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

[rvallee]

https://nsuworks.nova.edu/grant_awards/24/

What's the deal with research proposals using the no-paragraphs thing? Really hard to read.

The details:

• Utilizing these two recruitment approaches for the Longitudinal Survey Cohort, our aim is to recruit 2,000 persistently ill participants
  
• These participants will complete a screening text based survey that will ask the individual if they have fully recovered from COVID-19, if they were hospitalized and, for those who have not fully recovered, ask if they are more tired, experiencing low energy and/or more fatigued now than they were before their COVID-19 diagnosis (hopefully they will ask about a far wider range of symptoms than just fatigue)
  
• Among the first 2,000 individuals persistently ill individuals who complete this screening survey, the first 700 who agree to participate in future surveys and who meet inclusion criteria for possible ME/CFS will be invited to participate in the Longitudinal Survey Cohort
  
• The Longitudinal Survey Cohort will be contacted at least four times a year for health and trajectory assessment over a three year period
  
• To address survey fatigue, we selected surveys on alternating quarters to assess the domains of ME/CFS longitudinally
  
• Of these 700 participants, 150 will be recruited for the clinical based assessment based on study inclusion criteria
  
• In addition, another 200 participants who have fully recovered from COVID-19 infection will be recruited as a control cohort, surveyed annually for three years, from which 50 will be recruited into the Phenotyping Study
  
• In the phenotyping/clinical assessment, a second group of survey questionnaires will be administered, along with physical examination, echocardiogram, spirometry, laboratory testing, and expert clinical examination

 

[rvallee]

$1.15B is more funding than has ever been spent on ME research in total. Technically it's studying the same thing for the most part, so basically the entire field will make more progress in the next 3 years than everything done so far combined. This itself will enter more researchers into the field than ever before.

This is indeed a very nice Christmas gift. Like having your kid brother gifted a present that is meant only for them but that we will be able to use anyway.

Will have to look more at the details but this sounds like the biggest development in ME history. And likely entirely unaware that it is.

Life is freaking weird but I'll take it.

Edit: should note that this funding is for all long-term Covid concerns so obviously it's not all going for Long Covid but even if it's not the right room at least it's the right building

Edit 2: also notable that this hasn't been signed yet because of... uh... technical difficulties American politics are currently experiencing; but it will be signed, only a matter of time

 

[Jonathan Edwards]

Then lots of neurologists are throwing buzzwords, independently.

I am not sure about that. Are the people proposing neuroinflammation in ME actually neurologists? As far as I can see most are researchers fro other fields with no particular expertise in clinical neurology or pathology.

More generally, vocal people talking about mechanisms of disease probably have little idea what they are talking about more often than not. OK, when people say diabetes is due to too much sugar in the blood, nobody is going to argue, but for anything much more complicated the track record is not that good.

 

[rvallee]

I am not sure about that. Are the people proposing neuroinflammation in ME actually neurologists? As far as I can see most are researchers fro other fields with no particular expertise in clinical neurology or pathology.

More generally, vocal people talking about mechanisms of disease probably have little idea what they are talking about more often than not. OK, when people say diabetes is due to too much sugar in the blood, nobody is going to argue, but for anything much more complicated the track record is not that good.

I've mostly seen neurologists say that about LC. More important: most neurologists I remember stating their hypothesis said that. The other hypotheses were irrelevant, PTSD or stuff like anxiety, so that's pretty much the only real idea going on. My memory is bad and not specific but this is the pattern I noticed over the months, at the very least no one has a better starting point.

They are probably using the colloquial idea of neuroinflammation, meaning something more like glial activation, or whatever special things the immune system has to do in the nervous system. I think their words are meant to convey the simplified version like sugar and diabetes would.

I am not aware of many neurologists interested in ME besides Van Elzakker and Younger, so hard to tell. But they both make it clear that they use neuroinflammation in a way that relates to what people understand as inflammation, but works differently in the nervous system. It's mostly to keep the ideas simple to communicate, and just as well this stuff is over most of our foggy heads anyway.

 

[Jonathan Edwards]

I am not aware of many neurologists interested in ME besides Van Elzakker and Younger, so hard to tell. But they both make it clear that they use neuroinflammation in a way that relates to what people understand as inflammation, but works differently in the nervous system. It's mostly to keep the ideas simple to communicate, and just as well this stuff is over most of our foggy heads anyway.

Yes, I think we were discussing this in the context of ME. van Elzakker and Younger are not a clinical neurologists as far as I know. As someone who has worked in the field of inflammation I am very unclear what is meant by 'neuroinflammation' and not long ago a neurologist commenting on a major conference made the same comment. In simple terms there is no evidence for inflammation in the brain in ME. If people are talking about 'working differently' then that needs to be specified. Glial activation is the equivalent of macrophage activation in other tissues. One Japanese study provided some evidence for glial activation but the more time goes by the less happy I am that it tells us anything very helpful.

 

[rvallee]

Haven't watched, 28 min. Will try tonight. From Germany.

I just watched it. It's pretty good. It would be awesome without the context of people having ignored this for decades. It's basically like taking the Lake Tahoe outbreak and amplifying it massively. Exact same story, just so much larger. Exact same suffering, aptly described here, just not ignored to begin with and gaslighted as mass hysteria. Not even a little. There's one doctor who wants to say it but either it got cut or he held it.

There is a weird tone in the beginning, narrated over a sequence in a rehabilitation clinic. It's a description of reality that strongly implies that to do normal things people basically need to train like marathon runners. Lots of speak about being fit for work. One of the patients interviewed is a doctor and speaks of how her job requires to be fit, to change bandages and stuff like that. Which obviously anyone who is healthy and of working age can do with no problem and zero need to train beforehand. As if people who don't exercise spontaneously turn into deconditioned jellies within the hour. Really weird to have such a distorted framing of just how much physical training is required to basically just function. People get fitter as they are active. It's how it works. It seems as if when it doesn't people just refuse it.

It's a 3 week program and at the end of what looks like a GET type program, the attending physician asks her how her fatigue is. She says she doesn't know, that it's hard to tell until you try doing things normally, like working. It's completely different going from doing a few minutes of light exercise a day with lots of rest and being normally functional. It's absolutely not normal to be floored by doing simple things, to go from running marathons to barely being able to walk up stairs. People really don't need to train GET style in order to be able to just do normal things. I don't get the disconnect with reality here. We're not talking about people who were bedbound for weeks. And yet this is about the only scenario in which an otherwise healthy person could be this deconditioned. It's so weird.

Not much talk of any context, the history and how some of it may be new but lots of it isn't. At one point there's a doctor who says it's sad they don't have years of experience to draw upon. It's even sadder that they do and ignore it. Even sadder still that despite such experience existing, it's so tiny it would make little difference. At least it would have avoided the current several months wasted on GET style programs and weird expectations about human bodies being mostly made of pudding without constant high intensity training.

Near the end is the only mention of chronic fatigue and two of the patients describe PEM but have no idea what it is.

The documentary is a pretty good dismantling of every single damn trope said over the years, about lazy people, who don't try hard, who refuse to try to exercise, who think negative thoughts and can't bring themselves to make changes to their lives. This is about people who want to return to work, love their life and absolutely badly want to go back to it. Also: of course it's 100% all about the symptoms and nothing but that. No one is scared, confused or anxious of a damn thing they just want their damn lives back.

 

[rvallee]

Post-COVID-19 Fatigue: Potential Contributing Factors

https://www.mdpi.com/2076-3425/10/12/1012/htm

Much of the spotlight for coronavirus disease 2019 (COVID-19) is on the acute symptoms and recovery. However, many recovered patients face persistent physical, cognitive, and psychological symptoms well past the acute phase. Of these symptoms, fatigue is one of the most persistent and debilitating. In this “perspective article,” we define fatigue as the decrease in physical and/or mental performance that results from changes in central, psychological, and/or peripheral factors due to the COVID-19 disease and propose a model to explain potential factors contributing to post-COVID-19 fatigue. According to our model, fatigue is dependent on conditional and physiological factors. Conditional dependency comprises the task, environment, and physical and mental capacity of individuals, while physiological factors include central, psychological, and peripheral aspects. This model provides a framework for clinicians and researchers. However, future research is needed to validate our proposed model and elucidate all mechanisms of fatigue due to COVID-19.

Although the mortality rate is lower in COVID-19, it has been compared to severe acute respiratory syndrome (SARS) due to their similar symptomology [6]. Like COVID-19, persistent fatigue was apparent in SARS patients, even up to one year after their initial infection [1]. Another study showed that 40% of SARS survivors still reported fatigue after 4 years [2]. Townsend et al. [7] found that there was no association between acute symptom severity and the prevalence of persistent fatigue following COVID-19. Moreover, they showed a substantial occurrence of post-viral fatigue in individuals with previous COVID-19 disease after the acute phase of the virus.

Seems to be mostly an attempt at making a more refined definition of fatigue, the lack of which is a major issue. Their attempt:

Fatigue is defined as the decrease in physical and/or mental performance that results from changes in central, psychological, and/or peripheral factors. These depend on the task being performed, the environmental conditions it is performed in, and the physical and mental capacity of the individual (conditional dependency). Importantly, fatigue is greatly affected by the factors of conditional dependency and the interactive changes in central, psychological, and/or peripheral factors (physiological factors) that cause fatigue.

Although any particular focus on fatigue and fatigue alone is unlikely to be of much use. Especially attempts at bringing in non-physiological factors. Not especially useful but this is more coherent than anything produced by our BPS overlords.

 

[Jonathan Edwards]

Fatigue is defined as the decrease in physical and/or mental performance...

I would say back to front again. Fatigue is not a decrease in performance. It is, apart from being unpleasant, the reason for a decrease in performance under certain conditions. It is a bit like saying consciousness is talking and moving about (more or less how Lynne Turner-Stokes defined it to me). It is not. It is what makes it possible to talk and move about. People should not be frightened to believe in the existence of mental realities. I am just quoting Einstein on this in a paper of mine:

A geometrical-physical theory [is] merely a system of concepts... [that] serve the purpose of bringing a multiplicity of real or imaginary sensory experiences into connection in the mind.

The mental is our reality, even if in disease we want to have a physical theory to explain what unsettles it.

This is Turner-Stokes-speak rather than Wade-speak. I am not sure either is going to help anyone.

 

[Hoopoe]

If fatigue is the decrease in physical and/or mental performance, then fatigue can be treated by improving physical and/or mental performance. For example with exercise.

 

[rvallee]

https://beta.sam.gov/opp/1c8107112ead4c5d8f4e517cd9271fd2/view

At page 20:

The SARS CoV-2 pandemic has highlighted the poorly understood clinical syndromes, referred to as postinfectious fatiguing syndromes, that result in significant functional impairment associated with debilitating fatigue, post-exertional malaise, dysautonomia, and cognitive difficulties. Some of these patients have evidence of organ damage and others remain ill with persistent symptoms after SARS-CoV-2 infection without obvious organ damage. The latter group, in particular, have symptoms overlapping those of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

Health systems have designed clinics specifically for COVID “long haulers,” and more are cropping up as the pandemic progresses. Given numbers of people infected, even if the percentage who have persistent symptoms is small, it is possible that large numbers of patients will experience post-infectious fatiguing syndromes. Best practices for the evaluation and management of patients with this emerging condition are unclear, and an increasing demand by health care providers for information and treatment interventions is anticipated. Similarities with ME/CFS and post-infectious fatigue suggest that health care providers and patients will experience challenges in communication about the illness and in improving quality of life. The SARS-CoV-2 pandemic presents both an opportunity to apply knowledge gained from more than 30 years of studying ME/CFS, and to gain new insights about post-infectious fatiguing syndromes.

Evidence exists for the effectiveness of multi-disciplinary team approaches to the care of other complex conditions. However, consensus on how teamwork and services are optimally coordinated continues to be a work in progress.

CDC is interested in the development and evaluation of multi-disciplinary team approaches needed to care for patients with chronic sequelae of SARS-CoV-2 (long COVID), ME/CFS and other post-infectious fatiguing illnesses. All solutions should include a mechanism for the open exchange of information broadly among health care providers, including those who are experienced in the care of patients with ME/CFS and other complex post-infectious fatiguing syndromes, in the formative phase of the project and throughout the period of investigation, to facilitate information gathering about design approaches as well as the efficient dissemination of information about evidence-based practices.

Looks like PEM is coming out of the shed, folks.

As this is the burning question, unfortunately:

NOTE: CDC cannot discuss budget estimates or number of awards expected and cannot review draft white papers prior to submission.

Point of contact at CDC is Jeanne Bertolli. Name ring a bell?

 

[Wonko]

Do we actually want multidisciplinary teams tho?

Or would specialists (in ME/PVFS/Log Covid) be preferable?

Loads of people with tiny bits of knowledge that might be relevant, all communicating with each other, inefficiently experience has shown, with loads of 'biases' that keep shoving us in to the wrong rabbit hole, or;

People who understand the whole condition, at least in broad strokes, with fewer inbuilt and damaging/dangerous (to patients) biases - who at least understand that trying to force patients into a particular hole, cutting off any bits in their histories, experiences or requirements, is a bad and damaging thing to do.

Hmmm....I can't help wonder what this obsession is with using teams of people, none of whom knows what they are doing, as otherwise the rest wouldn't be needed, rather than y'know, finding or training people to actually know what they are talking about.

It's not as if ME/PVFS and probably long covid was that complicated - simple minded thicko's like me deal with it every day - it should be possible for someone with medical training, a fully functioning brain, and without the pretty drastic limitations of a pwME, to understand - if they actually tried.

 

[Kitty]

Do we actually want multidisciplinary teams tho?

That's the traditional rehab model, like the provision for people who've had a significant stroke. At various times they might be offered support from a dietician, a physio, a speech and language therapist, and an occupational therapist, in addition to a consultant, GP, and specialist nurse.

It's not only unnecessary for an ME or post-viral Long Covid patient – it's actively unhelpful and has the potential to cause further harm, given that taking part in even one appointment can be like climbing a ruddy mountain.

 

[Wonko]

It's not just that, it's that each specialist may be able to contribute from their area, or not, but if they each have an incorrect bias, like that the problem can be helped with exercise, then that gets reinforced.

So in a team of 6 specialists you may get one or 2 things that may be helpful, but you also get 6 thinking the way to proceed involves exercise, and as they all agree on that, everything else gets swamped, and any patient who either isn't helped, or refuses, alienates the whole team.

Possibly, probably, with the way things work, before any of the avenues that might have been worth trying are tried.

 

[rvallee]

Do we actually want multidisciplinary teams tho?

Or would specialists (in ME/PVFS/Log Covid) be preferable?

Loads of people with tiny bits of knowledge that might be relevant, all communicating with each other, inefficiently experience has shown, with loads of 'biases' that keep shoving us in to the wrong rabbit hole, or;

People who understand the whole condition, at least in broad strokes, with fewer inbuilt and damaging/dangerous (to patients) biases - who at least understand that trying to force patients into a particular hole, cutting off any bits in their histories, experiences or requirements, is a bad and damaging thing to do.

Hmmm....I can't help wonder what this obsession is with using teams of people, none of whom knows what they are doing, as otherwise the rest wouldn't be needed, rather than y'know, finding or training people to actually know what they are talking about.

It's not as if ME/PVFS and probably long covid was that complicated - simple minded thicko's like me deal with it every day - it should be possible for someone with medical training, a fully functioning brain, and without the pretty drastic limitations of a pwME, to understand - if they actually tried.

We're a bit burned by that because of the type of "teams" forced onto us but for most complex chronic diseases treatment and management does involve multiple specialties, especially for neurological diseases. It's a normal thing. The problem with us is that it's always the same team and none of those involved have anything to do with us and we typically see only one of them, or none.

 

[Jonathan Edwards]

for most complex chronic diseases treatment and management does involve multiple specialties, especially for neurological diseases. It's a normal thing.

I don't think this is the same as a multidisciplinary team though. Yes, an arthritis patient might need a surgeon or an occupational therapist. An MS patient might need a physiotherapist or a dietitian. But there is no problem with management by a physician who makes individual referrals when needed. The responsibility is then with the physician all the time.

The multidisciplinary team concept has crept in all areas of medicine and I think it is always pernicious. I have thought that since 1990. It means that nobody decides what should NOT be done. Everything is geared to keeping everyone busy. It is all about jobs for boys and girls. The only context I know where it makes sense is in early cancer management, where you want to have a radiologist, a surgeon, a radiotherapist, a physician in a meeting at the time of presentation to sort out options quickly.

 

[Milo]

It means that nobody decides what should NOT be done

Totally agree with you, and in my view it also means that everybody (the counsellor, the nurse, the naturopath, the physio and sometimes the doctor) decide what needs to be done, and it's devastating. It’s basically a relinquishment of responsibilities, either conscious or not.

This model of care suits the funders- because most of the actual ‘care’ is in the form of group education and therefore characterized as cost effective.

 

[chrisb]

It may be significant that I came across a reference to treatment by multidisciplinary team when reading about illness behaviour from the early 1980's. I had the distinct impression that this was how the idea was introduced into ME. Of course, if you have biopsychosocial illness you may require different specialties. If.

Typo. Either mine or the computer's.

 

[John Mac]

Opinion Coronavirus
America's healthcare system will struggle to deal with Covid 'long-haulers'
Jennifer Lutz and Richard Carmona

The US already has sky-high rates of chronic illness. Now comes a wave of Covid patients who never seem to fully recover

Post-viral fatigue syndrome (PVFS) isn’t new, but that won’t stop Covid “long-haul” syndrome from toppling an already unsteady medical system. The symptoms faced by so-called long-haulers – Covid patients who don’t seem to fully recover, even months after infection – can be debilitating. Understanding the similarity of long-haul syndrome to previous outbreaks (as well as the differences) should advise an incoming administration on the need for massive healthcare reform.
Post-viral fatigue syndrome has followed many viral outbreaks, such as the Spanish Flu of 1918, the 2002 SARS-CoV, the 2009 influenza, and the Ebola outbreak of 2014 – to name a few. PVFS is also frequently linked to Epstein-Barr virus (EBV), which can cause infectious mononucleosis (mono, sometimes called the “kissing disease”). Similar to Covid-19, EBV may present with no symptoms – especially in children – but it has been linked to the triggering of autoimmune disorders.
The threat of long-haul syndrome isn’t its novelty, but rather its history. Post-viral fatigue is often categorized with (and sometimes becomes) chronic fatigue syndrome (CFS), an illness that effects women at four times the rate as men and still eludes effective treatment. Current reports estimate that at least 10% of people reportedly infected with Covid-19 have gone on to develop long-haulers syndrome. As of Thanksgiving, the United States will have surpassed 12m cases of Covid. At 10%, we can anticipate a heavy addition to the already staggering rate of chronic illness in the US; if our healthcare system doesn’t adapt, it will likely fail.

My bolding

https://www.theguardian.com/comment...healthcare-system-coronavirus-covid-long-haul

 

[Robert 1973]

I’ve not managed to keep up with this thread or much else recently due to moving house, so apologies if this has already been posted, but I see that Layla Moran has secured a House of Commons debate on Long Covid on 7 January.



I’m wondering if those of us who live in the UK should be writing to our MPs to ask them to attend this debate and, if so, what issues we should be asking them to raise which may be helpful to people with ME.

@Gecko is this something MEAction UK are working on?

 

[Cheshire]

I'm a consultant in infectious diseases. 'Long Covid' is anything but a mild illness

Nine months on from the virus, I am seriously debilitated. This is how the new NHS clinics need to help thousands of us

Graded exercise, an approach that has been used to manage patients with other post-viral fatigue, wasn’t working; in fact it seemed to be detrimental and could leave me floored for days.

Hummmm, it doesn't work for "post viral-fatigue" either...

https://www.theguardian.com/comment...ild-illness-seriously-debilitated-new-clinics