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

Nice article but no mention about COVID except for this extract. Be warned that probably more than half is not about his illness (it’s mainly about football); but plenty also about his ME.

 

For those who live in USA or have access to CNN US, I totally recommend watching Cuomo Prime Time weeknights at 9pm EST.

Chris Cuomo got COVID in April and was sick with fairly mild illness. The way he described his symptoms and severity it was pretty much a similar level as my EBV infection that caused ME.

Chris Cuomo has long COVID and he’s mentioned on air some of his symptoms and they are some of the most common symptoms of ME/CFS, though he hasn’t mentioned PEM.

He actually mentioned on air the words myalgic encephalomyelitis/chronic fatigue syndrome and that doctors told him if his symptoms persists then he might have that. He also has news stories and discussions about long COVID most evenings, nothing too deep, but it’s commendable that he cares about this to make it a constant theme in his program.

 

Cuomo is on now with another long COVID segment and a person is on now and talking about her PEM from long COVID! She was a personal trainer before COVID and now even light yoga lands her in bed for days with horrible symptoms and aches and pains.

 

I forgot to mention that one of my strangest ME symptoms from the beginning was that it made my hair immediately change and to fall out constantly. When my symptoms ramp up the hair loss also gets worse. I’ve mentioned it years ago on threads on PR and if I remember correctly not a lot of people had the same symptom.

Well with long COVID a major symptom is hair loss, I thought that was really interesting.

 

Wonder if this is available anywhere? I did a few searches on Twitter with his username: quite a lot of people were commenting on it but no luck with a recording. Not that important of course.

 

Title : Still ill six months later: 'I have no idea how to get better'

Link : https://www.bbc.co.uk/news/stories-53948028

 

TB and syphilis are not viruses.

 

Oops very true, should have said enteroviruses. Though they do evade the immune system

 

https://www.biorxiv.org/content/10.1101/2020.08.20.259937v1
SARS-CoV-2 infects brain choroid plexus and disrupts the blood-CSF-barrier


Moderator note: copied, the paper can be discussed here:
The biology of coronavirus COVID-19 - including research, vaccines, treatments

 

@Dolphin CNN have a youtube page. I don't think you can watch whole shows but they have lots of long (10mins ish) clips, including ones by Cuomo. Or if you know the name of who he's interviewing, and type them both into youtube sometimes you get lucky and someone has uploaded the clip. Hope that helps. Kx

 

CNN Cuomo Prime Time doing another segment on COVID long haul tonight.

He listed some of his symptoms again:

Brain fog and fatigue particularly getting worse at night
Word recall issues
Mental acuity problems
Random joint pains (getting worse over time)
Depression and emotional lability (getting worse over time)
No enthusiasm for things like before COVID

 

Without more data, both doctors and patients are left with few resources in the middle of a fast-moving pandemic. “We’re going to need to develop a training manual to help professionals deal with this crisis,” said Leonard Jason, director of the DePaul Center for Community Research. After being contacted for this article, he began creating a survey to study pediatric long-term Covid symptoms. “It’s not that you can’t do anything. It’s just that most physicians have no idea how to treat things like this.”

Undark When Children's Covid-19 Symptoms Won't Go Away

 

A rather good article in the Norwegian newspaper VG today about ME as a possible consequence of Covid-19 (apart from the title where ME is called 'chronic tiredness').

It mentions a research project where the national patient register will follow hospitalised Covid-19 patients over two years and make their data available for other researchers.

Doctor and deputy in the Swedish patient organisation Eriksson talks about the historic connection between viruses and ME and says it's important not to overdo things. If the symptoms continues for months and you're not able to exert yourself, you should contact health care personnel, he advices. He also talks about the importance of pacing.

Researcher Marte K. Viken says ME is a complex and stigmatised disease and that it will be interesting to follow Covid-19 research.

Doctor Björn Bragée is also interviewed and hopes the epidemic will lead to better understanding of ME patients situation.

Fauci's quote on Covid-19 and ME is also mentioned.

Article is paywalled.

VG: Ekspertene advarer: Frykter corona kan gjøre noen kronisk trøtte (Experts warn: Fear that corona may make some chronic tired)

 

But. Overexerting themselves is literally what health care personnel will advise, eventually anyway. That's a big problem, pretending otherwise is really not helping. I understand it's hard to admit to catastrophic failure but the current system is explicitly built to fail those patients, advising to work with the current failing guidelines is not at all helpful. It's exactly what long-haulers are doing and finding no help whatsoever.

This must all be so much confusing given the major boners Norwegian medicine has for ME denial, so much contradictory coverage in recent months, two different realities existing at once with somehow very few people aware of the blatant contradictions.

 

Yet Another Global Health Crisis Awaits the World After The Coronavirus Pandemic

https://www.news18.com/news/india/y...he-world-after-covid-19-pandemic-2839373.html

Actually the crisis is already here, no need to imagine anything about how it will unfold, we already know what medicine will do when faced with that crisis: faceplant, deny, misdirect, lie lie lie. It's necessary to acknowledge, understand and fix the failure that lead to this in order to make progress. The current system created that failure, it must be reformed, the factors that created this massive human rights disaster have to be dismantled.

 

128 Days Later: What It's Like To Live With Long Covid

https://www.huffingtonpost.co.uk/en...vWQXaVrrixCdFwyJwW1QLLhwDOKu89Mcwyy7JCga2Xow4

Old wine in very old bottles.

 

I still wonder why our leaders don't talk about Long Covid. By now, every health minister must know, for sure.

WHO has addressed it.

Many governments struggle to justify their lockdown rules due to seemingly "low" death rates. Wouldn't talking about long term health struggles a good point to make then?

What would be the rationale behind leaving that out?

 

Probably this one:

 

"According to one study, most people with long COVID are women in their 40s".... hmmm that reminds me of some other disease, can't put my finger on it, must be the memory problems