Long Covid in the media and social media 2022

Agree, these groups need to publicise their intent and membership at the very least.

 

Has anybody got information about the RE

That's a good point actually some of these groups are peer support groups, I think the research / clinical learning networks should be more transparent

 

I had forgotten about the existence of this group. [Drs With Long Covid] Have they achieved anything? This tweet comes across like the LC issue being used as an opportunity for networking. Initially I was hopeful that such a group may draw attention to issues affecting LC and post-viral patients as they would have a lot of weight with the general public and the media. But this just seems like they have set up a closed group and lobby potentially in private only for the benefit of members of the group. I would be happy to be corrected. I hope they broaden their circle of perceived interest.

(I am sorry, I tried not to be snarky and did my best! It's been two years now since many of us got ill, including me, so I am a little disappointed and frustrated.)

 

Well, if they're happy with the way things are happening they can continue being a closed group no one's ever heard of other than the odd mention like that, having no visible impact on the widespread denial and mishandling of Long Covid.

But the way things are happening is definitely terrible, and the silence of physicians with LC plays into it. If it's because of the discrimination they don't want to face, all the more reason to speak out, this discrimination is immoral and will continue to hurt them. Non-physicians, as we know, have zero influence on health care, if they don't act nothing will change.

They could dramatically change the course of things. It would help them while helping millions. Doing nothing hurts everyone, they have a duty to speak out. Or that's the idea anyway, clearly duty is another meaningless word in medicine, it really refers to complying with rules. It's as if no one expects anything from anyone, no wonder everything's so broken.

 

I completely agree with this. I have been quite stunned by the complete lack of what I would have previously thought was the bare minimum.

And "some have NIHR Grants on LC"? Okay. What grants? What is their theory of the case? What are they hoping to achieve? Who are they helping?

 

Press release published by the Swedish Covid Association today:

IVO riktar skarp kritik mot hantering av postcovidvård
https://www.mynewsdesk.com/se/svens...ritik-mot-hantering-av-postcovidvaard-3171208

 

After producing vaccines and treatments for acute COVID-19 in record time, researchers and drugmakers are turning to finding a cure for long COVID, a more elusive target marked by hundreds of different symptoms afflicting millions of people.

Companies including GlaxoSmithKline (GSK.L), Vir Biotechnology (VIR.O) and Humanigen (HGEN.O) confirmed they had spoken to researchers on trials using their current treatments against long COVID. Others including Pfizer (PFE.N) and Roche (ROG.S) said they are interested but would not elaborate on plans.

https://www.reuters.com/business/he...-begin-hunt-long-covid-treatments-2022-03-25/

 

It's a running gag/gallows' humor in LC forums that the only relevant help and advice they ever got was from... the ME community and LC forums. Meanwhile the ideological bubble of medicine is still harping the same claptrap and selling it, even though it's less useful than the comments section of forums that experts never frequent.

https://twitter.com/user/status/1507413657658880002

 

Questionnaire from Scottish government re LC and employment.

https://twitter.com/user/status/1501640822273413124

 

Merged thread

How covid brain fog may overlap with ‘chemo brain’ and Alzheimer’s, WAPO

https://www.washingtonpost.com/health/2022/03/27/covid-brain-fog-chemo-brain-alzheimers-disease/

or

https://wapo.st/3DdmC8w


Decent article.
Mentions MECFS, quotes Nath.

Mod note: This article refers to a study discussed on this thread

 

Confusing sentence here—are there clinical trials of meds for chemo brain?

“Monje believes that knowing those similaritiesgives the field of research into long covid “a real foundation.” She’s optimistic that some of the symptoms people are experiencing post-covid are reversible, and there’s already talk about testing drugs in clinical trials to treat “chemo brain” for those suffering from severe covid brain fog.”


According to this site, there are no approved meds for chemo brain

https://www.mayoclinic.org/diseases-conditions/chemo-brain/diagnosis-treatment/drc-20351065

Actually weak pipeline for chemo brain

https://ichgcp.net/amp/clinical-trials-registry/research/list?cond=Chemo-brain

 

Article in the journal of the Swedish Medical Association:

Ivo påtalar brister när Stockholms postcovidvård flyttades till Huddinge
https://lakartidningen.se/aktuellt/...kholms-postcovidvard-flyttades-till-huddinge/

 

https://twitter.com/user/status/1507993154372321281


A colleague's (boosted) 19yo daughter is now wrecked: bedbound in a darkened room, 4-5 weeks post "mild" omicron infection. Mum passed on a comment to me—

 

One of my rules of thumb for judging an interview about LC or ME is how many times the phrase 'we don't know yet' is used. The more often someone says it the more credible I'm inclined to think they are. The two interviewees here scored pretty well.

33min audio, ME gets a short mention.

https://www.rnz.co.nz/national/programmes/ninetonoon/audio/2018836119/warnings-about-long-covid

 

Can drugs reduce the risk of long COVID? What scientists know so far

https://www.nature.com/articles/d41586-022-00823-y

 

Long Covid: Experts warn against exercising too soon after virus

https://www.rnz.co.nz/national/prog...-warn-against-exercising-too-soon-after-virus

 

Long Covid isn’t the first illness of its kind — one where a patient has an infection or sickness, but the symptoms never truly go away.

Researchers have struggled for years to understand post-viral diseases like myalgic encephalomyelitis/chronic fatigue syndrome and dysautonomia, a disorder of the autonomous nervous system. Currently there are no cures available. Patients with chronic, post-viral illnesses have often felt misunderstood and dismissed by the medical establishment.

https://www.statnews.com/2022/03/29/nih-long-covid-sluggish-study/