Longterm course of neuropsychological symptoms and ME/CFS after SARS-CoV-2-infection: a prospective registry study 2023 Reuken et al

[ME/CFS Skeptic]

Do you think this is a cause for concern? It seems to suggest the diagnostic criteria as operationalized in this study are seriously flawed. It's bad for the credibility of the diagnosis, it could cause unnecessary stress for patients, and fuel the usual garneresque recovery stories.

I think we saw something similar in the EBV-studies, for example the one by Jason and Katz in Chicago. Early on in post-infectious ME/CFS the improvement rate seems to be quite high.

 

[Ash]

I think the key thing in terms of getting good advice about rest and prolonged convalescence is that post viral conditions are recognised as real, as used to happen with glandular fever (mono), flu, pneumonia etc.

It was accepted back in the 1970's when I had GF that I rest as much as needed, and I was largely bedbound for 6 months, then I recovered completely to full health. There was no need to name it ME or PVFS etc or do any CBT or GET.

I don't think it should get an ME/CFS label until at least 6 months, probably a year.

I think that’s right. But I see the collective “forgetting” -that infections illness may take months and years of time to recover from,
amongst government public health and healthcare authorities is inseparable from the goal to disappear convalescence and a paradigm that allows for rest and recovery.

They had to obscure the shared knowledge of common lasting outcomes of infectious disease first. Convalescence was okay as something for the upper and middle classes to engage in but as more and more workers were gaining access through social security and access to medical consultations and advice, the concept became less helpful to the authorities.

Speaking only locally UK, I think athe success of vaccination programs and sanitation and living condition improvements access to better nutrition for children had made these lasting effects less visible and widespread (Polio, TB Ricketts disease…) left the public receptive to the idea it was all under control and the ravages of disease were all but behind us.

I think it took a while before the old knowledge was ‘forgotten’ enough. But politically the new way arrived most loudly in the 80’s and it’s only been getting stronger since.


I think if viral bacterial infection recovery requires extended periods of rest and is “real” so is emotional pain and suffering and mental collapse or “mental” illness as it is fashionable to call it. So if you go to the doctor and say I feel like capitalism is killing me and my family and I am too heartbroken to work for a year or a lifetime. So be it.

If we didn’t implicitly or explicitly try to elevate our own image inadvertently or vertenty agreeing with and reinforcing the status quo bias against those most at risk for mental and physical harm through working and living conditions, if they appear to the authorities or our conditioned from birth to be biased selves as not really ill.

We are all suffering and sick and no wonder.

 

[Andy]

I don't think it should get an ME/CFS label until at least 6 months, probably a year.

The issue with that idea is that, in today's society, if you don't have a diagnosis then chances of any support drop to near zero. And without a diagnosis then it becomes unclear what symptom management should be used.

Recognising that some people can and do improve, while respecting that many don't, should be possible, so that an 'early' diagnosis can allow for sensible symptom management as soon as possible, and if someone is fortunate enough to improve to a point where they no longer have symptoms then they can be considered to be recovered.

 

[Ash]

When I first became I’ll the number of people who sympathised with me because I was “genuinely so ill” “why wouldn’t they help you” and “want to work” and “so positive”. I was, why indeed, I did, I was. But this was the only way I could cope at this time and it was also the only way to protect myself from further social exclusion.

As I got sicker and sicker people became less and less supportive or sad that I wasn’t being treated and more interested in what I was going to do for myself to sort it all out. This always involved suggestions offered involving money and travel and faith. Lots of money. I had one English pound left after my outgoings on social security. So… a miracle from prayer?

 

[Ash]

The issue with that idea is that, in today's society, if you don't have a diagnosis then chances of any support drop to near zero. And without a diagnosis then it becomes unclear what symptom management should be used.

Recognising that some people can and do improve, while respecting that many don't, should be possible, so that an 'early' diagnosis can allow for sensible symptom management as soon as possible, and if someone is fortunate enough to improve to a point where they no longer have symptoms then they can be considered to be recovered.

I would agree on the circumstances patients are up against. But not the solution chosen.

We are all living with the stirring of ME into CFS and the later being diagnosed with gleeful abandon whilst it was a dustbin diagnosis. I don’t even think well informed well intended Drs can claim to of diagnosed CFS reliably. Not even ME full criteria to the extent it’s used to the exclusion of other diagnoses.

That’s causing despair suicidal sometimes amongst people with relatively short illness duration who could likely either recover or be treated for other illnesses if only these were identified and the same for people of long duration who are rejected by society friends family partners for not managing to recover when so many others do.


We just need a preliminary label given with instructions to act as if PEM or general symptom pattern will likely lead to lasting possibly life long debility if rest is not available. That chances of recovery are good that touted treatments must be examined critically and generally are to be avoided. But that sadly recovery is not available to everyone and that it is not reflection on the patient’s character or behaviour is this illness course points towards ME. Or whether or not the ME takes a progressive or variable trajectory.

This would of helped me enormously.

 

[Andy]

We just need a preliminary label given with instructions to act as if PEM or general symptom pattern will likely lead to lasting possibly life long debility if rest is not available. That chances of recovery are good that touted treatments must be examined critically and generally are to be avoided. But that sadly recovery is not available to everyone and that it is not reflection on the patient’s character or behaviour is this illness course points towards ME. Or whether or not the ME takes a progressive or variable trajectory.

This would of helped me enormously.

So a diagnosis of ME/CFS as per the NICE guideline then.

 

[rvallee]

Dr Stingl said he was reluctant to diagnose ME/CFS before at least 9 months had passed.

The NICE guideline reduced the 6 month requirement to 3 months.

I can understand the logic behind both points of view. There's just the question of what is better in practice.

There is zero reason to make a distinction between the illness at 3 months, 6 months or 9 months, anymore than there is to do the same for mono, or a staph infection, pneumonia, or anything else. Same with a broken bone or a stroke causing injury.

It's the same illness. The fear of labeling is misguided by the old belief system about how it makes it 'real' and chronic. People need to know what is happening to them, so do doctors, and if it means that in reality, recovery rates for ME after 3 months, are 50% (and different at 6 weeks or 6 months), then that's what it means. People still need the opportunity for time off work, to get support and help the natural recovery process, preferably with professional support based on scientific evidence. Instead what we have is decades of recorded lies, invalid data and even worse conclusions.

All of this is driven by the denial and awful research that lead to the notion that recovery is rare, simply because the real denominator was never counted properly. It's true that it's rare, but only after a certain point. It is still the same illness. I'm sorry but medicine is supposed to be scientific, they need to grow the hell up here and fast. Labeling things does not magically change the outcomes per se, but they certainly can improve outcomes by actually recording what is happening and working with reality, instead of some odd mix of fiction and distorted facts.

 

[Ash]

Apologies I was replying to @Andy.
Re NICE.


Except it doesn’t work, the way I guess it is intended to?

It’s great that it’s written that it should be a diagnosis of exclusion (I think I can’t remember…) but is it actually it ever actually that? Maybe there is, out there a well connected wealthy person, somewhere near a well resourced hospital, who has excellent social status; successful in professional, fit, probably white and male, who could rapidly convince the medical profession to test for literally everything known to medicine. Before time runs out for him and he acquires disability status, making everyone just a little more dubious about his account of his own body. But looking at some of the struggles the better off in society are still experiencing when ill like us, I don’t think even they can quite shake off the stigma of a potential ME compatible symptom pattern, they’re not having it as easy as you might expect.

Most of us get the diagnosis pretty much without excluding anything. Not one thing. Maybe three, if lucky?

So this means we don’t have a reliable diagnosis, assuming exclusion would be part of making it reliable, and then in practice even if theoretically it is recommended, we cannot get other diagnoses if they are related to our physical condition, biomedical. We are bared because our symptoms have “ another explanation” ME. Then also medicine is keeping up a good front refusing to treat even the symptoms of this. So where is the “appropriate” “early treatment” that a “timely” diagnosis is supposed to unlock for us?

But we will be much more likely to be saddled with a behavioural or psychological condition based simply off of our audacity in having ME pattern symptoms, and for then expecting medical assistance for these or other conditions and not being able to work.

I don’t blame NICE, I guess an interim diagnosis wasn’t on offer. I think the outcomes will be welcomed by people struggling to get any diagnosis, but they may view this bargain not so favourably when a few months or years or decades in they look back, and see that in the precious early months and years- when they were entitled to real and comprehensive investigation- the label ME was used as part of a strategy to deny them this. Further more they will struggle with this indefinitely. The damage can’t be reversed. What is done cannot be undone. The snow ball of no “new”symptoms is in motion recourse to “without alternative explanation” won’t save you now the avalanche has begun. The symptoms remain considered by most with the power and authority to alleviate them, “unexplained by organic illness”. But they are not by these same considered to be “without alternative explanation” and therefore warranting of “further investigation”, that resides firmly with the ME, Chronic Fatigue Syndrome, and plain Chronic Fatigue, or even just chronic fatigue. Done and dusted. Dismissed, discharged. “Care as usual” aka, none.

Edits:for clarity.

 

[rvallee]

I think we saw something similar in the EBV-studies, for example the one by Jason and Katz in Chicago. Early on in post-infectious ME/CFS the improvement rate seems to be quite high.

LC has shown this without any possible doubt. It's still very disruptive, and medicine still needs to get serious about recognizing reality, that this isn't something people can 'negotiate' or push through. After all, most would actually say that the recovery rates are about there, so it wouldn't make sense to be hesitant to confirm them. But they do need to recognize that illness is not some mysterious unnatural force, it is what is is, acute or chronic, and it's driven by the immune system, not thoughts and beliefs.

So all that nonsense and pseudoscience about the biopsychosocial model needs to be buried in the deepest pit and nuked from orbit, or things will remain just as bad. Infections can lead to prolonged illness beyond the acute phase, this is way simpler than rocket science, in fact pretty much simpler than most concepts in all the sciences. All this junk about illness beliefs (which were 100% correct) and fear of whatever (PEM is a thing and needs to be studied and understood, and so is dysautonomia, and IBS and chronic pain) has been the most pathetic giant failure in the history of all the professions. A hard pill to swallow, but it is what it is.

At its core, it's simply the most basic recognition of reality, and the acceptance of having made stuff up to compensate for denial of what is, frankly, a very simple thing that derives from the germ theory of disease. It's not the best of times for this, medicine is deep in denial over the myriad issues caused by COVID and they can't accept it, but this will also have to pass.

 

[Ash]

There is zero reason to make a distinction between the illness at 3 months, 6 months or 9 months, anymore than there is to do the same for mono, or a staph infection, or anything else. Same with a broken bone or a stroke causing injury.

It's the same illness. The fear of labeling is misguided by the old belief system about how it makes it 'real' and chronic. People need to know what is happening to them, so do doctors, and if it means that in reality, recovery rates for ME after 3 months, are 50%, then that's what it means. People still need the opportunity for time off work, to get support and help the natural recovery process, preferably with professional support based on scientific evidence. Instead what we have is decades of recorded lies, invalid data and even worse conclusions.

All of this is driven by the denial and awful research that lead to the notion that recovery is rare, simply because the real denominator was never counted properly. It's true that it's rare, but only after a certain point. It is still the same illness. I'm sorry but medicine is supposed to be scientific, they need to grow the hell up here and fast. Labeling things does not magically change the outcomes per se, but they certainly can improve outcomes by actually recording what is happening and working with reality, instead of some odd mix of fiction and distorted facts.

I wouldn’t say it isn’t the same illness. But we don’t know what it is at any point as a pathological condition. We know people have the same symptoms straight after the infection or poisoning as years later. But as it stands ME or ME CFS is being used as the explanation for these symptoms. An explanation for itself.

So people who have other conditions causing the same or similar symptoms are not usually getting to find out they have them for years or decades if at all.
As symptoms of an enormously wide variety are considered explained by ME CFS whatever this entity is.

Then of course the person with ME is now to all practical purposes considered unreliable and suspect. Somewhere in no man’s land between really ill and not really ill. Believed on a good day. Disbelief every other day. It’s not a diagnosis that brings legitimacy or “real” status as genuinely ill. It is not. We might want it to be. But it’s not. It’s a block.

Because even well intended Drs believe that ME is untreatable, even the symptoms, that it’s somehow psychological more so than other illness.
They don’t want want to look for other causes because it seems a “poor use of resources” “unnecessary investigations” they use ME as a cul-de-sac a place to warehouse people/patients on mass rather than investigate their individual pathology.

 

[Ash]

Fundamentally I believe it’s unethical to say to a patient their loved ones and caregivers if any, you have a “serious” “incurable” disease with a very poor prognosis, usually quoting something like 5% recovery rates or even lower in advocacy materials. But we want to you all to take this horrifying prediction on at the 3month point, when actually the recovery rate is pretty great if only in comparison to our doom laden predictions. You might not even be all that likely to have ME. They don’t know no one knows. We have fewer MRI machines in this country per million than than anyone who hadn’t found themselves trying to get an MRI could ever imagine possible. At least well over 50% seems a common guesstimate for decent or full recovery. I’ve read high 80s. By symptoms simply going away. Body restores itself , along with some convalescence.

So it’s not actually incurable, in terms of symptoms and limitations which is what any patient would be most concerned with, in the absence of further scientific evidence.

Maybe the pathology is lurking ready to come back later. But I don’t think we could claim to know that for sure. Not until we get a test to help us identify who has the best chances of recovery and who doesn’t. Even then I doubt it’s gonna be clear cut.

I think charities putting out these muddled messages, where by they do mention the recovery chances being better early on but also want to scoop as many early cases into the net of an illness that they’re calling “incurable” and “lifelong”, weakens their case and calls into question their reliability.

When BPSers holler ‘Come over here! We can help you recover!’

and….

Charities yell ‘Come over here!’ ‘We will help you understand how totally and forever trashed your life chances now are!*’

and…

The numbers on whether or not you’re going to recover at 3months 6months and beyond -as far as any are now available-would favour the BPS.

Who you gonna choose to believe?
Who are most people gonna want to believe?


*Disclaimer; Are you, otherwise fit and healthy, young? New around here? You might actually not be doomed forever. But on the whole we don’t really wanna put that up on our sad tragic sick girl/boy posters. However, to demonstrate probity, our expert advisors will throw “you can recover” into an extended mono-tone monologue about how you probably won’t, best we can do I’m afraid. Gotta squeeze some sympathy out of a cold hard public for you people, get some shock value going for the funding stream.

It’s the loud bit, the core message that cuts through not the background filler. If we know this, a charities communications team certainly knows this.

Guess who else’s credibility personally testimony this approach could be undermining…..

Everybody knows, someone at least one probably quite a few someones, who were diagnosed with CFS or ME and are completely fine now thanks to…..
Something, Something.