Long Covid in the media and social media 2022

[Kalliope]

NPR How long COVID sheds light on other mysterious (and lonely) chronic illnesses

An interview with Meghan O'Rourke. There's also a 43 minute audio interview which I haven't listened to yet.

Quote:

The reason I [say] autoimmune diseases and chronic fatigue syndrome or myalgic encephalomyelitis and chronic Lyme disease and fibromyalgia ... are today's "hysteria" is that ... in the research I did you can see medicine is incredibly uncomfortable with areas of uncertainty, diseases it can't measure, diseases it doesn't have a really clear handle on. And so when ... anyone who has one of these diseases goes into a doctor's office and says, "Doctor, I'm experiencing fatigue, I'm experiencing brain fog; it comes and goes," you very quickly get to the question of whether you're anxious. ...

 

[Denise]

NPR How long COVID sheds light on other mysterious (and lonely) chronic illnesses

An interview with Meghan O'Rourke. There's also a 43 minute audio interview which I haven't listened to yet.

Quote:

The reason I [say] autoimmune diseases and chronic fatigue syndrome or myalgic encephalomyelitis and chronic Lyme disease and fibromyalgia ... are today's "hysteria" is that ... in the research I did you can see medicine is incredibly uncomfortable with areas of uncertainty, diseases it can't measure, diseases it doesn't have a really clear handle on. And so when ... anyone who has one of these diseases goes into a doctor's office and says, "Doctor, I'm experiencing fatigue, I'm experiencing brain fog; it comes and goes," you very quickly get to the question of whether you're anxious. ...

As if the unpredictability of symptoms isn't sufficient reason for the person to have anxiety....

 

[Mithriel]

NPR How long COVID sheds light on other mysterious (and lonely) chronic illnesses

An interview with Meghan O'Rourke. There's also a 43 minute audio interview which I haven't listened to yet.

Quote:

The reason I [say] autoimmune diseases and chronic fatigue syndrome or myalgic encephalomyelitis and chronic Lyme disease and fibromyalgia ... are today's "hysteria" is that ... in the research I did you can see medicine is incredibly uncomfortable with areas of uncertainty, diseases it can't measure, diseases it doesn't have a really clear handle on. And so when ... anyone who has one of these diseases goes into a doctor's office and says, "Doctor, I'm experiencing fatigue, I'm experiencing brain fog; it comes and goes," you very quickly get to the question of whether you're anxious. ...

I don't think she realises about MUS and FND which is frank about being a scientific justification for the concept of hysteria.

I can see someone coming to this thinking it is a dismissal of the patient to fob everything off as anxiety but the truth is that doctors are told there is good research proving these illnesses are genuine diseases of the class Medically Unexplained Syndromes with a specific subcategory or sister disease of Functional Neurological Disorder.

It may seem a subtle distinction but the fight is not against everything being claimed to be anxiety but proving an established medical categories with "successful" treatment protocols are wrong. Think of the fight to prove the germ theory of disease or that ulcers were caused by a bacteria.

The hopeful thing is this sort of edifice usually falls suddenly and the quickest way to do it is to find a treatment which obviously works.

 

[mango]

A news article in the journal of the Swedish Medical Association. (ME is not mentioned.)

»Det går inte att överskatta vad det gör för psyket att kunna jobba igen«
https://lakartidningen.se/aktuellt/...-vad-det-gor-for-psyket-att-kunna-jobba-igen/

Google Translate, English

"You can't overestimate what it does for the psyche to be able to work again"

Her fever lingers and her energy is still limited - but with adapted tasks, paediatrician Cecilia Chrapkowska has found ways to come back after her sick leave. Two years after she contracted covid-19, she is now able to work 10 hours a week. "If there's anything that speeds up my recovery, it's feeling like I'm participating in normal life again," she says. [...]

Judith Bruchfeld, a specialist in infectious diseases at Karolinska University Hospital in Solna, Sweden, says [...]
- Much more research is needed to understand the mechanisms involved. We can improve the physical well-being and to some extent the quality of life of these patients, but we still cannot cure them. Not all of them have recovered in these two years,' she says. [...]

- You need to be allowed to be a patient even as a doctor, and that's difficult if you don't have a doctor who knows as much as possible about your illness.

At the same time, [Chrapkowska] doesn't just want to be seen as a patient.

- It's been very rehabilitating to meet doctors who can both take a comforting role when needed, and then switch to being a colleague and discussing the latest research with me. [...]

She is also taking part in a study led by Anders Kjellberg, which is investigating the effect of pressure chamber and oxygen treatment on post-covid patients. In total, patients receive ten treatments of one and a half hours each at a pressure equivalent to 14 metres.

- Many people think that post-covid is essentially a case of vascular inflammation. If we can calm down the inflammation, these patients might recover," he says.[...]

Although [Chrapkowska] has met "fantastic health professionals", she has been upset by what some doctors and journalists have written: claims that post-covid is psychosomatic or that patients are made sicker by having their symptoms investigated. [...]

Judith Bruchfeld finds it remarkable how postcovid is seen by some as a cultural disease.

- Electrosensitivity and apathetic children have been typically Swedish phenomena. But postcovid is seen all over the world. It is a global disease recognised by the WHO. I find it hard to understand why people would question the fact that a completely new virus can cause side effects that we have never seen before,' she says.

Cecilia Chrapkowska does daily rehabilitation exercises and goes for regular check-ups with a pulmonologist and cardiologist, as well as a physiotherapist, occupational therapist and specialist optician. A number of medicines help her to have more energy and to concentrate. Beta-blockers and sinus blockers lower the heart rate, and antipyretics are also needed to keep the temperature from rising too high.

Medication and compression garments have helped her improve a lot. Although she still has a daily fever, chest pain and difficulty breathing on exertion, she can now stand up briefly to cook. The power wheelchair helps her to conserve energy.

Psychologically, too, there is a big difference, mainly because she has started working. [...] Stina Klemming has arranged for her to have her own workroom, where a couch or hospital bed will fit, so that she can work lying down. Stina Klemming, a neonatologist, draws inspiration from her work with fragile babies.

- I have assumed that it will be difficult with all the new sensory impressions for Cecilia. That's why there will be a sliding wall so that she can shield herself properly. We know that sensory input can be very stressful, which is why they put blankets over incubators, for example. Everything around these small children should be calm and soft and gentle. That's what I want to do around Cecilia too," she says with a laugh. [...]

In addition, Cecilia Chrapkowska was one of the first to have post-covid classified as an occupational injury, which means she is financially compensated. With a salary and collectively agreed compensation from her employer, plus reimbursement from the Social Insurance Agency and AFA Insurance, she receives the same amount each month as if she had not become ill.

- This allows me to spend less of my time worrying and grieving and more of my time being curious and interested. I find infectious diseases very exciting and I enjoy reading research results that provide keys to what has gone wrong.

 

[ahimsa]

Article in the Washington Post reports that US Senator Tim Kaine (also former vice presidential candidate) has introduced a bill for Long Covid research:

Kaine introduces bill to research and combat long covid, after suffering it himself

https://wapo.st/3C6nL18 (Washington Post gift link, no paywall for 14 days)

The Comprehensive Access to Resources and Education (CARE) for Long COVID Act would centralize data about the experiences of people who have long covid, fund research into the effectiveness of treatments, and expand educational and community resources so people experiencing lingering symptoms know how to get help.

As The Washington Post reported last week, long covid has baffled scientists, and the true scope of how many people it has affected is unknown. High estimates suggest over one-third or even roughly half of the 80 million Americans who have had the virus developed long-term symptoms, and low estimates put that figure in the single-digit percentage range.

 

[ahimsa]

Another quote from that Washington Post article on The Comprehensive Access to Resources and Education (CARE) for Long COVID Act:

... on Wednesday, [Tim] Kaine joined Sens. Edward J. Markey (D-Mass.) and Tammy Duckworth (D-Ill.) in introducing a bill to fund research into the long-term effects of the disease and expand treatment resources for people experiencing them.

Sen. Markey has been supportive of ME/CFS research in the past. This post is from May 28, 2020:

https://www.markey.senate.gov/news/...unding-in-upcoming-coronavirus-relief-package

EDIT: Corrected the date of the old Sen.Markey press release.

 

[ahimsa]

Tweet from Solve M.E. showing that ME/CFS and Fibromyalgia are included in the text of the Comprehensive Access to Resources and Education (CARE) for Long COVID Act.

Link from the tweet goes to a PDF with full text of the bill:

https://solvecfs.org/wp-content/uploads/2022/03/care_for_long_covid_act.pdf

 

[Kalliope]

The Atlantic The Virus That Causes Mono Does a Lot More Than That by Sarah Zhang

Quote:
The debilitating fatigue associated with long COVID and other post-viral syndromes does look, in some ways, like the fatigue caused by mono. And in the 1980s, doctors noticing the similarity had begun diagnosing chronic Epstein-Barr virus syndrome in patients whose mono-like symptoms of fatigue and sore throat did not go away for months. Eventually, however, experts took Epstein-Barr out of the name and gave it the more general term of chronic fatigue syndrome, because EBV does not seem to be the sole cause of such symptoms.

Chronic fatigue may have several different explanations, but the virus may still play a role in some cases even after mild infections, says Hank Balfour, a pathologist at the University of Minnesota. He has also described cases of “chronic mono,” in which a severe initial EBV infection triggers mono symptoms that either linger or recur for months or even years. Mono’s acute phase typically lasts for weeks, which is already unusually long for a virus but is well documented. There isn’t much research on chronic mono though, and the diagnosis is not widely accepted among doctors. “It needs, I think, more attention,” Balfour says. Long COVID remains a baffling consequence of the novel coronavirus, but even the long-term consequences of very common viruses like EBV are poorly understood.

 

[rvallee]

I did a quick skim of the bill and it's not bad. I didn't go through it all to find funding but it looks on the order of maybe $100M in total. So not really big enough to change everything but enough to work with.

More importantly, and because legalese is painfully precise and accurate: it explicitly and consistently extends the entirety of the efforts to "other similar post-viral conditions" and it explicitly lists ME, POTS and other chronic illnesses (can't remember if I saw fibromyalgia). So all this funding should be available for the whole disease category, not just Long Covid.

There was also a report recently published by the GAO (Government Accountability Office), an independent body tasked with evaluating the costs of legislation or doing research for societal impacts that informs legislative efforts. It's rather good, frankly far above the average of what medical institutions have produced so far in terms of understanding the problem. Which is on brand. But it's blunt and sober about the scale and economic impacts. It should be powerful evidence to get this bill passed. I only quickly skimmed but I only saw a few mentions of "chronic fatigue syndrome", only term I noticed. But it was neutral and stuck to the evidence, it's refreshing not to have the usual opinion-based speculative nonsense.

It would really be great if there were some oversight of the NIH efforts, though. Their insistence with avoiding anything that even smells of prior post-infectious illness is really wasting most of their efforts and they generally don't seem to take this seriously, likely because no one is doing any oversight. The NIH initiative is so far as unimpressive as it gets for its size, it really doesn't look like a billion-dollar effort.

Edit: actually, since I haven't seen it published, the GAO report: https://www.gao.gov/products/gao-22-105666. Accountants are biased for accurate numbers, it's a good bias to have here.

 

[ahimsa]

...it explicitly lists ME, POTS and other chronic illnesses (can't remember if I saw fibromyalgia).

Fibromyalgia is included. Here's an extract from the bill:

(2) illnesses related and often co-morbid with PASC, which may include -

A) myalgic encephalomyelitis/chronic fatigue syndrome and fibromyalgia;

B) postural orthostatic tachycardia syndrome and other forms of dysautonomia;

C) autoimmune diseases associated with viral triggers;

D) connective tissue diseases exacerbated or triggered by infections;

E) mast cell activation syndrome;

F) related conditions and illnesses that may affect adults, young adults, or children; and

G) other conditions, as the Secretary determines appropriate;

I hope this helps, but I want to add that I'm definitely not able to read and fully absorb the details from this bill!

 

[Snowdrop]

News from the US:

https://www.ctvnews.ca/world/tim-kaine-with-long-covid-19-himself-introduces-research-bill-1.5804701

That's going to put a burden on our health-care system," Kaine said, "and it's also going to require some research and some understanding, compassion, for people dealing with these symptoms -- adjustments and accommodations in the workplace. There's going to be a lot of consequences of this."

I expect the ctv news piece is from a Washington Post article I don't have free access to.

 

[ahimsa]

I expect the ctv news piece is from a Washington Post article I don't have free access to.

I posted a "gift" link to that Washington Post article so that non-subscribers can read it:

https://wapo.st/35O8hmf

Gift links have no paywall for 14 days (first posted on Wed, Mar 2nd, so add the 14 days to that). After that time the link "expires."

In the future I'd be happy to post other gift links to Washington Post articles about ME/CFS or Long COVID. As a subscriber I get 10 gift links per month. Just send me a note.

 

[Kalliope]

The Guardian/The Observer Covid pandemic sparks steep rise in number of people in UK with long-term illness

quote:
“It feels like we’re ignoring long Covid,” Thompson said. “People in the middle of their lives are getting robbed of their livelihoods, at risk of losing their homes. I can’t fathom why we don’t try to prevent it. But we’re not.”

 

[mango]

I previously posted about this in another thread. Here's another article on the same:

Läkare anmäls: Sa att kramar och raw food botar postcovid
https://www.aftonbladet.se/nyheter/...s-sa-att-kramar-och-raw-food-botar-post-covid

Google Translate, English

Doctor is reported: claimed hugs and raw food cure long covid

[...]The doctor told us how we could heal ourselves through diet, says Anna Voltaire.

Among other things, the doctor explained that the patients in the group could have a "leaky gut". Something that they got from the wrong diet and which was also the reason why they had come down with post covid [...]

- We supposedly got it because we were eating the wrong kind of food before we were infected by the coronavirus. Our unhealthy eating has supposedly released toxins into the bloodstream, according to the doctor," says Anna Voltaire. [...]

In addition, the doctor recommended "mindful eating", that patients "breathe out the toxins through the heart" and hug themselves to cure themselves of the coronavirus - and symptoms such as memory problems, extreme brain fatigue and brain fog. [...]

Judith Bruchfeld, a senior physician and associate professor at Karolinska University Hospital, has been researching and treating patients with postcovid since 2020.

According to her, there is no scientific evidence that diet can help patients with postcovid. There is also no scientific evidence that diet can cause postcovid.

- When recommending a treatment, there should be scientific support. If you want to investigate a new, unproven treatment, it should be done in controlled trials,' says Judith Bruchfeld.

She explains that post-covid is an umbrella term for a range of conditions, and that research is being done into the mechanisms of the different conditions.

- This is done in order to suggest effective treatments. In this case at Danderyd Hospital, the doctor in charge has used strange methods. As Anna Voltaire explains, many post-covid patients have had to wait a long time for an assessment - and people in this group also have severe cognitive problems. To then be subjected to frivolous suggestions and also advised to follow a very complicated eating schedule is a strain in itself," says Judith Bruchfeld, and continues:

- 'It's appalling that this has been allowed to continue and go under the radar at the hospital. This kind of treatment can almost be described as quackery.

 

[Suffolkres]

Date: Thursday 31 March 2022
Time: 12:30pm to 4:00pm (BST)
CPD learning applied

Prices: RSM member: £18 - £36 - Become a member
Non-member: £30 - £60
Dear Sir/Madam,

The agenda has released and new speakers annouced!

Join experts including Professor Sir Chris Whitty and Professor Sir Jonathan Van-Tam to discuss the future of Covid-19.

This RSM conference, to be held two years after the first UK lockdown, brings together leading authorities on COVID-19 to take stock of the pandemic’s impact, and discuss the best approaches for managing the endemic stage and the next pandemic threat. We are honoured to open the programme with an interview with Professor Sir Chris Whitty, Chief Medical Officer for England.

Three panel discussions will follow, featuring influential scientists and commentators including Professor Sir Jonathan Van-Tam, Professor Dame Clare Gerada, Professor Hugh Montgomery, Andrew Jack, Professor Sharon Peacock, Professor Devi Sridhar, Professor Peter Openshaw, Professor David Heymann and others.

 

[rvallee]

According to her, there is no scientific evidence that diet can help patients with postcovid. There is also no scientific evidence that diet can cause postcovid.

Disappointing to keep seeing basic errors like this. There is no evidence that a specific diet helps, but there are many who suffer from severe symptoms if they eat certain foods, so cutting them is good symptom management. For sure it doesn't cause LC, but it can help by avoiding deterioration, which for some reason is a concept medicine is unable to grasp until it's explicitly taught this way. Same issue with PEM. Sometimes not making things worse while the immune system does its thing is the only thing that helps, even if it itself doesn't help, it merely avoids going backwards. Then of course there's alcohol, which as far as I am concerned is not known to most physicians yet some of the top basic things the patient community knows. Massive relapse trigger.

But the idea of symptom management is also mostly screwed up, there's so little understanding about what it means for people who don't have to live with it. The biggest tell is being unable to understand that pacing is not a treatment, it is the ultimate in symptom management. This is what symptom management is: it sucks and it doesn't provide benefits other than not making things worse, but you'd think that in medicine the idea of not doing harm would be taken more seriously.

Getting these small things wrong is OK for non-professionals but it's literally the whole point of having experts, so that at least a group of people is able to pay attention to what matters and ignore what isn't important. And based on this, clearly the patient community is still the only source of expertise at this point. 2 years in. Ugh, what a total dumpster fire.

 

[bobbler]

Disappointing to keep seeing basic errors like this. There is no evidence that a specific diet helps, but there are many who suffer from severe symptoms if they eat certain foods, so cutting them is good symptom management. For sure it doesn't cause LC, but it can help by avoiding deterioration, which for some reason is a concept medicine is unable to grasp until it's explicitly taught this way. Same issue with PEM. Sometimes not making things worse while the immune system does its thing is the only thing that helps, even if it itself doesn't help, it merely avoids going backwards. Then of course there's alcohol, which as far as I am concerned is not known to most physicians yet some of the top basic things the patient community knows. Massive relapse trigger.

But the idea of symptom management is also mostly screwed up, there's so little understanding about what it means for people who don't have to live with it. The biggest tell is being unable to understand that pacing is not a treatment, it is the ultimate in symptom management. This is what symptom management is: it sucks and it doesn't provide benefits other than not making things worse, but you'd think that in medicine the idea of not doing harm would be taken more seriously.

Getting these small things wrong is OK for non-professionals but it's literally the whole point of having experts, so that at least a group of people is able to pay attention to what matters and ignore what isn't important. And based on this, clearly the patient community is still the only source of expertise at this point. 2 years in. Ugh, what a total dumpster fire.

Yes the 'not a treatment' and not necessarily something that improves things either - ie not sufficient for them to sit on their laurels as 'giving something' with and do no more research. But vital that they understand the principle because basically if they don't understand pacing they don't understand the illness - given they've been taught that stupid 2007 guideline bigotry of 'avoidance' so that our testimonies to what exacerbates are heard properly. What adjustments are needed fully get that because they cause exacerbations and delayed disability worse than not being able to do the thing in the first place it vitally needs to be on notes and instructions to those around those people ie family, employers and the NHS's own website propaganda.

It's literally like the bit where they tell diabetics to avoid high sugar things. Not treatment and not sufficient on its own. But definitely not behavioural when diabetic reports worse symptoms after high sugar.

 

[Tom Kindlon]

The Indo Daily: 'There were mornings I woke up and I didn't know who I was' - Olga's long Covid story

Stock image
March 07 2022 05:00 AM

Olga Wehrly is an actor and voiceover artist originally from Sligo.

In December 2020 Olga got Covid and it hit her hard.

She has been dealing with an array of long Covid symptoms ever since, 'I've gotten lost doing the school run, my cognitive impairment has been colossal.'

But despite all that Olga remains upbeat and confident that she will recover.

The Indo Daily: 'There were mornings I woke up and I didn't know who I was' - Olga's long Covid story

"It has made me feel really sorry for people with chronic fatigue syndrome who basically were gaslighted for 30-40 years. Because a lot of these similarities are starting to present with long Covid. So yeah it just highlights how people have been labelled as fakers and malingerers for a long-time and God, I can’t imagine how awful that has been for them."
---
This is an audio link. It’s not behind a paywall.

People with ME/CFS will be able to relate to her symptoms & descriptions of daily life.

She mentions she is part of a trial of LDN: hopefully a formal trial that gets published

https://www.independent.ie/podcasts...ho-i-was-olgas-long-covid-story-41413311.html

Some Irish people might remember from a Joint Oireachtas Committee on Disability Matters meeting on “Aligning Disability Services with the UNCRPD in consideration of chronic disease” where a woman with ME, Anna-Karin Ulpe, also spoke.

 

[Kalliope]

Time Researchers Are Getting Closer to Understanding Long COVID

quote:

Long COVID is also part of a much wider network of chronic diseases. It seems to overlap especially significantly with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)—a condition that can follow viral illnesses and leads to debilitating exhaustion—to the point that some Long COVID patients meet the diagnostic criteria for ME/CFS.

Complex chronic conditions such as ME/CFS, chronic Lyme disease, and fibromyalgia have been around since long before COVID-19 existed and affect millions of people in the U.S. alone, but they have not historically received much research funding or attention from the mainstream medical community. “ME has a 40-year history that’s defined by neglect and abandonment,” says patient advocate Rivka Solomon, who has had ME/CFS for 32 years.

While Solomon says she’s thrilled by the amount of attention given to Long COVID and stresses that there is no “us versus them” in the chronic disease world, she wishes other complex illnesses received the same amount of attention and funding—like the $1.15 billion over four years Congress gave the National Institutes of Health in 2020 to support research into the long-term effects of COVID-19.

Part of the imbalance may have to do with the scale and immediacy of the Long COVID problem. Experts estimate there are upward of 15 million Long COVID patients in the U.S. and even more around the world, all of whom have gotten sick over the last two years. There are up to 2.5 million ME/CFS patients living in the U.S., by contrast. But if researchers had invested in ME/CFS and other post-infectious chronic illnesses earlier, Solomon says, they might have better answers for Long COVID patients today.

 

[Sean]

>It has made me feel really sorry for people with chronic fatigue syndrome who basically were gaslighted for 30-40 years.

And who still are.

>(ME/CFS)—a condition that can follow viral illnesses and leads to debilitating exhaustion

Good to see exhaustion instead of fatigue. Still doesn't capture it fully, but an improvement.

>But if researchers had invested in ME/CFS and other post-infectious chronic illnesses earlier, Solomon says, they might have better answers for Long COVID patients today.

Well, yes.