Long Covid in the media and social media 2023

[ahimsa]

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:

Because of its wide ranging symptoms and extended timeline, many are wondering if it might be helpful to define long COVID as a type of chronic illness. In fact, long COVID shares many symptoms with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a chronic illness that often makes people severely exhausted to the point where they cannot go about their usual routines. Many researchers suspect that infections are one cause of ME/CFS.

“Infections were thought to be: here they are, now they’re gone,” Schaffner said. “The more we learn about inflammation, the more we learn that some of these infections do have a chronic tail that extends beyond the recovery of the acute illness.”

Doctors diagnose people with long COVID based on the symptoms they’re presenting with.

“There is no biomarker or test that we can order which can diagnose long-COVID,” Karnik said.

...

For Siniscalchi, getting diagnosed with long COVID was a long process, particularly because she came down with symptoms so early on in the pandemic. Siniscalchi said she was so fatigued she could barely lift her head off the pillow, but her primary care physician was initially skeptical that anything was wrong.

“She really gaslighted me, she was like, ‘Amy, I don’t know what to tell you, you’re perfectly healthy,’” Siniscalchi recalled. “And I said to her, ‘I’ve been coming to you for over 10 years. Have you ever known me to complain like this?’”

Siniscalchi ended up getting opinions from a headache specialist she had been seeing, then sought out an infectious disease doctor and a rheumatologist, and eventually connected with an ME/CFS expert in New York City. She later attended a post-COVID care center in the fall of 2020 (without proof of a positive COVID test, she was nearly denied care), and now sees a New York City functional medicine doctor, virtually.

 

[Tara Green]

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.

 

[Art Vandelay]

This is a decent article about POTS following Covid infection:

What is POTS, and how is it related to COVID?
...
“I had the exercise tolerance of a 100-year-old,” says Dr Ahmed Bassiouni, an Adelaide-based trainee ear, nose and throat surgeon whose journey began in July 2022 when he got COVID. The sore throat and fever got better quickly; the fatigue didn’t. “I was getting chest pain and shortness of breath climbing one flight of stairs.”

An ECG and heart enzyme test both came back normal. But one day, after operating on a patient, Bassiouni put a probe on his finger, which showed his heart was redlining at 130 beats per minute (the normal resting adult heart rate is 60-100bpm).

So he scheduled an appointment with Professor Dennis Lau, a heart-rhythm specialist and POTS expert at the Royal Adelaide Hospital. Lau made it official: Bassiouni had POTS and was so disabled by fatigue he had to stop work. “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,” says Lau.

Glandular fever and the flu are two established viral illnesses known to trigger POTS; in 2023, they may have been superseded by COVID.

With PhD student Marie-Claire Seeley, Lau is studying the prevalence of POTS in long COVID. They’ve recruited 120 patients and some early, unpublished figures are in. “About 80 per cent of them have POTS or a degree of dysautonomia [dysfunction of the autonomic nervous system], which is staggering,” says Lau.

Without this test, Bassiouni worries that POTS sufferers might be labelled “psychosomatic and anxious”, a diagnosis potentially exacerbated by ignorance. “Unfortunately, POTS isn’t something we learnt about in medical school,” he says.

 

[livinglighter]

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.

 

[SNT Gatchaman]

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

The British Medical Association (BMA) found one in five doctors with long COVID had been forced to stop work or significantly cut back on their hours.

The BMA surveyed some 600 doctors, with 48% saying they've experienced loss of earnings as a result of long COVID symptoms.

The BMA say those medics need support while they recover.

Professor David Strain, chair of the BMA's board of science, told Sky News: "We cannot afford to have fully trained, very able staff, not able to do the job they've been trained for at this moment, it's a disaster in a health service that is very short-staffed already.

"There are many doctors who've actually retired on health grounds - and feel they're not able to work at all and that in order to be able to get back to work going forward they need to be given additional support - but there are many others who are way too young to have a retirement plan in place but are too unwell to return.

 

[SNT Gatchaman]

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

London, Ont., physiotherapist Leanne Argoso, 45, says she was very active before getting COVID-19, but it's turned her life upside down, and she is now on long-term disability and struggles with fatigue as a long-hauler.

"I wake up and my legs just feel heavy," she said. "When I overdo it, my body gets jittery. It's almost like I'm vibrating and pulsing."

She has trouble concentrating, gets frequent headaches and often has difficulty remembering words.

 

[livinglighter]

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

Doctors have a long history of ignoring particular symptoms and/or complaints. You only have to look at case studies from the medicolegal sector to realise how big this problem is. In multiple sclerosis, it tends to affect the so-called hidden symptoms
...
My main motivation for starting and maintaining MS-Selfie is to empower you with information to counteract such experiences.
...
Medical gaslighting
What you are experiencing is now being referred to as medical gaslighting. Medical gaslighting is:

1. Having your symptoms or concerns be dismissed or ignored without cause.
2. Feeling as if your healthcare provider is blaming you.
3. Your symptoms are written off as being normal without explanation

...
This week’s BMJ covers medical gaslighting and suggests women are more likely to suffer from gaslighting, particularly with ‘health problems such as endometriosis, fibromyalgia, and irritable bowel syndrome’. Worryingly the article states ‘when compared with men, women face longer waits to be given a diagnosis of cancer or heart disease’. The article goes on to imply that medical gaslighting is becoming more common and the term has been ‘used widely in connection with long COVID, particularly early on in the pandemic; with some patients who were still experiencing symptoms months after infection with SARS-CoV-2 thought that they were not treated seriously, or investigated fully’.

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

Many patients with MS who have had COVID tell me that the cog-fog and fatigue of COVID and long-COVID are what MS-related cog-fog and fatigue feel like. If this is the case I now have a greater appreciation for what it must be like to live with MS.

Pathogenesis
Moving onto the pathogenesis; could MS- and COVID-19-related cog-fog be due to the same mechanisms? I suspect yes.
...
A recent animal model of mild COVID-19 (see paper 1 below) shows that systemic infection with SARS-CoV-2 leads to CNS inflammation, which includes cytokine-induced activation of microglia, causing decreased hippocampal neurogenesis and a loss of myelinated subcortical axons. I have little doubt that these same problems are occurring in the brains of pwMS.
Fernández-Castañeda et al. Mild respiratory COVID can cause multi-lineage neural cell and myelin dysregulation. Cell. 2022 Jun 13;185(14):2452-2468.e16.
This syndrome of systemic inflammation causing profound fatigue and cog-fog is not new.
...
The overlap between COVID-19 and MS-related cog-fog beggars the question of whether both are due to viral infections. This is why the recent description that two-thirds of patients with long-COVID had evidence of recent EBV reactivation is so interesting (see paper 2 below). The paper suggests that infections with SARS-CoV-2 trigger EBV reactivation and it may be the EBV that is causing the problem and not the SARS-CoV-2 itself. This is important as chronic EBV infection is associated, in some cases, with chronic fatigue syndrome.
...
As you are aware the association between EBV and MS is now likely to be causal and one hypothesis states that continued EBV infection, i.e. cycling between latent and lytic infection, is driving MS disease activity. This is the reason why we are pushing so hard to test antiviral therapies targeting EBV in MS. Just maybe we should be testing these antiviral agents in patients with long-COVID as well.
...

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.

 

[Hutan]

Some posts about Functional Neurological Disorders (FND) have been moved here:
Functional Neurological Disorder (FND) - articles, social media and discussion

 

[rvallee]

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.

Germany: Demonstration in front of the Bundestag with photographs of fatalities and injured by the Covid Jab Bioweapon

 

[JemPD]

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?

 

[Solstice]

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.

 

[Wyva]

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.)

 

[Midnattsol]

More about prolonged sick leave from covid in Norway, this time focusing on gut symptoms:

Fleire melder om mageproblem etter koronasjukdom
Several people report stomach problems after corona disease

Again data from our Welfare and Disability Institution (NAV), where they've seen people with covid require more sick leave than others. Here it is pointed out that gut issues are not mentioned on the National Institute of Public Health's "Long-covid" site. Signe Flottorp says it is not commonly reported in studies (which while not completely untrue is not exactly true either. Not least one problem being researchers doesn't ask about it and thus it doesn't turn up either).

 

[Kalliope]

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.

 

[Kalliope]

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

 

[Kalliope]

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.

 

[rvallee]

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?

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.

 

[rvallee]

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.

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.

 

[AknaMontes]

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?

 

[Kalliope]

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?