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

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Shinygleamy said:
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.
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Very sorry to hear of this experience @Shinygleamy.
Kirsten said:
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.
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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

MEMarge said:
Health is devolved to scottish (and I think Welsh) parliaments. Scotland is not covered by NICE, not sure re Wales.
@adambeyoncelowe @Gecko
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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.
 
Wonko said:
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?
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"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?
 
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Dolphin said:
Here's her comment on Twitter on this:

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.
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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....
 
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.
 
Well for the sake of post covid patients, I hope they aren't being sent to the service run by Chalder and co. They still do CBT based on false illness beliefs and increasing exercise and are oblivious to the harm they are doing and lack of success of their treatment, if their latest publication is a fair representation of their thinking.
 
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.
 
The only basis that would be worth anyone’s while is if there was a genuine overhaul of their approach. Of course there’s likely to be some degree of revamping IF the ME guidelines change next year. The battle after the guidelines will be over the manual. And the one after that will be how the manual is put into practice.

Meanwhile it would be interesting to see how these long Covid patients were handled given the NICE statement about GET. I can just hear “we don’t do GET anymore, at least not based on PACE so we don’t need to change anything.” But I wouldn’t wish it on anyone without informed consent due to the risks.
 
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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.

:banghead::banghead::banghead::banghead::banghead:
 
JellyBabyKid said:
Having a skim of this week's contents on the website : https://www.newscientist.com/issue/3292/ it's looking like my email didn't make any difference. Will double check when I download it tomorrow though.
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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.
 
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Podcast. I've not listened to it.
The Guardian’s senior international correspondent, Luke Harding, was struck down with symptoms in March that were being increasingly reported throughout the country. He had a shortness of breath and chest pains, and although he was unable to get a test he was certain it was Covid-19. Five months later, he tells Mythili Rao, he is still suffering.

It’s a growing issue. Hundreds of people are forming online communities to discuss myriad long-term symptoms, from headaches and digestion issues to nerve damage and searing lung pain. Paul Garner, a professor from the Liverpool School of Tropical Medicine describes his own long-haul Covid-19 experience and how a blog post for the British Medical Journal led dozens of people to approach him. One of them was Iulia Hammond, a junior doctor still not back at work five months after first developing Covid-19 symptoms.
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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.
 
mango said:
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
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Oh, the

8cf.jpg


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