News about Long Covid including its relationship to ME/CFS 2020 to 2021

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Yes, the way that people with longcovid describe feeling well and going back to work or exercising then collapsing again fits with my own experience and Ramsay's description.

Many people with glandular fever feel exhausted for months then recover and do not go on to get ME. Similarly, it does not surprise me that some longcovid people are recovering at about 9 months as that is a common experience with a post viral fatigue.

These fatigue syndromes are often worse than ME (at least to begin with) as the fatigue and feeling bad are continuous. While some people with ME did start off very ill it is more usually a variable disease.

The emphasis on fatigue is why people touting cures often claim they had very bad ME because they were bedridden at the beginning but that is not a typical presentation of ME.
 
Mithriel said:
These fatigue syndromes are often worse than ME (at least to begin with) as the fatigue and feeling bad are continuous. While some people with ME did start off very ill it is more usually a variable disease.

The emphasis on fatigue is why people touting cures often claim they had very bad ME because they were bedridden at the beginning but that is not a typical presentation of ME.
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I don't think we can make definite statements about what is a typical presentation of ME. But I do agree post viral fatigue that resolves after 6 months, sometimes longer can involved being bedridden for months at the start, but so can ME.
 
Dolphin said:

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very disappointing that even Maureen Hanson doesnt know that palpitations, tinnitus, chest pain, persistent cough, are not uncommon in ME :banghead:
I know i have had them all since the original virus/infection that set mine off. Tinnitis & palpitations seem very common from my experience of listening to sufferers on social media for a decade. Also i heard plenty of reports of chest pain & odd rashes - ok they dnt crop up in the criteria but thats (imho) because Drs have a tendency to glaze over once one gets past 5 symptoms in one's description.
 
Denise said:
Not sure this is the right place for this - mods please move if warranted.

Long COVID: don’t consign ME/CFS to history
Peter White
I welcome your call for patient involvement in defining the symptoms of ‘long COVID’ (Nature 586, 170; 2020). However, in drawing comparisons with the history of chronic fatigue syndrome, also known as myalgic encephalomyelitis or ME/CFS, you perpetuate a dangerous misconception.

Your use of the past tense — for example, in saying that people with ME/CFS “struggled” to have their condition recognized, they “were not” listened to and the “patient voice was marginalized” — wrongly implies that those problems have been solved. The reality is that the tragic situation continues.

Global research spending on ME/CFS averaged just US$6.5 million per year globally in 2006–15. This received a boost when the US National Institutes of Health committed to more than doubling its spending in this area, reaching US$15 million in 2017 (Nature 553, 14–17; 2018).

Like long COVID, ME/CFS is an intractable, heterogeneous condition. Its causes are unclear, preventing long-term effective treatment. The urgent need for high-quality, imaginative and ambitious research should therefore not be undermined by downplaying the current impact of this condition on millions of people around the world.

In our quest to help people with long COVID, let’s be candid in our portrayal of ME/CFS, the ongoing struggles of those with the condition, and its uncertain prognosis.

Nature 587, 197 (2020)

doi: https://doi.org/10.1038/d41586-020-03136-0

https://www.nature.com/articles/d41...d-id=24D1FA8052751FFA6E3B38C681765021744C9750​
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That surely cannot be by Peter 'Denton' White?
 
Ebb Tide said:
This was on Reporting Scotland last night:

https://www.bbc.co.uk/news/uk-scotland-54893317

'The data suggested that 60,000 people in the UK would go on to experience Covid symptoms for three months or more - a crude calculation based on population means this figure in Scotland is up to 6,000.

Microbiologist Prof Tom Evans, part of the team in Scotland working on the forthcoming guidelines, said this calculation was not yet reliable.

He said: "The data is not that great. Those who are still suffering symptoms after three months is roughly about 2% of respondents - but that is only an estimate and we're very keen to explore those who are probably under-represented in those surveys, particularly older people, those from different ethnic groups and also from deprived communities." '
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Interesting. If the incidence is 1 in 2000 (0.05%), and it looks like it may be, then Long Covid would qualify for inclusion in the European Reference Network (ERN). Anyone know the people heading up the Long Covid charities?

@Michiel Tack
 
Article on possible long-term effects of COVID19 infection using 60 day follow-up of hospitalized patients
https://www.acpjournals.org/doi/10.7326/M20-5661

"Discussion: In this multihospital cohort of patients hospitalized with COVID-19 in Michigan, nearly 1 in 3 patients died during hospitalization or within 60 days of discharge. For most patients who survived, ongoing morbidity, including the inability to return to normal activities, physical and emotional symptoms, and financial loss, was common (1). These data confirm that the toll of COVID-19 extends well beyond hospitalization, a finding consistent with long-term sequelae from sepsis (2) and other severe respiratory viral illnesses (3). Although most patients saw a primary care provider after discharge, 1 in 5 had no primary care follow-up visit within 60 days of discharge. Collectively, these findings suggest that better models to support COVID-19 survivors are necessary (4)."
 
rvallee said:
When less relevant questions are asked... CFQ so not very useful. I have no idea why people go through this trouble only to ask so few questions, so restricted in scope. Did not even ask questions about symptoms, as far as I can see. Only "fatigue", whatever they mean by fatigue.

Includes a half-baked "trial" of hydroxycloroquine or prednisolone. No idea why.


Persistent fatigue following SARS-CoV-2 infection is common and independent of severity of initial infection

https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0240784


Again reaffirming that severity of initial illness is largely irrelevant. Which suggests most of the organ damage plays little to no role in those symptoms.

Unfortunately using a useless tool like CFQ guarantees its irrelevance.

Lots of muddled, and not very informed, discussion of ME. And then there's this, of course:

This:

is probably a hidden variable of past post-viral syndrome, as it's usually misidentified as anxiety and/or depression. Not entirely but probably mostly.

It really seems like the medical definition of "recovery" needs serious changes.

This is poor thinking:
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Article on this study from Medscape. Didn't make me much wiser..

Medscape: Half of COVID-19 Patienst Report Ongoing Fatigue, Study Says

Overall, the patients' fatigue levels were much higher than the typical scores observed in the general population. However, their scores were lower than the criteria used to indicate chronic fatigue syndrome.

...
This lasting fatigue could become a major concern as people recover from COVID-19, the researchers wrote. At the time of the survey, about a third of the participants hadn't returned to work.

"This is of particular concern, given that it is recommended that post-viral infection return to work should take place after four weeks to prevent deconditioning," they wrote.



 
Kalliope said:
Article on this study from Medscape. Didn't make me much wiser..

Medscape: Half of COVID-19 Patienst Report Ongoing Fatigue, Study Says

Overall, the patients' fatigue levels were much higher than the typical scores observed in the general population. However, their scores were lower than the criteria used to indicate chronic fatigue syndrome.

...
This lasting fatigue could become a major concern as people recover from COVID-19, the researchers wrote. At the time of the survey, about a third of the participants hadn't returned to work.

"This is of particular concern, given that it is recommended that post-viral infection return to work should take place after four weeks to prevent deconditioning," they wrote.
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In the text they link to an overview article about CFS/ME by Medscape. I see it's been updated Sept 07 2020.
Is this a new article? Can't remember having seen it before... Just skimmed a bit and it looks good.

Medscape: Chronic Fatigue Syndrome (Myalgic Encephalomyelitis)
 
leokitten said:
Thank you Dr Hanson!

Btw as someone mentioned in the Twitter feed, some of the symptoms she said that aren’t shared isn’t totally accurate.

For me I have frequent tinnitus only since getting ME and much worse during overexertion. I also had bad heart palpitations for first 8 months of ME (~800 monomorphic PVCs per day that I could feel inside my chest like my heart was going crazy) it started right at the end of the viral infection and this was measured by a cardiologist and when they slowly went away it was measured by a cardiologist and of course they had no explanation. I would expect many with long COVID will also have the heart palpitations subside over time unless they have long term heart damage.
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I think that's just an artifact of having never thoroughly assessed the range of symptoms in ME. Studies are always limited to specific symptoms and the kind of research that asks for all symptoms, as patient-lead Long Covid research has done, hasn't been updated in decades.

It's badly needed. Hell, most descriptions of ME completely miss out on neurological symptoms, which is absurd. We need large-scale research ASAP on this, asking for all symptoms and severity. Every last one. This thing where we limit answers because we limit questions is ridiculous.

This has obviously been motivated by the assumption that asking about symptoms "aggravates" them or whatever. But that this hasn't been done in decades is an incredible lapse in relevant information.
 
Adam pwme said:


"There's also been something niggling at me for a long time now when i describe long covid to people often you get the response uh oh it's just post viral fatigue it's me/cfs we've seen those conditions before this is nothing new but it's not i should know because I've had both i know what they both feel like I had post-viral fatigue for a year after after glandular fever back in 2000. And i know what that felt like it was pretty bad but long covid is different it is worse."
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I'm seeing an abnormally high number of long haulers saying they had PVFS in the past, often noting it wasn't as bad (and clearly describing mild cases), massively supporting the hypothesis of a cumulative strain, that past infections leading to PVFS are a likely risk factor in ME. Which, if true, should entirely change how we deal with common infections, the current paradigm being to completely ignore them for the most part as they are assumed to be inoffensive outside of some vulnerable populations.

Which is all ironic because that was the bulk of Gez's previous video, that so many had PVFS, or something similar, in the past.

Obviously the implication of ME makes it so undesirable that everyone is motivated to avoid it, debunking the dumb idea of people "seeking" that "label". But the evidence is getting overwhelming, I noticed many in the past, saying the same, they had it but it wasn't as bad, and in those who continue to be ill longest it seems that much more prevalent.

This kind of study is very badly needed right now and all it takes is for someone with resources to know to ask the right questions and somehow that's not happening because asking the right questions on this topic is like wringing liquid gold from a stone.
 
Adam pwme said:


"There's also been something niggling at me for a long time now when i describe long covid to people often you get the response uh oh it's just post viral fatigue it's me/cfs we've seen those conditions before this is nothing new but it's not i should know because I've had both i know what they both feel like I had post-viral fatigue for a year after after glandular fever back in 2000. And i know what that felt like it was pretty bad but long covid is different it is worse."
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So did he have PVFS and ME/CFS
later (“i should know because I've had both I know what they both feel like”) and then completely recovered from ME/CFS or did he just have PVFS and recovered (“I had post-viral fatigue for a year after after glandular fever back in 2000”)? Confusing and conflicting statements.

Plus I despise when people use their n=1 anecdotal experience and generalize that long COVID and EBV PVFS and ME/CFS are totally distinct disorders and for EVERYONE. Sure you have specific COVID sequelae but most symptoms are same.

I mean seriously, he also doesn’t even consider the huge confounding factor of age, that he got PVFS 20 years ago when he was young and getting long COVID now much older. Dumbass that’s a huge confounding factor that can make long COVID appear far worse or very different!
 
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Post-acute COVID-19 syndrome negatively impacts health and wellbeing despite less severe acute infection

https://www.medrxiv.org/content/10.1101/2020.11.04.20226126v1

Introduction One of the noted features of COVID-19 is the spectrum of expressivity in symptoms among those with the disease, ranging from no or mild symptoms that may last a small number of days, to severe and/or longer lasting symptoms. It is emerging that many patients have long lasting symptoms, several months after initial infection with COVID-19. The aim of this research was to characterize post-acute COVID-19 syndrome (PACS).
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Results 84 individuals with PACS were included. Symptoms persisted at mean (range) 151 (54 to 255) days. The most prevalent persistent symptoms were fatigue (92%), loss of concentration/memory (74%), weakness (68%), headache (65%) and dizziness (64%). Most participants reported increased levels of disability associated with breathlessness, increased fatigue and reduced quality of life.
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Conclusions Persistent symptoms following COVID-19 infection are prevalent, debilitating and appear to affect individuals regardless of acute infection severity or prior health status. More detailed research is required in order to identify specific symptom clusters associated with PACS, and to devise effective interventional strategies.
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Data is reported on the first 84 participants who met the inclusion criteria and responded to the survey (Table 1). Eighty-two (98%) participants reported they underwent clinical testing for COVID-19 via PCR and/or antibody tests, with 33 (39%) positive for the disease on at least one test (Table1). The most prevalent symptoms experienced during acute COVID-19 infection were dyspnoea (82%), fever/chills (79%), tinnitus (75%), loss of concentration/memory (73%) and weakness (70%) (Figure 1).
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Tinnitus had been noted before but this prevalence is... wow.

Noted elsewhere but no difference noted between positive patients and those without a positive test.


(Probably time to do a thread for Long Covid research? Let's say the possibility has morphed into a certainty.)
 
Column in the Union; News for Nevada County, California
Jonathan Hawkins: COVID-19 and chronic fatigue syndrome

People with ME/CFS have watched the unfolding saga of long COVID with deep empathy for sufferers — but not surprise. We know first hand the lingering debility that can follow a viral illness, the despair from a lack of answers and treatment, and what it means for a virus to leave you alive but not really living.

Society’s inability to explain or treat long COVID now is the predictable result of our past neglect of post-viral illnesses. We should all be hoping that long COVID leads to increased attention and research funding for these life-ruining diseases — because they can happen to anyone.
 
Guests: Mady Hornig, Fiona Lowenstein, and David Tuller

https://www.microbe.tv/twiv/twiv-680/


Watched it/listened to it last night in a few sessions.
This is just from memory.
A lot of interesting stuff on the science/biology side for both Long Covid and ME from Mady mostly in the latter half of podcast. About autoimmune system, autoantibodies (much more, but way over my head).
Didn't realise she started her career in psychiatry.
A bit of discussion at the beginning about nomenclature; both for 'long-covid' and ME.
Mady and Fiona both gave their first hand accounts of having Covid-19 and subsequent 'long-covid'.
David talked about the NICE guidelines and what's been going on over here re MUS IAPT etc.

Just overall, so nice to have a group of educated people discussing ME etc who know what they're talking about.
 
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This unformatted list is the Platform modules which are on the NHS "Your Recovery from COVID" list.

Appendix B
Platform modules
• Goal setting • Swallow, voice and communication • Nutrition • Sleep • Pain • Breathlessness • Cough • Fatigue • Fear and anxiety • Mood and emotions • Memory and thinking • Getting moving again • Muscle weakness • Managing my day • Return to work

https://www.england.nhs.uk/coronavi.../52/2020/10/Your-COVID-Recovery-guidance-.pdf
 
When medicine is in doubt the message often goes back to basics. Exercise helps with many conditions, including regular fatigue, so in the absence of proper studies, and ignoring ME research, they promote it as a good option. Its an unfounded hypothesis. There may be many recovering Covid patients who will benefit. This does not necessarily mean that all long haulers will benefit, or even that any will. It may do harm if long Covid is similar to ME, or actually IS ME.

This tendency to go back to basics is a huge reason that many with poorly understood conditions get bad advice.
 
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