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

Yes, it's a typo
https://twitter.com/user/status/1395826140976226306

 

Great, thank you There's already "long covid", "postcovid" and "PACS". No need to add more to the confusion, or else they will soon have as many different names for their disease as there is for ME

In Sweden it seems to me that many (most?) of the people who have the disease are now calling it "long covid" ("LC" or "långtidscovid"). Except for the doctors who have the disease, they tend to call it "PACS" instead. The National Board of Health and Welfare/Socialstyrelsen, the government, healthcare professionals, researchers and the media are usually calling it "postcovid" ("postcovid - kvarstående eller sena symtom efter covid-19", "remaining or late symptoms after covid-19").

How are these names being used in the countries where you guys live?

 

Oh, that's interesting. I had the impression Long Covid was preferred over PASC by patients.

Here we just don't talk about it, or we use euphemisms. The biopsychosocial brigade has been busy spreading the word that information about it causes it. Young people believe an infection has no risk for them. Some deliberately get themselves infected, and even pay for it. They've been prevented from taking an informed choice.

 

Fauci is a very intelligent guy. I also think he is a compassionate man with a real sense of getting things right for people. In addition he does not have to bend what he says for anyone.

The fact that he seems to be rethinking ME seems to me a rather important development. His opinion carries more weight than almost any other physician in the world - maybe more than any.

 

Article doesn't mention ME, but some recognisable descriptions from patients with Long Covid. Good to see the article recommending to listen to one's body.

India Today: The long Covid tale: If you are recovering from coronavirus, this is normal

- A long Covid-19 is a reality and we must soldier on, get adequate rest and get back to work slowly. While doctors are still assessing the long-term effects of the virus, there is consensus on one recommendation: take it easy. Don't exert yourself. Full recovery takes a long time. Listen to your body too. Push a little, but maintain a delicate balance.

 

Article in Bloomberg on Long Covid.
Nath gets a mention.

Covid Long-Haulers Baffle Doctors With Symptoms Going On and On
Covid Long-Haulers Baffle Doctors With Symptoms Going On and On ["https://www.bloomberg.com/news/arti...-baffle-doctors-with-symptoms-going-on-and-on"]

 

Infectious Diseases. 2021 May 22;1-18.
doi: 10.1080/23744235.2021.1924397. Online ahead of print.
Long COVID or post-COVID-19 syndrome: putative pathophysiology, risk factors, and treatments
Shin Jie Yong 1
Affiliations
Affiliation

• 1Department of Biological Sciences, School of Medical and Life Sciences, Sunway University, Subang Jaya, Malaysia.

• PMID: 34024217
  
• DOI: 10.1080/23744235.2021.1924397

Abstract


Long COVID or post-COVID-19 syndrome first gained widespread recognition among social support groups and later in scientific and medical communities. This illness is poorly understood as it affects COVID-19 survivors at all levels of disease severity, even younger adults, children, and those not hospitalized. While the precise definition of long COVID may be lacking, the most common symptoms reported in many studies are fatigue and dyspnoea that last for months after acute COVID-19. Other persistent symptoms may include cognitive and mental impairments, chest and joint pains, palpitations, myalgia, smell and taste dysfunctions, cough, headache, and gastrointestinal and cardiac issues. Presently, there is limited literature discussing the possible pathophysiology, risk factors, and treatments in long COVID, which the current review aims to address. In brief, long COVID may be driven by long-term tissue damage (e.g. lung, brain, and heart) and pathological inflammation (e.g. from viral persistence, immune dysregulation, and autoimmunity). The associated risk factors may include female sex, more than five early symptoms, early dyspnoea, prior psychiatric disorders, and specific biomarkers (e.g. D-dimer, CRP, and lymphocyte count), although more research is required to substantiate such risk factors. While preliminary evidence suggests that personalized rehabilitation training may help certain long COVID cases, therapeutic drugs repurposed from other similar conditions, such as myalgic encephalomyelitis or chronic fatigue syndrome, postural orthostatic tachycardia syndrome, and mast cell activation syndrome, also hold potential. In sum, this review hopes to provide the current understanding of what is known about long COVID.

Keywords: Long-haul COVID-19; drug repurposing; long COVID; pathophysiology; post-COVID-19 syndrome; risk factors.

 

https://www.newry.ie/news/young-mar...speech-to-covid-releases-new-song-for-charity

 

Twitter thread.

https://twitter.com/user/status/1397871284437012482

 

Also "Talking Therapies" is an IAPT program so basically Long Covid clinics are just a storefront for IAPT, or at least some of them. About exactly as expected.

Health care systems are massively underestimating the harm done to trust in medicine by providing sham services. Pure hubris, they don't think it even matters that people lose all trust because they don't have to care, it's a monopoly and there is no alternative. Especially with a program like IAPT where patients not coming back is literally the objective.

Exactly the kind of problem that leads people to ignore the very small things they could do to mitigate all this. When experts are all over the place and not making sense and you NEED trust in expertise you are basically shooting everyone in the foot.

 

Saw this article appearing on reddit r/all today with 46K upvotes.

UPI: 'Brain fog' can linger with long-haul COVID-19, study says

I'm too brain fogged to read the article, but it mentions ME/CFS

The top comment on the reddit thread, with 3,7K upvotes, says how sympotms of long-haul COVID are similair to ME/CFS symptoms and that ME is underesearched and not taken seriously by the medical community.

Link to the reddit thread on r/science

It's so surreal for me to see ME and brainfog talked about in main stream places, and ridicule and dismissal not being the first thing you see.

 

https://www.youtube.com/watch?v=e_Un_jl7IMQ

 

TIME Long-COVID-19 Patients Are Getting Diagnosed With Little-Known Illnesses Like POTS

- A significant percentage are suffering from syndromes that few doctors understand or treat, primarily postural orthostatic tachycardia syndrome (POTS) and chronic fatigue syndrome (CFS). In fact, a yearlong wait to see specialists for these syndromes was common even before the ranks of patients were swelled by pandemic newcomers. For some, the consequences are life altering.

 

Just seen this really useful workshop on Long Covid and Physio by Darren Brown.

So much of what he says seems to match what so many of you describe, and his descriptions are really really clear.

https://twitter.com/user/status/1398560836508061697


Direct link: https://longcovid.physio/our-work/physio-fribourg

The thing that struck me the most was that he talks about not recognising that he had LongCOVID until 6 months after acute COVID, when he had his first major crash.
In the same way, there must be so many of people with ME who do not recall the initial infection.

 

Kalla Fakta ("Cold Facts") is a Swedish TV programme (investigative journalism, debate, featured documentary stories etc). Their latest episode is on long covid:

Kalla fakta: Smittad - postcovid
https://www.tv4play.se/program/kalla-fakta-smittad-postcovid

 

Hmmm....

"Psychiatric Fallout From Long-COVID: How to Prepare

As mounting evidence points to a significant psychiatric component of COVID-19, experts are concerned about an influx of survivors presenting with persistent mental health problems and how best to prepare.

Clinicians should be aware that patients who have had COVID frequently develop psychiatric symptoms, Silvia S. Martins, MD, PhD, associate professor of epidemiology, Mailman School of Public Health, Columbia University, New York City, told Medscape Medical News.

"There should be more screening of all patients recovering from a COVID infection for anxiety, posttraumatic stress disorder, and depression, as well as referral to services, including psychotherapy, and medication as needed," said Martins, who, along with colleagues, uncovered a high rate of these symptoms in patients who had the disease."

https://www.medscape.com/viewarticle/952049

 

If you take a canary into a mine then it is 'easy' to believe that mines are full of canaries, as everytime you enter the mine you can see a canary.

Of course a non stupid professional person might realise that they have not in fact entered a mine full of canaries, but that they are only seeing what they took in there.

But non stupid professionals appear to be much rarer that canaries in coal mines.