Long Covid in the media and social media 2023

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Dolphin said:
Good news though, with regard to the commentary, I don’t think it’s true that governments provide all the necessary money to make speedy progress on all illnesses. Privately raised money is important.
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More on this story:

Dutch Post-Covid physicians and scientists no longer wait for governmental research programmes - they now start their own
programmes...

Source,

https://www.volkskrant.nl/wetenscha...-zelf-onderzoek-doen-naar-postcovid~b5c4917b/

No paywall,
https://archive.ph/B4z9

In order translate the text from Dutch to English, copy the text to,
https://translate.google.com/?sl=nl&tl=en&op=translate
 
rvallee said:
We could probably raise 5-10x as much money easily if medicine were to simply acknowledge that it's a serious issue, whether we are talking about LC or ME. Private fund-raising requires legitimacy. All diseases that manage this have significant recognition, have many MDs on board and, especially, no detractors.

It's actually impressive how much has been achieved with medicine mostly working against us. But this is the main blocker.
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Legitimacy isn’t binary but a spectrum. ME like LC has some legitimacy. There has been a reasonable amount of fundraising for ME/CFS research in some countries but not so much others. For example, in your country Canada there was no research fund until the Open Medicine Foundation Canada started there a few years ago. So presumably virtually no fundraising for research in a country of 38 or so million people. That’s not a good strategy to ensure speedy research progress because, to get back to my original point in reply to the Twitter comment, governments don’t fund enough research to ensure speedy progress for all illnesses. I think this attitude that governments are responsible for speedy research progress is what has held ME/CFS research progress back and the same could happen with long Covid (though long Covid does have an advantage over many illnesses in terms of government funding).

In life, I don’t think it’s a good strategy to wait till things are perfect before doing things (including fundraising for research). Lots of charities in general don’t have universal support but can still exist and make a difference just fine.

Anyway this has gone a bit off topic.
 
Dolphin said:
Legitimacy isn’t binary but a spectrum. ME like LC has some legitimacy. There has been a reasonable amount of fundraising for ME/CFS research in some countries but not so much others. For example, in your country Canada there was no research fund until the Open Medicine Foundation Canada started there a few years ago. So presumably virtually no fundraising for research in a country of 38 or so million people. That’s not a good strategy to ensure speedy research progress because, to get back to my original point in reply to the Twitter comment, governments don’t fund enough research to ensure speedy progress for all illnesses. I think this attitude that governments are responsible for speedy research progress is what has held ME/CFS research progress back and the same could happen with long Covid (though long Covid does have an advantage over many illnesses in terms of government funding).

In life, I don’t think it’s a good strategy to wait till things are perfect before doing things (including fundraising for research). Lots of charities in general don’t have universal support but can still exist and make a difference just fine.

Anyway this has gone a bit off topic.
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Perfection being the enemy of good is what they call that in NL and I think in English too. I think the WASGF3 finding illustrates that point to a degree, starts out with a woman writing to a researcher and that researcher doing an n=1 study. Might become something more. I've been trying to get people to donate, sign petitions etc. and it's frustrating as hell, but then when you see a couple familiar names pop up on change.org or you hear that your cousin has transferred a bit of money to a charity(omf in this case) it kinda feels worth it.

I also think people are more inclined to help when they see you trying to help yourself, whether that be governments or just people you know. I know there are lots of people that simply can't because of the severity of their disease and a lack of resources, but from my own experience telling people that I'm donating a little bit of money has made it easier to persuade a few others to do so too.
 
SNT Gatchaman said:
Salon: The doctors with long COVID who have been left behind
Long COVID is putting health care workers out of work with serious consequences for everyone

A running theme of articles focusing on doctors affected by LC. I hope it does some good.
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As someone who has done 30 years of research, Heeger knows that better research outcomes tend to follow the money.
“If there were to be 10 [times] more funding for long COVID research, biomedical scientists with a broad range of experience and expertise would flock to it,” he wrote. “Some of them would have ideas that would lead to key insights, enabling us to predict which individuals would have bad reactions to the vaccine, and critically how to better treat the underlying causes (rather than just the symptoms) of long COVID.”
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Same applies whether the money is public and private and the converse is also true: people leave fields when there is a lack of funds
 
A Swedish radio program (audio, 20 minutes).

Vetenskapsradion på djupet: När tröttheten efter pandemin hänger kvar – här är behandlingarna som testas mot postcovid
https://sverigesradio.se/avsnitt/na...ar-ar-behandlingarna-som-testas-mot-postcovid
Auto-translate said:
When pandemic fatigue lingers - here are the treatments being trialled for post-covid

Postcovid changed Eleonor Persson's life, but progress is slow while waiting for research breakthroughs.

No one knows how many people live with post-covid. And what exactly is post-covid? Severe fatigue, brain fog, fever, loss of smell and taste, stomach problems... the list of post-covid symptoms includes 200 different symptoms.

We need to find subgroups of this large syndrome, says researcher Anders Kjellberg at Karolinska Institutet, and infectious disease doctor Per Åkesson at Skåne University Hospital in Lund agrees. This is the only remaining post-covid specialist clinic in Skåne. Fewer and fewer patients are being referred there - but those who come can still not be offered much help.

At the same time, research is underway to test several different treatments for post-covid.

Contributors: Eleonor Persson, post-covid patient from Sjöbo, Per Åkesson, infectious disease physician at the post-covid specialist clinic in Lund, Madlene Holmqvist, infectious disease physician and PhD student Lund, Anders Kjellberg, researcher KI, Hanna Fries, physician and former ME patient.
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I haven't been able to listen to this one myself. A friend who has listened to it told me that "former ME patient" Hanna Fries says she is nearly recovered now, thanks to various medications and a neuroplasticity program.
 
Article in the Times today on Long Covid, specifically how to treat/recover from it predominantly based on one interview with a doctor from a LC clinic: https://www.thetimes.co.uk/article/...id-the-experts-on-what-really-works-x608dqjm0

The clinic is Oxford, and tbf the stuff from the doctor there isn't that bad (at least emphasises rest genuinely, notes that research has been based mainly on those who had severe covid and breathing issues acutely so isn't the same demographic that is at long covid clinics etc) apart from the sleep advice being the usual generic sleep hygeine and don't nap too much. I don't understand how someone can get the rest stuff and not push through, but not get that the sleep stuff might be related to the exhaustion of that and basically be talking about pushing through on sleep. But hey maybe that's just me that sees that fallacy as barn-door obvious and always has.

Anyway a few concerns on the article seems to be inserts that I could assume come from the journalist themselves as they aren't 'quoted' necessarily, but the second one of these is a bit of a 'classic' re: 'recovery' being about 'understanding recovery looks different to what you think it will' and the first being a dodgy as... description of the lightening process as if it is something benign that if it didn't come from the doctor (and even if it did) didn't need to be in there so makes me suss of 'connections/conflicts of interest':

Some long Covid sufferers swear by the Lightning Process, a brain-training programme that combines neuro-linguistic programming with life coaching, hypnotherapy and osteopathy. It is not on the NHS and is expensive. Tucker won’t comment specifically on the treatment but says: “Many patients are trialling lots of different therapies, many expensive and under-researched in the medical profession. But understandably people are desperate and need to get better so will trial everything that is suggested.”
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One thing to remember, they emphasise, is that you can recover. However, exactly what that recovery will look like is something that may require some adjustment in your thinking.

Once people finish coming to Fraser’s clinic they often don’t respond to follow-up queries, so it is hard to know exactly how fully they have recovered. But some patients who once had very busy lives have reported that they can no longer live at the same pace. That may be a good thing, Fraser says, if it stops them from overstretching. They will have a better idea of their limitations and a better balance in their lives.

“We had lofty aspirations when we first started to get people back to where they were,” Fraser says. “People are definitely getting better. Whether or not people get back to where they once were is a different question and one that’s harder to answer. Do we get people back to that kind of fast pace of life or a functional pace of life? They are two different things. We aim for the latter.”
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I don't understand how the medical profession can self-talk themselves into this delusion, which seems to be the psychosomaticists basically tricking everyone about their method being 'help' rather telling patients to learn to put-up-and-shut-up and measuring that, normally coerced, survey response whether it makes their health, life and happiness much worse or not. But I suspect psychosomaticists put the wellbeing of patients at the bottom of the stakeholder pile in their 'medicine', so...
 
In NRK today, Stavanger University Hospital have received funding to research long covid and genes: Never recovered from corona: - Without her, there would have been a hook on the door

- What is absolutely certain is that long covid is not imaginary, but has a biological cause, says Roald Omdal, senior physician and professor emeritus at Stavanger University Hospital.

:thumbup:

Last time Roald Omdal was in the news talking about Post Viral Fatigue having a biological cause, the article was accompanied by Vogt talking about psychosocial causes. PS is thankfully missing from this article.
 
bobbler said:
Article in the Times today on Long Covid, specifically how to treat/recover from it predominantly based on one interview with a doctor from a LC clinic: https://www.thetimes.co.uk/article/...id-the-experts-on-what-really-works-x608dqjm0
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Once people finish coming to Fraser’s clinic they often don’t respond to follow-up queries, so it is hard to know exactly how fully they have recovered
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Most people would respond to follow-ups from a good clinic that helped them. If they're not bothering to respond, it's an evaluation on your service. And that evaluation is: zero.

Hard to square the whole "gushing about LP" when this is literally what it is. I guess they don't bother checking.

The emphasis on "people can recover" is just weird at this point. Of course they can, it just happens less when people are sick longer, and the whole confusion has happened precisely because chronic illness is not counted and not diagnosed until it's past the point where recoveries are few, a completely arbitrary decision. What a dumb own goal that also happens to kick people in the face.
 
rvallee said:
Most people would respond to follow-ups from a good clinic that helped them. If they're not bothering to respond, it's an evaluation on your service. And that evaluation is: zero.

Hard to square the whole "gushing about LP" when this is literally what it is. I guess they don't bother checking.

The emphasis on "people can recover" is just weird at this point. Of course they can, it just happens less when people are sick longer, and the whole confusion has happened precisely because chronic illness is not counted and not diagnosed until it's past the point where recoveries are few, a completely arbitrary decision. What a dumb own goal that also happens to kick people in the face.
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I can see why they think ‘CBT’ and reframing how you see it works as people who are HCPs and not ill: if only we accept WE are the problem for calling being debilitated ‘a problem’ instead of distorting our thinking and nasty communications like them (which IS basically bigotry ie the definition of, core of, heart of what bigotry is ) and stopped expecting anything then it’s all great for THEM.


A whole system set up to remove the patient voice or body observations from existing - they just do what they fancy and ignore hearing or seeing the outcome and when they do ‘rephrase it’ as fine for us


Whilst of course at the same time such people also tend to give no leeway in workplaces or as friends for when we can’t do something on time or get up to get somewhere early etc and worse than hearing it and snarling at it just ‘won’t hear it’ when you say the reality snd they stick their replacement words in your mouth. They just disappear a person I can’t tell you how viscerally violating of one’s body that is yet gif some reason they think they atttitudd not the worst bigotry by de-existing reality ever.

even when they write that their claims are based on no facts and no follow up you can hear that they believe they are saying the opposite - it’s weird and so so so deluded
 
Once people finish coming to Fraser’s clinic they often don’t respond to follow-up queries, so it is hard to know exactly how fully they have recovered

Or even if they partially 'recovered' in the first place, in any meaningful sense.
 
Op-ed: Improving long COVID treatment by learning from the past
October 31, 2023 – Long COVID is not a new phenomenon, but rather another form of a previously known syndrome—and applying lessons learned from that syndrome could help with treatment, according to an op-ed in STAT co-authored by Michelle Williams, Joan L. and Julius H. Jacobson Professor of Public Health at Harvard T.H. Chan School of Public Health.

In the September 14 op-ed and an October 18 podcast, also with STAT, Williams and Steven Phillips, a Global Virus Network board member and vice president for science and strategy at the COVID Collaborative, noted that long COVID has the same characteristics as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Also known as post-infectious syndrome, ME/CFS is triggered by an acute infection and can lead to a wide range of long-term physical and cognitive impairments. The co-authors said that just like ME/CFS, research into the biological causes of long COVID has made little progress so far, and that more emphasis should be placed on improving patient care.

“Although much about ME/CFS is still not well-understood, decades of experience and research into this condition could be productively and rapidly applied to long COVID,” Phillips and Williams wrote. “That approach could help avoid missteps, focus investment priorities, ground societal expectations regarding what is achievable, and improve patient welfare dramatically.”
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https://www.hsph.harvard.edu/news/h...ng-covid-treatment-by-learning-from-the-past/
 
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Dolphin said:
Legitimacy isn’t binary but a spectrum.
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Agreed and I'll add that how real a patient's symptoms are treated is a spectrum too with psychologized physical symptoms scoring the lowest but the BPS Brigade try to portray us as irrational for not wanting to associate our illness with anything psychological. They can cry "Stigmatizing mental health" all they want but it won't change the reality of how we're treated.
 
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DigitalDrifter said:
Agreed and I'll add that how real a patient's symptoms are treated is a spectrum too with psychologized physical symptoms scoring the lowest but the BPS Brigade try to portray us as irrational for not wanting to associate our illness with anything psychological. They can cry "Stigmatizing mental health" all they want but it won't change the reality of how we're treated.
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I think that just by saying mental health is so stigmatized they're in fact stigmatizing mental health.
 
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