Long Covid in the media and social media 2023

[Jonathan Edwards]

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.

 

[tmrw]

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

180 million euros for Long Covid research

More funding will be available for Long Covid research in 2024. According to ARD information, the SPD, Greens and FDP agreed on this in the review meeting on the draft budget.

How does Long Covid develop and how can it be treated? Because not enough is known about it, it is to be better researched. The government wants to make more than 180 million euros available for this in the coming year. According to information from ARD-Hauptstadtstudio, the SPD, Greens and FDP are surprisingly planning more money for Long Covid research in the budget. Federal Health Minister Karl Lauterbach (SPD) had originally envisaged 100 million euros.


Model projects for children and young people Following discussions in the Bundestag, the draft budget includes around 52 million euros for model projects to care for affected children and young people. In addition, the aim is to better research the clinical picture of Long Covid and find suitable therapies. Around 81 million euros have been earmarked for this in the health budget and 51.5 million euros in the research budget. Green politician Paula Piechotta negotiated the health budget and her party colleague Bruno Hönel negotiated the research budget in the budget: Both emphasize that the funds strengthen research into diseases such as post Covid, which are not yet conclusively understood. The ministries for research and health must now coordinate to ensure that the money flows into "high-quality projects".

(…)

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

 

[FMMM1]

The clinicians need to demand the tools in order to be able to care for their patients. Instead they've been happy to spin their wheels and fail their patients with psychosomatic nonsense for decades.

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?

 

[rvallee]

I think I see what you mean -- these folks "mean well" in the sense that they think spending money on biomedical research is a waste? And what patients really need is a CBT, GET, psychotherapy, etc.? So they are helping society by saving NIH from wasting money?

Is that right?

Anyway, it's too hard to get my head around this so I'll just let it go for now.

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.

 

[rvallee]

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.

 

[Midnattsol]

I'm a bit torn on this article in NRK. ME patient advocate call out our Health Directory for saying we know so little about long covid an for allowing LC patients to go through treatment we know harm ME patients.

The replies from the directory of health as just meh.

ME sufferer Heidi confronted Nakstad
For the non-Norwegians, Naktstad is the second in command in the Norwegian Directory of Health and have been doing most of the communication work since early on in the pandemic.

 

[shak8]

NZ's The Post: Here’s why you really don’t want to get Long Covid

Louise Thornley is a science communicator with a background in public health.

I’ve had to give up my job, and go onto a benefit from Work and Income. My social life has shrunk because I don’t have the energy. This year I missed a planned trip and five 50th celebrations. This life-changing sickness stops us from doing what we want. The loss is profound.

For me, Covid came after 12 years of ME/CFS (formerly “chronic fatigue syndrome”) and fibromyalgia. These related conditions upped my chances of Long Covid.

I’m only in the “mild to moderate” box. Others have it far worse: a quarter of people with ME are confined to home or bed.

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?

 

[JemPD]

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

 

[SNT Gatchaman]

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.

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.

 

[Sean]

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

Remains to be seen, but at this stage if I had to make a bet I would say they are basically the same thing, or so closely related that they are the same for clinical purposes.

 

[dave30th]

And please tell me just how exactly you plan to "improve prognosis" via access to empathetic care.

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

 

[Kalliope]

TIME -

'How to End the Futile Blame Game Over Failed Long COVID Research'



'..... It is true that ME/CFS is still not well-understood and its research has been chronically underfunded. However there are decades of relevant clinical and research experience that should be productively and rapidly applied to Long COVID.

The established track-record of ME/CFS research exploring cause and pathogenesis has been singularly unproductive.

By analogy, the current research directed at finding diagnostic and mechanistic clues to Long COVID is a resource-intensive, lengthy uncharted process. In the ME/CFS paradigm it will produce further leads for more biomedical research, but with a low ultimate likelihood of helping patients.'





The Authors of the Time Article are:

Phillips M.D.,M.P.H., Vice President Science and Strategy, COVID Collaborative and Fellow of the American College of Epidemiology

Michelle A. Williams Sc.D. is the Joan and Julius Jacobson Professor of Epidemiology and Public Health, and former Dean of the Harvard T.H. Chan School of Public Health




Not a peep about the diversion of ME research resources to unproductive Psycho Social 'treatments'.

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.

https://twitter.com/user/status/1726249177662001510

 

[JemPD]

Decades of ME/CFS research exploring etiology and pathogenesis have been unproductive.

'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'

 

[Ash]

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.

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.

 

[Braganca]

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).

 

[Andy]

A new Piece written in Time titled "Long COVID Reseearch Needs a Radical New Approach"- “How to End the Futile Blame Game Over Failed Long COVID Research” has been published.

The article uses ME/CFS as example why there should be less biomedical research and instead a focus on things such as “social science research on actionable solutions applicable to at-risk subgroups”.

Aka “Biomedical research into ME/CFS has been historically underfunded and neglected leading to a disastrous outcome. Since LC is similar one should apply the same unsuccessful strategy here. Our Radical New Approach is the same old approach that is ineffective with every other disease."

The complete and utter ignoring of reality and the lack of any sensical argumentation continues…

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/

 

[Trish]

“For me, long COVID was life destroying” – Eric, a vicar from the UK, on how rehabilitation services gave him hope

In December 2021, Eric Bossward, a vicar from Oxford in the United Kingdom (UK) was feeling distinctly lousy. He’d caught COVID-19 several weeks earlier and although initially he had only mild symptoms, he was now feeling a lot worse, both physically and mentally, but had no idea why.

“The fatigue had become just unbelievable. I couldn’t think properly. I was suffering from horrendous breathlessness, as well as dizzy spells. I also had the most horrific anxiety, waking up every morning with an overwhelming sense of dread. I’ve had anxiety and depression in the past – and had medication for it – but this was way, way beyond anything I’d ever experienced before.”

The article continues with his description of the Oxford Long Covid clinic that he praises for emotional support and teaching him pacing. He also did the online opera company breathing and singing class and says it helped with breathing and feeling less alone. He's much improved now.

 

[EndME]

"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

 

[SNT Gatchaman]

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.

Article —

The young mountain runner displayed a glimpse of her future potential by winning an SM gold medal in Genarp at the age of 20. She followed that performance with a WC bronze in Chiang Mai, Thailand, in her very first international competition. This summer, Brangefält also came fifth in the WC in Innsbruck.

In a post on her Instagram account on November 4, Emilia Brangefält revealed the problems she was dealing with. ‘Been a while since I’ve posted anything here. And that’s because since the end of July my body shut down. Haven’t been able to train anything due to a extremely high heart rate. (120-150 bpm) just standing up’, she wrote.

She continued: ‘Just taking a walk is painful right now. Have been to the hospital and visit the medical over 20 times but every single blood test/ ekg/ cycle test is good. Still my body is super stressed although I have given it so much love the past months’.

 

[Midnattsol]

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.

Article —

Hits hard. Running in the terrain (mostly mountains where I live) was the first activity I had to give up when I got ill in my late teens.