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

I didn't quote this part for the sake of brevity but Dr Navis did mention this issue:

Participants in the study were overwhelmingly white, and 70 percent were women. Dr. Navis and others said that the lack of diversity quite likely reflected the demographics of people able to seek care relatively early in the pandemic rather than the full spectrum of people affected by post-Covid neurological symptoms.

“Especially in New York City, the majority of patients who got sick with Covid are people of color and Medicaid patients, and that’s absolutely not the patients one sees at the post-Covid center,” Dr. Navis said. “The majority of patients are white, often they have private insurance, and I think we have to figure out a little bit more what’s going on there with those disparities — if it’s purely just a lack of access or are symptoms being dismissed in people of color or if it’s something else.”​

 

Probably more a feature coming from active people making that point about themselves while sedentary people don't mention it. People who were very fit at the time will mention it at every opportunity because they are accused of being lazy and/or deconditioned. Whereas people who were healthy but not very active do not.

Frequency bias is a problem at any level or scale. Should be easy to check by asking people about their fitness level before they were ill. My prediction would be a mostly normal distribution.

 

Inside a long Covid clinic: ’I look normal, but my body is breaking down’

Video:

It's trying (and failing) to embed the video when I simply paste the link so click here to access the video.

 

Lots and lots of reporting this week. I assume the deniers will match, or at least attempt to.

This is daytime television on a national channel. Usually millions of viewers.

https://twitter.com/user/status/1374329213617119235

 

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

 

I'm not sure what this man is suggesting. That all the effects of ME are mental?

 

probably translational errors .

 

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.

 

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

 

I liked how he slipped in the zero-evidence, vaccine ad towards the end. Smooth. Apparently it might "reboot" the immune system. Do they have something to defrag mine? I feel I could do with a bit of defragging.

 

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.

 

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

(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" )

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.

 

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.

https://twitter.com/user/status/1374808499755044871

 

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'm hoping Fauci is not just saying that in public but acting on it:

 

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.”​

 

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.

 

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.