Long Covid in the media and social media 2023

The question then is 'what is excessive ? The main concern about antibiotics is not their use for bacterial disease in humans, but their (pointless) use in non bacterial and non bacterial risk diseases in humans PLUS the mass unwarranted use in farmed animals with its consequence of release of antibacterials into the wider environment. So far antivirals aren't widely subject to the same pitfalls, also virus chemistry is different to bacterial chemistry and there's perhaps some constraints of specificity that can be applied to viruses that are not so easily applied to bacteria.

Even so, there is probably cause for concern - an opinion piece so not definitive science, but note the worry about environmental exposures via waterfowl: Potential Emergence of Antiviral-Resistant Pandemic Viruses via Environmental Drug Exposure of Animal Reservoirs also Why the veterinary use of antivirals in Egypt should stop?

 

Thanks for pointing this out. I’ve just listened to whole segment.

With BBC radio 4 editorial perspective and women’s hour having a strong bias in favour of establishment interests I had expected a painful listen. As was indeed the case.

They had invited Dr Binita Kane to give the perspective of people looking for preventative public health environmental measures and to advocate for medical care for LC patients. She described these patients as seriously ill. As a medical consultant she was well placed to give her opinion and as a parent of a very sick child had intimate family connection as well as her professional relationship to the subject.

Dr Kane had- in desperation since no other was available-taken her child for untested treatment in Germany. This treatment worked very well for her daughter who has been able to resume her education and childhood activities.

However this decision to seek experimental treatment for her daughter made Dr Kane an easy target (it is my suspicion that this is at least in part why she was chosen as the voice for change) for the opposition guest who was strongly arguing for not going outside of evidence based treatment. This meant no treatment. Instead volunteering to do rehab. Good results were claimed for these “specialist” Long Covid clinics. However no actual evidence was presented.

In summary Drs suffering longer lasting effects of LC will be advocating for infection control, environmental mitigation measures, biomedical research and treatment. Whereas those not effected will continue to peddle “lifestyle” as means to “recovery”.


If anyone is curious about the discourse but looking to conserve energy, I suggest a listen to first and last 3mins that should more or less cover it.

Please note the tone of voice of the NHS Long Covid clinic Dr as she has her last word.

 

Interesting because Melissa Heightman is a specialist in respiratory, just like Benita Kane - but of course Benita has direct experience from a daughter with Long Covid.

This seems to flag the one-dimensional focus of someone in respiratory running a service and the issue of them 'fixing the bit in their area' then shoving off to wherever - which always seems to be physio or psych for no good demonstrated reason.

I'm not sure she didn't need to resort to a bit of answering a different question to that answered re: HELP apheresis. She described the German stuff as research ie trials, and then said 'in drug-thinning meds' and then said it wouldn't be useful to offer as treatment due to it needing a trial. WHich is basically circular? Isn't it?

Then of course a lot of banging on about their preferred territory of evidence-based bla bla - yet didn't answer why aren't they trialling it here?

And not really answering it by fibbing about saying physio is effective. But she must know - as she made a point of saying at the start the clinic has a very mixed sample of patients with ME-type long covid as well as those with 4 weeks after or breathing issues - that isn't true for the same condition, so isn't it naughty to cite effectiveness for respiratory when it is talking about those for whom the same treatment isn' effective and could be harmful?

Yes her tone/tactic is patronising - I think the host was trying to keep it on topic and ask her whether they are actually deprioritising and helping people properly. Lots of cliches in reply with buzzword galores like measuring, evidence-based - which makes you wonder why they aren't following the stats and doing the measuring to pick up on it not working for PEM/PESE. 100% agree @Ash that she kept citing 'people really do benefit from' and then citing generic things like support with mental health, pain fatigue but all empty - no stats and no specifics. Disappointing really, but I guess she'd been prepped to give nothing - so noone could disagree with nothing etc

well done on Benita for noting PEM/PESE, tho a shame she couldn't point out how many/what a proportion that is - rather than it being an anomolie or unusual. It's a shame to have the two-speed element created by having the droning party-line having to intersperse the reasonable questions from someone who was at least as expert in the same area as the woman she was asking. Stuff like this highlights the issue of the 'balance' line when only one side is playing ball of answering questions put to them and staying on topic as it is having someone whose objective is to keep it off a debate about the topic derailing the point of something.. but hey ho, seems to be the common issue nowadays

EDIT: also sad on Melissa for stopping learning because Benita has the knowledge about the area Melissa doesn't at all (both have the same in respiratory), and yet she closes her ears as if it doesn't exist. I'm not sure her condescending tone works when you are trying to talk down to someone who is at least on your level with what you do know and way above you on what you don't. She should, if she had enough humility to be capable of learning, feel silly for that. It's clearly a new technique of 'if you adopt the tone' people will forget the 'knowledge difference' is the other way around?

 

Fortune — Leading COVID expert says not enough is being done to help long haulers: “There’s no excuse for this”

Interview with Dr Eric Topol, following publication of Long COVID: major findings, mechanisms and recommendations

 

There's no excuse for not mentioning ME/CFS either!

 

“Long COVID can lead to #chronicfatiguesyndrome. Doctors are working to help patients manage.”

https://bit.ly/3XsVwmZ

Sympathetic 7-minute segment on Texas radio focusing on ME/CFS & its connection with #LongCovid.

Includes a transcript.

A journalist, Amanda Morris, who covers disability for the Washington Post is interviewed & tries to get across what #MEcfs patients have told her about the symptoms, etc.

 

Another interview about the Nature paper where Topol fails to mention ME/CFS. It is incomprehensible to me why he would choose to do this.

 

Long Covid article from The New York Times with brief mention of ME:

Long Covid Is Keeping Significant Numbers of People Out of Work, Study Finds

quote:

“A lot of people can’t afford to not work and so they’re working when they really shouldn’t be, continuing to work while they’re sick,” said Ms. Bach. She said that the experience of people with similar post-viral conditions like myalgic encephalomyelitis and chronic fatigue syndrome suggests that some people who work despite their long Covid may have harder recoveries. “When people who have a condition whose hallmark symptoms are fatigue and brain fog go into work, they’re not going to be as productive and they’re probably reducing their odds of improvement,” she said.

 

I don't think this is an accurate description of M.E though. Resting isn't going to prevent a person from developing M.E, chances are is that it could prevent them from becoming worse.

 

It's certainly mentioned in the actual paper, so I would suspect this is a deliberate strategy in scientific communication to the public.

It's possible he recognises the stigma/bias/failure so wants to keep the focus on "LC". Mentioning ME/CFS in a general interview also risks confusing the audience, as you or the journalist are almost forced to detour off-message to explain the long and compound medical term and its history. It might also focus undue attention on fatigue, which we know is an inadequate term that is misunderstood by both lay and professional audiences.

 

Announcement by the Swedish Covid Association on Twitter earlier today (25th January):

 

We are all playing Covid roulette. Without clean air, the next infection could permanently disable you

https://www.theguardian.com/comment...vid-roulette-clean-air-ventilation-long-covid

 

Carinas son har levt med postcovid i flera år – nu kan han få hjälp
https://sverigesradio.se/artikel/carinas-son-har-levt-med-postcovid-i-flera-ar-nu-kan-han-fa-hjalp

The Swedish Covid Association comments on Twitter:
"After 3 years, a family gets in touch with a doctor who knows something about their son's condition. That it's newsworthy says quite a lot about the country's #postcovid care"

 

A Long Covid mis diagnosis of a child who turned out to have a brain tumour:

Doctors thought nine-year-old Aston had long Covid - but it was much worse
See https://www.hulldailymail.co.uk/new...WrEu7IEUu806fLPB4L9lWHt2RNC0vO922Xwpt19Boa4xw

 

The linked article in the above article (translated):