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

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.

 

It really looks as if medicine intends to bury this entirely and either pretend it never happened or push it in the psychosomatic void of doom. Since it's easy for governments to find medical advisers arguing that, it seems that they did.

And since the public message is obviously one of trivializing it or pretending it's not happening, most long haulers point out that almost no one around them believes them, so an AIDS movement kind of response seems unlikely since that takes healthy allies. Add a divide-and-conquer approach to pin those who recover against those who don't, vastly outnumbered...

Easy to see how this happened in the past and why medicine is oblivious to it. This is as easy as putting a pillow on a comatose patient to end them. Lake Tahoe was a small textbook example, it's a tourist town and the tourism must return, other peoples' lives are worth the sacrifice.

https://twitter.com/user/status/1412033343164669953

 

Would be interesting to know who it is at the BBC pushing that line. Is it the science editor? Does he get briefed by the usual source?

 

Also, Professor Spiegelhalter said at about 13.40 that his chance as a double-vaccinated 67-year-old of dying from COVID was greater that of a 30-year-old unvaccinated person! And that most COVID deaths now were of vaccinated people...

The bit about long COVID is at about 15.10. It seems to suggest that more will be known in a few months. I thought they had said 10 years...

The broadcast is at PM - 05/07/2021 - BBC Sounds