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

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Kalliope said:
The treatments that are talked about in the video as possible approaches for Long Covid are Niacin, Selenium, Zinc, Quercetin, Vitamin C and Vitamin D along with low histamine diet, antihistamines and prescription meds.
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A combination of Niacin, Selenium and vitamins C and D were very much the fashion for treatment for ME/CFS in Australia in the 1990s. I remember walking out of the appointment in which I'd finally been diagnosed with a post-viral illness with a big container of flush-free niacin and a jar of selenium. I was to go back for vitamin C and B12 IVs on a fortnightly basis.

None of it made any difference. I suspect most long-haulers will have the same experience.

The more things change, the more they stay the same.
 
Kalliope said:
It has gotten some replies

Within a few months of the start of the pandemic, research funding into long Covid was made available, guidance on treating it has been issued already, and 40 clinics for it are to be set up in England alone. By contrast, for decades ME/CFS sufferers were ignored, dismissed as hysterical, and generally failed by large sections of the medical community and the NHS. Even now that the illness has been officially recognised, medical and social care support for sufferers varies from inadequate to non-existent, and there is scarcely any public research funding.

ETA: The quote I've added is from a professor Christopher Norton. The name doesn't ring any bells..
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Nice of the Guardian to highlight this:

 
leokitten said:
ITV News: 'I want my life back': The desperation of 'long Covid' sufferers out of work since March
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Weird. All the "leading researchers" in this "condition" insist that their patients absolutely do not want their old life back because it's what made them "ill" in the first place. They also say that the symptoms are not actually important, yet those people only speak of the symptoms and nothing else. Odd. They couldn't possibly be wrong about this and other things, now could they?
 
COVID-19 and POTS: Is There a Link?

https://www.hopkinsmedicine.org/hea.../coronavirus/covid19-and-pots-is-there-a-link

Although many people recover quickly from COVID-19, the disease caused by the coronavirus, others who recover may continue to experience symptoms for months. Researchers are still determining the cause of these extended symptoms, but some COVID-19 "long-haulers" may actually be dealing with a known condition, called postural orthostatic tachycardia syndrome. This condition, also called POTS, affects involuntary nervous system functions, such as heart rate and blood pressure, usually upon standing from a reclining position.
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Articles like this are really unhelpful. They paint a picture of POTS and dysautonomia as something that medicine handles well, or at all for that matter. Yet this is one of the most common problem with Long Covid and as we can see, again, medicine absolutely fails at dealing with it. "Go see a doctor" is really unhelpful to people who did just that, sometimes many times, only to be treated with complete disrespect.

I don't know if it's because dysautonomia specialists are not aware of just how broken things are, which would be ridiculous, or if it's because of some cultural taboo about criticizing systemic failures in medicine, which seems far more likely. Because this gives the impression to people suffering from this that they can seek medical help and actually have something competent and useful, rather than prejudicial discrimination and gaslighting being the norm. Very misleading, it sets people up for failure and massive disappointment.

Pretending things are OK is not helpful when they are maximally broken, it's how they pass well beyond the breaking point to begin with. It's frankly mostly cruel. Delay diagnosis is about, what, 7-10 years for dysautonomia? And that's for the small % who does get diagnosed. And although there are specialists, I have heard so many bad stories of people dealing with the bad ones, who were treated with just as much disrespect as with any random physician who sees this as "women be hysterical".

Right there with a financial adviser telling their clients to invest in the lottery. Reality matters. Medicine sucks at this. Until this is acknowledged nothing will be fixed.
 
rvallee said:
Unfortunately, there is still plenty of possibility of being neglected, the door to shove it all out as mass hysteria is wide open and reinforcements are on their way to man the pumps. There was a pretty big high for a while, people rushing to figure out the basics who seem to have fallen out of love entirely upon finding it clearly looks too much like "those patients". The sugar rush has died down already, the shiny new thing turns out to have been an old, difficult and complex problem that nobody wants to deal with. Or at least the bigger part of it, in sheer number and DALY anyway. If only DALY actually counted for something.

This was a political issue for decades and it still is. The LC community has pinned their hopes for months that medicine would do its thing, hence most of the displeasure at us pointing out how difficult that would be without a massive change in culture and basically the biggest, most painful mea culpa in history.

Everything is still on the table but this will be a huge political fight, at least as big as AIDS. It will be pushed back so much harder than long haulers expect. Even entirely within the realm of medical institutions it's 99% a political fight, so much baggage to carry, more baggage than a freaking airport terminal. People bet their career on this, institutions like the NHS bet billions on the belief that there will never, EVER, be a medical explanation for it because it simply isn't.

This isn't about what can be done, it's not a strict matter of economics. It's a question of what people are willing to do, more about who gets what and how much than what is best. That's politics. Some people get nothing so that a few can have it all. This is the change that needs to happen and it's a massive one.
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What is different though is that it is happening to health care professionals. Physicians, researchers, nurses and first responders. It has also happened to newscasters (Cuomo) and journalists. They have already demanded research for Long Covid. These people will continue speaking up. They are telling their colleagues. Scientists are now rushing to research all aspects of COVID. And because the pandemic is not over, there will be more joining ranks.
 
The long-hauler approaches will probably swing all ways, but from a ME-perspective I’m just a tiny bit optimistic, looking back at 2020 and the pandemic and looking ahead. The sad fact is that this tiny bit of optimism, is due to the fact that after all, there is just about nothing happening for ME-patients.

Thanks to everyone that is trying. Its hard to think of the situation without the ones trying to improve things, but resources are just not substantial at all for making the progress necessary. Maybe I’m harmed by 15 years of now-it-is-happening over and and over again and the fact that nothings really happening, the situation almost spinning backwards. But the fact is that objectively, - the positives are close to nothing.

So yes, the facts as listed above, more of the “right people” getting ill post-Covid, the firm start, and the numbers worldwide, maybe these factors will make way for some kind of substantial research that may be good for ME-patients? Hard to see any resources left at all after the pandemic for ME-patients, so maybe this is the other way around? And a way that will be backed up by the medical community and politicians? Or could it be that everyone should be cured by CBT and GET?

In the aftermath I hope for some real solid research that is reproductive and may come in handy for ME-patients.
 
Peter said:
The long-hauler approaches will probably swing all ways, but from a ME-perspective I’m just a tiny bit optimistic, looking back at 2020 and the pandemic and looking ahead. The sad fact is that this tiny bit of optimism, is due to the fact that after all, there is just about nothing happening for ME-patients.

Thanks to everyone that is trying. Its hard to think of the situation without the ones trying to improve things, but resources are just not substantial at all for making the progress necessary. Maybe I’m harmed by 15 years of now-it-is-happening over and and over again and the fact that nothings really happening, the situation almost spinning backwards. But the fact is that objectively, - the positives are close to nothing.

So yes, the facts as listed above, more of the “right people” getting ill post-Covid, the firm start, and the numbers worldwide, maybe these factors will make way for some kind of substantial research that may be good for ME-patients? Hard to see any resources left at all after the pandemic for ME-patients, so maybe this is the other way around? And a way that will be backed up by the medical community and politicians? Or could it be that everyone should be cured by CBT and GET?

In the aftermath I hope for some real solid research that is reproductive and may come in handy for ME-patients.
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We must not lose hope @Peter . i am 12 years in.
 
Milo said:
We must not lose hope @Peter . i am 12 years in.
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Absolutely not! It surprises me from time to time how much power there is in hope, when experiencing setback after setback, just managing day to day basics and survival and all your left with is added insult to injury. It’s a cliche and true, hope never dies. So although almost nothing is happening and no one cares, we’re still here. Now finding hope in a true annus horribilis 2020.
 
I've just been talking to @lunarainbows about this topic, and thought it worth pasting some of our conversation here:

Me: I was surprised because I read that long covid is more prevalent in older people than younger people. HOWEVER there do seem to be different types of long covid, so I wonder if the post viral / ME-like type is more common in younger people, and the type that older people are getting might be more a case of making things worse for older people who already have weak organs.

ETA: like, my grandpa when he was old and unwell, became more unwell after a virus, because his lungs got weaker.

I've seen a graph of what ages people most often develop ME at, and it peaks in the teenage years and in the twenties. It would be very surprising if Post-covid ME showed a different pattern.

Luna: I was actually really surprised when they said long covid was found more in older people. I think you’re right, I think they’re not looking at everyone and the people they are looking at, have the type of long covid which affects their organs. And I read a Twitter thing (maybe from S4ME ages ago) that lots of peope with long COVID had stopped putting their details into that app which monitors symptoms of covid and long covid etc. The kings college app. So I think the data isn’t accurate as well.
 
Journal Pre-proof
Integrative Medicine and the Long Hauler Syndrome—We Meet
Again
Randy Horwitz MD, PhD, FACP , Victoria Maizes MD

An example of such a condition with applicability to Covid infection is Chronic Fatigue
Syndrome, also known as Myalgic Encephalomyelitis or Systemic Exertion Intolerance Disease.
Although a viral etiology has been proposed, no causative agent has been identified. Trials
using pharmaceutical anti-depressants and stimulants have been disappointing. Patients are
often left to fend for themselves to discover potentially helpful interventions, as many
physicians are not willing to pursue other possible solutions.

Integrative Medicine, as a field,has been treating patients with post-viral fatigue for many years, and such an approach may benefit those with overwhelming post-Covid fatigue.

In chronic fatigue syndrome, our approach starts with achieving restorative sleep. Utilizing
sleep hygiene techniques, including ritualized sleep-wake cycles with dusk simulation,
environmental bedroom and dietary modifications, and occasionally melatonin,
we are often able to restore efficient sleep patterns, which in turn provide additional energy. Activity
modification to preserve energy is also essential: activity is rationed daily, with ample recovery
periods of napping or resting between graduated periods of normal daily activities. Exercise
prescriptions are provided to build stamina and endurance, with 2-3 very brief, non-strenuous
periods of movement per day. Exercise tolerance is built very slowly, with weekly increases in
activity duration.
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https://www.amjmed.com/article/S0002-9343(20)31171-2/pdf
 
Michiel Tack said:
Interestingly, the letter has also been supported by Eric Topol (350.000 Twitter followers) and Elisabeth Bik (80.000 Twitter followers) who are both quite respected in the international medical community.
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Medscape interview
Reducing Risk Now, While Preparing for the Next Pandemic
Eric J. Topol, MD; Abraham Verghese, MD; Angela L. Rasmussen, MA, MPhil, PhD
This transcript has been edited for clarity.
People with so-called long COVID may or may not have ME/CFS, but it sure sounds like some of them do. I would defer to clinicians who are actually diagnosing ME/CFS to say whether or not they meet those diagnostic criteria, but they may be. Because this is the first time we've had a pandemic with such broad effects on different organ systems, including these neurologic effects, we should take this opportunity to try to understand how an acute viral infection can cause these complex, syndromic, long-term diseases like ME/CFS.

The bottom line is, I don't know if this is the same as ME/CFS from other causes. I haven't worked on ME/CFS extensively. I sat on a panel at the National Institutes of Health (NIH) that I was invited to be on it because I don't work on ME/CFS. Because I wasn't a stakeholder, I could make objective recommendations to NIH on how they should direct their funding. But knowing what little I do know, it seems that the etiology of ME/CFS has been a constant question. This may be an opportunity for us to get on top of that and start addressing some of those questions in real time. I'm pleased to see — and not only because long COVID seems to be debilitating and difficult for patients — all these long COVID research centers popping up. I hope some of that research can address some of the questions you just asked about the relationship between viral infection and ME/CFS.
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https://www.medscape.com/viewarticle/942822
 
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Just because 'poor quality' sleep is associated with 'issues', as anyone who's not sleeping problems will feel it, does not mean that ritualising sleep will help.

I am at a loss to determine what they expect people who don't sleep, who the imposition of yet another thing to try and get right, to do, when say after a few weeks they have had virtually no sleep, due to it being ritualised, and impossible.

...and then they add GET.

I 'suspect' that these 'experts' may possibly be not very good at listening or coming up with new approaches.

Decades of people trying this approach, with people not being 'helped' by it...and what do they come up with.
 
Sarah94 said:
I've just been talking to @lunarainbows about this topic, and thought it worth pasting some of our conversation here:

Me: I was surprised because I read that long covid is more prevalent in older people than younger people. HOWEVER there do seem to be different types of long covid, so I wonder if the post viral / ME-like type is more common in younger people, and the type that older people are getting might be more a case of making things worse for older people who already have weak organs.

ETA: like, my grandpa when he was old and unwell, became more unwell after a virus, because his lungs got weaker.

I've seen a graph of what ages people most often develop ME at, and it peaks in the teenage years and in the twenties. It would be very surprising if Post-covid ME showed a different pattern.

Luna: I was actually really surprised when they said long covid was found more in older people. I think you’re right, I think they’re not looking at everyone and the people they are looking at, have the type of long covid which affects their organs. And I read a Twitter thing (maybe from S4ME ages ago) that lots of peope with long COVID had stopped putting their details into that app which monitors symptoms of covid and long covid etc. The kings college app. So I think the data isn’t accurate as well.
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Kings college app has been taken to task by long haulers as it does not include a lot of symptoms.
You have to ask the right questions ..
 
Here's their integrative medicine approach to CFS:
In chronic fatigue syndrome, our approach starts with achieving restorative sleep. Utilizing sleep hygiene techniques, including ritualized sleep-wake cycles with dusk simulation, environmental bedroom and dietary modifications, and occasionally melatonin, we are often able to restore efficient sleep patterns, which in turn provide additional energy. Activity modification to preserve energy is also essential: activity is rationed daily, with ample recovery periods of napping or resting between graduated periods of normal daily activities. Exercise prescriptions are provided to build stamina and endurance, with 2-3 very brief, non-strenuous periods of movement per day. Exercise tolerance is built very slowly, with weekly increases in activity duration.
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The final paragraph reads as an advertisement. While admitting they have no clinical trial evidence for any of their therapies, they say:
Integrative Medicine offers an approach to treating patients even before clinical trials are available, using established principles. It looks for the underlying mechanisms of a disease process, such as inflammation, and uses lifestyle modifications to address these (including nutrition, stress management, and reduced environmental exposures). Integrative Medicine provides strategies to relieve symptoms such as fatigue and depression by extrapolating from treatment of these conditions due to causes other than Covid-19. It has an important role to play in this pandemic to help a multitude of people restore their health and well-being.
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So why is this being published in The American Journal of Medicine. Don't they understand the necessity for evidence?
 
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