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

[Amw66]

These two observations mentioned in the NYT article seem like a bit of a conundrum:

[my bolding]

Perhaps the severity of initial acute symptoms is only weakly associated with the onset of ME/CFS following infection, or perhaps long Covid and ME/CFS are similar but not identical, or maybe there is something particularly unique about SARS-CovV-2 that makes it unusually good at inducing persistent symptoms regardless of initial severity. It would be interesting to know what that attribute is.

ETA: Obviously, the genetics of the patient could have a lot to do with this.

Both my kids who had glanfular fever and developed subsequent pvfs did not have severe glandular fever at the time. In fact testing for glandular fever was done after some months as they did not start to recover - backtracked to timing of not feeling well with sore throat for guesstimate of infection. They were not off school for very long for glandular fever itself.

It took my son around 18 months to start improving . During that period he had issues with lymphs ( particularly throat) , crippling headaches ( to extent lumber puncture was done ) , sleep reversal and fatigue. But not fatiguability, no PEM. He was 16, so no paediatric input .

My daughter had headaches and fatigue, with PEM ( though we did not know what that was ) and classic symptoms, many of which the paediatrician was clueless about.

I dread to think where they would be now if severity of onset is a robust predictor.

ETA. Daughter 15 when it occurred.

Perhaps this follows the observation that males recover and females don't.

 

[chrisb]

The severity of the disease at onset being predictive of ME seems incompatible with the idea of insidious onset, which seems to have been accepted since the LA outbreak. Ther seems to be something missing.

 

[alex3619]

The severity of the disease at onset being predictive of ME seems incompatible with the idea of insidious onset, which seems to have been accepted since the LA outbreak. Ther seems to be something missing.

The problem with the Dubbo studies seems to be, from my now not so great memory, we cannot be sure any had PEM, or ME. So we cannot be sure if they were mainly describing prolonged post viral fatigue and not ME. Post viral fatigue can last up to five years from reading I did twenty something years ago. Its highly likely some percentage went on to get ME, but we are guessing as to how many and how fast. Severity of onset linking to severity and duration of post viral fatigue is an alternative explanation, which leaves the question open as to what is the main predictor of getting ME. In this scenario the Dubbo studies failed to investigate anything useful for that question.

A similar issue may occur with long COVID. Many will have lung and other damage, some may get prolonged post viral fatigue, and some may get ME. It will take properly conducted research to differentiate between these. Of course some may have all three, which further complicates any study.

To my current way of thinking the biggest clue from all this, taking the Dubbo studies into account, is that many who had only what would be considered a minor infection and may have been asymptomatic went on to get long COVID. That fits with ME better than other explanations I suspect.

 

[Jonathan Edwards]

The severity of the disease at onset being predictive of ME seems incompatible with the idea of insidious onset, which seems to have been accepted since the LA outbreak. Ther seems to be something missing.

This might appear to be an inconsistency but I am not sure that it is.

If we take ME to be the result of a self-sustaining regulatory failure in a complex servo system such as the immune or nervous systems then it still makes sense. To trigger a self-sustaining problem in theory all you need is a tiny error that creates a feedback loop. The feedback loop might gather momentum slowly from such a tiny perturbance. On the other hand a major jolt to the system from an infection with systemic features might make that process unfold very quickly. You would also expect the chances of triggering a feedback loop to be correlated with the severity of systemic changes.

Autoimmune diseases are almost certainly self-sustaining loops. Some patients have an insidious or stepwise onset, others have a sudden onset. The only intervention we know that regularly induces autoimmune disease is bone marrow ablation and transplantation and the likelihood relates to the intensity of assault on the immune system.

 

[alex3619]

Some patients have an insidious or stepwise onset, others have a sudden onset.

This is exactly how I see onset with ME.

 

[MEMarge]

Both my kids who had glanfular fever and developed subsequent pvfs did not have severe glandular fever at the time. In fact testing for glandular fever was done after some months as they did not start to recover - backtracked to timing of not feeling well with sore throat for guesstimate of infection. They were not off school for very long for glandular fever itself.

It took my son around 18 months to start improving . During that period he had issues with lymphs ( particularly throat) , crippling headaches ( to extent lumber puncture was done ) , sleep reversal and fatigue. But not fatiguability, no PEM. He was 16, so no paediatric input .

My daughter had headaches and fatigue, with PEM ( though we did not know what that was ) and classic symptoms, many of which the paediatrician was clueless about.

I dread to think where they would be now if severity of onset is a robust predictor.

ETA. Daughter 15 when it occurred.

Perhaps this follows the observation that males recover and females don't.

My daughter developed ME after viral labyrinthitis. The initial infection was not too bad, she was nauseous and a bit unsteady walking, but was able to attend a few lessons and study at home. She was 16 and just starting A-levels. The specific balance/nausea symptoms resolved by the end of October, but her energy dropped hugely. Her cognitive function was still OK to continue with some Maths and Geography at home. It was not really till the following Feb that her the cognitive processing disappeared (with respect to A-level study).

 

[alex3619]

Her cognitive function was still OK to continue with some Maths and Geography at home. It was not really till the following Feb that her the cognitive processing disappeared (with respect to A-level study).

I suspect, somewhat speculatively, that the underlying problem puts stress on every organ, and then the organ adapts by decreasing function. Cheney pointed this out decades ago with respect to heart failure, the brain follows in a predictable pattern of decline, with "less important" capacities declining. By less important I mean survival capacities are spared, quality of life capacities can be devastated.

The underlying problem in heart failure is circulatory, declining blood availability. We get some of this in ME due to OI, and possible the new and as yet unvalidated brain OI, but I think mitochondrial respiratory decline might do the same thing.

 

[mango]

Opinion piece about long covid and ME by representatives for three Swedish patient organisations.

Aftonbladet Debatt: Långtidscovid avslöjar brister i vården av MEhttps://www.aftonbladet.se/debatt/a/mBLQjl/langtidscovid-avslojar-brister-i-varden-av-me
https://www.aftonbladet.se/debatt/a/mBLQjl/langtidscovid-avslojar-brister-i-varden-av-me

Google Translate, English

Long-term covid reveals shortcomings in healthcare for ME

[...] Covid patients are not the first to suffer from a disease that the medical and research world is facing. ME/CFS patients have lived in this reality for years, and we owe it to them and their loved ones to take advantage of their experiences.

The pandemic has shown that it is no longer credible to dismiss long-term symptoms after infection or to continue to ignore severely disabled patients. ME/CFS patients are a large group, even if they have not fallen ill at the same time as covid patients.

We therefore address those responsible at both national and regional level with a call and an appeal to now urgently take targeted, powerful measures to best manage both ME/CFS patients and covid patients.

Above all, clinics are needed, to which research can be linked, so that specialist knowledge of each condition can be developed. This concerns both those who have suffered for a long time in silence and those who now risk getting caught up in long-term illness.

 

[Mithriel]

This might appear to be an inconsistency but I am not sure that it is.

If we take ME to be the result of a self-sustaining regulatory failure in a complex servo system such as the immune or nervous systems then it still makes sense. To trigger a self-sustaining problem in theory all you need is a tiny error that creates a feedback loop. The feedback loop might gather momentum slowly from such a tiny perturbance. On the other hand a major jolt to the system from an infection with systemic features might make that process unfold very quickly. You would also expect the chances of triggering a feedback loop to be correlated with the severity of systemic changes.

Autoimmune diseases are almost certainly self-sustaining loops. Some patients have an insidious or stepwise onset, others have a sudden onset. The only intervention we know that regularly induces autoimmune disease is bone marrow ablation and transplantation and the likelihood relates to the intensity of assault on the immune system.

That is very interesting. It explains what I have always thought - that onset has to be sudden for a disease like ME, at one point the damage is not there the next minute it is, but the effects of that damage can take a good while to become apparent.

It also explains why many people who feel they had a gradual onset have ill health occasionally before full blown ME.

Severity of disease was not seen as being very relevant to getting ME in the days before CFS. In fact it was considered that subclinical infections could cause it. What was a risk factor was getting two infections at the same time. One idea was that ME developed when the immune system did not fight off the virus well enough allowing it to evade detection to get deep into the body.

 

[mango]

A Swedish article about long covid. Behind paywall.

Emma lider av långtids-covid: Känns som att huvudet ska explodera
https://www.dn.se/ekonomi/emma-lider-av-langtids-covid-kanns-som-att-huvudet-ska-explodera/

Emma suffers from long-term covid: Feels like her head is going to explode

39-year-old Emma Borgström has been long-term ill with covid-19 for ten months and is now undergoing examinations at Karolinska University Hospital's multidisciplinary clinic for the long-term ill. Photo: Lotta Härdelin

Emma Borgström, 39, has not been able to return to a normal life since she fell ill with covid-19 in March. She is one of the long-term sick young high-performing women who seem to be increasing, according to the covid clinics.

- I was healthy and cycled several miles to work before, today I can barely stand up, she says.

Omni.se writes about the DN article:

Doctor: Mainly young women get long-term covid

People who seek help for long-term covid symptoms are often a completely different group than the ones in the intensive care unit. Judith Bruchfeld, chief physician at Karolinska University Hospital's covid clinic, tells DN.

- It is mainly women at a young age between 25 and 45. The classic thing is that they have been very healthy and high-performing in the middle of life, she says. According to Bruchfeld, there is still no explanation for why this group is more affected than others. However, she hopes that the department will be able to offer a more targeted treatment.

 

[mango]

Another Swedish article about long covid, also paywalled. This one is about the professional ice hockey player Anna Amholt. (An earlier article about her is linked here.)

Aftonbladet/Sportbladet: ”21 timmar vila om dygnet fungerar bra”
https://www.aftonbladet.se/sportbladet/hockey/a/vA3n7L/21-timmar-vila-om-dygnet-fungerar-bra

"21 hours of rest if the day works well"

She got covid-19 in April. Struggled with health 220 days later and was hospitalized for six weeks. But Anna Amholt still has a difficult everyday life.

- I came to the conclusion that 21 hours of rest a day works very well, says the HV71 goalkeeper to Sportbladet.

Omni.se writes about the article:

Ice Hockey goalkeeper: I do not know if I will return

Ice hockey goalkeeper Anna Amholt still suffers from covid symptoms, despite the fact that she was infected already this spring. She says this in an interview with Aftonbladet.

Amholt continues to have problems with fever, flu symptoms and headaches. In November and December, she was hospitalized for six weeks.

In the interview, Amholt says that she needs large amounts of rest to be able to function. At least 14 hours per day, preferably as much as 21 hours.

She does not know if she will be able to play hockey again.
- I do not know at all. I can not answer that question today, she says.

Amholt: If I'm too active, the setbacks come

 

[Dolphin]

 

[rvallee]

Haven't watched it yet. Will likely watch tonight. 16 minutes.

It was pretty good, other than framing it as a unique brand-new thing. Fair account of the difficulties faced, governments and medical institutions are completely oblivious to the problem and offering no help whatsoever. We're at an inflection point where many are facing dire financial difficulties and this is well-explained. I appreciated the framing of what this represents for people who have no one to help them or long haulers who themselves are caretakers, what are they even supposed to do? Frankly this assesses the situation far better than anything published in a medical anything.

The situation in Canada is terrible. The top doctor completely dismissed the issue when asked, punting to provincial services, nevermind that medical research and public health awareness are a federal matter. Medicine is nowhere to be found on the issue. One provincial government (Ontario) was asked and replied with a non-response evading the question. The 6 clinics are run outside of health services, (under)funded by research money.

Way too much is made of the UK clinics, as if this solves the issue entirely. Everyone seems to assume you can just roll up your sleeves and try a bunch of things and it will work itself out by the mere act of trying. Magical thinking rules and rehabilitation is guaranteed if only people just try. Yikes. At this rate we're in for completely wasting the first 2 years with nothing to show for it. What a dysfunctional mess.

They interviewed over 1K patients, did a survey and present the results rather well. Many tried to return to work and simply could not. It could as well have been a report on ME if only about 5-10 words were changed here and there. Same old story, but well-presented.

 

[Mij]

Thanks for the review. I saved myself the distress of watching this.

 

[rvallee]

Tl;DW of the response: we may, at some point in the future, consider thinking about being prepared for an eventuality that may or may not arise and maybe assign one temp or something.

We are at the 9 months mark. Many already fit the criteria and with time many more will too. This is happening now. It's perceived as a problem for someone else in the far future, or whatever. Zero interest.

 

[Arnie Pye]

In Post #3442 by Mango having read this sentence

"Emma suffers from long-term covid: Feels like her head is going to explode"

I wondered if anyone with Long Covid has had the pressure in their heads and spines measured with a Lumbar Puncture?

Perhaps sufferers are developing intracranial hypertension or hydrocephalus?

Edit : Added Wiki links to the two conditions I mentioned.

 

[Kalliope]

Trial By Error by David Tuller: Game-Changing Articles in The Guardian and The New York Times

Many hoped, as I did, that the long-covid phenomenon would bring much-needed attention to ME/CFS itself, as well as greater awareness of the pervasive neglect and dismissiveness to which these patients had been subjected for decades.

Well, that’s happened! ME/CFS officially became Big News on both sides of the Atlantic on the same day–Thursday, January 21. (The first full day of a non-Trump presidency—what a lovely coincidence!)

 

[NelliePledge]

I’m a bit surprised @dave30th didnt mention Jerome Burne as he’s done some decent reporting of ME in the U.K. in recent years.

 

[Arnie Pye]

I’m a bit surprised @dave30th didnt mention Jerome Burn as he’s done some decent reporting of ME in the U.K. in recent years.

I think Jerome's main website is this one :

https://healthinsightuk.org/

I've read quite a lot of his output and I like it.

By the way, it's Burne with an 'e' on the end.

 

[dave30th]

I’m a bit surprised @dave30th didnt mention Jerome Burne as he’s done some decent reporting of ME in the U.K. in recent years.

It wasn't intended as a slight! I'm talking about the large respected media organizations--Times, Guardian, etc--and their regular correspondents.