Long Covid in the media and social media 2023

Some very dumb people trying to advertise multidisciplinary rehabilitation again.

I actually think the general public might get a bit streetwise about this sort of bullshit if they flout it in the press much more. Chanting mantras about multidisciplinary teams amongst each other like Buddhist monks is all very binding and chummy, and it may go down well with some forms of limp journalistic zeitgeist but what will the ordinary person make of of it?

My suspicion is that most people with any experience of having post Covid problems, like myself, or people around them having problems is to think 'yer what? How is all this lovey-dovey rehab (especially for minorities and for coloured people and stuff) therapy stuff going to do anything?' The dripping condescension is enough to put anyone off.

Some people may swallow the story, maybe. But my suspicion is that I large proportion of readers will get the fact that these people have nothing to say beyond trying to sell a really boring product.

 

idk if some of the money will go into specific ME/CFS research. We will have to wait for the call to proposal I guess.

Germany

https://www.tagesschau.de/inland/long-covid-forschung-100.html

 

Nailed it, thank you - should be the mission statement on Science 4 ME! - it is also the role of patient advocates i.e. us to help deliver the "tools" for clinicians?

 

They think they're creating the best outcomes. They just either have poor judgment, or very different evaluations about those outcomes. For the most part they just have no clue, and being professionals it still amounts to incompetence. But they very likely believe that it's the best outcome anyway. Like I said, people are so freaking weird.

Most likely they believe in the psychosomatic model so this is consistent with their judgment on what are the best outcomes. They just happen to be detached from what those outcomes really are, and will never truly see the outcomes they create. Politicians are the same, they always think they did their best against impossible odds and enemies within and without. Even when their policies crash and burn.

 

Weird PR wire from the American Public Health Association from their 2023 Annual Meeting & Expo giving the false impression that there are effective treatments for Long Covid, at least for adults, even as the article itself contradicts the headline.

These medications can manage long COVID in adults and children
http://publichealthnewswire.org/?p=long-covid-medications-session-2023

Elshabrawy, who was trained as a pharmacist, shared some of the medications that have been shown to manage long COVID in patients. These include:

• Antibiotics such as azithromycin
• Antiviral compounds such as remdesivir and favipiravir
• Antibodies such as Infliximab and Tocilizumab
• Antidepressants
• Antihistamines that include H1 blockers

There are also supplements that have been shown to help, he said. These include multivitamins, Panax ginseng plant extract, omega-3 fatty acids and Coenzyme Q10.
...
The medications used to manage long COVID in adults are either not approved in children or the side effects in children outweigh the benefits, Spears said.

“It really leaves us with just supplementation of vitamins and minerals to manage this syndrome,” he said.

Vitamin C, magnesium and selenium were shown to be effective in reducing the fatigue and brain fog. In addition, vitamins C, D and E and magnesium and selenium have anti-inflammatory effects, and some studies showed they improved thyroid function, which can lessen some of the symptoms children experience, he said.​

None of this is any effective. Best case antihistamines do help but that's very controversial because it amounts to MCAS and that's largely dismissed, and subsumed by the fashionable trend of functional gut whatever.

 

Referring to her having ME and FM, as you quoted above, she writes "These related conditions upped my chances of Long Covid." I haven't seen published evidence of that. Have you @SNT Gatchaman?

 

I am also keen to know the answer to whether there is any reliable data on this question

 

I've seen this framing on a number of occasions. It always seems to be someone who had mild ME/CFS who then becomes much worse following Covid, including with new symptoms. They often indicate that long Covid is quite different from ME/CFS, and so a different disease, but I think they just hadn't previously experienced the range of horrible symptoms that ME/CFS can bring. Eg if you were exercise intolerant, with myalgia and maybe a bit of brain fog you may have a diagnosis of ME/CFS. Worsening post Covid then causes much more profound orthostatic intolerance, noise hypersensitivity, sleep failure etc with greatly increased disability.

I may be wrong, but I don't draw the distinction between ME/CFS and LC that many seem to.

 

I wondered that as well. How do you improve prognosis if there's no research on what's causing the symptoms.

 

Garner has shared a STAT opinion piece from the same authors with a comment from Flottorp (Research director at the Norwegian Institute for Public Health). They're both quoting from the article.

Garner: "Scientific evidence shows that post-infectious fatigue syndromes (including long Covid) can have a spectrum of inseparable pathobiological and psychological components."#longcovid #MECFS

Flottorp: "Decades of ME/CFS research exploring etiology and pathogenesis have been unproductive. The current research directed at finding mechanistic clues to long Covid is.. likely to produce further leads for more research, but with a low ... probability of success in helping patients."

Flottorp recently said for the very first time in a Long Covid article that perhaps the virus do causes something wrong in the body. But with this quote it seems that she's already given up when it comes to developing treatments.

 

'Decades of searching for Roman artefacts in that 20 acre field have been unproductive... Hundreds of people looked at it out of the window for years and couldnt see anything, and several have been walking around the perimeter with a metal detector. Dozens of digs have even been done in a small area of the north west corner, and so many people have climbed the tree in the adjacent field that i've lost count... and nothing has ever been found'

 

People with ME were claiming the predicted effects of this viruses post acute infection sickness and disability before it had had time to appear.

Following SARS there was a decent percentage of survivors who didn’t recover. Post viral complications were assured for some people who lived through acute infection.

Post viral illness must share similarities. Post any infection or assault on the immune system that causes some kind of lasting dysfunction for reasons yet to be discovered.

For people who don’t recover from COVID-19 and for whom no structural or chemical clues as to other damage caused looked for or discovered who fit the ME criteria have ME.

But this doesn’t mean we can be sure they don’t have long COVID also. LC is an umbrella and having the ME spokes doesn’t mean you necessarily hit all of them.




We cannot know what long COVID is yet it’s too early, we don’t know what COVID 19 is going to do to any of us, with or without LC.

With any virus and especially and novel pathogen such as this. With a death toll that is hard to contemplate. There are many options as to what might be happening to the body. Many of these seem in presentation to overlap with ME. Since the beginning of ME is usually also a virus we may guess that the underlying processes are the same for ME and LC. That’s reasonable the illness has very similar characteristics and a trigger that matches.

But we already guess that ME may not be one. We stand back from getting ahead of the evidence but the common guess here is that it isn’t. So it seems incongruous to be in a hurry to roll LC in, which also may not be one thing.

 

Decades of research have not led to very effective disease modifying treatments for nearly all neurological diseases — eg ALS, Parkinson’s, Alzheimer’s. But no one is suggesting we give up on those diseases. A lot of the research into those diseases was trend based, and hyper focused on one theory for years, and now many research groups are redirecting efforts into treatments against things like inflammation (Parkinson’s, Alzheimer’s).

 

Trial By Error: Column in Time Magazine Calls for Halt to Biomedical Long Covid Research

"Time magazine recently published an opinion piece that calls for an end to biomedical research for long Covid—based, it seems, on what the authors view as the ME/CFS precedent. The title: “How to End the Futile Blame Game Over Failed Long COVID Research.” Although research still has “a vital role” to play, they argue, it needs to be “a different kind” that “no longer focuses on biomarkers and mechanisms” because such studies “are sure to provide ‘promising’ but false leads and divert resources.” (The piece was adapted from a recent article that was published by STAT.)"

https://virology.ws/2023/11/21/tria...s-for-halt-to-biomedical-long-covid-research/

 

"Urgent call for action on long covid" - https://practicebusiness.co.uk/urgent-call-for-action-on-long-covid

"As reported by BMA, the BMA and RCN are urging the government to urgently address the support for healthcare workers affected by long covid.

A year ago, the Industrial Injuries Advisory Council (IIAC) published a paper outlining a large body of evidence showing that there is a significantly increased risk of Covid-19, subsequent illness and death for health and social care workers, and therefore recommended to the Government that five specific conditions, resulting from complications of Covid-19 be prescribed as an occupational disease for health and social care workers1.

However, to date, the Government has not responded to this paper at all...

The BMA and RCN have now written to the Secretary of State for Work and Pensions2 urging him to act on the paper’s recommendations, noting that more than 50 countries worldwide already provide formal legal recognition for key workers who contracted Covid-19 as a result of workplace exposure, and offer corresponding compensation and support schemes."


Related to:

"The British Medical Association (BMA) and Royal College of Nursing (RCN) are asking the Government to make urgent progress on supporting healthcare workers with Long Covid, a year after the Government’s scientific advisory board on industrial injuries made recommendations for ministers to do so." https://www.bma.org.uk/bma-media-ce...gnising-long-covid-as-an-occupational-disease

 

https://nitter.net/davidsteadson/status/1727431285994578299

David Steadson on Twitter —

Spoiler: Content Warning

I'm so <furious emoji> young Swedish athlete has killed herself after being unable to train due to a "mysterious" illness. What she describes is very clearly POTS, a common manifestation of Long Covid.

Dr Claire Taylor replying on Twitter—

This has to stop. POTS is either being missed or just ignored most of the time. Nearly all my patients have undiagnosed POTS. It needs aggressively treated. I don’t know how we can raise more awareness. Perhaps NICE need to consider a clinical guideline for PoTS.

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