News about Long Covid including its relationship to ME/CFS 2020 to 2021

[Leila]

Article about LongC & the Covid Symptom Study by King's College.

This was new to me:

"The King's researchers have created a piece of computer code to pick out, from the start of a coronavirus infection, who is at risk of long Covid.

It is not perfect. It correctly identifies 69% of people that go on to develop long-Covid, but also tells around a quarter of people who would recover quickly they would get long Covid too."

From what I've read on Twitter there is much criticism about the study design, many people simply stopped typing in their data because they either didn't find their symptoms represented or just gave up in general. So maybe there's a lot more people being sick after 12 weeks...

The article also refers to this awarness film by the government.

 

[Milo]

Article about LongC & the Covid Symptom Study by King's College.

This was new to me:

"The King's researchers have created a piece of computer code to pick out, from the start of a coronavirus infection, who is at risk of long Covid.

It is not perfect. It correctly identifies 69% of people that go on to develop long-Covid, but also tells around a quarter of people who would recover quickly they would get long Covid too."

From what I've read on Twitter there is much criticism about the study design, many people simply stopped typing in their data because they either didn't find their symptoms represented or just gave up in general. So maybe there's a lot more people being sick after 12 weeks...

The article also refers to this awarness film by the government.

I am surprised there is no history of childhood abuse’ in their risk factors. Maybe that will come later (sarcastic tone)

 

[Leila]

Being a young woman should be enough to do the job. And being married. Or not. And having children. Or not. ;-)

 

[Sly Saint]

3 doctors with long-covid interviewed on itv news meridian last night; no mention of ME/CFS.
Re mental health of health professionals in NHS; largely due to being overstretched. ie the NHS was hugely understaffed before the pandemic, now it has even less docs, nurses etc (600 died from covid and many more off-sick): no amount of psych therapies will fix that.

Long Covid: Doctors among hundreds suffering from debilitating condition

The devastating impact of Long Covid on the medical profession has been highlighted by three doctors from the South.

They are among hundreds affected by the debilitating condition that causes everything from heart problems to breathing issues.

Many of those who have spoken about the condition are unable to return to work and those who have, are struggling with the demands of the job and the extreme fatigue.

The effect on the NHS has been described as "completely unprecedented" at a time when doctors are needed more than ever before.

Three doctors, Kaveri Sameer, Victoria Woods and Sarah Burns, are all suffering the debilitating effects of Long Covid with symptoms ranging from heart problems to a constant fever.

full article and video here:
https://www.itv.com/news/meridian/2...undreds-suffering-from-debilitating-condition

 

[Trish]

While I don't think it's good to use 'delusional' there, that also just doesn't sound right to me. Where was that hypothesis for PACE laid out? I can't think of a quote from PACE that is so strong.

I think delusional is a very appropriate word to describe the psychosocial hypothesis PACE was based on. David's article is science journalism, not a scientific paper. Sometimes strong words are needed to get the point across.

 

[Mij]

Being a young woman should be enough to do the job. And being married. Or not. And having children. Or not. ;-)

I wonder if their 'prescription' will be to go to the mall and "buy something nice" like I was told by an ER doctor.

Btw, I have always bought myself something nice, but it didn't prevent me from becoming ill.

 

[rvallee]

 

[rvallee]

“We just don’t know what’s happening in our bodies”: Covid-19 long-haulers are still suffering

https://www.vox.com/21523448/covid-long-term-effects-symptoms-damage

To truly answer the question of who is most at risk, scientists will need to do longitudinal studies tracking large groups of Covid-19 patients with both mild and severe symptoms, for months or even years. These studies would ideally include biologic samples over time as well as self-reported symptoms and medical histories. Then they’ll need to use analysis methods to eliminate confounding factors in order to identify what might put people at risk.

It sure would be great if people did just that. Sure looks like a lot of people in high places are expecting answers to come about magically without doing the work. Which is certainly familiar.

Because symptoms can be varied, long-Covid patients have also had to seek out multiple medical specialists who may not communicate much with one another.

For example, Meredith still has neurological, pulmonary, and cardiac symptoms. “Should I go see a neurologist?” she asks. “All these smaller symptoms require so much specialized attention.” Even with a positive test, she’s encountered doubt in the doctors she’s turned to.

“Obviously this is uncharted territory for a lot of doctors,” she says. “We just don’t know what’s happening in our bodies.”

Unfortunately uncharted entirely by choice. People have to start realizing that or nothing will happen to change what is usual practice of just hoping the problem magically goes away.

 

[Mij]

I'm wondering what treatments are available for long-haulers if testing doesn't indicate a treatable problem? If it's post-infectious, then most doctors can't really do much at this point except wait it out because they won't know what's going on with their bodies either. They can treat insomnia, pain etc in the meantime though.

 

[Kitty]

I'm wondering what treatments are available for long-haulers if testing doesn't indicate a treatable problem?

Exactly. I suspect most of the doctors talking about rehab are actually talking about making stuff up as they go along, in the hope of stumbling on something that (a) doesn't make patients complain too loudly, or (b) makes them go away altogether, so they can be ticked off as 'recovered'.

 

[Rick Sanchez]

Theguardian aticle building on what Andy and Leila referenced

https://www.theguardian.com/world/2...t-greatest-risk-of-long-covid-experts-suggest

For women in the 50-60 age bracket, these two risk factors appeared to combine: They were eight times more likely to experience lasting symptoms of Covid-19 compared with 18- to 30-year-olds. However, the greatest difference between men and women was seen among those aged between 40 and 50, where women’s risk of developing long Covid was double that of men’s.

“This is a similar pattern to what you see in autoimmune diseases,” said Spector. “Things like rheumatoid arthritis, thyroid disease and lupus are two to three times more common in women until just before menopause, and then it becomes more similar.” His guess is that gender differences in the way the immune system responds to coronavirus may account for this difference.

The study, which was published as a preprint and has not yet been peer reviewed, also found that experiencing five or more symptoms during the first week of developing Covid-19 was associated with a heightened risk of lasting health problems.

Here too, differences in the immune response may be involved: “There’s certainly a group of long Covid sufferers that have this multi-system immune–like disease, where they get gastrointestinal problems, skin rashes, nerve problems and brain fog – so the whole body is involved rather than just one bit,” said Spector. Probably, the immune system is working differently in such people, which may manifest as symptoms in multiple body systems being experienced from week one.

No mention of post-viral fatigue syndrome or ME/CFS in the article.

 

[Sly Saint]

Help Is Out There for COVID ‘Long Haulers’
Clinicians should draw on knowledge surrounding chronic fatigue syndrome in treating patients suffering from the lingering effects of COVID-19.

Importantly, the constellation of post-viral infection symptoms described by the long haulers is far from new. In fact, similar issues have been described after the severe acute respiratory syndrome (SARS) outbreak in 2003 and in relation to infections with Epstein Barr virus (a cause of mononucleosis) and other exposures. Public health experts have acknowledged that the persistent post-COVID symptoms are eerily similar to those of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a well-described complex neurological condition that is often triggered by serious infections.

The question, then, is: Why are we so stumped by these post-COVID long haulers?

The answer is as simple as it is distressing. Even though millions of people suffer from ME/CFS, something that costs the U.S. economy up to $24 billion annually, we still invest very limited resources in researching the disease or educating health care providers about it. Moreover, from the relatively small annual budget dedicated to ME/CFS, almost no funds go to clinical trials to provide biology-based treatments. If the post-COVID viral syndrome is in fact similar to or the same as ME/CFS, the limited research to date will lead to challenges and delays in the treatment of the long haulers. Yet experts agree that the optimal time for intervention is at the beginning of an illness, not after it has been established for years and decades.

https://www.usnews.com/news/healthi...ulers-knowledge-and-empathy-are-key-to-a-cure

 

[Sly Saint]

At 12, She’s a Covid ‘Long Hauler’ - New York Times

by David Tuller

https://www.nytimes.com/2020/10/22/well/family/coronavirus-symptoms-kids-children-long-hauler.html

 

[Dx Revision Watch]

https://www.express.co.uk/life-style/health/1350852/covid-symptoms-long-covid-signs-linger-two-weeks

COVID symptoms: The seven signs you could be suffering from ‘long-Covid’

CORONAVIRUS continues to dictate the way the world behaves. Those lucky enough to have survived an infection seemingly unscathed may have lingering symptoms. What are the signs of 'long-Covid'?

By CHANEL GEORGINA
PUBLISHED: 08:57, Thu, Oct 22, 2020 | UPDATED: 09:40, Thu, Oct 22, 2020

 

[rvallee]

When the Doctor Is a Covid ‘Long Hauler’

https://www.nytimes.com/2020/10/21/well/live/when-the-doctor-is-a-covid-long-hauler.html

Mostly about POTS. That doctor does not seem aware that POTS, and generally dysautonomia, are generally treated like garbage in the vast majority of cases, seems to extrapolate from her exceptional experience of not being dismissed, gaslighted and insulted that this is the norm. Very misleading, IMO. It also recommends physical reconditioning without being aware of exertion intolerance, which as far as I can tell is still not acknowledged by any medical authority, not officially anyway, thus making this very dangerous for those with PEM.

Knowledge about POTS and how to manage it gives me hope. Many long-haulers, mired in morbidity, aren’t so lucky.

I really don't see how. A few fortunate ones have a not-so-horrible experience but for most of us we only get frowny puzzled faces that quickly redirects to "anxiety" about this "syndrome of yours".

Not very aware of how most people can't simply casually do their job from home, reclined and with money to pay the bills coming in nicely. Very rosy picture, to the point of misleading, of the experience of most POTS/dysautonomia patients. Which hopefully will improve in the coming months and years but for now this is a very aspirational fantasy that simply does not exist in most cases.

 

[John Mac]

COVID-19 effects can be persistent and serious say doctors suffering 'long COVID'

Striking parallels are emerging with another disabling condition, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), which has similar symptoms, and also receives a mixed response from the medical profession.

ME/CFS is a chronic and relapsing condition which can occur after a viral infection. The illness is characterised by extremely debilitating fatigue, "brain fog", muscle aches and pains, memory problems, headaches, and unrestful sleep.

https://www.abc.net.au/news/health/...arn-long-term-effects-can-be-serious/12785934

 

[Kalliope]

 

[Sly Saint]

COVID-19 effects can be persistent and serious say doctors suffering 'long COVID'

ABC

Nathalie MacDermott is no stranger to deadly diseases.

She's worked on the front line of the Ebola epidemic in Liberia, Cholera in Haiti, and this year, treating children critically ill with COVID-19 in London.

But now she's fighting on a more personal front line.
Dr MacDermott is suffering serious, ongoing symptoms after contracting COVID-19 back in March.

Overlap with chronic fatigue syndrome
Striking parallels are emerging with another disabling condition, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), which has similar symptoms, and also receives a mixed response from the medical profession.

ME/CFS is a chronic and relapsing condition which can occur after a viral infection. The illness is characterised by extremely debilitating fatigue, "brain fog", muscle aches and pains, memory problems, headaches, and unrestful sleep.

Long COVID research could help those with ME/CFS
Dr Small said many in the ME/CFS community are connecting with her on Twitter, hopeful that any research done on long COVID may also help them.

"They have been gaslighted by medics for a long time [and] told that their symptoms are psychological," she says.

"Chronic fatigue syndrome and all of the related syndromes that go alongside that population have been deeply let down by medicine.

"[But some with ME/CFS ask] 'why are you so special with your long COVID when we've had this for years and no one's believed us?'.

"I think we have so much to learn from each other, and a lot to gain from working together."

https://www.abc.net.au/news/health/...arn-long-term-effects-can-be-serious/12785934

 

[mango]

SVT: 25 000 svenskar kan ha långtidscovid
https://www.svt.se/nyheter/vetenskap/25-000-svenskar-kan-ha-langtidscovid

25,000 Swedes can have long-term covid

Two and a half percent in Sweden have had covid-19 symptoms for at least two months, a new study shows. According to SVT's calculations, it is probably around one million Swedes who have been infected with covid-19 so far. In that case, it means that 25,000 are affected by long-term covid.

- Of the Swedish material, 2.5 percent had continued symptoms eight weeks after falling ill, says Professor Tove Fall, who leads the Swedish part of the Covid Symptom Study.

Thanks to a mobile app where covid patients can report symptoms daily, researchers have been able to analyze 4.4 million users in Sweden, the United Kingdom and the United States. Over 4000 people with a positive corona test and confirmed covid are included in the study. The study has now been submitted for publication but has not yet been scientifically reviewed.

A challenge for both individuals and the Swedish Social Insurance Agency

The Swedish Public Health Agency estimates the mortality rate in covid at 0.6 per cent. With close to 6,000 deaths in Sweden, that means around one million infected. The opinion institute Novus comes to the same figure in its surveys. There may therefore be 25,000 Swedes affected by long-term covid, many times more than those who died from the corona pandemic.

- This is a challenge for both individuals to be ill for such a long time, the proportion that becomes so, but also for the insurance systems, that you can count on a lot of long sick leave, Tove Fall believes. [...]

 

[Invisible Woman]

Thanks to a mobile app where covid patients can report symptoms daily, researchers have been able to analyze 4.4 million users in Sweden, the United Kingdom and the United States. Over 4000 people with a positive corona test and confirmed covid are included in the study. The study has now been submitted for publication but has not yet been scientifically reviewed.

Now they just need to get their heads around the fact that the apps were problematic, some users gave up because, despite complaining that many of their symptoms weren't included in the app and were too cumbersome to keep manually adding in every day, they were ignored.

By the very questions they asked they made certain assumptions (inevitable) and they need to bear that in mind as it may have meant that some information of unknown importance was lost. It's very important that they don't become blinkered by their initial assumptions.

Let's hope they remember that causation ≠ correlation.

Let's also hope they remember that keeping people from further harm is as important as helping people and that it would be a refreshing change to actually use the information gathered to improve medical and social care rather than as a tool to deny access care and benefits.

They have some information but not all.