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

Abstract

A significant proportion of patients after SARS-CoV-2 infection suffer from long-lasting symptoms. Although many different symptoms are described, the majority of patients complains about neuropsychological symptoms. Additionally, a subgroup of patients fulfills diagnostic criteria for ME/CFS. We analyzed a registry of all patients presenting in the out-patients clinic at a German university center. For patients with more than one visit, changes in reported symptoms from first to second visit were analyzed.

A total of 1022 patients were included in the study, 411 of them had more than one visit. 95.5% of the patients reported a polysymptomatic disease. At the first visit 31.3% of the patients fulfilled ME/CFS criteria after a median time of 255 days post infection and and at the second visit after a median of 402 days, 19.4% still suffered from ME/CFS. Self-reported fatigue (83.7–72.7%) and concentration impairment (66.2–57.9%) decreased from first to second visit contrasting non-significant changes in the structured screening. A significant proportion of SARS-CoV-2 survivors presenting with ongoing symptoms present with ME/CFS. Although the proportion of subjective reported symptoms and their severity reduce over time, a significant proportion of patients suffer from long-lasting symptoms necessitating new therapeutic concepts.

Open access, https://link.springer.com/article/10.1007/s00406-023-01661-3

 

"Post exertional malaise as cardinal sign of ME/CFS was assessed according to Cotler et al. [23]. Diagnosis of ME/CFS was based on Canadian Consensus Criteria (CCC) and exclusion of other chronic fatigue related diseases"

 

From the original Canadian criteria:

 

The research used the Montreal Cognitive Assessment” (MoCA) screening tool which is a pretty blunt instrument. Bit like the mini mental stare exam. Will pick up those more debilitated. They used a cut off of 26. Not sure how sensitive that'd be in pwME. As they are screening a lot of people it's a good effort as more comprehensive testing takes longer. However, I've not read the whole paper, as they were testing on several occasions there is a learning effect with these tests, so that needs factoring in. In more comprehensive testing there are often several equivalent tests so people are doing a different one each time. Anyway, interesting to see what they found.

Perhaps if the researchers had screened more thoroughly for sleep issues they might have found quite different results? Regarding rates of ME. It read a bit to me as though that wasn't terribly thorough. Might be wrong. I'll try and have another read.

 

Good to see this message is getting through

"It is important to note that physical exercise can be harmful for patients with long-term post-COVID suffering from ME/CFS and particularly from post-exercise discomfort. A study in people with long COVID documented that physical activity led to a further worsening in 75% of patients, and to improvement only in 1% of patients [36]."

 

Some limitations discussed re the cognitive testing. But not the test re-test learning issue. They did collect data from a lot of people and with limited clinic time too.

"Cognitive dysfunction was assessed using the MoCA in our cohort and revealed pathological results in 26.1% of the patients at the first visit. When interpreting these results there are some limitations that need to be taken into account. Most important the MoCA was developed as a screening in the elderly that would trigger more comprehensive neuropsychological assessment. Thus, more subtle deficits in younger post-COVID syndrome patients below the age of 65 might remain undetected. However, it is a simple and in outpatient settings widely used assessment tool, therefore we decided to include it in the analysis. Due to these limitations, a more detailed and validated assay may be useful, when patients report cognitive problems after a SARS-CoV-2 infection."

Some of the classification re depression seems pretty off. Median PHQ-9 of 11 is unlikely to be a highly distressed human. This is in line with previous publications of pwME. Increased distress more than likely due to being ill. Plus we have no pre illness history.

 

Discomfort !!! i wish it was only discomfort.

 

I suspect it is an unfortunate artefact of translation as some online translators translate “malaise” or synonyms to “discomfort”. The authors are German so it is possible that they had to translate parts of their manuscript.

 

So at a first visit at long covid clinic, a third of patients met ME/CFS criteria but at the second visit half of them had improved and no longer met the ME/CFS criteria.

 

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.

It is of course good to have an early recognition of PEM and of the possibility of ME/CFS.

Maybe we need a "pre-ME/CFS" diagnosis that is similar to pre-diabetes to solve this issue?

Or maybe the PEM assessment was bad?

 

Or perhaps it gives some indication of the potential natural recovery rate?

 

Yeah I think this is cause for concern.

I don’t think there can be a good natural recovery rate from ME going by the statistics we have now as well as an extremely broad and coherent anecdotal collection of personal outcomes. This unfortunate picture only comes out after very roughly the 3 year mark in duration of ME symptoms.

Where as for patient who don’t cross over this temporal threshold by either regaining previous function or significantly improving in their health the outcomes are likely to be more favourable.

It’s actually more common than not for the larger proportion of people with extended periods of illness meeting ME criteria or LC of a similar type, to get better. All be it more slowly than demanded by society. With COVID LC or no, we don’t know what long term damage is in store for humanity. But for now people do recover. Like with many other infectious diseases that can have effects lasting years.

I am not comfortable when people suggest early diagnosis with ME is favourable for anyone’s health. To get disability support and to get insurance health or job if you’re fortunate and wealthy enough to have this you need a diagnosis. But the price for this is exclusion from further testing, disability discrimination-your on the scrap heap now-drs don’t want to waste time on investigating for the non economically productive, case closed.

I think people do recover from ME but it seems like this can only happen at an earlier stage in terms of a good opportunity for recovery rather than a total long shot. I think we could all recover, why not?, but we don’t. So waiting it out doesn’t seem to lead to people recovering in higher numbers later on. The body needs some kind of support that it seems most of us can’t get.

So I think there has to be some kind of language and label to describe this.

Otherwise you’re scaremongering people more recently affected with lasting symptoms of the ME type that they’ll never recover, or that the percentage chance they’ll recover is the lowest end of single digits. When although they could move into this group, later on, the statistics as roughly as they currently known are actually really good in favour of recovery. Just waiting it out.

Then in muddling the two groups- early and later in illness- with exactly opposite outcomes in terms of their recovery potential (as things stand) you’ll torment pwME who’ve been affected long enough not to share this statistical advantage with false hope that ‘any day now…’ or that they/we just need to try more of the stuff that’s being promoted to us and we too will be free.

It’s not for no reason that bPSers emphasis early diagnosis, push hard it hard threatening “negative outcomes” and “poor prognosis” if a lack of this would prevent early “treatment” just as hard as “advocacy” charities. I think the people in the charities who promote this mean well seeing the damage done to people left in limbo or feeling “crazy”. But it’s panic reaction that walks us in to a very obvious a trap. Our patients are the good ones with the “serious” “physical” “illnesses”. This leaves the pre diagnosed to the mercy of the elements outside the tent. The goal post are moved by the bPSers and the scramble for “legitimacy”starts again.

What about campaigning for everyone including “crazy” people to not be at the mercy of starvation going unhoused and forced to work themselves to death.

The lack of ambition or solidarity and narrow focus is built into the charity funding model, and despite seeing, that this ‘I’m(one day gonna be) alright jack’ery of pwMEs advocacy on grounds that we are the “genuinely-suffering-disabled” we are of course, but nonetheless this accidentally on purpose, positions us in opposition to the other presumed more trivial or better cared for or non-deserving, due to actually being ‘neurotic’ ‘hysterical’ ‘malingering’ etc…, just fails us over and over, ME to CFS to MUS to FND, to Chronic Pain to LC we might be able restore the good honour of ME but not, all of us. We are gonna be dragging under somehow. Some diagnoses or other will be added to our file. The newbies will have to write begging letters to get tested for ME if and when such a thing becomes available.

We could be campaigning for treatment and respect of, our living beings, food and clean air and water and care for everyone-no matter how imaginative or scared they or we might be not accepting that we need a certain diagnosis to be granted this.

We don’t have money of reputation but we do have experience and numbers. At the moment we’re siloed. And we’re losing fast and winning slowly.

Edit: for clarity.
typos…

 

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.

 

Clinical or research?