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

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.

 

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.

 

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?

 

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

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.

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.

 

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’.”"

 

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.

 

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☹️

 

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.

 

Merged thread

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

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

 

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

 

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

 

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

 

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

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.

 

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

 

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.
https://twitter.com/user/status/1284217950996701185