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

Very sorry to hear of this experience @Shinygleamy.

Would agree with everything @Kirsten has said. It is absolutely not the case that CFS or ME are no longer being diagnosed - you are totally within your right to get a second opinion and choose never to see that GP again. Hope the benefits claim is successful - always such a difficult process, doctors adding to that stress through their own ignorance and prejudice is unacceptable, if their is any capacity to submit a complaint I would, but also completely understand if that is just beyond what your family or brother are capable of right now

Yes it is, but the Welsh government set up an agreement with NICE that they would also use their guidelines. So NICE guidelines officially apply to England and Wales, and unofficially have a significant impact on the healthcare systems of Scotland (to the extent that Scottish government health bodies are waiting on the NICE update before doing anything new themselves) and Northern Ireland and to a lesser extent other countries around the world.
Or at least that's my understanding of the sitch, if there's anything in there that someone can see is incorrect please do say.

 

No
Usually NICE is followed , but not necessarily.
Separate health system.

 

"Capable of", or actually do transmit? Transmit, or merely emit? As someone's pointed out before, if they're simply emitting then many of them will be doing so at 2-3-4 feet from the ground, where they're less likely to be inhaled by an adult of average height. Sounds almost as though they're "Teflon-coated" in some way and the virus is just "bouncing off" them? Are they just "reflecting" the virions back out again, or are they even replicating them and/or splitting them into smaller particles, so to speak?

Sorry, I've probably been reading far too much science fiction ...

 

Irrelevant to my point/question.

Children seemingly contain many more viirons than adults (who it is suggested they infect at roughly double the rate adults do).

They typically show no symptoms, no obvious evidence of immune activation, which probably explains the above.

What stops the virus?

Viruses are simple things, they seem to keep replicating until they can no longer do so - at least this is the public picture presented.

This is, to my understanding, one of the main reasons we even have an immune system, as without some form of opposition viruses will cause so much damage that we die.

So with no obvious immune activation, and high viral loads, what stops the virus from killing them?

Does the same mechanism also work in adults, in addition to the antibody driven immune system? Does this explain how come many adults seem to recover but not have significant, or even detectable, antibody levels?

Shouldn't someone be 'researching' this?

Why hasn't anyone in the media jumped up and down asking such a blindly obvious thing?

Or is my understanding of how the immune system works less than literally everyone else?

 

I say that my ME came on after parvovirus. A colleague at work caught parvovirus some time after I did, and she died from myocarditis....

 

Is she arguing that strokes, pulmonary embolisms and cardiac damage are characteristic of a majority of post covid syndrome? There clearly are such cases and categorisation will no doubt be difficult. But what about the other cases?

 

Although now back in Scotland, I was living in England when a virus triggered my relapse in 2017 after an extended remission.

The GP (senior partner in the practice, supervised GP trainees) put 'viral illness' on my 'Fit Notes' for the first 4 months. At 4 and half months it was changed to 'Post-Viral Fatigue' and so it remained until my last note before leaving work nearly 11 months post-onset.

Both my workplace's Occupational Health doctor (7 months post onset)and the Cardiologist I saw privately(8 months post onset) re my POTS made a CFS diagnosis, & asked appropriate questions re PEM, sleep and cognitive problems.

So not just Scotland.

 

https://twitter.com/user/status/1292731186540875776


Not sure running post-Covid folks through the lottery of these services is something to be encouraged, unless radical change in how they work happens.

 

Oh.

I never thought of that as an upside - current ME/CFS services too busy to push harm on ME patients.

Just as long as people don't start.demanding more services. The last thing we need is more of the same.

 

My understanding is that whilst they may be 'oversubscribed' that this is simply because they shut almost all of them when it emerged that many people didn't want them and wouldn't use them, at least past the first couple of visits.

The remaining ones, e.g. my local one, is in the middle of nowhere, only accessible by car - so far from ideal for anyone who's beyond 'mild', or with cognitive issues (one of the required symptoms to attend lol), or who doesn't have someone able and happy to run them around and sit waiting for hours in a car park.

It might as well be on top of a mountain in Switzerland for all the good it would do me, even if they, y'know, actually operated under a more 'enlightened' philosophy.

 

Headbangingly frustrating.

All this time, effort and energy, the main burden being on the very ill and their carers, to try to stop what is essentially a sham treatment that hurts more people than it helps.

Except where therapists fly under the radar and do what's needed to help the individual (& I can't hold it against them), who then believe they've undergone a treatment that hdlped. Except it wasn't that treatment but the therapist can't say that.

If even half the energy and hardship had gone towards properly conducted and rigorous research we might be in an entirely different place by now.

 

Update: I have had a lovely email from the New Scientist. They don't tend to report on project launches, preferring to report on results. They have made a note to keep an eye on this project.

 

Great work, thank you.

 

MEA Statement: NHS England Guidance on the Management of Post-Covid Fatigue Syndromes
https://meassociation.org.uk/2020/0...e-management-of-post-covid-fatigue-syndromes/

Also posted here, Coronavirus: NHS England launches tool to aid long-term recovery

Moderator note: Please go to the other thread linked above to discuss this. Some posts from this thread have been moved there to keep the discussion together.

 

Podcast. I've not listened to it.

https://www.theguardian.com/news/au...haul-why-are-some-patients-not-getting-better

 

Scotland was well on the way to using the CC for ME until they received a letter from the head of the neurologists in Scotland who said that neurologists would not use the diagnosis and a letter form the head of the GPs saying they would not use the diagnosis either (Can't remember the exact organisations)

Completely coincidentally that would be Michael Sharpe and Clare Gerada.

It astounds me when they say that children don't infect adults because they are too low to the ground! Have they never spent any time round children? My experience is that they crawl all over you, hang round your neck, want picked up, poke their fingers in your nose, ears and mouth and give you big sloppy kisses.

Phased onset ME is a very good description. For many of us there was an initial infection but then things got worse with other infections and life events over the years. (One reason I am afraid of covid taking away the abilities I have left.)

It is not a big leap to thinking that many gradual onset cases were from a mild infection. Ramsay felt that subclinical infections could cause ME.

I don't know if the science is valid or not but we might not notice we have infection if there are none of the consequences of an activated immune system such as fever and so on. But if there is not a strong immune response then the virus can get places where the immune system can't detect it. I have seen people talking about covid speculating that the virus is hiding from the immune system in the nervous system and the testicles.

 

Behind a paywall:

Aftonbladet: Corona kan göra dig kroniskt trött
https://www.aftonbladet.se/nyheter/a/JoV0oj/experterna-varnar-corona-kan-gora-dig-kroniskt-trott

 

Oh, the



That hit piece series just weeks before COVID became widely known was especially poor timing.