Long Covid in the media and social media 2023

Amy Proal interviewed on the Long Covid Sessions podcast: Episode 65

During the discussion of potential for vagus nerve dysfunction at 34:25.

INT: If we therefore tried to control things with things from the brain down... so, if it's CBT or mindfulness or the Lightning Process - some people have had results with - can you control the vagal nerve going that way? And in doing so are you then actually turning off what might be essential signalling?

AP: <pause> Yeah, I mean to me the Lightning Process is complete bullshit. It's a cult. I absolutely just can't stand anyone there and I warn everyone to not even go close to those people. I'm not joking. It's a true cult and I don't believe a single thing about recovery there... they're just pressuring people in a cult mentality to say they're getting better. I've had friends do this and it's actually really concerning.

 

She's not wrong...

 

The UK Covid Inquiry is now headline news: https://www.bbc.co.uk/news/live/health-67292085

'Macho' culture harmed Covid response, inquiry told

Boris Johnson asked scientists if hair dryer could kill Covid, says ex-aide

Covid inquiry: Read the private WhatsApp messages from inside Downing Street

From one of the few people to come out of the Government farce with some dignity:

-

Edit to add: https://twitter.com/user/status/1719841370339205606

 

Boris Johnson may not believe in it, but long Covid is real – and underfunded
Danny Altmann

"Among the more sobering moments at the UK Covid-19 inquiry over the past few weeks was the palpable dismay and affront shown by the mild-mannered NHS respiratory consultant Prof Chris Brightling, when he noted that Boris Johnson’s response to a Department of Health briefing on long Covid was to write “bollocks” across it in large letters. Brightling said he was “deeply saddened” and made “extremely angry” by the comment. “Does he mean bollocks to the science?” he mused, or “is it bollocks to the patients?” For the millions of sufferers whose lives, careers and finances have been shattered by the disease, it may be hard to disengage from the idea that this opinion fed into a wilful blind eye being turned to the disease.

The inquiry is a reminder that even as public (and policy) attention span for all things Covid has inevitably waned, it is worth looking at the state of play for the many millions of patients, advocates and researchers around the world still very much grappling with long Covid. From where I sit – somewhere between the international long Covid medical research community, the patient support groups, and those running long Covid clinical services – I’d describe it as a rather bleak period, with an ongoing crisis of confidence for all concerned.

In each of these spheres there has come the stark realisation that the initial momentum (and with it, much of the funding) has fallen off the cliff edge. There have been incredible scientific advances in our understanding of the disease, but we are also learning how little we actually know. Gez Medinger, my colleague and co-author, has described the initial research as being like a huge jigsaw puzzle with some of the easy bits in place around the edge, and everyone trying to guess if the picture in the middle is of a horse or a steam engine. Some thousands of peer-reviewed publications later, many more pieces are in place and the edge of the jigsaw is going well, but we’ve come to realise that the disease – the way it works, and its symptoms – is so heterogeneous that we may actually have mixed up several jigsaws of horses, steam engines and sunsets, yet are trying to solve a single one from the jumbled pieces."

https://www.theguardian.com/comment...-in-it-but-long-covid-is-real-and-underfunded

 

And hiding dodgy non-health positive paradigms, ‘treatment’ or as they now call is [re-]education, and using rumour and misinformation as disparagement inaccurately under the term. It’s weaponising of a term and of labels that are not intended, if they want to keep the inference they are ‘for good’, to cause ‘not good’ in the same way. And indeed there is not just no follow-up but fingers in ears and hands over eyes and disparage patients who dare to be seen in plain sight ‘not recovered’ by their nonsense.

Eeverything this lot do is to stigmatise and they certainly don’t care about mental health in the way most interpret that term. It’s about ‘behavioural’ and seeing certain individuals as ‘to be dealt with’ like the hysterical women into assylums or conversion ‘stuff’ ie the ‘dirty, dark ages’ people pretend was removed and extricated from the subject. But just these people have been allowed to sneak back through rebranding it and new names to hide it.

they don’t care about causing despair, desperation, lives not worth living type of mental health and they don’t indeed make those better instead of worse as their aim is their belief in personality change to re-educate and deal with. It’s not the proper psychology does it make people happier presumption people have from assuming it’s at least stayed in those principles if not moved forward from 30yrs ago. but a bunch who wanted a return from that ‘enlightened’ definition and principles to the old days - indeed they are as a group focused on ‘bringing back a century to neurasthenia’ (a ‘dumping pot’ presumption before so many diseases and diagnostics were discovered and made accessible) so that they can presume reeducation is the best approach for those disabled by illness instead of medicine. That doesn't do much for the 'brand' of 'mental health' - either departments or the patients.

I’d also propose that ‘stigma creation’ is part of what they deliberately and actively do as part of the ‘punishment and aversion’ focus of their behavioural psychology they enforce whether someone is in treatment or not ie they belief ‘making being ill distasteful and bullied’ changes people from ‘acting like they are ill’. I think that’s their level - this bunch who do psychosomatics - of ‘thinking’ or ‘helping’. It’s just basic

so yes their ‘stigma’ nonsense is just pat darvo and because they are the personality types that will see themselves as the subject and object if everything and the victim. I’m not sure when they mean mental health it’s patients they are concerned about - we know how disdainful they are of the ones they insist in treating in cfs - but a stigma about what they do.

And there should be more than a stigma about what this bunch do. Psychosomatics used to be a niche outed and kept an eye on for it’s dangerous ideas by psychology. It’s just nastiness and the belief ‘women think themselves ill’ . it’s fake pretend it’s anything ‘real’ or more than that by calling itself a subject used to be laughed at.

and I think for those who care about not damaging mental health if people that’s where it should be. Bad and harmful loopy stuff should be being called out and made known by society as ‘far out’ in order that those attacked by it have others bring proper bystanders and not ignoring the harm or wrongness.

It’s just like bullies who want to say someone is unkind for stating they bullied someone when they did indeed just bully someone. And try and pretend to everyone that is 'the norm' that saying anything 'bad' about 'anyone' makes you bad, which is nonsense given responsibilities of bystanders and calling out bad behaviours when you are the third party witnessing an incident.

They are wrong that person is doing good and being good by stating and calling out bad actors and bad behaviour. Being ‘polite’ about harmful things isn’t ‘politeness’ . Calling out harmful treatment done by a weird ideology that has no place under the ‘help’ assumption of ‘mental health’ is doing the right thing in stigmatising bad actors delivering re-education that causes psychological and physical harm. Calling out actors who disparage patients with misinformation as harming mental health and health is the right thing to do and you’d hope with anyone with s mental health issue people would call out misinformation and any bad actors if inappropriate paradigms too.

 

https://twitter.com/user/status/1722039982246735914

 

@PutrinoLab

Incredibly grateful to
@drsanjaygupta
and
@CNN
for taking the time to talk with me about #LongCOVID. We cover everything from the origins of LC in NYC back in 2020 to vaccines and the need for more rapid research NOW. Thanks for the attention to this issue




cnn.com
The Long Journey to Treat the Long Covid Brain - Chasing Life with...
More than three years after the outset of the Covid-19 pandemic, many long Covid patients are still experiencing brain fog, extreme fatigue, and myriad other health issues, leaving some unable to...

10:58 pm · 7 Nov 2023

eta: link to interview didn't post. See below.

https://twitter.com/i/redirect?url=https://twitter.com/PutrinoLab/status/1722025878916403655?cn=ZmxleGlibGVfcmVjcw%3D%3D&refsrc=email&t=1+1699403989228&cn=ZmxleGlibGVfcmVjcw==&sig=4526047476b086a4647f579680def539171541f6&iid=6138f8a8faf34ba687e972451f0cb10e&uid=780376744326991873&nid=244+281088000
Some notes as I listened- remember brain fog. I can feel my energy go down a plug hole as I try to concentrate.

7% of adults have struggled with long covid plus 1% of children. A huge number, millions.
Putrino describes his team's use of an app to monitor patients. They found that many patients weren't recovering. Their focus was the brain. Microclots were affecting brain function. 70% of long covid patients experienced POTS. Vagus nerve knocked out of balance.

Putrino worked with Iwasaki to try to identify biomarker. Cortisol found to be low in long covid patients but Putrino does not think this is the biomarker.

People tend to think of covid as binary- they recovered from the acute illness but there is not a huge concern about long covid. Putrino would like to see long covid worked into risk equation. His message is to factor long covid into risk equation- use outdoors, use masks.

He recommends vaccines but is cautious about some vulnerable getting mRNA vaccines. Body of science emerging that for some with circulating spike it may be unsuitable. He is not anti vaccine but asks if booster has set a patient back and if so perhaps avoid another.

Recommends those with long covid get to a long covid clinic. If not available, ask physician for help taking requests for testing. Reach out to long covid /ME community.

Interesting comment about body of evidence emerging about some patients being vulnerable to MRNA vaccines. Something to do with circulating spike.

NB: @ahimsa has posted fuller transcript of the interview below. See for full details.

 

ok, this is weird; an article from Norway about Long Covid where Signe Flottorp is interviewed and is referring to medical research??

Nettavisen: Korona-senfølger: - En teori er at viruset har skadd et eller annet i kroppen

google translation: Corona after effects: - One theory is that the virus has damages something in the body

quote:

- We have more hypotheses than evidence. One theory is that the virus has damaged something in the body. Genetic factors, organ damage and autoimmunity are also theories being explored, says Flottorp.

Other possible causes that are mentioned are persistent virus, muscle fiber disruption and reactivation of other viruses.

There is currently little direct research-based knowledge about effective measures to treat and rehabilitate the late effects of covid-19. There are several studies underway both in Norway and internationally, says Flottorp.

 

Not exactly an endorsement of said medical research by Flottorp. More along the lines of, they have some ideas but none are proven. She also highlights mainly symptoms that they always explained psychologically. Anxiety, PTSD, depression, palpitations, exhaustion. I'm sure she has a misgiven idea on how to treat that.

 

Thanks for the alert @Binkie4

Here's a direct link to that CNN podcast that includes comments from David Putrino (includes transcript):

https://www.cnn.com/audio/podcasts/chasing-life/episodes/8b1424f0-4c23-11ee-92af-2b1db916dece

 

Thank you @ahimsa.
I 'think' the interview on CNN was shortened. I don't remember all the detail on the transcript... but that could be me.
I'll put an alert on my post to refer members to the transcript.

 

Said by Gupta in the podcast, my emphasis :

I have read that people should start to think of Covid vaccines/boosters like the annual flu shot. But I have yet to hear that treatments for Covid itself have come a long way in the UK.

1) In 2020 getting tested was easy here as soon as tests were available because the tests were free. But they aren't free any more and, personally, with my budget, I think they are now quite expensive.

2) The NHS says :

Source : https://www.nhs.uk/conditions/covid-19/covid-19-symptoms-and-what-to-do/

I'm surprised that I only have to "try" to stay at home. Why not remove that word from the advice or change the wording to much stronger advice to stay at home.

3) Treatments for Covid are effectively rationed, and also are hard to get hold of even if you qualify.

https://www.nhs.uk/conditions/covid-19/treatments-for-covid-19/

I'm lucky that I have an able-bodied, retired husband who could do the talking and the organising and the fetching if I was really, really sick with Covid, but many people are completely alone and probably wouldn't be able to do this quickly enough to get treatment if they were seriously ill. One issue I do have is that I don't think I fit the criteria of being at "highest risk". And getting hold of a GP on the phone is very difficult for many people in the UK these days.

 

Good points.

There was a temporary point where not endangering others was considered important by society at large. But now all the material support that would allow this, time off work, sick pay etc has been withdrawn. So now people will spread a deadly virus if it means they can get paid not be threatened with the sac and pay rent eat etc.

So yeah most of us can’t be safe. We’re trapped in total isolation or surrounded by infectious diseases.

 

Oh, thanks for the info!

I was trying to pass on the link that I thought was in David Putrino's post (@PutrinoLab) on X/Twitter. But I had some trouble when I clicked on that link (it's still a problem at times to view X/Twitter posts when you aren't logged in) so I had to guess based on the image.

He may have posted a link to a shortened version.

 

Not quite long COVID but interesting thread . Very long
https://twitter.com/user/status/1722351312723984734

 

Scientific American Is Long COVID Real? Here Is What Tony Fauci Told Me

quote:

Fauci told me, “This was before chronic fatigue syndrome ... even had a name.... [People were very sick] following a variety of what they perceived as viral infections.” He said that back then we didn’t have the diagnostics that we do now and that “there would be things about their demeanor and their ability to function, which were markedly compromised for variable periods of time.”

I found this off-the-cuff comment to be striking because it meant that ME/CFS activists have been struggling for at least five decades to get recognition for their disabilities despite having what medical anthropologist Emily Lim Rogers described in a 2022 paper as the “dual-pronged challenge” of people with ME/CFS confronting “stigma caused by its lack of biological verification and societal acceptance” and doing so “in bodies that are exhausted.”

Fauci said, however, that he and other infectious disease physician-scientists were soon swooped up into the still-ongoing global emergency of HIV/AIDS, leaving relatively less time and resources to devote to chronic, debilitating but non-fatal conditions. These illnesses frequently don’t get the attention they deserve and it leaves many people suffering without the possibility of a diagnosis, let alone a cure.


https://www.scientificamerican.com/article/is-long-covid-real-here-is-what-tony-fauci-told-me/

 

Excuses excuses excuses. It was all a choice, there was never any obstacle to solving this other than lack of motivation caused by denial, and it's all the fault of psychosomatic ideology. It's the same as a news article reporting that a bullet flew through a window and struck someone. Bullets don't fly themselves magically, someone pulls the trigger. It's described as some passive event that just happened to happen, no one responsible.

But the exact same choices are being made today, for the same reasons, with the same motivations. So it's not as if medicine learned anything here, and would not do it again: they are literally doing it again and again and will not stop until the massive harm done to millions is acknowledged and efforts are under way to repair it.

It's still a rather good message to send, but Fauci is in a unique position where he can go further than that, bruise egos in the process, and face no consequences from his peers. He has no fucks to give anymore. He probably genuinely feels bad for having been one of the people who pulled the trigger on this failure, but if he truly does, he has to go much further or nothing will change. This message has to piss off a lot of people before it will resonate. This was as textbook human-made disaster as it ever gets. As plain as locking all the doors to a building with people inside and setting it on fire.

This is the next frontier of medicine. It's so obvious how the discipline is stuck with its old ways, has proven unable to learn about illness. Everything is about disease, the rest is stuck in time. Illness, half of medicine, has effectively been completely neglected and will only go a bit further yet until this is addressed.