Is a formal campaign against Long Covid underway?

[Rebeccare]

Another response to the WSJ from the Solve ME/CFS Initiative

 

[wabi-sabi]

I love this!

 

[YippeeKi YOW !!]

I second that !!!

The egregious, arrogant, callous and ignorant Jeremy Devine, resident psychiatrist at McMaster University, can go pluck himself.

I agree with Peter Breggin, to paraphrase his neatly little cross-stitched sampler: The most dangerous thing anyone can do is walk into a psychiatrist's office.

I believe that Breggin is a psych himself, so he speaks from first hand knowledge, unlike that little bleb Devine ...

 

[Jyoti]

Tongue in cheek counter to the campaign: https://www.theguardian.com/comment...spreading-long-covid-professor-press-coverage

 

[Marylib]

Some funding is here. Not enough, but looks interesting. This is a media centre; they don't report funding - you have to track that down
https://www.sciencemediacentre.co.nz/2021/04/29/long-covid-in-new-zealand-expert-qa/

 

[Rufous McKinney]

This article from Nature on long haul covid is very fascinating.

https://www.nature.com/articles/s41592-021-01145-z

 

[Hipsman]

https://www.nature.com/articles/s41592-021-01145-z

Interesting:

but to a first approximation it appears that 70–80% of people experiencing severe acute reactions to COVID-19 are men, whereas women comprise 70–80% of those suffering from long COVID.

 

[bensmith]

There are a lot of guys in my long covid group but could be just because of discord and Reddit. Def more woman on fb

Thought interesting that they are tying to see who is likely to get long covid or not.

Maybe that will help with cure.

 

[junkcrap50]

This article from Nature on long haul covid is very fascinating.

https://www.nature.com/articles/s41592-021-01145-z

Really enjoyed this article. I thought it was great. Nervous system could be a huge resevoir of viruses. See @Pyrrhus 's quote and highlights of it:

A new paper in Nature that is really making some waves:

Scientists set out to connect the dots on long COVID (Marx, 2021)
https://www.nature.com/articles/s41592-021-01145-z

Excerpt:

(emphasis added)

 

[Diwi9]

Really enjoyed this article. I thought it was great. Nervous system could be a huge resevoir of viruses. See @Pyrrhus 's quote and highlights of it:

My only complaint in the article was Nath talking about "exercise intolerance" and giving an example of someone ascending a flight of stairs. The issue is "exertion intolerance" which is much broader than "exercise intolerance." When researchers are not careful with their words, it leads to so much misinformation...like coining this illness "Chronic Fatigue Syndrome"...totally minimizing the impact of it.

 

[lenora]

While it's true that we're still without a viable diagnostic "test" it's also true that today we have far more researchers working on this problem, and it would be nice to see long haul survivors even push that number to a higher degree.

The media has become a source of entertainment and they fill that role quite well. The same with comments on the Internet....yet people believe these things as facts when, for the most part, many are ill-informed.

Anxiety does seem to be a fact of life for most of us at some point in the fight against this illness. It may take 25 years to reach that point, and I don't know how that compares to the general population. The younger doctors are at least willing to listen to their patients (probably b/c they don't have many) and even though it's still not properly taught in medical schools, long haul syndrome is well known by them. Perhaps our greatest salvation...as long as the symptoms aren't too different, that is. Yours, Lenora.

 

[Marylib]

This is the formal international alliance:

longcovidalliance.org/

 

[nerd]

Dr. Ram Yogendra in an interview about the latest long-hauler research:

We treat symptoms. We don't treat the disease. (referring to modern medicine in general)

They developed an AI with 97% sensitivity and 100% specificity based on a multitude of biomarkers. This is how the next generation of medicine will work. The AI index can be used for the monitoring of the course of the disease. This can show if the medication helps or not. Based on the individual cytokine profile, they chose an individual set of medications.

There is no one (single) drug that can resolve COVID or [Post-COVID]

It seems that the new understanding of COVID-19 is that it is not a primary lung disease, but in fact, an endothelial disease (10.1093/eurheartj/ehaa623). The lung manifestation is only a subsequent condition, i.e. an organizing pneumonia. The same counts for Post-COVID, according to Dr. Yo, in that endothelial immunological pathology dominates this disease.

We got gaslighted by the medical community. Establishment hospitals, establishment university programs said they want nothing to do with us, even though now, we have a peer-reviewed paper.

Their website: covidlonghaulers.com

 

[Rufous McKinney]

PBS News Hour...interview with Dr. Francis Collins, NIH

around minute 31......Collins' mentions kids getting long haul covid.

"...and you don't get better...sick for a long time"...

 

[PatientlyWaiting]

Not one, but two articles in the press today about Long Covid needing to be scrutinized and questioning the allocation to the NIH to fund research. The articles circle around the concept that Long Covid is likely some form of hysteria. Sound familiar?

Sadly, this first article is by an Associate Professor at Harvard Medical School:

https://www.statnews.com/2021/03/22...re-critically-speaking-cautiously-long-covid/

And, this second article in the Wall Street Journal:

https://www.wsj.com/articles/the-dubious-origins-of-long-covid-11616452583

From the WSJ article - “The government listened and now will further perpetuate patient denial of mental illness and psychosomatic symptoms.” How can he be so all knowing and smug about something he has never personally witnessed ? Hope he never gets a mysterious illness.

 

[PatientlyWaiting]

I think that it's going to be a tough battle and ultimately long COVID will be dismissed like CFS/ME. The reason, in my opinion, is that the symptoms too closely match or overlap with symptoms that are prevalent with anxiety. Until there is an acceptable diagnostic test for whatever it is we have going on I think it will all be soon pushed aside. I hate to say this because in general I'm an optimist but I'm also a realist and that is what my gut is telling me of human nature and the medical profession.

One big difference is just the sheer volume of people that are gonna be affected by this, including members of the medical community, people with lots of money, maybe some celebrities, etc. I don’t wish for it of course (more people with this condition) but I do think it will make a difference in perception and funding when the critical mass is too loud to ignore.

 

[PatientlyWaiting]

Yes, they are already seeing that many of the early long haulers are slowly starting to recover.

Even pre-COVID, "cold" viruses have been getting worse and worse over the last 5-7 years. More and more people having colds that don't go away for several months and come and go often over a 6 month period.

My pre-COVID Dec 2019 (which couldn't be COVID because of the timing) virus was acute like a really, really bad cold in lower throat (and conjunctivitis) for all of December then HELL in January with loss of smell, loss of appetite, absolute deathly fatigue, and the weirdest kind of anxiety. February - March I was starting to recover at about 60% (?) of my normal crappy. April - June I was seemingly back to my normal crappy but in reality I was really about 85%-90%. Then suddenly at some point, I'm not sure when....I realized, hey, I feel normal again.

we are learning that covid was here earlier than we originally thought. You ever get antibody test before vaccination ? Loss of smell is suspicious.

 

[Booble]

we are learning that covid was here earlier than we originally thought. You ever get antibody test before vaccination ? Loss of smell is suspicious.

I didn't get antibody test (though I was curious) because I didn't want to go into a doctor's office during COVID if I didn't have to.

 

[lenora]

If they're going to say that people suffer from anxiety....then why don't they treat that and see exactly how many symptoms remain? Is this too sensible?

 

[lenora]

we are learning that covid was here earlier than we originally thought. You ever get antibody test before vaccination ? Loss of smell is suspicious.

Perhaps there is recovery IF you aren't affected by another virus, surgery or any one of a number of problems that can affect us as human beings. Still, something has happened....what is it? Yours, Lenora.