Long Covid in the media and social media 2023

Why Is It So Difficult for Long COVID Patients to Get Diagnosed and Treated?

https://www.msn.com/en-us/health/me...ents-to-get-diagnosed-and-treated/ar-AA1ddQR0

Long article. I've quoted a couple short sections that mention ME/CFS:

 

I acknowledge this may not be the correct thread to post this on, but it's the closest one I could find. Just in case it helps anyone, my husband has had significant improvement from his LC using Piriton. The Long Covid clinic had advised to try an anti-histamine.

 

This is a decent article about POTS following Covid infection:

 

Patients with ME and LC have even had their medically observed abnormal high heart rate blamed on deconditioning plus anxiety despite reporting symptoms following infection. I’ve yet to hear of a recent NHS doctor/consultant who has followed “We mount a response to a virus and the nervous system gets attacked by mistake, and then the autonomic control of different bodily functions goes haywire.” I think that would be the hyperimmune response theory which has been stated within ME and is now discussed by LC neurology but not everyone has access to the clinics where they use that train of thought because they will only see patients who do not have pre-existing conditions with similar symptoms. I also doubt all GPs are aware the clinics exist which would cut off those entitled even more from attending.

Honestly, symptom management with both conditions comes down to a game of luck depending on who you will/can see and what approach they will take towards you.

 

Sky News: One in five doctors with long COVID forced to stop working or cut back hours

 

CBC: COVID-19 long-hauler now on long-term disability warns others about the 'invisible disease'

 

In this post, @ToneAl linked to a site that I thought was interesting.

Professor Gavin Giovannini, MS specialist, discusses medical gaslighting. He explains patients with MS regularly have their hard-to-deal-with symptoms dismissed. He also mentions that the same is happening with people with Long Covid. He also suspects both conditions could share the same pathogenesis and links MS EBV reactivation to CFS.

His plan for his blog is for patients to use the information to become more informed so they can challenge their medical gaslighting experiences.

Medical Gaslighting
https://gavingiovannoni.substack.com/p/medical-gaslighting#details

Cog-fog and fatigue
Is the cog-fog and fatigue that occurs in relation to COVID-19 similar to that which occurs in people with multiple sclerosis?
https://gavingiovannoni.substack.com/p/cog-fog-and-fatigue#details

More at links.

I think his posts are interesting because we now have researchers claiming MS with FND overlay and there are MS doctors recognising symptom similarities with LC through systemic inflammatory mechanisms, which I'm thinking wouldn't be FND.

 

So, thanks to the continued denial and cover up of Long Covid, antivaccination groups are taking advantage and making false claims about a recent demonstration in Germany in support for ME/CFS and LC. They seem to have hidden any reference or images showing the real nature of the protest.

Now of course there is a significant number of pwLC, and pwME, who worsened because of vaccines, and this continued denial is also massively contributing to the propaganda. Holy crap we are being failed here. We can't even have a normal discussion and evaluation of simple things without the whole issue descending into disinformation because the whole thing is thoroughly politicized.

https://twitter.com/user/status/1677148349516972032

 

that protest looks really powerful @rvallee

Am i interpreting you correctly that antivaxxers are hijacking it pretending it was about covid vaccine damage rather than ME/CFS & LC?

 

It just mostly seem to be bots responding to each other. Nicknames with 18803820 in it are a dead giveaway. I know a few people in real life who'd use this in a heartbeat though.

 

There was a member in my group who lives in Germany and whom I needed to remove a couple of weeks ago because after a while he started to say things like long covid is mostly caused by the vaccines, the vaccinated are in much bigger trouble than the unvaccinated, I clearly know nothing and I am clearly not a member of LC groups because then it would be obvious to me. Even just the mention of vaccines is a horrible mistake and anything positive about them is misinformation. People with my ME/CFS don't understand because they fell ill before the covid vaccines. (Literally half of my group comprises of pwLC, even my moderator is one.)

He is a member of German LC groups on social media and follows the events there closely, so I was wondering if this is where this whole thing came from for him. (There have been other issues with him in the group too, he also spread a lot of misinformation about ME/CFS and was very denigrating towards ME/CFS advocacy efforts without actually knowing or caring about the history, so this was really just the last drop.)

 

Is Long Covid starting to make societal changes?

I've been wondering if a huge increase of chronic illness could help with better adaptations for workers with disabilities, that something good could come out of it as a more inclusive work life. But it's no good if people are forced into starting working. And considering filling jobs with children is pure dystopia. These headlines are worrying.

(Moderators, do feel free to delete if this got too political).

AP News (from May) Kids could fill labor shortages, even in bars, if these lawmakers succeed

Quote:
Legislators in Wisconsin, Ohio and Iowa are actively considering relaxing child labor laws to address worker shortages, which are driving up wages and contributing to inflation. Employers have struggled to fill open positions after a spike in retirements, deaths and illnesses from COVID-19, decreases in legal immigration and other factors.

NBC News Disabled workforce expands thanks to the job boom - and long Covid

Quote:
Latorre said she wanted to get back to work because she has to look after a sister who was diagnosed with cancer.

“People can’t survive on disability, especially with the prices that are going crazy now,” she said.

 

The German Minister of Health on Twitter (auto translated):
Next Wednesday I will present ⁦@C_Scheibenbogen our initiative #LongCovid and #ME /CFS. Useful therapy concepts are slowly being developed. Unfortunately, research into truly breakthrough drugs is underfunded

google translation of the Tagesspiel article:
More help for long and post-Covid patients

 

In the latest This Week in Virology podcast with Clinical update with Dr. Daniel Griffin the paper "High incidence of autonomic dysfunction and postural orthostatic tachycardia syndrome in patients with long COVID" is discussed.

Both Professor Racaniello and Dr. Griffin mention being in correspondence with @dave30th
It seems Dr. Griffin might be confusing the Pace trial with pacing.

The discussion about the paper begins at about 29 minutes

Transcription from 30.21:

Professor Vincent Racaniello (R): I have a question about that last paper.. POTS. It's also something you see in ME/CFS patients. Correct?

Daniel Griffin, MD (G): It is. It is.

R: So that's interesting that there are two common symptoms in these two different diseases or syndromes. Right?

G: So now you're getting yourself into trouble. I don't know if you know about this, Vincent, but there's actually a lot of (laughs) controversy right about, like, sometimes people with Long Covid people feel like "oh, the ME/CFS folks are stealing our narrative". Are there commonalities? It's really an interesting challenge.

David Tuller and I, we've been e-mailing a little bit here and there. We talked a while back.
Some of the stuff I think.. you know, if you're familiar with the ME/CFS literature, that can actually help you interpret some of these things.

We talked about pacing, David and I, where subjectively people felt better, but if you looked at the.. with actually monitoring how much activity they were doing, I'm not sure you were seeing the increase in activity we're hoping for. The cognitive behavioural therapy again, they felt less fatigued they felt able to do more,
but if you actually monitored it, they're not actually doing much more.

I think that you can learn from a lot of the mistakes in the ME/CFS literature. Hopefully that will help us. And I am hoping there is some commonality of mechanism here, so that when we help one population, that we can get some help from the other as well.

R: Yeah, I think you could say that if they're both the same, then people get mad at you, right? And I understand that.

G: Yeah. We're not saying that (laughs)

R: There are commonalities which can help you understand both, right? That's the whole point.
POTS, clearly, is in a fraction of both patients, so you have to use that to drive your understanding. It's all I'm saying.

Don't get me in trouble.

G: Ok. (laughs)

R: I did get an e-mail about pacing, because last time I said Tuller has been writing about pacing, and someone wrote and said: pacing is actually good, but I wrote Tuller and he said, well it's not really a therapy, right, it's just a way of..

G: yeah, I think that's the tough thing. If you look at this actigraphy that they do where you're actually able to monitor this is what David comments about. They had that data, right. So they said oh, look pacing , people who did pacing, they felt better, people who stuck with pacing had less fatigue. And they had the data on the actigraphy and they said... they should have published that I think for full disclosure people are feeling better, there is subjective improvement, but the way we're not seeing the improvement performance that you would expect to go along with that. You know just full disclosure makes sense.

 

Yup. There is a component of vaccine-induced LC to the protest, however, and that makes it so damn complicated. If only we had, I don't know, something like... experts, people who can work with difficult topics, who can work out underlying connections and features and figure out what's true and how it works.

Or something like that. One can dream.

 

Very low effort, this is seriously cringe. They didn't bother researching this much, it's completely superficial compared to what the average, average!, patient knows. None of this is complicated, it's so obvious that basic facts are too controversial to state out loud. Medicine in many ways is still stuck in medieval times, except they're not Galileo, they're the damn church suppressing the truth for mere political and ideological reasons.

 

David comments about. They had that data, right. So they said oh, look pacing , people who did pacing, they felt better, people who stuck with pacing had less fatigue.

Chaos. What in blazes is he talking about? People with M.E. pace to prevent deterioration. There may be a slight improvement, some may find significant improvement but the priority is to prevent decline? How did this confused interview even get airtime?

 

I wonder if Dr. Griffin might belive that pacing is the treatment protocol from the PACE trial?