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

[Sly Saint]

deconditioning again:

As the country braces for a second spike of cases, Murchan and her team have been preparing by researching Covid care and rehabilitation. They are also concerned about what she calls a “deconditioning pandemic” among non-Covid patients who either missed appointments during the first lockdown, or did not exercise as much because they were shielding or chose to spend more time indoors.

Wallbank says OTs will also be at the forefront of treating long Covid and thinks a true picture of the virus’s consequences may not be clear for years. “I expect there is going to be a tidal wave of individuals who have things like myalgic encephalomyelitis, post-viral syndrome and fatigue,” she says.

https://www.theguardian.com/society...tional-therapists-brace-for-covid-second-wave

 

[Hoopoe]

First paper I have seen published that acknowledges the common symptom of PEM. That sure took a while. Although somehow they call it "deficit in athletic ability". First reference and it's misinterpreted. Baby steps...

I don't see anything indicating they are acknowleding PEM.

The finding of persistence of SARS-CoV-2 is very interesting however.

 

[Tom Kindlon]

 

[rvallee]

deconditioning again:


https://www.theguardian.com/society...tional-therapists-brace-for-covid-second-wave

Are these people seriously not aware that most people do not regularly exercise and that this is not how deconditioning works at all or what? This obsession is super weird, as if sedentary people who do not have a chronic illness do not exist. A significant % of the population is less active than I am despite having no disabling symptoms.

I mean this is well-known. How can something that is common knowledge just be entirely dismissed when it's inconvenient? Ideological bubbles are ridiculous.

 

[rvallee]

I don't see anything indicating they are acknowleding PEM.

The "deficit in athletic ability". They just misunderstand it to mean people can't run a marathon like they are used to, rather than people who were ready to run marathons a few weeks ago and now can barely walk more than 5 minutes.

 

[rvallee]

https://journals.lww.com/neurotoday..._Long_Haulers__Present_with_Neurologic.3.aspx

I had heard good things about the Mt Sinai clinic but it appears they have already given up trying and have moved to rousing reassurance and attention. That was quick. I've rarely seen people give up so quickly in the face of a challenge as physicians faced with a problem they don't know how to begin solving.

Maybe we should try giving problems to people who aren't deterred at the slightest bit of friction? Weird idea, I know, that to solve a complex problem you actually have to work at it.

 

[Andy]

BBC correspondent: 'Long Covid has left me exhausted for seven months'

More than seven months on from contracting Covid-19, I look fairly normal. There are bags under my eyes but generally I look ok.

It is one of the first things people say: "You look fine - you must be feeling better?" And there is a lesson there.

Over the years as a journalist I have done news stories and documentaries that have touched on the lives of people in chronic pain. The question was how to convey their suffering on camera and get viewers to empathise with something that was essentially invisible?

The answer was to tell the story in their own words. To allow them to give voice to the pain.

I am more comfortable telling other people's stories. But for once I need to tell my own, because I feel I need to explain what "long Covid" is like.

My sick note from the doctor says "post viral fatigue after contracting Covid-19". For me, it is painfully evident but others can't see how it has affected me for months.

https://www.bbc.co.uk/news/uk-scotland-54793726

 

[Andy]

'I could barely function' – the devastating effects of long COVID

Most people recover from COVID-19 within two weeks; however, early figures show that around 10% of people are still unwell after three weeks, and a smaller proportion are sick for months. As infections begin to rise steeply once again, ‘long COVID’ is beginning to be taken seriously.

https://www.pharmaceutical-journal....tating-effects-of-long-covid/20208498.article

 

[rvallee]

BBC correspondent: 'Long Covid has left me exhausted for seven months'

https://www.bbc.co.uk/news/uk-scotland-54793726

I assumed I could push through this illness. That I could drive my way out of it through exercise and good diet and supplements. It has always worked in the past. It turns out that is not the case. And some small-scale recent studies suggest that trying to push through could actually make things worse.

New tears in the same old bottles. All for an insane ideology. Ugh.

WE TOLD YOU SO.

 

[rvallee]

Posting because this seems "official" NHS. But it's very generic fluff. I have no idea what the point is, there is so much redundant work in health care it's maddening, seems like half of all efforts are wasted simply on people doing the same things independently even though the results are nearly identical because they all work from the same assumptions anyway. It's roughly the same content as the Your Covid Recovery site and about as helpful.


People with 'Long COVID' Encouraged to Access Keeping Me Well Website

https://cavuhb.nhs.wales/news/home-...encouraged-to-access-keeping-me-well-website/

Launched in June to support the by Cardiff and Vale UHB COVID-19 Rehabilitation Model, the Keeping Me Well website features a range of information and guidance that people experiencing post-COVID syndrome can access to manage elements of their own rehabilitation.

https://keepingmewell.com/

 

[Hoopoe]

What they recommend for covid 19.

At Cardiff and Vale University Health Board we advocate taking a ‘pacing’ approach to managing your return to physical health.

Pacing focuses on taking small steps towards your fitness goal, starting with simple activities over short periods of time and gradually increasing the difficulty and duration of them.

It could be that this is not intentionally misleading but it doesn't look good.

 

[Wonko]

This is not, in my experience, what pacing is.

Pacing is taking small, appropriate, steps towards a goal, with appropriate rests in between.

The problem is, the largest one at least, IMO, that they have the goal wrong.

My goals are to be able to prepare a meal, to get a bath occasionally, to keep the dirt on the carpet under 6 inches deep, etc.

My goal is not to train to be able to climb mountains.

 

[rvallee]

Really interesting video from long hauler Run-DMC, who somehow managed to perform an informal study asking pertinent questions and produced more useful results than literally all the BPS body of evidence has in the last century or so put together. Sorry if this is a bit confusing it's really hard for me to make this post my brain is overheating from the effort aaaaaaarrrgh.

The premise was to ask questions on Long Covid groups about other immune-mediated diseases, in this case asked about rheumatoid arthritis, PVFS and atopy, which is defined as "the tendency to produce an exaggerated IgE immune response to otherwise harmless environmental substances", in this case specifically asthma, hay fever and eczema. It would be very interesting to expand the sampling and questions. This is almost always the problem here: the researchers who ask pertinent questions cannot get funded and those who only ask impertinent questions get all the funding. Unfortunately research is all about asking pertinent questions so here we are.

There are calculations about relative incidence in the population that I can't verify because of brain fog, but the % don't seem out of whack and the variations found in the sample are outlandishly enough outside of standard variation that it's worth looking into. The numbers for PVFS are obviously the least reliable ones but see the most significant increase, which is consistent with past infections being a potential risk factor.



You read that right, 23% of this sampling had prior PVFS. Most likely mild and impossible to fully confirm, but this is statistically so off the chart it demands investigation.

Also asked whether those conditions have improved, worsened or stayed the same:





It certainly would make sense that autoimmune diseases do not happen spontaneously. It's also fitting that all those immune-mediated diseases were explicitly classified as psychosomatic. Medicine and failing the germ theory of disease, name a more iconic duo (also works with ironic...).



Gez still avoids talking about ME, probably doesn't want to think about what it implies. There are comments below the video asking the question and he says it looks a lot like the underlying factors are the same. To be fair it's so confusing to get started, there is so much contradictory information and the more official a source is, the more likely it is to be disinformation. Which is a serious issue but understandably causes hesitation about making comparisons.

(My brain is now effectively a puddle of fatty goop)

 

[rvallee]

As the first comment in the thread for this article on the /r/CovidLongHaulers sub-reddit said, it's gonna be a while until real help actually arrives. Ooooooh boy, these people are genuinely not listening to a damn thing and do whatever the hell they want to do, regardless of what's actually pertinent.

Nothing says a profession doesn't care about something under its remit more than not even bothering to name it. It shows, it really shows they don't understand a damn thing about what the problem even is or the stakes. Lots of psychobabble anchored on the small minority of cases where they can label everything under anxiety.


Confused About Covid Brain Fog? Doctors Have Questions, Too

https://www.wired.com/story/confused-about-covid-brain-fog-doctors-have-questions-too/

This mental fuzziness, often referred to as “brain fog,” has become one of a number of reported Covid-19 recovery symptoms. And while patients are often alarmed and frustrated that they can’t resume their normal lives, doctors say it isn’t particularly surprising. “We’ve encountered brain fog and mental fatigue commonly post-infection. We do have experience with this,” says Marie Grill, a neurologist at the Mayo Clinic who says it often follows other infections like Lyme disease, Epstein-Barr (better known as “mono”), and other types of herpes viruses. “A lot of us are not surprised at all to be encountering this, because we have seen it so many times,” she says.

You can tell how everything is broken by the fact that two mutually exclusive versions of reality co-exist with seemingly no one noticing that they are fully incompatible with one another. It's both completely brand new, never seen before, but also everyone knows about. And everyone knows about but no one has any damn answer. Well they have answers but they're irrelevant to the problem, which exists but also doesn't.

While researchers study what else might be unique about Covid-19-related memory problems, clinicians are borrowing techniques for treating other cognitive issues like stroke or traumatic brain injury. Hellmuth recommends that people eat a healthy Mediterranean diet, get plenty of sleep, and find some kind of brain-engaging activity they enjoy, like doing crossword puzzles or taking a class online. “Cardiovascular exercise is probably the big ticket item,” she says—walking, jogging, Zumba, anything to get the heart pumping and the body moving.

They hear people telling them they can't think right and genuinely believe it's a good idea to suggest doing brain puzzles and take up classes online. And they hear people who can't exercise and genuinely believe it's smart to advise exercise. It's like everything the patients tell them is made up entirely of white noise and WAH-WAHS, like adults in the Peanuts cartoons.

I expected the dysfunction but it's still shocking to see just how maximally dysfunctional it plays out.

 

[rvallee]

I don't think it's been posted yet? Definitely not just the NHS, but especially the NHS, ironically because it is more prepared, it's just prepared for an imaginary alternative version of reality.


Why is the NHS ill-equipped to care for Long Covid patients? Lessons from other chronic illness and ‘medically unexplained symptoms’

https://www.healthcarehubris.com/an-ill-equipped-nhs-for-long-covid

If mainstream media reports or government and NHS discourse vis-à-vis Long Covid were to be believed, you would be forgiven for thinking that severe, complex, multisystem and disabling post-viral sequalae are unprecedented and unique to Long Covid. The truth is, they are not. Other patient groups (most notably, people with ME/CFS - myalgic encephalomyelitis or chronic fatigue syndrome) have been reporting post-viral and post-infectious symptoms strikingly similar to Long Covid for decades. Unfortunately, the health services, government and media have largely chosen to ignore these patients, not infrequently becoming complicit in vilification, marginalisation and systematic neglect. This series of blogs looks at how and why we could – and should – have been far better prepared to care for Long Covid patients, if only the healthcare system and associated structures had indulged a little less in institutional hubris and focused a little more on listening to patients.

 

[Mij]

'Social interactions often help patients start to rehab their brains. Visits with family and friends can keep them engaged and help them flex the cognitive powers that lost strength during an illness'.

This has been quite the opposite 'solution' in my case of 'brain fog'.

 

[leokitten]

I haven’t been able to keep up with this (prolific) thread as of late, but have there been a subgroup of people now with long COVID that are getting diagnosed with ME/CFS? Has it been making any news?

 

[John Mac]

Long Covid: what teachers and pupils need to know

Symptoms tend to be exhaustion, both physical and mental,” says Coakley. “People can have problems with memory and concentration. One of the hallmarks of PVFS and ME/CFS you look for is post-exertional malaise, so if you do more physical activity or exercise than usual or you do a lot of intellectual work, then there's a payback for days afterwards with more severe exhaustion.

How similar to long Covid is ME/CFS and PVFS? Many experts in the latter say that early indications are that there are very close similarities between them.
“I've been dealing with PVFS and CFS/ME for 20 years and in many respects, the kind of symptoms I'm hearing about from people with long Covid are very similar,” says Coakley.

So why is long Covid being seen as distinct from PVFS and ME/CFS?
“It's premature to put it in that [PVFS or ME/CFS] box now, as we really don't know exactly what long Covid is,” states Alwan. “Some of the features are similar, but there's a very wide range of symptoms people with long Covid are experiencing and some of those people don't have any fatigue. They may have heart symptoms of neurological symptoms or respiratory symptoms.”

She adds that ME/CFS is a neglected condition that has not been properly investigated, so making comparisons at this point is likely to be inaccurate.

However, it’s also important to note that there are huge misconceptions around ME/CFS that those with long Covid are keen not to see attributed to their symptoms, too.

ME/CFS has been continually written off – even by some in medicine – as a “made-up” or “psychological” issue because biological triggers for the issues have yet to be found. This can see patients maligned rather than supported.

https://www.tes.com/news/long-covid-what-teachers-and-pupils-need-know



A discussion of Jo Daniels' defense of CBT for ME/CFS and CBT has been moved here:
https://www.s4me.info/threads/jo-daniels-on-cbt.17799/

 

[Sly Saint]

I don't think it's been posted yet? Definitely not just the NHS, but especially the NHS, ironically because it is more prepared, it's just prepared for an imaginary alternative version of reality.


Why is the NHS ill-equipped to care for Long Covid patients? Lessons from other chronic illness and ‘medically unexplained symptoms’

https://www.healthcarehubris.com/an-ill-equipped-nhs-for-long-covid

from that series of blogs

The relevance of this to Long Covid is clear: many patients suffer with an overwhelming plethora of symptoms and many patients are findings that basic tests come back negative or ‘nothing abnormal detected’. According to biopsychosocial philosophy, this is a good indication that such patients have a primarily psychological or psychosomatic issue which requires no further medical investigation. Hence, Long Covid patients’ concerns and attributions of their symptoms to biological pathology are dismissed, minimised and psychologised.

Long Covid researchers are beginning to catch on to this dynamic of multiple and disparate symptoms being a barrier to healthcare professional belief; indeed they seem somewhat surprised by it. A report issued by the National Institute for Health Research (NIHR) entitled ‘Living with Covid 19’ details a number of barriers to care faced by Long Covid patients due to the multisystem, disabling, poorly delineated, difficult to prove nature of the illness. These barriers apply to a number of other chronic illnesses which are multisystem, disabling, poorly delineated and difficult to prove, and all of these barriers have been repeatedly pointed out by people with illnesses such as ME/CFS. The UK press has duly picked up on the NIHR report findings and, predictably, presented these barriers as somewhat of a revelation.

https://www.healthcarehubris.com/po...are-models-biomedical-versus-bio-psychosocial

 

[Dolphin]

I thought it was interesting to see this from Paul Garner. And he’s a doctor: