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

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These women's coronavirus symptoms never went away. Their doctors' willingness to help did.

https://www.nbcnews.com/news/us-new...s-symptoms-haven-t-gone-away-doctors-n1235091

“‘Gaslighting’ is the word I’ve been using repeatedly,” one COVID-19 survivor said. “I’m so ill and some people are telling me this is a figment of my imagination."
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But doctors have downplayed Court’s concerns as her health problems have dragged on. At one point, her primary care doctor suggested that perhaps she was just “stressed because of the economy,” she said.
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Ah, yes, regular people totally do that, think about "the economy" and stress about "the economy".
And during a visit to an urgent care center in May — when she feared she might be having a stroke or other neurological problem because she was having memory loss and a crippling migraine, in addition to chest tightness and numbness in her legs — a physician rolled his eyes at her, Court, 35, said. Her issues were nothing more than acid reflux, he told her in a dismissive tone, plus maybe a vitamin deficiency.
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Despite their oath to do no harm, medical professionals’ judgment can be inadvertently altered by deeply ingrained unconscious biases, experts say, and the “hysterical female” patient has long been a dangerous stereotype in medicine.
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"Oath". It's a slogan, it has no force, no mechanism of enforcement. It's a nice slogan but it's just that.
On one trip earlier this month, she overheard a doctor talking about her to his team with disdain, but she didn’t know why.

“He said, ‘The girl’s perfectly normal, there’s nothing wrong with her,’” she said. “And in my head, I’m like, ‘I’m not perfectly fine. I don’t just go in the ER to take a room up.’”
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“The frustrating part for the patient and the clinician is, we don’t know if this is going to get better and when,” she said.
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Well, then, denying this and obstructing research and development for decades sounds kind of dumb in hindsight. Excessively cruel but also very dumb.
 
So...no change then.

The only thing that the numbers alter is the amount of wear and tear on doctors derision muscles.

Well known medical fact that people get sick, then they either recover or die.

Apart from the fact that it isn't true, and medicine has known this since at least 1919.
 
Andy said:
https://blogs.bmj.com/bmj/2020/07/28/nisreen-a-alwan-what-exactly-is-mild-covid-19/

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As a public health doctor and epidemiologist, I strongly think we must now clearly define and measure “recovery” from covid-19. This way we can quantify non-death health outcomes and monitor long-term implications of the virus. The definition needs to be more sophisticated than just hospital discharge or testing negative for the virus. It must take into account symptom duration, fluctuation, overall functionality and quality of life in comparison to before infection. If we do not have enough information to define “mild” at this stage, then let us not use the term loosely, otherwise it is detrimental to pandemic control.
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Perhaps she can talk to the PACE authors about how to properly define "recovery".

It's a pity most of these doctors only become interested in these issues after they get sick themselves.
 
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I suspect that most doctors believe that experts in other specialities know what they are talking about so a gynaecologist will believe what a gerontologist says about elderly people. They will also assume that elderly people go to a gerontologist not to them.

What this means is that when BPS specialists talk about patients who believe they are ill but are actually deconditioned because they are afraid of exercise, they will believe these patients exist as described and that the experts know how to get them better.

The shock is when they discover that the patients the BPSers are talking about are them. Then they see how ridiculous it all is.
 
Warp Speed Help for COVID Long Haulers and ME/CFS
Conventional wisdom holds that if stricken with COVID-19, and it did not kill you, you would get sick, get better in a few weeks and move on. Conventional wisdom is wrong.

The news is teeming with stories of people who got COVID-19, cleared the virus, but are not recovering. Perhaps they did not even step foot in a hospital, yet they have remained sick for months.

These COVID Long Haulers, or LongCovid patients, can have profound fatigue, weakness, bedridden stints, a racing heart, chest pain, breath and cognitive difficulties, fever, GI and sleep problems and more. Many report minimal activity making them worse. One day they improve, the next new scary symptoms emerge, or previously resolved ones resurface.

Who could have predicted this? Who would have known the coronavirus might bring a surge of delayed recoveries or non-recoveries?

Unfortunately, I knew.

So did the up to 2.5 million Americans who experience symptoms similar to LongCovid, but for years. We have Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a neurological and immunological disease. Eighty percent of cases start with a viral or bacterial infection. Doctors diagnose ME/CFS after symptoms persist for six months.
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https://www.insidesources.com/warp-speed-help-for-covid-long-haulers-and-me-cfs/
 
Tia said:
Wow, shocking. I have not heard this. Where did he say this? Is it on record anywhere?
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Yes, i think it is in his book. I'll see if I can find it. To try to be entirely fair to SW he was intending to use this as an example of how badly treated ME patients were by the other branches of the profession. Possibly, neurologists in particular. He, on the other hand, liked to see them and took them seriously...at least within his own terms. Unfortunately it does not come over quite like that. He sounds to be saying there is something wrong, but it's all within the domain of psychiatry. There is an unfortunate levity about it.
 
chrisb said:
Yes, i think it is in his book. I'll see if I can find it. To try to be entirely fair to SW he was intending to use this as an example of how badly treated ME patients were by the other branches of the profession. Possibly, neurologists in particular. He, on the other hand, liked to see them and took them seriously...at least within his own terms. Unfortunately it does not come over quite like that. He sounds to be saying there is something wrong, but it's all within the domain of psychiatry. There is an unfortunate levity about it.
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Thanks. Yes, I think it's interesting anecdotal evidence of how neurologists have viewed ME patients rather than being particularly damning of SW in this instance. Handy for him that it fits his narrative so nicely.
 
chrisb said:
Yes, i think it is in his book. I'll see if I can find it. To try to be entirely fair to SW he was intending to use this as an example of how badly treated ME patients were by the other branches of the profession. Possibly, neurologists in particular. He, on the other hand, liked to see them and took them seriously...at least within his own terms. Unfortunately it does not come over quite like that. He sounds to be saying there is something wrong, but it's all within the domain of psychiatry. There is an unfortunate levity about it.
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He repeatedly refers to it, seemingly as a way of showing how terrible things were before he started to gain influence. My impression from patients who were ill at that time is that they actually found that they were treated more reasonably by medical staff prior to Wessely's involvement, despite this one letter that he so often quotes.
 
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I'm not sure if this has already been posted.

I came across this June 16, 2020 article on "Healthline" under the title:
Fauci Warns About ‘Post-Viral’ Syndrome After COVID-19
“Brain fog, fatigue, and difficulty in concentrating,” Dr. Fauci said at the International AIDS Conference. “So this is something we really need to seriously look at because it very well might be a post-viral syndrome
https://www.healthline.com/health-news/fauci-warns-about-post-viral-syndrome-after-covid-19 associated with COVID-19.”
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That's the only Fauci quote, but part of the the article is written as if post-Covid syndrome is ME. It also conveys the sense that ME is well-defined by "documented abnormalities."

What is post-viral syndrome following COVID-19?

This condition is called myalgic encephalomyelitis (ME)-like illness. ME was previously called chronic fatigue syndrome (CFS).

“We see this with any virus, and it’s basically unexplained, persistent, relapsing fatigue. It’s most documented in women, twice as much as men,” Dr. Donna Casey, internist at Texas Health Presbyterian Hospital Dallas told Healthline. “We can now see documented abnormalities in your nervous, immune, and metabolic systems. So we’re seeing abnormalities in all three that creates myalgic encephalomyelitis.”

She added that it can affect people at all ages, but if you’re older and have other health issues, it can have a more lasting effect.

Casey emphasized that people with post-viral syndrome do improve with time. “Of course, we’re not at the six month mark for COVID, but my hospitalized patients, I’m seeing a lot of them once a week, and I can see them getting better.”
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It seems to conflate "post-viral syndrome" with ME, saying that people with PVS improve with time. Of course, "improving" isn't the same thing as "recovering" - and "with time" could mean years or decades.
 
Post viral syndrome is fairly common and does resolve with time though it can take a couple of years. It is not the same as ME at all. The confusion is a result of chronic fatigue syndrome, which does describe it as it is such a loose definition with the emphasis on fatigue rather than abnormalities with exertion, neurological and immunological systems.

Many doctors have just taken ME/CFS as a patient friendly name for CFS and still think of it as a general fatigue problem rather than a more specific entity.

Years ago I was annoyed that a woman I met with fibromyalgia kept insisting she was worse of than me (I never compare diseases but some do) because her doctor told her she had ME as a symptom of her fibro when she obviously had chronic fatigue without the paralysis, sensitivities and collapse after three days that I had. So it is not a new mistake on the part of doctors.

Still dangerous and ignorant though.
 
Mithriel said:
Post viral syndrome is fairly common and does resolve with time though it can take a couple of years. It is not the same as ME at all.
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I’m not convinced. I would have thought that the form of ME that follows a viral infection is a subset of post viral syndrome. I satisfy basically all ME criteria*. I don’t think I had major symptoms after my initial infection. I was mildly affected for years (I probably would have had a 50% reduction in activity levels but that was because I played or trained for sport 7-10 times a week).

*I’ve never had a brain scan so don’t have the evidence to satisfy Byron Hyde’s set of criteria
 
Dolphin said:
I’m not convinced. I would have thought that the form of ME that follows a viral infection is a subset of post viral syndrome.
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I think this is the assumption I'd prefer until we know more. ME may be a type of post-viral syndrome that does not resolve; it also appears to have non-viral triggers, although we can't be sure there are cases where no virus is involved due to the possibility of asymptomatic or latent viral infection.
 
Dolphin said:
I’m not convinced. I would have thought that the form of ME that follows a viral infection is a subset of post viral syndrome. I satisfy basically all ME criteria*. I don’t think I had major symptoms after my initial infection. I was mildly affected for years (I probably would have had a 50% reduction in activity levels but that was because I played or trained for sport 7-10 times a week).

*I’ve never had a brain scan so don’t have the evidence to satisfy Byron Hyde’s set of criteria
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I think we may be talking about different things. A friend had giardiasis and had very little energy to do much for about 18 months but after that she returned to normal. Another woman I know had a similar experience after flu.
My husband was very fatigued after a bad flu and it took about 9 months to resolve. I did not know I had ME at the time but he was much sicker than me. Tired, pale and losing weight. He got a lift to work and back and did nothing heavy then came home and collapsed.

He had none of the funny neurological or immunological symptoms of ME or the variation, just a constant weakness.

On the other hand, a friend who was a nursery nurse took ill and was diagnosed with PVS and was just exhausted all the time but after some months it turned into more classic ME and she is still ill many years later.

What you describe is almost exactly my experience. In some ways it is mild illness compared with what it can be but the continual struggle was very difficult to live with. Nowadays I am much sicker and limited but there are things I just don't even attempt so the limitations in what I can do are the same now for fewer things than in those days, if I am making myself clear.

It is right to emphasise the dreadful suffering of some people, it is heart breaking especially in the young but life can be very difficult for the "milder" patient as well.

Sorry, rambling a bit. My personal belief is that we get ME right from the start and when a test is developed it will show positive must sooner than 6 months or at least the damage from the infection is there from the start,
whereas PVS is about recovering from an infection.

Needs more study!
 
Mithriel said:
I think we may be talking about different things. A friend had giardiasis and had very little energy to do much for about 18 months but after that she returned to normal. Another woman I know had a similar experience after flu.
My husband was very fatigued after a bad flu and it took about 9 months to resolve. I did not know I had ME at the time but he was much sicker than me. Tired, pale and losing weight. He got a lift to work and back and did nothing heavy then came home and collapsed.

He had none of the funny neurological or immunological symptoms of ME or the variation, just a constant weakness.

On the other hand, a friend who was a nursery nurse took ill and was diagnosed with PVS and was just exhausted all the time but after some months it turned into more classic ME and she is still ill many years later.

What you describe is almost exactly my experience. In some ways it is mild illness compared with what it can be but the continual struggle was very difficult to live with. Nowadays I am much sicker and limited but there are things I just don't even attempt so the limitations in what I can do are the same now for fewer things than in those days, if I am making myself clear.

It is right to emphasise the dreadful suffering of some people, it is heart breaking especially in the young but life can be very difficult for the "milder" patient as well.

Sorry, rambling a bit. My personal belief is that we get ME right from the start and when a test is developed it will show positive must sooner than 6 months or at least the damage from the infection is there from the start,
whereas PVS is about recovering from an infection.

Needs more study!
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You could be right though off the top of my head, I'm not sure if there have been published studies that show what can be used to clearly distinguish the two. Perhaps with all the apps and focus on Covid, something might arise with this infection.
 
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