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

But can those of us who think we know our trigger be absolutely certain, especially if 'two hit' theories come into it? Many of us just don't know, especially when it happened decades ago and we went undiagnosed for years.

For instance, my boyfriend was really poorly with EBV the year my ME developed, but I just got a couple of swollen glands and wasn't ill at all; I also had a 24-hour 'surfer sickness' bug that year from swimming in polluted water; both I and a friend who developed ME around the same time had spent years living in mouldy old houses with permanently flooded cellars; and one of us had a tick bite with a bullseye rash from hiking through bracken, but I can't remember which. And it's still perfectly possible it was none of those things...

 

I find it 'odd' that pwME have gone from being at best a deluded and possibly deranged joke, through 'waste of resources and/or potential radical activist assassins' to 'suffering from a serious medical condition'.

Simply because something has happened to a few other people, pwME's health hasn't changed.

Because it's now happening to other suddenly our condition is serious.

It would have been nice if that view had existed last year, or any of the preceding 30

 

Short interview with professor Jonas Bergquist from the Swedish public broadcaster SVT.

I can't google translate it for some reason, but the article gives a few general facts about ME and that prof. Bergquist suspects more reports will occur on post viral fatigue which may develop into ME. Hopefully this is an opportunity to learn more about infectious diseases and ME, says Bergquist. The article also mentions a clinical trial which will start in the autumn, which I assume is the Kynurenine trial (thread here).

SVT: Forskare om ME: Kan öka efter covid-19 (Translation of title: Researchers about ME: May increase after covid-19)

 

Looks like a good article, except from the TedTalk linked in the middle of it titled: "Burn Out to Brilliance. Recovery from Chronic Fatigue - Linda Jones"

ETA: Thought there were something familiar. This seems to be a rewrite of Ryan Prior's CNN article

 

Do people think this is right?
https://twitter.com/user/status/1292417280215855104

 

Chronic Fatigue Syndrome: A Long-Term Effect of Covid19 ?
https://sparkhealthmd.com/chronic-fatigue-syndrome-a-long-term-effect-of-covid19/2775/

 

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.

 

This is more an article about cognitive symptoms than comparisons but ME/CFS gets a mention.

https://www.discovermagazine.com/he...ase-risk-of-memory-loss-and-cognitive-decline

 

Clearly hasn't read anything about ME either, never mind lived it! Though I guess we should make allowances if she's ill. Hopefully someone on Twitter will put her right.

 

What will happen if/when they discover a medication/treatment that improves their health drastically and they return to their previous life? Some of course may not as a result of damage to organs/vascular system depending on the severity.

I saw an Internist back in the early 90's who actually believed in CFS, but didn't believe it developed into a chronic illness and could last 10 years, let alone 30+.

Will we go back to being delusional again when this is all over?

 

Unless some radical and undenyable conceptual breakthrough occurs then I would suspect yes.

Just with many more unwilling 'friends'.

Problem is all the same people, power structures, and vested interests are still in place, and they control the direction things move in, and the end goal.

Their end goal does not appear to include actually acknowledging us, or treating us.

Sorry.

That' just my reading of it.

I hope I am wrong but see little evidence to suggest I am.

 

https://www.nbcdfw.com/news/health/not-all-children-who-get-covid-19-immediately-recover/2422157/
https://twitter.com/user/status/1292436500249010177

https://twitter.com/user/status/1292436974662451203

 

Well I think it's complete bollocks.

EDIT that is a technical term

 

The whole children and covid thing puzzles me.

It appears that most children do not exhibit many, if any, symptoms (to the extent where it was thought they didn't catch it).

Suggesting that most of the symptoms are caused by our own immune system and those in children are not reacting to it, in a traditional manner at least.

Some, thankfully rare, children seem to develop a serious health issue possibly as a result of no immune activation to covid

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

So, in a normal child, who catches covid, has no symptoms, doesn't succumb to the rare complication condition, and who was/has been/is transmitting viirons at 10-100 times the levels an adult would - what stops the virus from overwhelming them?

Why don't they end up a melted pile of nothing but viral goo?

What mechanism is stopping the virus and 'curing' them?

Coz, surely, that's a thing we want to know?

 

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.

 

It would be interesting to see whether the Covid people used a phrase like "dismissed as ME" like the Telegraph used. Some people are assuming that this wording was from the journalist, but I'm not 100% sure.

 

Here's her comment on Twitter on this:
https://twitter.com/user/status/1292095811585802240

For a start, just because some people with Covid have these effects doesn't mean that they apply to everyone.
Also I think the viruses that can lead on to ME/CFS can also have effects on specific organs. For example, the heart. Also, viral meningitis can sometimes cause ME/CFS.

 

I think this is what is called an "evidence based approach". There is some evidence for this, so it can be extrapolated to all cases.

 

Perfectly sensible questions, and my cop-out answer is that the development of the evidence base, if and when it happens, will need to take these sort of points into account.

 

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.