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

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Andy said:
Guardian: People with long Covid urgently need help. Why can't we access it?

I have just finished a remote rehab class with a physiotherapist at my local teaching hospital. It’s the first time I’ve attempted an hour of exercise since getting Covid nearly a year ago, and I managed a paltry 20 minutes of marching on the spot and strengthening exercises before I had to lie down. I used to be strong, fit and healthy, teaching yoga when I wasn’t working as a consultant in infectious diseases. Since developing long Covid, my ability to manage daily activities is unpredictable. On good days I can manage a 45-minute walk, but on bad days I will struggle to make dinner.
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When fit to work, Joanna Herman is a consultant in infectious diseases in London, and teaches at the London School of Hygiene and Tropical Medicine

https://www.theguardian.com/commentisfree/2021/mar/10/people-long-covid-need-help-boris-johnson-
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That part is so puzzling, though at least it has the bolded:
Still, what I’d really like is an exercise physiologist to identify what is happening in my body when it crashes, and tell me what I might do to prevent it, and a physiotherapist to assess how I might use my limited energy better. There are no common protocols or guidelines yet for physiotherapists managing this disease. But there are places to start: we know that for most people with long Covid, graded exercise therapy (whereby physical exercise is gradually increased over time) can be detrimental to recovery. Energy supply is limited, and it’s crucial to learn how to pace yourself; if you spend the morning using brain power, you may have none left for physical activity, and vice versa.
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By what process would an exercise physiologist be able to identify what is happening in our bodies when we crash? By what? Feeling with their hands? Drawing Tarot cards? Astrological sign? The logic here is so bizarre. There is so much misplaced hope, mixed with a taboo on criticizing health care makes for very awful outcomes. This is a doctor who clearly see what's wrong with the system yet can't bring themselves to do it, even though it is richly deserved.

Medicine is failing miserably at this. Say it loud, they need to get the message, enough with the participation trophies this is way too important to have mutual admiration societies paralyzed in mutually embraces because of magical thinking.
 
Living with long Covid: 'I can't work, I can't be a mum, I can't be a partner - I feel useless'

https://www.itv.com/news/wales/2021...t-be-a-mum-i-cant-be-a-partner-i-feel-useless

Although long Covid is a new and little-understood condition, some have compared it to preexisting conditions such as ME/chronic fatigue syndrome and dementia.

Speaking about her brain fog, Sarah said: "I used to care for people with dementia, and it feels very much like how they used to react.

"You get so angry because you can't find a word, and I remember being on FaceTime to my daughter trying to explain - I can't think of it now - the triangle things you put guacamole on. Tortillas!"

She continued: "There are days when I can't open the washing machine because I can't work out how.

"You just feel so stupid because normal things just don't feel normal anymore."​

I have seen few such comparisons with dementia, only one article I can remember, and I'm not sure they are useful. The impact is certainly similar but dementia is degenerative, does not fluctuate and does not improve spontaneously. Still, at least the impact is properly expressed, but a good working vocabulary is so badly needed in this space.

Then again maybe. Brain fog is so difficult to explain, especially how serious and all-encompassing it is. Certainly for an observer it is very difficult to tell the difference, other than the fact that given enough time and a bit of help we still retain our intelligence, it's just stifled by a 800-lbs gorilla, and not one of those friendly apes either.
 
Andy said:
I used to be strong, fit and healthy, teaching yoga when I wasn’t working as a consultant in infectious diseases. Since developing long Covid, my ability to manage daily activities is unpredictable. On good days I can manage a 45-minute walk, but on bad days I will struggle to make dinner.
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This seems like typical Guardian reporting of anything as if it is an affront to democracy and human rights and....

Since when did a consultant in infectious diseases ever have the free time or motivation to go off and teach yoga? Why teach yoga anyway? And what has yoga to do with being fit and strong? I thought it was mostly sitting about.

And anyone who can do 45 minutes walking on good days does not need an exercise physiologist or a physio. They just need to recognise that maybe they have something wrong that that nobody understands that on bad days blocks the ability to do the 45 minutes.
 
Jonathan Edwards said:
And what has yoga to do with being fit and strong? I thought it was mostly sitting about.
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Not judging by someone I worked with for years – at least on the strength front. When she started the workplace yoga sessions, she was 64 and had the physique of an elite distance runner, but did no training except yoga and walking her dogs. She had an extraordinary sense of balance, such as holding a one-handed handstand absolutely still from the moment she got into position. Honestly, if you wanted a sight to make you give something up instantly in despair, she was it... :rofl:
 
Jonathan Edwards said:
And what has yoga to do with being fit and strong? I thought it was mostly sitting about.
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No. It very much depends on the yoga.

Kitty said:
When she started the workplace yoga sessions, she was 64
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Yep. One of my yoga instructors was in his late 70s. He'd have given most fit & healthy 20 year olds a run for their money.
 
Vox article: Long Covid isn’t as unique as we thought

Very long article in Vox about how ongoing post-viral symptoms are nothing new, mentions not only ME/CFS in detail but also post-Ebola syndrome, etc, and that not just infections can trigger such lingering symptoms. It also talks about how these patients have been neglected and not taken seriously. Quite detailed piece.

"For now, many long-haulers report being gaslit and disregarded by medical professionals, especially if they don’t have a positive PCR test confirming the diagnosis. Of the dozens of medical appointments one Covid-19 long-hauler, Hannah Davis, had for her persistent symptoms — which include memory loss, muscle and joint pain, and headaches a year after her initial disease — one of her best experiences involved a doctor who simply said, “I don’t know.”
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https://www.vox.com/22298751/long-term-side-effects-covid-19-hauler-symptoms
 
The day /r/medicine discovered Long Covid: Is "Long-Hauler" the new "CFS/ME/Fibro/Chronic Lyme"?

Haven't looked yet, this forum is generally very disrespectful. But it's useful to know what physicians are thinking. Sad that they are prosecution, rather than defense.

Edit: not as bad as usual, though as mentioned many from the long-haulers sub butted in; many seem OK with the idea that this is real but there is an odd conviction that research would not lead anywhere, which is extremely weird for a profession that is supposed to be based on science
 
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Wyva said:
Vox article: Long Covid isn’t as unique as we thought

Very long article in Vox about how ongoing post-viral symptoms are nothing new, mentions not only ME/CFS in detail but also post-Ebola syndrome, etc, and that not just infections can trigger such lingering symptoms. It also talks about how these patients have been neglected and not taken seriously. Quite detailed piece.

"For now, many long-haulers report being gaslit and disregarded by medical professionals, especially if they don’t have a positive PCR test confirming the diagnosis. Of the dozens of medical appointments one Covid-19 long-hauler, Hannah Davis, had for her persistent symptoms — which include memory loss, muscle and joint pain, and headaches a year after her initial disease — one of her best experiences involved a doctor who simply said, “I don’t know.”
​
https://www.vox.com/22298751/long-term-side-effects-covid-19-hauler-symptoms
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Thanks @Wyva The article explains what the ME/CFS community has been trying to shout since the beginning of the Covid-19 epidemic.

This!

While there’s no doubt long Covid is a real condition worthy of diagnosis and treatment, “this isn’t unique to Covid,” Akiko Iwasaki, an immunologist at the Yale School of Medicine, said. Rather, Covid-19 appears to be one of many infections, from Ebola to strep throat, that can give rise to stubbornly persistent symptoms in an unlucky subset of patients. “If Covid didn’t cause chronic symptoms to occur in some people,” PolyBio Research Foundation microbiologist Amy Proal told Vox, “it would be the only virus that didn’t do that.”

Or this!

“I can’t find a single thing that the SARS-CoV-2 virus can do, that other viruses cannot,” Proal said. “It’s well understood and it’s been understood for decades that every major pathogen capable of infecting people has a syndrome associated with it in which a certain number of patients who get that pathogen ... will develop chronic symptoms that never go away.”

And this!

Simply put, medicine hasn’t cracked how to deal with patients who have chronic syndromes, like ME/CFS or long Covid, that don’t have one-size-fits-all treatment regimens.

People “want disease to kill you, or they want you to return to miraculous good health,” said Seltzer. “When you stay sick, compassion can fade. And that is not just friends and family. That is your clinicians as well; they want somebody fixable.”

Now for the mainstream media to take on the message.
 
Goop: Exploring the Link between Chronic Fatigue Syndrome and COVID-19

Do you have recommendations for someone with ME/CFS?

People with chronic fatigue syndrome have extreme exhaustion after exercise. They are unable to produce enough adenosine triphosphate (ATP) so that they can sustain their daily activities. Blood flow to tissue doesn’t meet the needs of the body. This is called postexertional malaise, a hallmark of the disease.
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Ami Mac, MD, is the director of translational medicine at the Stanford Genome Technology Center. She earned her MD from Wayne State University School of Medicine and is trained in physical medicine and rehabilitation, sports medicine, interventional pain management, and musculoskeletal ultrasound. Mac coauthored Musculoskeletal Ultrasound Pocket Guide with Jose Bouffard, MD. Her interests lie in finding patient-driven solutions in the health care space using advanced data science methodologies.

https://goop.com/wellness/health/are-chronic-fatigue-syndrome-and-covid-19-linked/
 
Business Insider interviews physical therapist Noah Greenspan from New York about long-haulers. He has created a bootcamp "to help long-haulers manage their symptoms". CFS is mentioned in the article several times. He seems to be confusing PEM with fight-or-flight-mode.

Business Insider: Most coronavirus long-haulers are women. That may be because they mount a stronger immune response to the virus


Quote:
It's possible that some people with CFS could have an autoimmune disorder, while others have a neurological one.

Long-haul cases could be similarly varied. In time, scientists may come to see long-haulers as the blanket term for a group of people with a host of different illnesses spurred by COVID-19.

Those illnesses may require distinct treatment plans. Some patients may benefit from drugs that hinder inflammation, for example, or that blunt the production of antibodies that can attack one's own immune system. Others may require physical therapy to train their bodies not to have a fight-or-flight response to physical activity.

Greenspan said he's studying whether a combination of treadmill exercise and oxygen therapy could help alleviate patients' symptoms.

"There's a whole bunch of things that, while not a cure, are certainly therapeutic for many people," he said.
 
Tony Blair - Institute for global change
A Long-Term Plan for Long Covid

Conclusion
It is almost six months since we last wrote on Long Covid. In one sense, a number of things have changed, with progress having been made in certain areas.

We now have a recognised diagnosis for Long Covid. Specific funding has been provided by the government, and specialist clinics have been set up. Through the work of Professor Spector, King’s College London and ZOE, we also have a clearer picture of the scope and scale of the problem.

In another sense though, few things have changed. Long Covid is a significant challenge and we remain in a position where we are not meeting the scale of the challenge with the requisite resources. Our conversations with key groups indicate that many people are struggling to get referrals to these clinics, with geographic proximity to a clinic a further barrier.

Long Covid sufferers are still struggling to access the right resources. While specialist clinics have been set up, they are too few in number. Funding has been given by government but not on the scale needed to match the growing need. Further and deeper research is also needed, particularly the effects of vaccination on those with Long Covid.

This report sets out how government can put in place the long-term plan we need to respond to the challenge of Long Covid.

Recommendations
  • Conduct further research on the causes of Long Covid, the best practices for treatment and the potential impact of Covid-19 vaccines on Long Covid symptoms.
  • Release additional Long Covid awareness campaigns or publicly support existing campaigns put forward by Long Covid support groups that target young people who may not be aware they can suffer from Long Covid regardless of their initial infection.
  • Provide additional funding for Long Covid clinics.
  • Expand the list of symptoms that warrant a Covid-19 test beyond a fever, new or continuous cough, and loss/change of taste or smell.
  • Monitor the prevalence of Long Covid by creating Long Covid patient registers and implementing Long Covid surveillance.
  • Continue to develop and refine Long Covid guidance for both patients and GPs.
  • Create a Long Covid taskforce charged with improving Long Covid care and the wider societal issues of Long Covid, such as its impact on employment, education and welfare.
  • Appoint a Long Covid minister to lead the government’s Long Covid response.
  • Recognise Long Covid as an occupational disease and compensate workers where necessary.
 
Kalliope said:
Tony Blair - Institute for global change
A Long-Term Plan for Long Covid
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Everyone seems to be running around like headless chickens. The reality is that after Covid some people remain unwell for months and we have no idea why or what to suggest to do to help. There is absolutely no reason to think that 'rehabilitation' will do any good.

I get the strong impression that this is all for show - competing to be the most righteous and aware group of people.
 
Andy said:
Goop: Exploring the Link between Chronic Fatigue Syndrome and COVID-19


https://goop.com/wellness/health/are-chronic-fatigue-syndrome-and-covid-19-linked/
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Is this Gwyneth Paltrow's Goop?

OK, so I checked and it is. She is famous for often promoting and selling pseudoscientific healthcare products (Goop is the brand) and has been critized many times for this. I mean I am happy that ME/CFS and the possible link to long covid gets more attention, but I think it is worth adding what Goop is known for. :)
 
Wyva said:
Is this Gwyneth Paltrow's Goop?

OK, so I checked and it is. She is famous for often promoting and selling pseudoscientific healthcare products (Goop is the brand) and has been critized many times for this. I mean I am happy that ME/CFS and the possible link to long covid gets more attention, but I think it is worth adding what Goop is known for. :)
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I thought the interview was good, but agree this is a not a trust worthy source for health information, so good thing you added that.
 
Referring to post #3868 ...

This is the first reference I can remember seeing to an Institute which has Tony Blair's name tacked on. Since he is/was a politician and has no medical training his name being involved actually puts me off reading what has been published. I realise this probably makes me sound like I'm prejudiced against politicians - and to be honest, yes I am.
 
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