Long Covid in the media and social media 2022

Moved post

Predictable... predicted... happening. Ugh. When people say "1 step forward, 2 steps back" it never really accounts for the possibility of steps in random directions that end up looping on themselves.

Did I read wrong or I just saw this morning that NICE has basically downgraded the LC guidelines as not a priority and won't bother much with it? Not that they've done any work worth a damn so far...

As for NICE's disclaimer that we "should not assume" that GET would be offered to long haulers... what to make of it when it's clearly happening? Way to make a strong case to assume the worst of you.

https://twitter.com/user/status/1489294510714728450

 

https://www.bbc.co.uk/news/uk-wales-60287344

 

I wish I could swim 20 minutes without pause... Maybe one day, with the right treatment.

 

Pretty sure I've read somewhere that Charles Darwin suffered from ill health (ME-like symptoms?), and took cold showers to help with symptoms.

 

The BBC seems to be shining a little light on LC this morning.
Radio 4s Today Program at 8.50am had another young woman talking about similar symptoms, although no mention of cold water swimming. This was followed by Sir Terence Stephenson of UCL announcing a research definition of Long Covid.
He was very clear on LC being real as the study that produced the definition had a control group of teenagers living in lockdown without a positive covid test which a LC cohort were compared to. He was keen to point out that patients and carers were very involved in the process of forming the definition .

 

Terence Stephenson is the new head of the HRA and is doing the clock long covid study with Trudie Chalder and Esther Crawley. https://assets.publishing.service.g..._and_young_people_with_Long_Covid__CLoCK_.pdf

 

Thank-you for pointing this out. It is hard to see his involvement/commentary as a positive thing, and difficult to imagine that he does not know the background.

 

A tweet from the Putrino Lab, who are investigating Long Covid.

Discussed here
Is Long Covid a type of ME/CFS? Discussion thread

 

National Geographic As long COVID cases grow, clues emerge about who is most at risk

Quotes:
Each risk factor was linked to specific long COVID symptoms. Those with autoantibodies, for example, tended to experience fatigue and respiratory symptoms. Type 2 diabetes was associated with the common symptoms of respiratory viruses, like fatigue. And reactivation of the Epstein-Barr virus was associated with neurological symptoms, such as brain fog, difficulty sleeping, and memory loss.

Those findings corroborated previous results, says Michael VanElzakker, a neuroscientist at Harvard Medical School and Massachusetts General Hospital. For instance, research has connected resurgence of Epstein-Barr with diseases such as multiple sclerosis and chronic fatigue syndrome, also known as ME/CFS.
...

In a review of research on SARS-CoV-2 and other RNA viruses published in October 2021, VanElzakker and his colleague Amy Proal, a microbiologist at PolyBio Research Foundation, a research nonprofit in Kenmore, Washington, proposed a number of other possible routes to long-term symptoms. Among them: The virus might injure organs, persist in tissues, or disrupt the microbiome in ways that could cause inflammation and trigger neurological symptoms. The virus might derail the immune system, spur blood-clots, or disturb nerve signaling in the brain stem and in the vagus nerve, which could lead to symptoms resembling chronic fatigue syndrome.

Or, much like the reactivation of Epstein-Barr, microorganisms that normally inhabit us without causing trouble may start sparking problems when a SARS-CoV-2 infection stresses the immune system.

...

Eventually, a biological understanding of long COVID could produce treatments that anyone could take to prevent lingering symptoms. “You get sick, you're treated aggressively, you're done,” Nath says. “You don't even need to know whether you are at risk or not.”

 

Popping up after a long-time absence to share this pretty good editorial from New Scientist:


Long covid – the best thing that ever happened to functional disorders
https://www.newscientist.com/article/mg25333753-800-long-covid-the-best-thing-that-ever-happened-to-functional-disorders

TOO many people are ill and can’t be properly treated. They have “functional disorders” like myalgic encephalomyelitis (ME), aka chronic fatigue syndrome (CFS), that are life-altering and often disabling, but with unclear causes. Doctors struggle to find anything out of the ordinary in blood tests and other investigations. All they can do is try to relieve symptoms.

Now, tens of millions have developed a functional disorder at the same time: long covid. This can set in after infection with the SARS-CoV-2 virus and last for months or even years. Despite being initially dismissed by many doctors, people with long covid have campaigned for the illness to be recognised and studied.

“Just because a condition is unexplained, it doesn’t mean it is unexplainable”

Researchers have now identified possible underlying causes, and are devising and testing treatments, some of which may be in use this year. This will have felt like a protracted wait for many of those with long covid, but is still an incredibly fast turnaround.

Other functional disorders need the same attention. In some cases, like ME/CFS, we have clues to what is going on, even if that hasn’t yet led to treatments. Others, like fibromyalgia, a condition of widespread pain, are more mysterious. Diagnoses may be umbrella descriptions, hiding a range of physical goings-on that manifest as similar symptoms.

But “unexplained” doesn’t mean “unexplainable”. There is evidence many conditions can be traced back to infections with mild initial symptoms. Long covid isn’t the only post-viral condition: for example, there is also a post-Ebola syndrome. Multiple sclerosis, a degenerative nervous system condition, seems almost exclusively to arise in people infected with the Epstein-Barr virus behind glandular fever, or “mono”.

Functional disorders have been neglected for too long, despite their toll on people’s well-being and society. The research momentum that has built up around long covid offers hope to the millions of people who have it, but also to millions with other functional disorders. Long covid looks like proof that these conditions, if they are pursued with enough determination and rigour, can be understood and properly treated.

 

ME is supposedly not as mysterious as fibromyalgia but fibromyalgia has FDA approved treatments and ME has none.... Sigh!

 

The Swedish National Board of Health and Welfare published updated national statistics on long covid yesterday (24 February).

https://www.socialstyrelsen.se/glob...ment/artikelkatalog/statistik/2022-2-7778.pdf

In comparison, the Royal Swedish Academy of Sciences' expert group on covid-19 estimates that between 50 000 and 100 000 people in Sweden have been or are currently suffering from long covid (an estimation mainly based on scientific research studies done in the UK). Their reports are available to download here.

Also, the Swedish Corona Commission published their final report today. Summary in English here (pdf). Reuters has published a news article on it in English: "Commission finds Sweden should have clamped down harder as COVID hit."

 

They usually don't though. It's annoying seeing this lie being repeated so often. There literally aren't any approved drugs, how is that even supposed to work? Whatever.

But this is highly misleading. LC is the best thing to have happened to people suffering what some ideologues in medicine are calling "functional", whatever they mean by that. For the people pushing the functional ideology, it's the worst thing to have happened and they will rage about having their toy taken from them to their grave. The people behind it will be furious with any bit of progress and will try their hardest to sabotage all significant efforts that don't act as mere confirmation bias.

 

A personal story about the desperate search for treatments
New Scientist DIY treatments and clinical trials - one person's tale of long covid

quote:
Will these interventions work? Only time will tell. But like many other long haulers, I am willing to try anything. So, I find myself googling “hyperbaric oxygen therapy near me”. I talk to my family doctor about prescribing low-dose naltrexone, an off-label drug for chronic fatigue syndrome, after seeing it being tested in trials for long covid. I look up nitric oxide that bodybuilders take to improve blood oxygen levels in their muscles and wonder whether I should talk to my doctor about that next.

In my own desperate cohort at home – sample size of one – I really need something to work.

 

The Sydney Morning Herald Inside a long COVID clinic, a chronic condition is revealed

Quotes:
Recognising the complexity of this new condition, Irving established a multidisciplinary team of specialists at the Royal Melbourne’s long COVID clinic, including psychiatrists, exercise physiologists, sleep specialists and music therapists.

They listened to patients’ symptoms and formed individualised management plans to coach patients back to health. These typically involve a phased return to work, exercise and social activity.

Psychiatrist Holmes drove a unique approach where the mind and body were not seen as separate entities but as interconnecting systems, Irving says.

...

“If you’re the type of person who succeeds by putting a lot of energy into something, and that if you’ve got a problem, you solve it by being energetic, then you probably haven’t encountered a problem before where doing nothing was the solution,” he says.

“One of the nice things we’ve learned is that you can look a new patient in the eyes and say, ‘look, you will improve and the speed of improvement will depend on a number of factors, including not running into roadblocks such as doing too much’.”

 

This article encapsulates the incompetence, ignorance (of history, post-viral illness and ME/CFS) and belief in pseudo-science that infests the vast majority of the medical profession in Australia. I was thinking about writing a letter in response to the newspaper, but to correct it all would require an article double the length of the original.

Even taking into account these moronic, nonsensical treatments that Australian Long Haulers will be subjected to, it says a lot that they're still treated far better than anyone with ME/CFS will ever be.


That being said, it will be very interesting to watch what happens to Long Haulers in my home city. We had very low levels of infection here until borders were opened at the end of 2021 (only 900 cases) so there have been very few reports of Long Covid and virtually no awareness that Covid can cause long term symptoms.

Omicron is apparently causing 98% of infections here and we have now had over 146,000 cases. Judging from some posts on Adelaide-based forums, it looks like Omicron still causes lingering symptoms that look very much like Long Covid. All those affected mentioned that their GPs completely dismissed their issues (not surprisingly in spite of the RACGP's waffly, useless guidance on dealing with post-acute Covid).

 

DW News has made this mini documentary about Long Covid with people from India, Germany, Kenya and USA all talking about the same set of symptoms and struggles. The part from USA also includes additional struggles for people of color with Long Covid.

One of the doctors interviewed, is Bettina Hohberger, an ophthalmologist at Erlander University Hospital who discovered that the blood supply to the eyes of Long Covid patients was poor. She's testing the drug BC007 that she hopes might have an effect on patients with auto immune based symptoms. There's a patient who improved much after two weeks on the drug.

Another German doctor works with rehabilitation of Long Covid. They've had 3 000 Long Covid patients so far and can offer psychological support and physiotherapy in "relaxed setting". Pacing is mentioned as important, as in not overdoing anything and only moderate exercise.

https://www.youtube.com/watch?v=5YDMTfesQWM

 

https://www.washingtonpost.com/wellness/2022/02/28/long-covid-symptoms-treatment-recovery/