Long Covid in the media and social media 2022

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Kalliope said:
ah, at least he agrees GET is not appropriate for everyone
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He doesn't get it though, does he.
GET is not appropriate for anyone with a post-viral illness. There is no evidence base and no scientific rationale. When people are well they can exercise if they want to. There is no reason to think that even someone who is deconditioned from illness needs an exercise programme. Nor do people with lung damage need an exercise programme. What good would it do?
 
The advice to go to the gym is wrong on so many levels they need stated. The general idea that exercise is good for everyone and exercise is medicine is a very middle class thing if it is allowed to say that.

Humans evolved to be active. Exercise, doing activities for their own sake, is a very new idea (hunter gatherer communities can't get their head round it) and has only become important as we have become more active in our daily lives.

It follows that exercise is what you do once your daily activities are completed, not where you start but tagged on the end. If there is a slogan in this it is "Be active" Better to play running games with your kids than to leave them to run on a treadmill.

The importance in ill health is that there should be no suggestion of exercising until you can manage the activity involved in daily life. Encouraging people to try to shower more often is slightly acceptable but then most sick people would shower more often if they could.

Gym membership is fine if you can afford it and are well enough to do it (I would love to) but it is beyond the reach of large numbers of people. It also feeds into profits whether the cost is from the individual or the health service so cheaper options are the place to start.

It also patronising advice, confusing sickness with sloth so lazy people are only ill because of that so need encouraged to change their bad habits. It treats patients like children who do not know what is good for them and implies that people cannot believe their own reality. The truth is that patients want to get back to their previous lives. If that is sedentary then advice to healthy people to be more active may apply but never before they are back to normal.
 
According to US senator Tim Kaine, who sponsors the Long Covid bill and his himself suffering from chronic symptoms (appears to be neuropathy), there are other US legislators with LC symptoms but they aren't talking about it. Could influence the chance of this bill passing and maybe even having some teeth, though that's probably optimistic as what's needed is oversight and transparency.

 
On Swedish breakfast TV "Malou Efter Tio" today (video, 28 minutes):

Läkaren Stefan var nära att dö av corona – lider nu av långtidscovid
https://www.tv4.se/artikel/7qJY9w4w...a-att-doe-av-corona-lider-nu-av-langtidscovid
Auto-translate said:
Doctor Stefan nearly died of corona - now suffers from long covid

Tells of the fight - "Hard to talk still" - What we know about long covid.

Senior doctor Stefan Branth nearly died from covid-19. He then had long covid. Now he talks about his struggle over the past few years.

Researcher Judith Bruchfeld talks about what we know about long covid.

- If I close my eyes and go to sleep now, I might not wake up, says Stefan.

Watch Stefan talk about how close he came to death and how he is affected by long covid, in the player above.
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I'm too ill to watch it so I can't comment on it. According to comments on social media, ME was not mentioned.
 
Australian journalist, Tracy Spicer, has revealed she has been suffering Long Covid symptoms for a few months.



She mentions ME/CFS, medical gaslighting and PEM:

Unfortunately, since being diagnosed with COVID-19 at the start of January, I've been unable to exercise. A constellation of Long Covid symptoms has knocked me flat. These include debilitating fatigue, which is also known as post-exertional malaise, and heart problems. No underlying conditions, not that it should matter anyway. Every life is precious.

I recognise that I'm one of the lucky ones. Many 'long haulers' have much worse symptoms, for several years. And even more people have lived with myalgic encephalomyelitis/chronic fatigue syndrome for decades. My heart goes out to you all.
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*Listen to your body. Several doctors said I should gradually start exercising again. Each time I attempted to walk the dog or do Pilates, I collapsed in a heap for 48 hours afterwards. Yesterday, I saw epidemiologist and infectious diseases physician, Professor Greg Dore, at St Vincent's Hospital, Sydney. (Cannot thank you enough for this tip, Tracy Bowden!) Prof. Dore said to stop all exercise for three weeks, as it could well be exacerbating the condition.
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Imagine what might have happened if this sort of high profile basic research had been done with ME/CFS patients decades ago. Instead we got junk science around 'secondary gains', 'perfectionism' and 'malingering':

Long COVID study indicates “something concerning is happening”

Two new studies are reporting on an ongoing long COVID research project investigating the persistent effects of COVID-19 on cognition in the months after acute disease. The University of Cambridge-led research found many long COVID patients are experiencing significant and measurable memory or concentration impairments even after mild illness.

“Long COVID has received very little attention politically or medically,” said Lucy Cheke, senior author on the new studies. “It urgently needs to be taken more seriously, and cognitive issues are an important part of this.
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Around two-thirds of the COVID-19 cohort experienced symptoms of long COVID, defined as a symptom lasting longer than 12 weeks beyond initial date of diagnosis. Among those experiencing long COVID the new research found 78 percent had difficulty concentrating, 69 percent suffered brain fog, 68 percent reported forgetfulness and around 40 percent displayed a condition known as semantic disfluency (saying or typing the wrong word).

The study also found those subjects with long COVID experienced significant disruptions to their daily lives. More than half the long COVID cohort were unable to work for extended periods of time and one-third lost their job due to their illness.
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Perhaps most strikingly, the research found half the long COVID cohort reported problems getting doctors to take their persistent symptoms seriously.
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Good thread on medical disinformation and how quickly it spreads out of absolutely nothing. A speculative hypothesis is being presented as validated research and people who should know better are spreading the hopium like it's going to expire next week.

I also distinctly remember a few weeks ago when some news media were pushing the idea that "COVID toes" doesn't exist and is probably caused by people walking barefoot in their home because of the pandemic, a farcical claim that was a minor hypothesis in a paper that simply failed to validate a correlation between symptoms and biomarkers. About as farcical as a trial failing because people talked about it negatively in some news media.

 
Zero recognition that this is not at all a new phenomenon, completely whitewashes the entire history, even though it's especially significant in the UK, even happening simultaneously if we consider the NICE guidelines. In itself this is a massive failure that suggests a major systemic inability to learn from experience and recognize patterns in medicine. There should not be taboo subjects in a field of science. It's blatantly clear that this being an old and ongoing problem is a forbidden topic.

 
Andy said:
And yet the article manages to avoid talking about ME.
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Has anyone reached out to people such as DA who may be sympathetic; if people mention ME/CFS repeatedly in their setup of the problem it will make it fairly hard for people to write around it. I think many people don't do this because they don't have a clear enough grasp of why LC overlaps with ME re: diagnostic criteria. Of course people don't speak about it for political reasons, but maybe this can change with the new guideline, etc, as this is a good opportunity to start again and say that things are changing.

A lack of proper framing of the issues is really harming the accuracy of commentary about Long Covid, and I'm sure that's not what many researchers want. People who have a history of saying and doing wrong things about ME have had way too much influence in the last two years and have been able to frame the problem in the way it's convenient to them. Something needs to be done to counteract this influence. It's just politics, there is nothing scientific about it.
 
A valid point for most research funding, but this reveals that medicine simply blocks itself from doing anything when it fails to figure out the first step. This is failure by design.

 
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