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

Collaboration intensifies

https://twitter.com/user/status/1410673903651938310


Iwasaki is an immunologist running a study on Long Covid prevalence in vaccinated people (and I think also the effect of vaccines on long haulers?) and also been cited many times in the last year in articles, seems motivated to research beyond LC.

 

Article in Discover Magazine on Long Covid. Experts quoted are Walter Koroshetz and Daniel Chertow from NIH, and professor of radiology Gholamrezanezhad.
Garner is mentioned as a recovery story.

What We Know and Don't Know About Long COVID

Quote:
Many of the theories about long COVID aren’t mutually exclusive — it could be a combination of various biological responses. Post-viral conditions are not entirely uncommon, and can cause similar symptoms: chronic fatigue, lingering pain. Historically, the treatment for these conditions has largely been managing symptoms. Some see COVID as an opportunity to learn more about post-viral conditions generally.

 

Why do people keep repeating this obviously false claim? If only we had anything to manage symptoms things would be so much better. Suffering symptoms and managing symptoms are entirely different things, when they are managed it's when you've alleviated at least some of the suffering. "You're on your own" is obviously not "management" in any shape or form, that's just neglect, dereliction of duty, whatever.

Symptom management is systematically refused to most. Sometimes smugly. Why are blatant lies so common out of medicine? None of this is true, it's never been true, it's literally one of the most common complaints that we have no help or support whatsoever.

That will be the day, when obviously false statements are restricted to historical accounts.

 

Didn't most of the recent LC funding go to GP practices? Which obviously is not even close to be capable of handling this. Even in normal times it wouldn't be, but when you add well over a year of backlogs in basic screening, GPs are the last place where this can be handled properly.

Hopes and dreams do not make a plan.

https://twitter.com/user/status/1410895074226016258

 

Supposed success story treating long covid with a med called BC007, “directed against g-coupled antibodies”, developed by a group called BerlinCures. Anyone know anything about this? Being discussed on Twitter under hashtag #bc007.

https://translate.google.com/translate?hl=&sl=de&tl=en&u=https://www.br.de/nachrichten/wissen/erlanger-aerzte-heilen-erstmals-einen-long-covid-patienten,Sc0sNcQ

https://translate.google.com/translate?hl=&sl=de&tl=en&u=https://www.nordbayern.de/region/durchbruch-in-erlangen-weltweit-erster-patient-mit-long-covid-syndrom-erfolgreich-geheilt-1.11188786?fbclid=IwAR2M87Bh7cjJK16hQnRSQ58sVrOrCRYZhPiqSElK5Dw8Z2q24xU0GCUVN2w

One of the founders apparently developed immunoadsorption as well:

https://berlincures.de/the-team/
“Dr. Johannes Müller is an accomplished physician, researcher, innovator and entrepreneur with over 20 years of clinical and executive leadership experience in biotechnology and medical device companies.

He pioneered the development of immunoadsorption, a process for purifying the blood of autoantibodies implicated in heart failure, and led the first clinical trial to evaluate the effectiveness of immunoadsorption as a heart failure treatment.

Today at Berlin Cures, Dr. Müller leads the development of BC007, a DNA aptamer compound designed to more efficiently achieve the same results as immunoadsorption by binding to autoantibodies and removing them to improve heart function and to reduce the need for heart transplantation.”

 

Chances that they are aware that this is the ME they have vilified and disrespected for so long? That this is the worst-case scenario for Simon Wessely's horrible career, his lies revealed?

About 0%. Especially as Wessely chaired the last webinar on this topic by the RSM just a few weeks ago.

https://twitter.com/user/status/1410584790429048835

 

Do we have any idea yet whether the vaccine reduces the chances of long covid? As in, if you catch covid after being vaccinated, are you less likely to get long covid?

I guess it's too early to know but wondering if there are any thoughts about this? Do we know of anyone who was vaccinated early who has got long covid? Is there any reason to think that it would or wouldn't have an impact?

 

No one is reliably counting Long Covid yet so no way of knowing without a large prospective study. I'm aware of plans to do so but don't think it's started yet.

The CDC have said they have no plans to even consider counting LC. Governments want to open up, LC stands against this and will likely be brushed aside more forcefully until long haulers understand nothing will happen unless they force it to happen.

 

There still is no widely agreed upon definition of LongCOVID. CDC has long shown itself to be very reluctant to track things that aren't widely accepted.

[EDIT TO CLARIFY - They don't seem to like to take a stand against established beliefs.]

 

https://twitter.com/user/status/1411664154138759169

 

from that thread
https://twitter.com/user/status/1412014154181926919

 

..yes, and does the covid vaccination have any impact on an existing MECFS ?

 

That's the 100 million dollar question as far as we're concerned, and I doubt if we'll know for a long time. My guess is that in the case of auto-immune disease, such as my own, I think, it might well worsen it. That's why I don't have the flu jab.

It might also depend on whether one has already had the disease (COVID-19). I think I have. But until I succeed in self-administering the testing jab (failed last time, have to wait another month to try again) I won't know if I have or not.

 

https://twitter.com/user/status/1412061751143710729

 

https://twitter.com/user/status/1412061083351797761


Results are validating!

 

There is a thread about that here https://www.s4me.info/threads/covid-19-vaccination-experiences.19645/

Basically some, maybe the majority, are fine after a few days while some are not. It is the same with the flu jab. Nothing about ME is easy. The only thing you can try to do is weigh up the risk you might have getting the vaccine against the risk of getting the disease and how badly you think it will affect you if you do.

For myself, I have grandchildren I want to see so risk of getting disease high, I have been fine with most other jabs but I have deteriorated badly with flu. So I have had both injections with no ill effects.

 

I haven't watched this myself so far

https://www.youtube.com/watch?v=Svrl7rVQsc0

 

There has just been a scientist on BBC Radio 4 saying that it's not yet known whether vaccination prevents Long-COVID, and that it might take a long time to know.

 

Just seen the news about masks and distancing in uk to go- highly irresponsible and anxiety- making for many of us with compromised immunity.
Long covid seems not to feature in the decision...

 

I heard a BBC news interview yesterday with professor warning about Long Covid and the interviewer saying something along the lines of, 'But the data on that aren't in' and the professor quoting the huge ONS stats on Long Covid back at her. Very weird blindness to Long Covid, as though hospital deaths are the only metric.

I'm also worried about the relaxing of all restrictions. I continue to shield, and haven't stopped since the pandemic began.