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

[Sid]

Yep. Nothing against mental health support where it's needed or wanted but where it isn't needed or wanted it can often just place an extra burden on the patient.

They never seem to figure out that time, energy and resources spent this way might be more productively spent elsewhere. Even if that time is spent just resting.

The worst thing about having ME is that you can't even accept counselling support provided by the state because a) the energy expended to get to and from the appointments would be self-defeating for anyone who is moderately affected or worse b) they would try to push THEIR false illness beliefs on you and try to get you to increase your activity levels rather than just providing support like they would for people with recognised conditions.

 

[wingate]

The segment didn't go into details but he mentioned ME, aka the fancy name for CFS. He seems to want to dig into this and is frankly likely to do some reports on it. He said he'd bring both of them back to talk about it in the near future.

Sad to see that Chris and the family are still suffering from effects of COVID.

I was at least heartened that his physician was aware of ME and seemed to know it could result from a virus and/or cause some of the symptoms that Chris seems to be dealing with. (I truly hope he's being advised to rest and not overdo it...)

It was also good to see him describe symptoms he's experiencing (brain fog, poor recovery time, etc.) to indicate he's not "just" tired.

Let's hope that they all recover and that he continues to bring awareness to the illness.

 

[rvallee]

I thought this Reddit thread was interesting. It asks for those who had symptoms for 4+ months where they are, whether any recovered. There is definitely a self-selection effect but most of the answers are closer to about 3 months anyway. Few people seem to reach 100+ days of symptoms and fully recover. And always the warnings about exertion triggering relapses.

Most fully recover, but it seems to be either within 1-3 weeks. So the threshold at which poor recovery outcomes occur is closer to the 4-6 weeks mark, definitely not 4-6 months. I've seen many reports of people recovering within 1-3 weeks, but once it crosses that the odds diminish rapidly. I see a few on the thread who did recover despite 3-4 months of symptoms but they are far and few. There is another sub for those who recovered, it has very little activity and a few posts of premature celebration of recovery that relapsed.

So observing the change, what differentiates those who continue to be ill, has to be made as early as possible and waiting 4-6 months is absolutely wrong. Basically things we already knew, especially the exertion trigger, but it just confirms once more the moral and intellectual bankruptcy of the BPS model.

Where are all 4 months+ long haulers? Are there just a few of us left and the rest has cured?

 

[rvallee]

Most Covid-19 patients admitted to a Sydney hospital in March still have symptoms

https://www.theguardian.com/austral...-sydney-hospital-in-march-still-have-symptoms

The majority of patients admitted to an acute care hospital in Sydney with Covid-19 in March and April are still experiencing symptoms more than three months after being discharged.

“So about a third of those patients still have symptoms now, and that’s three or four months after being infected. And actually, if you look at those 10% of cases who were admitted to the hospital – so the serious cases and those requiring intensive care – about 80% of those patients still have some symptoms.”

the persisting symptoms being reported were similar across both the severe and mild cases. “The symptoms are pretty comparable in both groups, except in the hospital patients they happen more often,”

Reduced exercise tolerance was another common symptom, and the chest symptoms differed between patients.

Dore said some people had dismissed these symptoms as being mainly psychologically driven, an ongoing effect of having experienced a new and concerning virus.

Matthews said she tried to reassure patients that many infectious diseases, such as influenza, come with lasting symptoms

Not even 1% as reassuring as they seem to think once people start researching it. I'm really confused what's supposed to be reassuring about this.

“What we would say is ‘we’re confident it’s very likely you will make a full recovery’ because even in other viruses which cause post-viral syndromes there is usually a full recovery

There is a lot hidden within that usually. Again not exactly feeding that whole reassurance thing with quality nutrients. Because the reason there is nothing but a shrug and a plastic smile to offer has been a deliberate choice that does not seem to especially bother doctors casually telling people they have no idea if their life is ruined or not. And if it takes months or years, completely unknown, what until then? How do people live like this?

It's getting really frustrating how casual and apathetic the willful ignorance is being treated, as if it had been this sheer vertical cliff impossible to even consider climbing, rather than an easy but long incline that medicine was simply too lazy and obsessed with quackery to even attempt to walk up. All they had to do was to let those willing and able to do the work and give them resources.

Instead here we are, doctors basically shrugging at what they actually know they would personally dismiss as psychological were it not for special circumstances and not seemingly bothered that medicine absolutely could have known better but simply chose not to. I understand the need for professional detachment but this is cold as deep space.

 

[Esther12]

“What we would say is ‘we’re confident it’s very likely you will make a full recovery’ because even in other viruses which cause post-viral syndromes there is usually a full recovery

The Prof. saying that, Gail Matthews, is at the Kirby Institute, same as Andrew Lloyd. Fingers crossed, but I'm not sure how confident they should be telling patients they are at this point. They did go on to say: "But we do have to be honest and say, ‘we don’t really know, and nobody in the world knows’.”"

 

[Sean]

but this is cold as deep space.

And as vacuous.

 

[JellyBabyKid]

Yes, that’s me. Thanks for sharing. I only just seen it.

It is somewhat edited. It’s not a big deal but I didn’t write that CFS is “also known as myalgic encephalomyelitis (ME)”. My original letter only referred to ME/CFS so I understand why they felt the need to expand it but I wouldn’t have used their wording. I might say “ME is sometimes referred to as CFS” but not the other way around.

The second paragraph of my letter about DecodeME didn’t make the cut but I also sent a note to the editor suggesting that New Scientist might consider an article on DecodeME, so I hope they may do that. I can’t download the e-magazine from the library until tomorrow so I don’t know if there might be anything about it in this weeks edition.

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]

Somewhat surprised to see DecodeME doesn't appear to be mentioned in the latest issue (freshly downloaded) either so they might be getting an email from me too.

 

[obeat]

I thought this Reddit thread was interesting. It asks for those who had symptoms for 4+ months where they are, whether any recovered. There is definitely a self-selection effect but most of the answers are closer to about 3 months anyway. Few people seem to reach 100+ days of symptoms and fully recover. And always the warnings about exertion triggering relapses.

Most fully recover, but it seems to be either within 1-3 weeks. So the threshold at which poor recovery outcomes occur is closer to the 4-6 weeks mark, definitely not 4-6 months. I've seen many reports of people recovering within 1-3 weeks, but once it crosses that the odds diminish rapidly. I see a few on the thread who did recover despite 3-4 months of symptoms but they are far and few. There is another sub for those who recovered, it has very little activity and a few posts of premature celebration of recovery that relapsed.

So observing the change, what differentiates those who continue to be ill, has to be made as early as possible and waiting 4-6 months is absolutely wrong. Basically things we already knew, especially the exertion trigger, but it just confirms once more the moral and intellectual bankruptcy of the BPS model.

Where are all 4 months+ long haulers? Are there just a few of us left and the rest has cured?

Someone asked Tim Spector( KCL) on the Covid19 Symptoms App, if they could have been reinfected after 1 month free? of symptoms. I wondered if it's more likely to be PVFS because their activity level has increased.

Twitter replies can be too vague

 

[Kalliope]

The Conversation: Coronavirus: why are some people experiencing long-term fatigue? by Frances Williams, prof. of Genomic Epidemiology and Hon Consultant Rheumatologist, King's College London

Chronic fatigue doesn’t lie within the remit of a single medical speciality, so it’s often overlooked on medical school curricula, and doctors are poorly trained in the diagnosis and management of chronic fatigue. But recent progress has been made and online training is available for doctors that covers how to care for at least those with the most severe symptoms.

Guidance for patients in managing chronic fatigue and how to conserve energy is also now available. The important thing to stress is that taking out a gym membership and pushing exercise is the wrong thing to do and can set people back considerably. Small efforts – mental or physical – should be followed by rest. Return to work, when it happens, should be a gradual and graded process. Learning to pace activities is very much the order of the day.

 

[Sean]

Small efforts – mental or physical – should be followed by rest. Return to work, when it happens, should be a gradual and graded process.

We used to call this 'convalescence'.

 

[Adrian]

Someone asked Tim Spector( KCL) on the Covid19 Symptoms App, if they could have been reinfected after 1 month free? of symptoms. I wondered if it's more likely to be PVFS because their activity level has increased.

Twitter replies can be too vague

I did see one article where there seem to be a small number of well documented cases of reinfection. I think they were talking about 3 months but where someone was tested positive with symptoms, got better tested twice with negative results and back to normal then got symptoms again and positive tests.

 

[Adrian]

I did see one article where there seem to be a small number of well documented cases of reinfection. I think they were talking about 3 months but where someone was tested positive with symptoms, got better tested twice with negative results and back to normal then got symptoms again and positive tests.

This was an article I saw
https://www.vox.com/2020/7/12/21321653/getting-covid-19-twice-reinfection-antibody-herd-immunity

 

[Sly Saint]

Merged thread

Article Salford Star (UK): POST-COVID 19 FATIGUE SYNDROME RESEARCH COULD ALSO BE A BREAKTHROUGH FOR ME CFS PATIENTS July 2020

THOUGHTS OF A SALFORD ME CHRONIC FATIGUE SYNDROME PATIENT…

Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) patient, Karen Morris, from Salford, has been campaigning for better treatment for sufferers for a number of years.

She now hopes things might improve as Health Secretary Matt Hancock has announced £10million for research, linked to post-COVID 19 symptoms that resemble ME. "Could this be a potentially huge breakthrough for patients with ME CFS?" she asks.

This week, Health Secretary Matt Hancock announced that is he concerned about a "significant minority" of post-COVID-19 patients, and has pledged a ground breaking £10million into research. This post-COVID-19 fallout is obviously horrendous for the new patients affected, as well as the devastating number of global fatalities and the economic and social impact. There is also the mysterious Kawaski disease in children, similar to during the SARS-CoV-2 epidemic.

However, could this be a potentially huge breakthrough for patients with ME CFS? There are over 250,000 ME patients in the UK, and twenty million worldwide. So little has been spent on ME research for decades and this mainly focused on psychology ('it's all in your head'), such as the infamous scientifically flawed PACE trial.

Yet there continue to be similar studies, including studies on children (ME CFS is the biggest cause of long-term absence in schools). My concern as a patient and advocate, is that this new post-COVID-19 research will go back to psychology, overlooking identical physical symptoms, patterns and outbreaks since the '80s.

In the past, some of these global outbreaks, e.g. whole hospitals including staff, have simply been put down to hysteria. Surely, this cannot happen with COVID-19 which is a major historical event.

Another concern is the current harmful treatment for ME CFS, which is now being suggested for post- COVID-19 fatigue syndrome. A few weeks ago, Oxford Health NHS FT released a document that was later taken down, saying things like 'Unhelpful ways to manage symptoms following a virus…Resting too much'...But PEM Post Exertional Malaise is key symptom and there is overwhelming evidence that forced exercise has made patients significantly worse, both short and long-term.

The UK NICE guidelines still recommends the two treatments GET Graded Exercise Therapy and CBT Cognitive Behavioural Therapy based on this flawed research.

full article here
http://www.salfordstar.com/article.asp?id=5711

 

[Invisible Woman]

Because the reason there is nothing but a shrug and a plastic smile to offer has been a deliberate choice that does not seem to especially bother doctors casually telling people they have no idea if their life is ruined or not. And if it takes months or years, completely unknown, what until then? How do people live like this?

Exactly. How do you have that conversation with your boss, your partner, your mortgage company, relevant insurance company, benefits agency?

They need to know & pressure will be applied until some answers are given. The modern world waits for no man and very, very soon they'll be wondering about rehab.......have you tried that yet?

In a world where they want to diagnose perfectly normal reactions to grief and caffeine withdrawal as mental health problems, where being asked to stay home (many still paid) with Netflix, the internet, zoom etc is seen as a risk to one's mental health, how the heck can they not see, or care, that the shoulder shrug is a recipe for an uncontrolled collapse of a person's life as they know it? With extra pressure being placed on people from all sides and no support.

Edit -spelling

 

[Dolphin]

Post-COVID syndrome is a new, yet old, condition

• By DR. VICTOR S. SIERPINA
  
• Jul 15, 2020

https://www.galvnews.com/health/free/article_24417ea1-6d0a-5080-8146-e084e5c65399.html

 

[MEMarge]

It was reported a few months ago that one of the main anchors at CNN, Chris Cuomo, contracted COVID. He has since covered the long-term symptoms a bit, as he does himself still have brain fog and he says depression without sadness, which probably came from a GP who thought of chronic fatigue but sees it as depression, my guess as the definition of atypical depression is basically chronic fatigue without PEM. He says he can't train as well as he used to, either. If anyone has ever seen him shirtless, the dude definitely lifts.

He had a segment a few weeks ago with a mother whose entire family of 6 was sick and 4 of them still have symptoms, two of them severe enough to be disabling, though more on the mild-moderate end. Tonight he had another segment with her along with CNN's medical correspondent Sanjay Gupta, who was pretty sympathetic and has a good reputation as TV doctors go.

The segment didn't go into details but he mentioned ME, aka the fancy name for CFS. He seems to want to dig into this and is frankly likely to do some reports on it. He said he'd bring both of them back to talk about it in the near future. His show is pretty high profile so reaches a lot of people. So this is nice.

But also significant is that he is the brother of NY's governor. I'm pretty sure this is something they'll talk about. Andrew Cuomo was pretty visible in the early days of the crisis, when NY was at its worst, and held daily briefings and conferences talking about it. If he talks about it would reach a whole lot of people, including in government.

@Gecko @JaimeS @RuthT have you seen the above and #880

 

[rvallee]

Fauci Warns Chronic Fatigue-Like-Syndrome Lingering For Months or Years Among Young COVID-19 Patients

https://www.latinpost.com/articles/...ome-lingering-months-years-young-covid-19.htm

Dr. Anthony Fauci, the country's leading infectious disease expert, has highlighted the range of symptoms among young coronavirus disease 2019 (COVID-19) patients in an interview with Facebook CEO and Founder Mark Zuckerberg on Friday.

Fauci said most of the young people, who tested positive for the coronavirus, won't become seriously ill, but may suffer from "post-infection syndromes" that resemble to chronic fatigue syndrome (CFS). However, he noted that it may take a while, maybe for months or years, to determine if these young people will suffer from chronic illnesses.

In an interview with Zuckerberg, Fauci said "it's the people who really get knocked out badly, particularly those who require hospitalization, that it's going to take months to a year or more to determine if there are any long-lasting, deleterious consequences of the infection."

Ugh. Can't really expect him to be up to speed given his role on the big picture stuff but it's disappointing to see this baseless claim yet again. Truth is we never had any evidence for this, it was always largely speculated based on Wessely's traumatized-from-serious-illness junk and mostly because early cases were never properly researched, a fault that is entirely on medicine simply not bothering to do the work. Data so far indicate something like 90% of long-haulers were never hospitalized.

Now anyone going to do anything about this? Maybe someone in some role or another as director of some large research institute for infectious diseases of some kind? No? OK, then, guess we're still going with "sucks to be you", then. Just take months or years off, I guess, at your own expense, without support. I'm sure that will go as splendidly as it did for the millions of us ruined by this indifference.

 

[chrisb]

One does wonder whether Fauci might "revisit" his part in all this from 1988 onwards.

 

[rvallee]

Fauci Warns About ‘Post-Viral’ Syndrome After COVID-19

https://www.healthline.com/health-news/fauci-warns-about-post-viral-syndrome-after-covid-19

That one is a bit too frustrating to bother quoting. Some good bits, many very bad ones. Actually recommends CBT and GET. Along with actual "rousing reassurance". Ugh. It has some not awful bits but overall very poor with lots of ignorant opinions.

As usual some frustration that we don't know more. THEN FREAKING DO SOMETHING! This is not some impossible problem handed down from heaven and unknowable to mere mortals. But the attitude seems to be hoping it goes away by magic.

“Long haulers, or those with lingering symptoms beyond two weeks, may be developing a condition similar to those persons who have ME/CFS,” said Glatter. “What’s clear is that we need to devote considerable research to the study of the post-COVID viral syndrome. Ironically, COVID-19 is shining light on the often ignored patient population with ME/CFS.”

Yes. Now. Do it. People have been begging for decades. DO IT. This isn't something where passive-aggressive wishes of "oh, if only someone would hand us the solution to that problem with zero effort from us". DO IT. That means money, commitment and an end to decades of cruel discrimination leading to what appears to be a life expectancy of 55 years old. This isn't some fairy tale where everyone lives forever happy no matter what choices people make. MAKE. THE. CHOICE!

 

[Kalliope]

Fauci Warns About ‘Post-Viral’ Syndrome After COVID-19

https://www.healthline.com/health-news/fauci-warns-about-post-viral-syndrome-after-covid-19

That one is a bit too frustrating to bother quoting. Some good bits, many very bad ones. Actually recommends CBT and GET. Along with actual "rousing reassurance". Ugh. It has some not awful bits but overall very poor with lots of ignorant opinions.

As usual some frustration that we don't know more. THEN FREAKING DO SOMETHING! This is not some impossible problem handed down from heaven and unknowable to mere mortals. But the attitude seems to be hoping it goes away by magic.

Yes. Now. Do it. People have been begging for decades. DO IT. This isn't something where passive-aggressive wishes of "oh, if only someone would hand us the solution to that problem with zero effort from us". DO IT. That means money, commitment and an end to decades of cruel discrimination leading to what appears to be a life expectancy of 55 years old. This isn't some fairy tale where everyone lives forever happy no matter what choices people make. MAKE. THE. CHOICE!

Seems the journalist gets the message. Hopefully the article will be swiftly corrected concerning exercise as treatment approach.