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

[JemPD]

Do people think this is right?

No, and it actually makes me quite cross that people who clearly do not understand ME think they can go around on twitter telling people what it isnt - telling people what PwME do not suffer from.

Not as written or in conception no.

Mikaela Olsen appears to have no lived understanding of what ME is and is therefore making false comparisons.

My symptoms can vary in type, number and severity, in an instant.

After all this time I have still no more than a broad idea, more often an educated hope, of what may be possible for me to achieve in the next couple of hours, and a probable price for doing so.

According to Mikaela Olsen this suggests I 'have' post covid - when in fact I have had ME for 35+ years.

precisely

It is all making me feel ... well, I don't know what I feel.

The variation and unpredictability of when symptoms will attack and what they will be means it can't be ME but that variation is a hallmark of ME. At 6 months after infection I had the same symptoms as 2 months and 52 years later they are the same too, just within narrower lines.

What people with longcovid are describing are nearer to my illness than most descriptions of ME and definitely more like than CFS which does not describe me at all. I don't and have never suffered chronic fatigue as usually I feel fine until I try to do something. That may be just turning over in bed but part of the hell of this disease is constantly feeling a step away from being able to do all the things you want. The days I do feel fatigued and too tired to do anything are easier for me to live with.

I am angry that my disease has been so distorted that it says fatigue to people. The strange neurological things, the odd sensations, the hard to describe pain, vision problems, breathing problems, no one has cared for years.

This. Every word of it.

I am trying to avoid talking about this other than on here because it's just doing my head in

ME sufferers usually learn quickly exactly how much and what activity is possible.

ha ha what a joke! if only it were that easy. You quickly learn that you need to watch out, but it takes yrs, and to be honest never really happens that you know what is possible. I mean you get a rough idea at the extreme ends - eg i can usually walk about 5-10yrds i know 200yrds is impossible & that if i somehow manage to psychically judge things right, the cumulative energy expenditure over the nxt couple of hours, day, & wk/month, then i will not end up so crashed I'm unable to walk at all. But that's the point .... pacing is so hard because it isnt nearly as predictable as the 'develop a baseline & increase gradually' BPS proponents would like. So i quite often do end up able to walk 10yrds at 2pm & unable to even stand up at 2.30pm, without even having done anything especially taxing in between. Thats why the deconditioning twaddle is clearly, twaddle

With Covid you can rest a day and wake up with palpitations.

Coincidentally 2 days ago i rested all day because i hurt my back & had no choice, & had terrible palpitations all evening.

Does she not know that 'palpitations' are anxiety in any case (sarcasm)

Michaela, I am sorry you are suffering, i am suffering too, in very similar ways, and have been for 20yrs. About this you are wrong. You may have spoken to someone with CFS who told you that, but please make sure you research and speak to MANY PwME before you start pronouncing things on twitter, or anywhere else - there is a vast range of experience within the ME/CFS label due to a ridiculous number of dx criteria, and levels of severity.

ETA Completely understand why people wit long covid cannot wrap their heads around the possibility it might be ME though. Its not their fault they are completely mislead about what ME actually is. I know i was utterly outraged when it was suggested to me at the beginning - "i'm not tired, i'm ILL!"
I hope & pray that Michaela and the others do not turn out to have ME, but some kind of self-limiting post viral problem.

 

[Dolphin]

UK
APPG on Coronavirus

The APPG are asking for evidence -

Call For Evidence

We aim to ensure that lessons are learned from the UK’s handling of the coronavirus outbreak so that the UK’s response and preparedness may be improved in future
The All-Party Parliamentary Group is calling for evidence to be submitted to inform its recommendations to the UK Government. All evidence received will be reviewed and submissions of particular interest may be followed up with an invitation to submit oral evidence
https://appgcoronavirus.marchforchange.uk/

The All-Party Parliamentary Group on Coronavirus is taking submissions from the public to feed into their inquiry on the UK’s handling of the coronavirus outbreak.
At this stage, the group is seeking initial expressions of interest from a broad range of parties. Livestreamed oral evidence hearings are taking place each Wednesday on a rolling basis until the end of Summer. Submissions are reviewed on a continuous basis.
https://www.marchforchange.uk/secure_submission_form

 

[Mij]

[Seropositivity for coronaviruses has been reported in a variety of neurologic disorders, which include encephalitis,11 optic neuritis,12 multiple sclerosis,13 and Parkinson disease.14 Virus has also been isolated from the CSF and brain of patients with multiple sclerosis.15 Viruses implicated include HCoV-229E, HCoV-293, and HCoV-OC43. But the significance of these findings is not clear because these viruses are very prevalent and their causative role in these diseases has not been established./QUOTE]

https://n.neurology.org/content/neurology/early/2020/04/09/WNL.0000000000009455.full.pdf

 

[rvallee]

Do people think this is right?

Unfortunately many people compare only to their personal experience and generalize. Sample size matters.

 

[rvallee]

What about ME patient who never fell ill from a viral infection. I've met many who don't describe their experience as post-viral with no recollection of ever having viral symptoms at all. All were slow onset subgroups.

Mild cases probably account for that. Many COVID cases were initially so mild they barely felt ill at all until the ME-like symptoms hit a bit later. Looking back, I did not have that one time of being severely ill, but I had a few mild "feeling oddly ill" times that I would have completely forgotten about. Nobody remembers being ill unless it sticks around. The minute someone feels better they just move on, so mild acute illnesses are easy to miss in hindsight.

It's possible it doesn't explain all cases but it's very likely to explain most, COVID-19 is really making a strong case for it.

Actually, expanding on this, there's no reason why this wild (not a typo) range of symptoms is unique to SARS-CoV-2, from barely feeling ill all the way to total febrile lethargy in bed for days, if we discount the severe respiratory and clotting issues. Mild infections are common, this variation may be entirely common to viral infections and the way medicine is designed basically guarantees this would be completely missed, even if someone stumbled onto it by chance. The hostility towards MUS makes that inevitable.

Then there are the occasional odd illnesses that have no explanation but also seasonal depression, which in total coincidence occurs alongside flu season, not aptly named since the flu virus isn't the only one being favored by the conditions that favor Influenza. Seasonal depression is different from clinical depression and is not explained by anything, mild viral infections causing something like a mild case of general malaise and low energy would actually be the first plausible such explanation.

Most of those cases that resolve naturally go completely unnoticed by medicine. Again, the very design of medicine guarantees that: "just give it a few days or weeks and it will go away". Once it does all relevant information has been lost, the cause has been missed and ignorance simply trucks along.

All of which would be consistent with a probabilistic, rather than deterministic, model of infectious illness, a sort of Drake equation where multiple factors compound to either the immune system taking care of it without breaking a sweat all the way to multi-system disease. Something like this requires medicine to do a massive reform of the scope that physics underwent when quantum mechanics destroyed the elegant beauty of a mechanistic universe. Something that medicine is, again, designed to be hostile towards and will only relent once evidence is overwhelming, evidence that will be missed until then because of decades of failure.

 

[Sly Saint]

Do people think this is right?

"ME sufferers usually learn quickly exactly how much and what activity is possible".
Partially disagree with this; certainly not true to start with ie first few years particularly as I didn't have access to any real information and very little contact with other pwME.
I think things are different now tho with t'internet, but then again it depends on the source of the info.

Plus just when you think you've got it sussed something knocks you for six and you are back to where you started. I think Paul Garner said it (long-covid) was like a game of snakes and ladders.......well with ME, sort of, but without the ladders.

 

[Invisible Woman]

Do people think this is right?

I find it amusing/ironic that this person, who has presumably been ill for a very short time with covid, is telling someone who has published papers on ME related issues and is one of the main people behind the Irish ME Association what ME is.

(Apologies Tom, dunno if you're the chairperson, founder member or man wearing many hats).

Listen, love, if you can't be bothered to listen to people who have a fairly good idea what they're talking about then why should people listen to you?

If you think it's okay to make assumptions about conditions that affect other people, without bothering to check or discuss, then don't be surprised when people do the same to the condition you suffer from.

No matter what the condition may be, there are differences between different patients, still I believe that the variability & unpredictability of ME symptoms is a typical hallmark of the condition - though there may be some who experience this to a lesser degree or not at all.

 

[alex3619]

"'Long covid' is different from ME. Symptoms vary much, much faster and are almost completely unpredictable. ME sufferers usually learn quickly exactly how much and what activity is possible. With Covid you can rest a day and wake up with palpitations."

With ME I can rest a day and wake up with palpitations. I wonder if palpitations can be from either vascular or autonomic issues, and perhaps others such as mineral imbalance.

ME also involves a huge list of symptoms ... and chronic fatigue is not a required symptom. Its often but not universally present, and varies person to person, and over time and in different circumstances.

I am still learning all the time what I can and cannot do ... decades in. There is a lot of inherent unpredictability for many with ME. The longer into this I am the more stable it is for periods, but then wham its in a totally new direction again.

The blood clot issue is likely to be different from most ME patients. However there is growing evidence of local tissue hypoxia, presumably without clots. Clots cut off oxygen supply. ME seems to cut off oxygen utilisation, though the mechanisms are still under investigation.

Though its possible that post Covid is a separate condition, I think its likely to be in the same family of conditions. Alternatively I suspect that the initiating infection does create different issues within the same overall condition. For example, I had both measles encephalitis and a Coxsackie virus. That might differ in some details of presentation to someone with Epstein-Barr, Lyme, SARS, or Q fever, as only some examples.

 

[MeSci]

What about ME patient who never fell ill from a viral infection. I've met many who don't describe their experience as post-viral with no recollection of ever having viral symptoms at all. All were slow onset subgroups.

I was in a slow-onset group, although I was extremely preoccupied with a crisis and didn't have (much) room for anything else, so I can't be sure whether various things were to blame, like a tetanus jab. But maybe it was something even earlier (I seem to recall a bad attack of flu). The onset was so gradual.

 

[Shinygleamy]

Mild cases probably account for that. Many COVID cases were initially so mild they barely felt ill at all until the ME-like symptoms hit a bit later. Looking back, I did not have that one time of being severely ill, but I had a few mild "feeling oddly ill" times that I would have completely forgotten about. Nobody remembers being ill unless it sticks around. The minute someone feels better they just move on, so mild acute illnesses are easy to miss in hindsight.

It's possible it doesn't explain all cases but it's very likely to explain most, COVID-19 is really making a strong case for it.

Actually, expanding on this, there's no reason why this wild (not a typo) range of symptoms is unique to SARS-CoV-2, from barely feeling ill all the way to total febrile lethargy in bed for days, if we discount the severe respiratory and clotting issues. Mild infections are common, this variation may be entirely common to viral infections and the way medicine is designed basically guarantees this would be completely missed, even if someone stumbled onto it by chance. The hostility towards MUS makes that inevitable.

Then there are the occasional odd illnesses that have no explanation but also seasonal depression, which in total coincidence occurs alongside flu season, not aptly named since the flu virus isn't the only one being favored by the conditions that favor Influenza. Seasonal depression is different from clinical depression and is not explained by anything, mild viral infections causing something like a mild case of general malaise and low energy would actually be the first plausible such explanation.

Most of those cases that resolve naturally go completely unnoticed by medicine. Again, the very design of medicine guarantees that: "just give it a few days or weeks and it will go away". Once it does all relevant information has been lost, the cause has been missed and ignorance simply trucks along.

All of which would be consistent with a probabilistic, rather than deterministic, model of infectious illness, a sort of Drake equation where multiple factors compound to either the immune system taking care of it without breaking a sweat all the way to multi-system disease. Something like this requires medicine to do a massive reform of the scope that physics underwent when quantum mechanics destroyed the elegant beauty of a mechanistic universe. Something that medicine is, again, designed to be hostile towards and will only relent once evidence is overwhelming, evidence that will be missed until then because of decades of failure.

Also the possiblity that the virus was picked up years ago, living in their bodies then reactivated by a life event such as pregnancy, car crash, dental work, etc

 

[Shinygleamy]

@Trish

I agree that people with lung or other direct organ damage shouldn't be defined as having ME/CFS--but generally problems from lung damage, like difficulty breathing, aren't MECFS symptoms. If people have organ damage plus ME/CFS symptoms then maybe don't diagnose them so quickly.

The danger of waiting too long to diagnose people with MECFS from Covid, is that a narrative will develop where people will declare that they don't have MECFS, but rather that they have "Chronic Post-Covid". If you ever go onto MECFS twitter there are a multitude of people saying I don't have ME/CFS, but I have a very very similar disease called XYZ as described by Professor ZigZag in 1907. When people say this, your follow-up should be great, how are your fund raising and research efforts in treating and curing XYZ going? In my opinion, people with post-covid MECFS and MECFS from other triggers need to be united to leverage greater fund-raising and research efforts--otherwise we will all be worse off.

There's going to be another issue and that is that even if covid people want a diagnosis of me/cfs, they may not be able to get one. Last month my mother went, with my brother, to our gp to be told that the terms M.E. and CFS were no longer used. He put post viral fatigue on my brother's benefits form (he's been ill for over 33 years, a long time to be post viral), which she had to have changed as it didn't match anything she'd written, we had to settle for Chronic Fatigue. This is happening in Perthshire, Scotland. I hate to think what's gone round our doctors FND, MUS? But no Covid patient will be getting an ME diagnosis from them. To think i'd live to see the day that CFS is now too official and serious sounding to be used. How to disappear a disease in 5 easy steps.

 

[JemPD]

There's going to be another issue and that is that even if covid people want a diagnosis of me/cfs, they may not be able to get one. Last month my mother went, with my brother, to our gp to be told that the terms M.E. and CFS were no longer used. He put post viral fatigue on my brother's benefits form (he's been ill for over 33 years, a long time to be post viral), which she had to have changed as it didn't match anything she'd written, we had to settle for Chronic Fatigue. This is happening in Perthshire, Scotland. I hate to think what's gone round our doctors FND, MUS? But no Covid patient will be getting an ME diagnosis from them. To think i'd live to see the day that CFS is now too official and serious sounding to be used. How to disappear a disease in 5 easy steps.

How utterly absurd. Is Scotland not covers by NICE or the DOH?

 

[Kitty]

It further seems that children are capable of transmitting 10-100 times the virions an adult is.

And yet I heard a government spokesperson today saying [in connection with the commitment to prioritise reopening schools] that the evidence shows children don't transmit it to others.

It appears no-one really knows for sure, and that we're all going to have to cope with the consequence of picking whichever 'science' is most politically appealing...

 

[NelliePledge]

There's going to be another issue and that is that even if covid people want a diagnosis of me/cfs, they may not be able to get one. Last month my mother went, with my brother, to our gp to be told that the terms M.E. and CFS were no longer used. He put post viral fatigue on my brother's benefits form (he's been ill for over 33 years, a long time to be post viral), which she had to have changed as it didn't match anything she'd written, we had to settle for Chronic Fatigue. This is happening in Perthshire, Scotland. I hate to think what's gone round our doctors FND, MUS? But no Covid patient will be getting an ME diagnosis from them. To think i'd live to see the day that CFS is now too official and serious sounding to be used. How to disappear a disease in 5 easy steps.

If it was me I would contact Carol Monaghan MP about this

 

[Wonko]

And yet I heard a government spokesperson today saying [in connection with the commitment to prioritise reopening schools] that the evidence shows children don't transmit it to others.

It appears no-one really knows for sure, and that we're all going to have to cope with the consequence of picking whichever 'science' is most politically appealing...

If children emit 10-100 times the virrons that adults do;

https://www.forbes.com/sites/willia...19-more-efficiently-than-adults/#17b5bd8819fd

then there is no way that they don't transmit it - as far as I can see.

It is advantageous to deny this, given that they need kids back in school to free up their parents from child caring, to get more of the economy running.

But who knows, I guess we'll all have fun finding out.

There was more to this post but it would probably be deemed political so.....

 

[Shinygleamy]

How utterly absurd. Is Scotland not covers by NICE or the DOH?

The Scottish medical officer declared that we were covered by the english NICE guidelines, but I have a sneaky feeling the BPS lot are making the publishing of the new nice guidelines useless by rediagnosing everyone with something else; so that even if the guidelines go in our favour there will be a declining pool of me/cfs peeps for them to be of use.

 

[Mij]

With ME I can rest a day and wake up with palpitations. I wonder if palpitations can be from either vascular or autonomic issues, and perhaps others such as mineral imbalance.

Healthy people can also develop some heart racing when they have an infection. I've read about several post-COVID who developed autonomic issues. I developed OI after a negative reaction to immune modulators that reactivated HHV6 and EBV. Totally changed the level of my disability.

 

[Kirsten]

How utterly absurd. Is Scotland not covers by NICE or the DOH?

In Scotland NICE is less important and not something Doctors have to follow (Although many do, as it's often quite helpful for other illnesses.) But for ME the document that has more power would be the Scottish Good Practice Statement on ME-CFS.
If a dr is saying that ME/CFS is no-longer diagnoses in Scotland, then that is just not true. It can be hard to argue with someone when you're in a vulnerable position, but that is purely that dr's prejudice and not an official position. I would recommend seeing another doctor and submitting a complaint.

 

[MEMarge]

Health is devolved to scottish (and I think Welsh) parliaments. Scotland is not covered by NICE, not sure re Wales.
@adambeyoncelowe @Gecko

 

[alex3619]

Also the possiblity that the virus was picked up years ago, living in their bodies then reactivated by a life event such as pregnancy, car crash, dental work, etc

The other possibility that gets discussed from time to time is not slow or fast onset but staged onset. Each major event, usually a viral infection but not always, increases the severity. Over time you can go from almost normal to even very severe ... its just in stages.

I would not call my problem slow onset, but staged onset, possibly starting with measles encephalitis in 1968, but suddenly worsening in 1985 after a Coxsackie virus infection. I went from mild to less mild, I would not hit moderate to severe for another year, due to yet further circumstances. My most recent stage may or may not be due to a broken leg and a long hospital stay in 2012 or so. Each stage increased my severity.