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

[chrisb]

It can't be ME. He hasn't had it six months yet. Somehow it magically transmogrifies on that date.

 

[Mithriel]

@rvallee it appears to have been on BBC world however not the main BBC news content aimed at UK audience

There's a surprise

 

[Mithriel]

One question that I asked myself after sending the letter is, do we know for certain that some viral infections trigger ME/CFS? I know that we know that ME/CFS often follows acute viral illness but could it be that people who are about to develop ME/CFS are particularly susceptible viral illnesses, that old viruses are reactivated at onset, or that the initial symptoms just mimic viral illness (fever, sore throat, swollen glands etc)?

Any thoughts on this @Jonathan Edwards?

[edited grammar for clarity]

The long covid experience exactly mirrors what happened with my ME. The symptoms correspond with the damage seen in the acute phase so it seems unnecessary to postulate that it is caused by the reactivation of some other virus. Maybe but not the first thing to look for.

ME definitely occurred in epidemics. They were an exact match for what is happening here. Lots of people get ill at once and some do not recover. The virus was not identified at the time, but virology was in its infancy and the infectious disease doctors believed it was an enterovirus which they had a lot of experience diagnosing. New enteroviruses have been identified since the time of the Royal Free epidemic.

The direct link with viral infections has been deliberately lost by making a 6 month wait mandatory in the definition even though that definition came from the CDC being asked to investigate an outbreak.

There may be something which makes some people get better and others develop ME. One of the findings in the preCFS years was that ME was more likely where patients had 2 viruses at once. It was never investigated, all the money then went to psychological studies but it could be as simple as the virus getting deep into the body and evading the immune system. A herpes virus reactivating under such circumstances is a possibility but i doubt it is the case for everyone and it does not seem likely with covid 19

 

[Caroline Struthers]

I watched the segment and it was great. Wow, to be able to show this to Wessely and his ilk decades ago, basically their worst nightmare. On the BBC, too. Especially the advice about connecting with others and empowering patients. COVID isn't only making those who have it sweat.

One important point Garner made bears repeating loud and clear: we don't know how to help those people yet, but we do know enough to prevent many from getting worse. My words, not his, but this goes by trashing the entire BPS model and advising proper pacing, rest, sick leave and awareness of those things throughout medicine.

It's impossible to say how long it will take to have reliable beneficial treatments so this is particularly important because current advice is wrong and harmful and people are sick now, are being faced with pressing demands from work, family and obligations now and they are likely making the wrong choices now, making themselves sicker and possibly harder to effectively treat down the line.

The NICE proceedings and the Cochrane review are slated to report within a year. That's far too long and just the UK, elsewhere there isn't much happening yet. Things need to happen now, far and wide.

I'm really curious what Garner will think of the whole Cochrane saga.

I think Hilda Bastian said she has been in touch with Paul Garner. He knows all about it, and he will have told her what he thinks by now.

 

[rvallee]

Fauci said the symptoms resemble those seen in patients with myalgic encephalomyelitis, or ME, once known as chronic fatigue syndrome


So Fauci is consigning CFS to the history books?

That's probable the editor, but still it's quite a sea change. Very premature as well, CFS is still pretty much the only thing some MDs are aware of, but still, it signals a massive shift in attitude.

 

[rvallee]

Long tail of coronavirus can prolong suffering for months

https://sg.news.yahoo.com/long-tail-coronavirus-prolong-suffering-months-110830077.html

They call themselves "long-haulers", "long-tailers", or simply survivors.

Some have been sick almost as long as the new coronavirus is known to have existed.

Six months after the virus began to scorch its way across the planet, it is becoming clear that COVID-19 causes far more symptoms than first suspected.

Thousands of people of all ages are staying sick for weeks or even months.

British forensic psychiatrist Jenny Judge began an odyssey of illness in March with a fever, cough, headache and breathing problems.

She has since experienced waves of other symptoms including a racing heart, scalding rashes and "COVID toes", which were itchy and ulcerated.

At one point she was so delirious she heard her dogs talking, and was not particularly surprised.

"Now I am going through a belly phase," she told AFP on day 111 of her ordeal.

Many people posting in these groups say they have experienced disbelief from doctors or employers.

Those who became ill in March may face particular problems as testing was scarce and they may have no clear evidence that they were ever infected.

Judge said even though she is a doctor she has faced scepticism from staff at her local hospital, with one medic suggesting her high heart rate might be anxiety.

It's a massive understatement to say that COVID-19 will change psychiatry for the best. I've seen many MDs speaking against ut, from mildly to forcefully, but within psychiatry there is next to no criticism of the MUS conversion disorder model. It's either accepted as fact or people don't dare stand out from the crowd.

Nothing like living it to understand just how flawed this ideology is. How nothing it contains has any connection to reality.

Edit: I guess besides Alan Frances, gotta give credit to his latest tweets being vocal about the silliness of ME being considered behavioral

 

[Caroline Struthers]

I think Hilda Bastian said she has been in touch with Paul Garner. He knows all about it, and he will have told her what he thinks by now.

Yes, on 5 June she said in the Cochrane review thread

Yes - thanks for drawing my attention to it, though. We've been messaging/emailing about all this. Yes, I expect he will be contributing his views, and definitely keeping up with emerging data and research on post-Covid effects.

 

[akrasia]

CNN: Oregon woman has battled coronavirus symptoms since March
Fauci said the symptoms resemble those seen in patients with myalgic encephalomyelitis, or ME, once known as chronic fatigue syndrome.
"If you look anecdotally, there is no question that there are a considerable number of individuals who have a post-viral syndrome that in many respects incapacitates them for weeks and weeks following so-called recovery," Fauci said.
"There are chat groups that you just click on and see people who recovered that really do not get back to normal," Fauci added. They report symptoms such as brain fog, difficulty concentrating and fatigue that resemble the symptoms of ME, he said.

That's probable the editor, but still it's quite a sea change. Very premature as well, CFS is still pretty much the only thing some MDs are aware of, but still, it signals a massive shift in attitude.

A few months ago, I listened to a conversation between Ian Lipkin and Vincent Racaniello about his experience of being sick with covid 19 and his thoughts about the current state of play of the pandemic as well as his thoughts about the future. He mentioned m.e. in a context I don't recall, probably as a reference to his current concerns. What struck both my partner and I was that he referred to the disease as Myalgic Encephalomyelitis with no qualifier, no also known as or ME/CFS. Perhaps, it was because he was speaking to Racaniello and assumed his audience's knowledge or that, even better, it was decisional.

It's not only that Fauci used Myalgic Encephalomyelitis, in itself a speech act that for m.e. history is tantamount to a quiet world historical event and very moving, particularly for those of us who've had to bear witness to the absurdly incompetent and vicious neglect of vast suffering over several decades, it's pointing to as rvallee says a sea change both institutionally and just as importantly in terms of nosology. Goodbye syndrome hello disease. What is going on there?

 

[Kalliope]

When patients were assessed a mean of 60 days after onset of the first covid-19 symptoms, only 18 (12.6%) were completely free of any covid-19 related symptom, while 32% had one or two symptoms, and 55% had three or more. None of the patients had fever or any signs or symptoms of acute illness. Worsened quality of life was reported by 44% of patients. A high proportion of patients still reported fatigue (53%), dyspnea (43%), joint pain (27%), and chest pain (22%).

The study has limitations as it is based on a single centre with a relatively small number of patients and without a control group of patients discharged for other reasons. There is also a lack of information on symptom history before acute covid-19 illness and no information on symptom severity. Furthermore, the study authors point out that patients with community acquired pneumonia can also have persistent symptoms.

 

[rvallee]

A few months ago, I listened to a conversation between Ian Lipkin and Vincent Racaniello about his experience of being sick with covid 19 and his thoughts about the current state of play of the pandemic as well as his thoughts about the future. He mentioned m.e. in a context I don't recall, probably as a reference to his current concerns. What struck both my partner and I was that he referred to the disease as Myalgic Encephalomyelitis with no qualifier, no also known as or ME/CFS. Perhaps, it was because he was speaking to Racaniello and assumed his audience's knowledge or that, even better, it was decisional.

It's not only that Fauci used Myalgic Encephalomyelitis, in itself a speech act that for m.e. history is tantamount to a quiet world historical event and very moving, particularly for those of us who've had to bear witness to the absurdly incompetent and vicious neglect of vast suffering over several decades, it's pointing to as rvallee says a sea change both institutionally and just as importantly in terms of nosology. Goodbye syndrome hello disease. What is going on there?

The use of ME without any other qualifiers in the last few days alone is massive. Like you said many times the name is used as is, without being uncomfortable about whether people may understand it. People don't actually know what CFS is so it's not as if it adds clarity.

It feels like an old Simpsons joke: "for once I'd like someone to call me sir without adding 'you're making a scene'". This feels a lot like that to me.

 

[JaneL]

I just came across this which doesn’t sound good:

The first unexpected finding is that CAT-scans of the lung showed that two-thirds of those with no clinical signs of Covid-19 had what are called ground-glass opacity abnormalities typical of Covid-19 in at least one lung, and one-third showed ground-glass opacities in both lungs. In simple terms, SARS-CoV-2 is damaging the lungs of the majority who seem symptom-free. The long term health effects of such injuries may be apparent in later life.

https://www.forbes.com/sites/willia...unity-to-covid-19-infection-may-fade-quickly/

 

[Wonko]

I cannot read the linked article as it requires me to either turn off my ad blocker or sign in using a social media account, and I do not feel inclined to allow it to place tracking cookies on my pc, or use those provided by social media platforms.

So two thirds of people who catch covid-19, including those who required no treatment, have significant lung damage?

If this includes asymptomatics then that could eventually be a significant chunk of the human population of the planet.

The people who deliver my shopping require functioning lungs, I have stairs.

 

[Sean]

The use of ME without any other qualifiers in the last few days alone is massive.

This.

 

[Trish]

Alternative medicine practitioners are preparing to cash in on this post-covid epidemic. See this post about the Perrin technique. Doubtless others like LP and the Optimum Health Clinic are gearing up for an influx of desperate people whose lives have been turned upside down by non recovery. We also have a thread on scams.

 

[MSEsperanza]

'It's frightening': Doctors say half of 'cured' COVID patients still suffer

By Nathan Jeffay/ Times of Israel, 28 June 2020

https://www.timesofisrael.com/its-f...s-still-suffer/amp/?__twitter_impression=true

ME/CFS not mentioned, but...

Recovered COVID patients are baffling doctors with complaints of freak pains, lungs that just won’t get back to normal, and a range of incapacitating psychological issues.
“What we are seeing is very frightening,” Prof. Gabriel Izbicki of Jerusalem’s Shaare Zedek Medical Center told The Times of Israel. “More than half the patients, weeks after testing negative, are still symptomatic.”

In Bnei Brak, at Israel’s first community clinic, doctors have been seeing a spike in recent days in the patients with pains that appear to come from nowhere.

“It can appear in the arms, legs, or other places where the virus doesn’t have a direct impact, and if you ask about the pain level on a 1 to 10 scale, can be 10, with people saying they can’t get to sleep,” said Eran Schenker, director of the month-old clinic in Bnei Brak run by Maccabi Healthcare Services. “It’s something which we’re starting to see much more in the last week.”

While the pains are excruciating for some, others describe the pains more as a major discomfort: burning sensations, tingling, or just a hard-to-place sense that a limb does not feel normal.

The patients with these pains do not normally raise red flags during the main medical examinations. Schenker said: “We check their lung and hearts and they have no disease, and they have no neurological issues. We do scans and can’t see anything, but they have this pain — we’re told about it again and again.”

Dan Oyero, Maccabi’s deputy director of medicine in central Israel, said that the overarching issue doctors are dealing with is the far-reaching change in people’s lives, for which doctors cannot predict an end point.

“The most distressing thing is that people compare how they feel now compared to how they were a few weeks ago before they were infected,” he said. “And they say they just can’t do the things they used to do.”

Some of these patients are young and normally energetic, Schenker said.

“It’s amazing how many people went back to work — they can be educators, lawyers and in other professions — but when they sit for an hour they feel anxiety, feel insecure, and sometimes the people suffer from depression beyond what we expected.”

Oyero said:“The main complaints are actually fatigue, compacts [intense periods] of low energy — nothing we can give a name to. Many people say that they don’t have the energy they had before. They are more tired. Some say they don’t have the drive to do things. We can’t give the complaints a name or tell them they have a particular syndrome, but we’re trying to help them.”

 

[Adam pwme]

Just wondering if there is anything published to support Charles Shepherds observation that there are two groups, those suffering post viral fatigue and those suffering complications due to COVID like breathing respiratory, cardiovascular etc.

Thanks

 

[obeat]

Just wondering if there is anything published to support Charles Shepherds observation that there are two groups, those suffering post viral fatigue and those suffering complications due to COVID like breathing respiratory, cardiovascular etc.

Thanks

This was posted by the Dutch.

Anyone with persistent respiratory symptoms after 8 weeks is supposed to have a chest X-ray. I've had persistent SOB and chest tightness since 1st April, so had chest X-ray and spirometry last week. All normal , symptoms are now starting to ease.

 

[Simbindi]

I cannot read the linked article as it requires me to either turn off my ad blocker or sign in using a social media account, and I do not feel inclined to allow it to place tracking cookies on my pc, or use those provided by social media platforms.

So two thirds of people who catch covid-19, including those who required no treatment, have significant lung damage?

If this includes asymptomatics then that could eventually be a significant chunk of the human population of the planet.

The people who deliver my shopping require functioning lungs, I have stairs.

Original research article here:

https://www.nature.com/articles/s41591-020-0965-6

Abstract
The clinical features and immune responses of asymptomatic individuals infected with severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) have not been well described. We studied 37 asymptomatic individuals in the Wanzhou District who were diagnosed with RT–PCR-confirmed SARS-CoV-2 infections but without any relevant clinical symptoms in the preceding 14 d and during hospitalization. Asymptomatic individuals were admitted to the government-designated Wanzhou People’s Hospital for centralized isolation in accordance with policy1. The median duration of viral shedding in the asymptomatic group was 19 d (interquartile range (IQR), 15–26 d). The asymptomatic group had a significantly longer duration of viral shedding than the symptomatic group (log-rank P = 0.028). The virus-specific IgG levels in the asymptomatic group (median S/CO, 3.4; IQR, 1.6–10.7) were significantly lower (P = 0.005) relative to the symptomatic group (median S/CO, 20.5; IQR, 5.8–38.2) in the acute phase. Of asymptomatic individuals, 93.3% (28/30) and 81.1% (30/37) had reduction in IgG and neutralizing antibody levels, respectively, during the early convalescent phase, as compared to 96.8% (30/31) and 62.2% (23/37) of symptomatic patients. Forty percent of asymptomatic individuals became seronegative and 12.9% of the symptomatic group became negative for IgG in the early convalescent phase. In addition, asymptomatic individuals exhibited lower levels of 18 pro- and anti-inflammatory cytokines. These data suggest that asymptomatic individuals had a weaker immune response to SARS-CoV-2 infection. The reduction in IgG and neutralizing antibody levels in the early convalescent phase might have implications for immunity strategy and serological surveys.

 

[Dolphin]

This looks like an exact transcript of what Fauci said

Dr. Fauci went on to say, “If you look anecdotally there is no question that there are a considerable number of individuals who have a post-viral syndrome that really in many respects can incapacitate them for weeks and weeks following so-called recovery and clearing of the virus….you can see people who’ve recovered who really do not get back to normal that they have things that are highly suggestive of myalgic encephalomyelitis and chronic fatigue syndrome. Brain fog, fatigue, and difficulty in concentrating so this is something we really need to seriously look at because it very well might be a post-viral syndrome associated with covid-19.”

https://www.meaction.net/2020/07/10/dr-anthony-fauci-says-that-post-covid-syndrome-is-highly-suggestive-of-myalgic-encephalomyelitis/

 

[rvallee]

This looks like an exact transcript of what Fauci said

https://www.meaction.net/2020/07/10/dr-anthony-fauci-says-that-post-covid-syndrome-is-highly-suggestive-of-myalgic-encephalomyelitis/

I wonder what the stutter was about. If you watch the video, he hesitates and stutters several times before saying ME.

I'd really like to know what's happening behind the scenes, how this is discussed and in relation to decades of pointed denial, especially the refusal to do anything beyond the bare minimum in the last few years. Medicine can be about as secretive as the Soviet politburo, lots of things happening about us that we are denied any right to know or have input. A terrible unaccountable system, in my opinion. That needs to change completely and ASAP.