here's a website you may find useful - Science 4 ME [https://www.s4me.info/].
I've emailed some MPs recently re the issue of Government Department's funding low quality research into ME/CFS**.

Regards and good luck to you guys"

 

[bobbler]

Basically amounts to being OK with such prejudicial opinions. I guess as long as this means us and not Long Covid, but it's a poor bet to assume people like Turner-Stokes don't think the same of Long Covid.

I know this is retrospective that I've found this (I found it as I was wondering who on earth this woman turner-stokes is that is on the Jan 2021 FOI release). However, from what I can she her sudden 'interest' (doubt she spent more than 5mins cribbing something to put down on the sheet that is to do with ME/CFS from a colleague) in ME/CFS seems to be ONLY because she believes the long covid guidelines will have 'similar messaging'.

SO yeah, those with long covid are/were fools to think it isn't really their boat she is talking about. Her protocol-breaking letters and statements all seem to have a one-liner about ME/CFS then go onto long covid. 'some people with ME/CFS experienced humiliating treatment but..... this will be particularly useful for the >1m with covid'

People who say bigoted things about any patient group shouldn't be allowed to stay, and those who permit it should indeed know they are basically doing it themselves to those individuals. I personally don't get the logic as to why these people aren't cast out of the profession just as every other profession would have basic standards - the old 'there aren't enough clinicians' line hardly holds weight when what they also insist the only thing they offer is something that happens to be counterproductive to patients. It's all very supply-led mindset, is this woman's position basically union/lobbying for the profession - I'm trying to make heads nor tails of what part she is supposed to be playing (so her comments are in context to me).

 

[bobbler]

There is no mention of post-exertional malaise, only one mention of post-exertional fatigue in the Exercise and Fatigue section:
"Slowly increase the pace of each walk until at a comfortable pace without any post-exertional fatigue."

That's disturbing. PEM/PESE is the kryptonite to the fatigue/mind paradigm BPS are trying to push for ME/CFS. Trying to basically use the advertising theory to hijack PEM so that people think you are mis-saying post-exertional-fatigue because THAT'S what they've had imputed into their memories first sounds like a definite and deliberate trick.

and of course they've worked out the hilarious thing is that any laypersons will laugh and laugh at the idea of having a name that means 'after-exercise tiredness' (after all that is actually what they've turned it into when they use the example of exercise for the exertion bit) instead of it being symptom exacerbation for doing a small 'exertion' which is often something others would never ever find exerting e.g. brushing teeth.

These guys are masters at sophism and they use language to do it. It's all so dystopian what they are always after achieving and I wonder when they would be satisfied/how far it would go and for who if left unchecked.

 

[bobbler]

In the Exercise and Fatigue section:

"Why is activity important?

• Covid-19 is a coronavirus.
• A virus will trigger an immune response.
• This immune response can cause inflammation, pain, weakness.
• Initially bed rest and reduced activity levels can aid recovery.
• However, reduced activity can also cause deconditioning, which is where the body becomes weaker.

Remaining in bed can lead to 10-15% loss of muscle mass per week"

Love the fact they've tried using bullet points to make it look like one leads to the other/these re connected. Do people who get flu lose 30% of their muscle mass then? Is there nothing like the CMA for medicine? A company stating something inaccurate (particularly where unreferenced) would be at risk of huge fines from ASA and CMA depending on what they achieved from it. I find it utterly revolting that those who should know better clearly can say what they like without these worries.

 

[bobbler]

In the first section, these sentences are particularly concerning:

“Do you remain at low activity levels and get stuck at this point, often causing worry about doing more and symptoms potentially worsening”
“Are your fatigue levels not changing and you feel like you are stuck in the same place?”
“The human body needs activity in order to produce energy”
“Limiting activity can make you exhausted, lethargic and increase pain when you are not moving around as your body isn’t producing as much energy”
“Work through high levels of fatigue very gently - slowly increasing activity”

It just sounds like cult-speak

 

[bobbler]

Oh dear. That's CBT/GET in disguise.

It's all very well saying:

• Slowly increase the pace of each walk until at a comfortable pace without any post-exertional fatigue.

If you follow that with talk of fear/anxiety about exercise, and goal setting you very easily wipe out necessary caution for those who have PEM, and set them up for failure and self blame.

Same people sound like they are ignoratn-arrogant enough to take people who've been in wheelchairs for decades and think they just need to spend 20mins coming up with a few naive presumptions to give them tips on how to make their wheeling better. Which apparently some people in this world do I hear. How do you teach people who are missing that much of a module what exactly it is they are missing - is there anything to work with in them at all?

I'm sure they write it for the purpose of putting it online for everyone around these people to read. I think they care less about what it does to those who have it as long as those around them blame the patient. And start troping them when they say no to a long walk with claims of it being anxiety that they don't have and never had. That way the abuse from all directions ensures said people are driven to psychological harm not from 'mental illness' but abuse and living in a world that is situationally impossible to be happy in. The idea that these individuals are anything other than psychological harmers inciting it in others to produce greater effect is the biggest gaslight around.

People suddenly get anxiety half way through a walk and then it hits them like a truck somehow 48hrs later because of what tosh are they coming up with for that?

Noone outside those who have done a psychology degree or full qualifications in the area should be allowed to infer or suggest something they are not qualified in. Physios, GPs, 'rehabbers' and anyone else without a smattering of the full understanding of the subject area to contextualise the literature should be banned from taking anything other than people's word literally, when did they become qualified to suggest 'that's not really it, you must be anxious?'. They didn't. Like all other professions they should 100% be expected to have empathy and respect that does not harm anyone's mental health and seeks to understand and not discriminate despite any presumptions they may have.

 

[bobbler]

The impression is that the Long Covid guideline tries to avoid acknowledging any similarity to ME/CFS, despite physical activity being listed as the most common cause of relapse.

I have doubts that this will work out well for them. One thing it could do is make ME/CFS the diagnosis that many LC patients feel is the more accurate one.

I think the stigma that thy're trying to distance themselves from comes from attitudes within medicine and broader society towards "medically unexplained symptoms", and not from anything intrinsic to ME/CFS. And also bad research being tolerated. The problems simply goes deeper than superficial labels and so nothing is solved by avoiding mentioning ME/CFS and PEM.

To address the stigma they need to fight against the common prejudices, such as the idea that lack of objective diagnostic test means the illness has a psychosocial cause.

Good point. People only know what something is from the information thye receive on it. I think this attitude from LC people just shows/reflects how terrible the discrimination and bad misinformation is still. How the job of getting across anything new about what it is has not been done. New guidelines are just generic things about treatment. They do not do the job (like the CDC description) of describing WHAT the illness is. Nothing out there tells another side beyond the BPS stuff.

I feel this [summarising what it is/where it sits and the research so far] is actually the most important bit in anyone or group that wants this to change, and has been neglected and is also why professionals e.g. physios get away with not adopting new guidelines or reading into them what they want or thinking it's a minor thing they just need to 'do what they always did and tell me if there is an issue'. It's not relevant except if 'YOU are treating IT', because the PEM message hasn't been made about how it affects all bits of life and medical treatment. It's the shorthand we need anyone around us to get and give us leeway with.

I also think we need to up our demands to get in line with those with long covid (and others with ME). I wonder if them not joining our fight is because they 'want more'. And rightfully - our fight/ask has been shrunk by resources and politics even with those, they don't have the same fear for their safety we were always fighting yet it's fear of ending up like us. I reckon if we sorted our branding and what our mission was then they might be quite different. And they currently do have different resources and oomph - but that will go fast and we need to think about moving fast. They'd get on board with a fight for proper research, proper treatments but asking them to, without the experience you only believe if you've lived it, think a label and being left to it is a win...

Being boxed into so many years of just focusing on 'please let us pace instead of harming us' looks defeatist - that isn't a life anyone could be OK with. Particularly when we all know noone around us is going to give us leeway to let us do it. No treatments or things that help at all? why aren't they rbave enough to suggest some of the things that do other than pacing - that mightn't work for everyone but deffo do for some, because between being able to not look after yourself or being able to could be the difference. And I'm certainly not talking about anything behavioural working - but we have to note by asking people to PACE that is behavioural too! particularly for younger people who need careers and partners and lives. It's a no-hope disease. And the lying from BPS that people recover if you just ignore them and carry on doing things that stop them resting is even worse because they can't even have teh basic 'life disaster' options if they can't work or plan their own futures based on certain info.

Until I saw the CDC description in 2017/8 and their pathophysiology was precisely what I had based on decades more years of living with it and collecting blood tests and questions (noone ever did anything with these you'll understand) I was about to chase other things - just at the first point I had the chance to have looked into differential diagnoses to 'get to the bottom of it'. I'd had a moderate CFS diagnoses for a number of years but, probably because the consultant who was good and did say empty battery etc was one that my GP would not refer to for anything other than diagnosis and then gave me opposite advice.

Without telling all these people bar the few who got it that it's totally different to what they've been led to believe something is then of course those with LC will think it isn't what they have, and won't want stigma for an illness NONE of us - them or those with ME have. They are going to end up in a difficult place soon as the circling seems to be happening where people run out of patience on the 'oh you had x badly' and the diagnoses they have available are both risky and could bring more trouble than they remove.

I'll be honest, many with ME might feel they would have been better not telling their employer of their condition, even when they are rubbish because it puts a target on you and gives permission to the many who we can now see are different shades of not nice (and you get to find that out only when you are in positions like ours) to be their usual not nice/kind and hide behind our deserving it. Until you are very sure it is what you have you are safest staying well away from the refusal to treat or investigate it involves because afterwards you get excluded.

Diagnosis of exclusion is the biggest multi-layered word ever. It's lay down and get used to it - if you are one of the lucky ones who are allowed to - at best currently, if you've got screaming pathology still not checked you want to stay in the avenue that might take it seriously until it is done so. Which is why the description and estimated pathophysiology would also be useful - it isn't the PR'd 'nothing can be found'. LC won't build on this until whoever speaks for us starts actually putting the message out there. They rightfully won't connect to a disease that doesn't define what it IS, rather than isn't 'and how it feels' as the connecting thing for the group, particularly in the UK. How can you? We all need it fixed and look into seriously - because staring at the 'just pace it out' and no big charity being 'race for the cure' is a future noone could accept until they've exhausted all options?