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

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Just saw on twitter that the German politician Karl Lauterbach warns about opening up society and mentions ME/CFS as one of the reasons for being careful. According to wikipedia he's a professor of health economics and epidemiology and is a Member of the Bundestag.

Here are the tweets google translated to English:
(1) Denmark is making a spectacular mistake that I can only warn about. If all who are ready to vaccinate over 50 have an initial vaccination, Covid infection is allowed. Risk groups vaccinated, the rest can become infected. This has fatal consequences, not only for younger people:

(2) Many unvaccinated elderly people would become ill. If, for example, 20% of the over-50s in Germany were not vaccinated and every second person was infected, over 60,000 people would die from the infection. But even among the younger ones, many are threatened with risk factors of Covid death. Additional to that:

(3) Many younger people suffer with them #LongCovid Damages that may accompany them for the rest of their lives. For the #MECFS , a disturbance of thinking, memory and the ability to concentrate that severely restricts the quality of life, we have not yet had any therapy. It is considered incurable




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Sorry to disappoint you, but those are not translational errors, and the connotations in German remain precisely the same. He makes it sound like ME consists solely of neurocognitive-/psychiatric impairments. I can certainly appreciate that he is trying to raise awareness of the issue (albeit haphazardly), but he's a small fry.
None of our lobbyism-addled market liberal MPs and pundits seem to care much, particularly not the federal minister of health, who all but openly advocates for a herd immunity strategy, and who has been on record for his complete indifference towards ME, since long before this pandemic even started.
 
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Report: CHRONIC INJUSTICE: CENTERING EQUITABLE HEALTHCARE AND POLICIES FOR COVID-19 AND OTHER CHRONIC CONDITIONS [incl ME/CFS] from Covid-19 Working Group New York

EXECUTIVE SUMMARY

No infectious disease epidemic in history has ever been so clearly fueled by chronic disease as COVID-19. And yet, over a year from the COVID-19 pandemic’s onset, city, state, and federal leadership have no clear plan or processes in place to properly implement the many well-proven, community-led, and evidencebased practices to significantly prevent and control chronic diseases that have been exacerbated or caused by COVID-19.

Further, there is inadequate discussion and planning for the massive influx of chronically ill patients into strained and fractured systems of care already rife with inequities.

There is now abundant evidence that like other viruses such as poliovirus, SARS-associated coronavirus, and Epstein-Barr, SARS-CoV-2 can trigger chronic disease, often called Long COVID by people experiencing it and now referred to as postacute COVID-19 syndrome (PACS) or post-acute sequelae of SARS-CoV-2 (PASC) by the National Institutes of Health (NIH). At the same time, COVID-19 infections and the massive societal disruptions brought about by the pandemic have worsened conditions and outcomes for people with pre-existing chronic conditions.

New York will emerge from the pandemic with our residents facing an even more significant, potentially lifelong, and racially disproportionate burden of disease; physical, mental, and emotional health challenges; and a potential deluge of nonmedical suffering associated with chronic conditions that have been created or worsened by COVID-19, including stigma, isolation, and economic devastation. To honor those we have lost and those who remain in harm’s way, we must not accept an “end” to this crisis that consists solely of mass vaccination, a return to prior rates of in-person schooling, and the reopening of non-essential workplaces.

https://static1.squarespace.com/sta...01590/1616170683248/Chronice_Injustice_V3.pdf
 
Arnie Pye said:
I'm not sure what this man is suggesting. That all the effects of ME are mental?
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He has mentioned "CFS" many times in the media, thankfully, and at a recent press conference by the government the possibility of an "autoimmune process of the brain".

He does seem to understand it's physical but stresses the cognitive and "mental" aspects a bit too much (e.g. "depression" and then saying, suicide rates in "CFS" are high - which is right, but can lead to wrong conclusions without further clarification).

What I'm missing from him, and everyone who is publicly outspoken about Covid induced "CFS", is to warn about pacing.

Public figures that do take LC seriously are stressing we need rehab facilities.

For the pwLC having PEM it's probably good we dont have them. As long as therapists have this fetish with deconditioning and fawning to BPS models people are probably better off home.

Edit: Having said that, not once in my 13yrs of ME has one of my treating doctors mentioned pacing, either. It's the most Important "treatment" and being left completely to figure out by yourself.
 
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Opinion piece in a Swedish newspaper.

Orimligt att vänta på ny forskning för sjukskrivning i långtids-covid
https://www.gp.se/debatt/orimligt-att-vänta-på-ny-forskning-för-sjukskrivning-i-långtids-covid-1.43161937

Google Translate, English
Google Translate said:
Unreasonable to wait for new research for sick leave in long-term covid

Several symptoms make long-term covid reminiscent of [stress-induced fatigue/burnout] or chronic fatigue syndrome. The question is whether we need a new round of research studies specifically for covid-19 to be able to assess work ability for those affected, writes Töres Theorell, professor emeritus, Karolinska Institutet, Maria Werme, physiotherapist and Ulla Bertling, PhD, specialist in clinical psychology.
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(In my opinion it's a bit strange,.. Why are they using ME as an argument when they clearly don't know much at all about the disease or the associated issues? Writing about the issues as if they are in the past? It's quite telling that they didn't even bother getting the name of our disease right... "myalgisk encephalit" :rolleyes:)

In related news, the Swedish government issued a press release today about health insurance policies and ME, long covid. Read more in the News from Scandinavia thread.
 
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Includes David Strain, talking about how it seems that early rest is important and pushing through may be one major factor for Long Covid. Really not sure that it's the time to do trials for treatments, this approach has failed miserably already.

 
A US senator, and former vice-presidential candidate, Tim Kaine, says he still has mild neurological symptoms. Powerful potential ally.

https://www.independent.co.uk/news/...m-kaine-covid-symptoms-virginia-b1819907.html

Interview with him: https://www.usnews.com/news/health-...t-with-long-covid-its-personal-and-its-policy.
"I have these weird neurological symptoms a year later. They're not debilitating, they're not painful, but they're weird," Kaine, 63, said during the hearing, which included federal officials such as top infectious disease expert Dr. Anthony Fauci and Dr. Rochelle Walensky, director of the Centers for Disease Control and Prevention.
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I'm not suffering – I can come to work every day and then some – but I have symptoms a year later and I know a lot of people who do. And some people, you know, they're not being believed or they feel like they'll be stigmatized if they talk about them. But this is a real issue for our health care system to take into account – the variety of long-term symptoms that people are experiencing – so the health care system can deal with them. So that's why I decided to start talking about it.
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By mid-April, both of us were feeling better. But I continued to have this nerve-tingling phenomenon that's literally 24/7. It's not painful. It's not even that bad. I kind of laugh to say it, but it's like every nerve in me is kind of sitting at the edge, waiting for something to happen, or has had five cups of coffee and caffeine has it just buzzing.
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I'm hoping Fauci is not just saying that in public but acting on it:
Federal agencies were putting together "large cohort studies" to better understand "what the incidence of it is, what the variability, what the range of organ system dysfunctions are, and what the underlying pathogenic mechanism is," the expert added.

"It's really very puzzling, senator," Dr Fauci said. "It's people who recover, have the virus no longer there, and have a persistent of things like chronic fatigue, muscle aches, temperature dysregulation, funny kind of neurological issues that they can't explain."

"That's what we're really focusing on," he continued. "We are looking at that seriously."
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The BMJ opinion: The stigma is real for people living with long Covid by Marija Pantelic and Nisreen Alwan

Quotes:

Testimonies from people living with long covid illustrate profound stigmatisation. Many of them have been disbelieved and their ill health was not recognised for months. Stigma drives people underground and away from health services, contributes to psychological distress and mental illness, and by doing so compromises long term physical health outcomes. Non-engagement with health services and ill health are further stigmatized, perpetuating a vicious cycle of further stigma and sickness. Research on long covid stigma is still lacking, but emerging testimonies point to two important facets: institutional discrimination and internalised stigma.

...

But we can learn from decades of research on the stigma of illness to act early through three actionable steps:

  1. Truly listen with an open mind to those with lived experience—Stigma is not easily visible or fixable from the outsider perspective, particularly when a condition is concealable and poorly understood like myaglic encephalomyelitis/chronic fatigue syndrome, and long covid. Patient testimonies are therefore essential for attempting to understand their experiences of stigma and begin to design solutions. A first step for this is to believe patients about their symptoms and recognise the injustices they face.
 
Cases of ‘Long COVID’ frustrate patients, puzzle scientists

https://www.latimes.com/science/sto...rm-side-effects-frustrate-patients-scientists


I sure hope the NIH live up to those words from the top:

Some are making common cause with patients who suffer from other poorly understood ailments such as chronic fatigue syndrome, fibromyalgia and chronic Lyme disease. Those patients’ diffuse symptoms frequently follow an infection too, and their complaints are routinely belittled and dismissed by doctors.

Dr. Anthony Fauci, the nation’s leading infectious disease doctor, says Long COVID is “really puzzling.” In the “data-free zone” that now exists, Fauci says it’s impossible to know how many are affected, why the virus doesn’t seem to be done with them or how long their symptoms could last.

In the absence of lab tests that can diagnose the problem, “a lot of times people think it’s a psychological disorder,” Fauci said. “It’s not.”

Preliminary reports suggest that around 70% of patients coming forward are women — a pattern that has historically led doctors to dismiss symptoms as manifestations of feminine anxiety. “We’re not going to assume this is hysterical by any means,” Fauci said. “I think this is a real situation.”​
 
rvallee said:
Includes David Strain, talking about how it seems that early rest is important and pushing through may be one major factor for Long Covid. Really not sure that it's the time to do trials for treatments, this approach has failed miserably already.
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That's an interesting item for a few reasons. Dr Nathalie McDermott mentions that she caught Covid-19 in March and then recovered. And then caught it again in May and went on to develop Long Covid. I wonder if that idea of the subsequent strike of different strain of an illness causing the immune system to attack the body might have something to do with developing post-infectious symptoms. Of course, it's possible that Nathalie didn't actually recover in March, and the May illness was a relapse of Covid, or Long Covid.

As an aside, Nathalie, when asked about the effectiveness of PPE commented that only medical staff working in ICU got fully effective PPE, whereas medical staff working on a Covid ward did not. She said Covid is highly infectious so 'I don't think we should just be saying that it's only going to spread to those who are intubating patients. It might also spread to doctors and nurses who are working closely with patients who are just coughing and sneezing'. This is an infectious disease specialist saying this. Where I am, we have seen people catch Covid-19 from just being in a lift sometime after an asymptomatic person was, or by just touching a rubbish bin that an asymptomatic person touched. Of course it's going to spread to people 'working closely with patients who are only coughing and sneezing' unless the PPE is very good.
 
Hutan said:
That's an interesting item for a few reasons. Dr Nathalie McDermott mentions that she caught Covid-19 in March and then recovered. And then caught it again in May and went on to develop Long Covid. I wonder if that idea of the subsequent strike of different strain of an illness causing the immune system to attack the body might have something to do with developing post-infectious symptoms. Of course, it's possible that Nathalie didn't actually recover in March, and the May illness was a relapse of Covid, or Long Covid.
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Your latter explanation seems to be a common experience. A proportion of people are saying that their initial infection with covid was mild and they felt like they had fully recovered within a few weeks. After some weeks (or even months) of apparent good health, they 'relapsed' and came down with LongCovid.
 
Hutan said:
Of course, it's possible that Nathalie didn't actually recover in March, and the May illness was a relapse of Covid, or Long Covid.
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Art Vandelay said:
Your latter explanation seems to be a common experience. A proportion of people are saying that their initial infection with covid was mild and they felt like they had fully recovered within a few weeks. After some weeks (or even months) of apparent good health, they 'relapsed' and came down with LongCovid.
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I don't understand why there seems to be this very binary view....had symptoms, symptoms disappeared and therefore I am fully cured. Especially in an infection where some people remain asymptomatic throughout.

It's like assuming all there is to an iceberg is the bit you can see.
 


Someone on the team responded saying they are taking account of that. Then again BPS researchers keep saying they take harm in consideration yet never do. But at least the standard playbook seems to be noticed. Our years of screaming into the void will not have been in vain.
 
Neurologic Symptoms Frequent in COVID Long-Haulers

Cognitive dysfunction tops the list of neurologic complaints in long-haul COVID-19 patients whose illness wasn't severe enough for them to be hospitalized, but it isn't the only problem, new research shows.

Researchers who tracked 100 COVID-19 long-haul, nonhospitalized patients from May to November found 85% reported four or more neurologic symptoms.​

https://www.medscape.com/viewarticle/947915

The study mentioned is this one: https://www.s4me.info/threads/persi...id‐19-“long-haulers”-2021-graham-et-al.19771/.

(Registration is required to read, but it's free.)
 
Notice of Special Interest (NOSI): Stimulate Research on the Diagnosis, Treatment, and Mechanistic Understanding of Postural Orthostatic Tachycardia Syndrome (POTS)

https://grants.nih.gov/grants/guide/notice-files/NOT-HL-21-008.html

POTS can be a debilitating condition that affects routine activities such as working or attending school. POTS primarily affects women of child-bearing age, with most studies reporting 80-90% female predominance. The peak incidence is at age 14 years, but half of all individuals with POTS develop it in adulthood. While there are no precise data on the prevalence of POTS, it is estimated to affect 0.2-1% of the U.S. population.

There is thus a compelling need to stimulate research to understand the causes of POTS in order to inform the development of treatments. Improving the diagnosis of POTS through the development of biomarkers or improved diagnostic tools represents another major need. Translational studies and mechanistic clinical trials to guide the development of better treatments are also important goals. This NOSI signals interest in this important area with the goal of stimulating research applications to address these critical needs.

Suggested research examples include, but are not limited to:
  • Studies to understand causes and mechanisms of POTS, e.g. neuropathology, cardiovascular structure and function, immunology, neurocognitive function
  • Diagnostic, prognostic, and monitoring biomarker studies
    • Fluid biomarkers – e.g., blood tests to diagnose POTS or monitor the effect of a therapy
    • Imaging biomarkers – e.g., functional MRI of the brain, PET and SPECT studies of cardiac sympathetic neuronal function
    • Biomarker studies of relevance to NINDS are encouraged to review the NINDS Biomarker Program
  • Longitudinal natural history of POTS
  • Genetic and epigenetic studies to understand clustering in families, female predominance, and race/ethnic predilections to POTS
Loosely related to Long Covid but I strongly doubt this would have happened otherwise. Scientific contact at NINDS is Vicky Whittemore. I think that's good?
 
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