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

https://twitter.com/user/status/1373694187837784067

Here's an awful opinion piece about the possible use of GET in LC. I can't possibly comprehend what compelled this person to lead in with the militant ME patient narrative, without providing the reader with the necessary nuance to contextualize these accusations. It just leaves the reader primed to adapt an anti-ME viewpoint, especially by espousing the view that the BPS brigade were "just trying to help", completely ignoring their massive COIs, and methodological issues. The article also belies a complete misunderstanding of the mechanics behind ME, and especially PEM, with some unnecessary dichotomization of exercise and activity, some good old evidence-via-clinical intuition, and a dash of toxic positivity to finish it all off. I'd like to go into further detail, but I can't right now. I'm sure someone else will have a field day with it, however.

 

Haven't read the article yet, but very convenient if there's something in the rumours about a GET trial for Long Covid. Noticed this reaction on twitter

ETA: I've read it now. Even though it doesn't seem he's promoting GET as progressive exercise despite deterioration, it's pretty annoying. This quote says it all where he's coming from:

- Cognitive priming is a well known and well researched phenomenon in which words, pictures, and conversations have been shown to enhance an individual’s perceived intensity of their symptoms and behaviours (ref, ref). The mechanisms of cognitive priming are complex and highly individual and are in no way meaning that an individual’s symptoms are not real or genuine, just that they can be affected and altered both positively or negatively by the information you receive and assimilate.

I know this only to well with my own feelings of fatigue, anxiety, and depression recently being massively affected based on the information I have read and conversations I have had to know priming affects us all in many ways. Again I want to stress and make crystal clear that I am in no way, at all, in any way, shape, or form, denying symptoms are real, or fake, or made up, just that they can be affected by what you see, hear and read. And at the moment there is a shit tonne of stuff on Long COVID everywhere.

 

The authors of the recent NYT Oped "Long Covid Is Not Rare. It's a Health Crisis", Fiona Lowenstein and Hannah Davis, were interviewed on ATC:

NPR.org: Months After Contracting Virus, 2 Women Suffer Crippling Effects Of 'Long COVID' (10:35m)

No mention of ME/CFS. Some discussion of similar, chronic illnesses:

 

https://www.irishtimes.com/news/ire...s-then-it-rears-its-ugly-head-again-1.4515930

No mention of ME or CFS, but there is this:

 

UK's National Institute of Health Research Community Twitter account posted

This week we're launching a new funding call for research on long COVID in non-hospitalised individuals: nihr.ac.uk/funding/long-c…

Code:

https://twitter.com/NIHRcommunity/status/1373947570414891009

https://twitter.com/user/status/1373947570414891009

 

https://twitter.com/user/status/1373750846450761729

 

"Executive summary

• Half of participants reported feeling not fully recovered from COVID-19 (median follow-up 7 months).
• Three quarters experienced fatigue, half were more breathless compared to before and around a quarter had a new disability in sight, walking, memory, self-care and/or communication.
• Outcomes were worse in working age females than males. Females under 50 were over five times more likely to report incomplete recovery, over five times more likely to report a new disability, more likely to have severe fatigue, and more than six times more likely to report increased breathless than males under 50.
• Participants who had required invasive ventilation were four times more likely to report an incomplete recovery compared to those who had not required supplementary oxygen."

 

A journalist from a national newspaper just contacted the Irish ME/CFS Association and wants to talk to somebody, which will be me unless something happens.

If anyone has any suggestions, feel free to throw them out or contact me directly:

 

I have not looked at this in great detail but I am sceptical about it providing much useful information. Most of the results are percentages of people with problems at follow up. But the responses only come from 15% of the cohort. Presumably responses are mostly from people with continuing problems so the figures don't seem to mean much.

It might seem that quite a lot of people are still suffering a lot even so. But then there is this weird statement:

Overall, participants reported a drop in quality of life of around a tenth (0.1 out of 1.0) assessed by EQ5D-5L

Most people would interpret that as meaning that people are 90% better. That doesn't;t sound too bad. I think the problem is that we are not given enough relevant detail.

And at the end of the day if you have had to be admitted to hospital with viral pneumonia it is not particularly surprising that you may still be feeling below par a few months later. Pneumonia is a big shock to the system.

 

We need to start thinking more critically — and speaking more cautiously — about long Covid

https://www.statnews.com/2021/03/22...re-critically-speaking-cautiously-long-covid/

Also discussed here:
https://www.s4me.info/threads/bps-attempts-at-psychologizing-longcovid.16013/page-29#post-334257

 

EDIT: Andy was ahead of me, lol

Here's another dodgy LC piece, this one more sophisticated in its psychologization of LC, and gaining quite a lot of traction, with an even split of MDs and anti-lockdown activists. The author has also been known to espouse CBT/GET for ME in the past, so you know where this is gonna go.

We've got the usual dichotomy of "vague and nonspecific" ME-like neuroimmune symptoms, and indubitably real conditions, like cardiomyopathies+lung fibrosis. Since "young, predominantly female, and only mildly ill" is not the demographic you'd expect to suffer long-term from COVID, we have to employ the psychosomatic God of the gaps to make sense of these phenomena. That's what critical thinking is all about, isn't it? Spurious extrapolations of cliches that go on to inform policy nonetheless.
MDs seem to have a hard time conceiving any biomedical pathology they can't easily see on medical imaging, or standard bloodwork. Which I find ironic, considering they're usually the first to point out how complex human physiology is, especially with respect to the mind-body connection, where common sense suddenly doesn't apply anymore.
I do agree that LC is not a very specific construct, and that causal inference is difficult when many of your purported LC sufferers haven't even tested positive for COVID, and that more robust study designs are required, but this sort rhetoric makes it far too easy to just write the whole thing off as an overhyped, insignificant phenomenon bordering on mass hysteria.

Fun times ahead, seeing LC patients run the same gauntlet that pwME have been enduring for ages.

 

From Post #3851

Following quote from PolyBio Research Foundation microbiologist Amy Proal

I notice from the above quote that there was no mention of "Women are very anxious" being challenged. When I consider my life of a) being a woman, and b) going to school and work with women and c) being seen by doctors while being female, the only people who consistently mention anxiety are doctors who find it makes their job easier to gaslight and dismiss women. The trope of "women are very anxious" needs to die - NOW! Just believe us, for heaven's sake! And then you may find anxiety levels actually decrease...

 

But also, any over-reaction to that sort of rhetoric can be counter-productive. In a lot of ways, that Stat piece doesn't really say much.

There are things about this pandemic that make it seem more likely than with most infections that 'psychosocial' problems could cause health problems that could be lumped in with 'Long Covid' stuff. It's not reasonable to assume that those without a positive covid test did not have C19, but I also see the problem with assuming that all those with negative tests but who think they're suffering from Long Covid are suffering from post-viral symptoms.

I think that there's a good chance that this is going to be a disastrous mess that's never properly sorted out.

 

just a logical thought there are many viruses and bacterial infections doing the rounds so a positive or negative test for just one set of antibodies is really not proof of anything . post viral fatigue can be caused by numerous viral infections so the psych bullshit wagon has no evidence as usual just inference .

 

Article in the New York Times about the study by the post-Covid clinic at Northwestern Memorial Hospital in Chicago, on non-hospitalized patients with lasting neurological symptoms.

They Had Mild Covid. Then Their Serious Symptoms Kicked In.

The study of 100 patients from 21 states, published on Tuesday in The Annals of Clinical and Translational Neurology, found that 85 percent of them experienced four or more neurological issues like brain fog, headaches, tingling, muscle pain and dizziness.

“We are seeing people who are really highly, highly functional individuals, used to multitasking all the time and being on top of their game, but, all of a sudden, it’s really a struggle for them,” said Dr. Igor J. Koralnik, the chief of neuro-infectious diseases and global neurology at Northwestern Medicine, who oversees the clinic and is the senior author of the study.

[...]

In the Northwestern study, many experienced symptoms that fluctuated or persisted for months. Most improved over time, but there was wide variation. “Some people after two months are 95 percent recovered, while some people after nine months are only 10 percent recovered,” said Dr. Koralnik. Five months after contracting the virus, patients estimated, they felt on average only 64 percent recovered.
​

An interesting part that could be related to the "mind-body dualism", except this time it's the opposite way than the one we're used to:

[Dr. Kathleen Bell, the chairwoman of the physical medicine and rehabilitation department at the University Texas Southwestern Medical Center] and Dr. Koralnik said many of the symptoms resembled those of people who had concussions or traumatic brain injuries or who had mental fogginess after chemotherapy.

In the case of Covid, Dr. Bell said, experts believe that the symptoms are caused by “an inflammatory reaction to the virus” that can affect the brain as well as the rest of the body. And it makes sense that some people experience multiple neurological symptoms simultaneously or in clusters, Dr. Bell said, because “there’s only so much real estate in the brain, and there’s a lot of overlap” in regions responsible for different brain functions.

“If you have inflammation disturbances,” she said, “you can very well have cognitive effects and things like emotional effects. It’s really hard to have one neurological problem without having multiple.”

Dr. Allison P. Navis, a neuro-infectious disease specialist at Mount Sinai Health System in New York City who was not involved in the study, said that about 75 percent of her 200 post-Covid patients were experiencing issues like “depression, anxiety, irritability or some mood symptoms.”
​

Some limitations of the study, and other symptoms:

In the Northwestern study, 43 percent of the patients had depression before having Covid-19; 16 percent had previous autoimmune diseases, the same percentage of patients who had previous lung disease or had struggled with insomnia.

Experts cautioned that because the study was relatively small, these pre-existing conditions might or might not be representative of all long-term patients. “We are all seeing very small pieces of the elephant in terms of the long Covid group,” Dr. Bell said. “Some of us are seeing tail; some of us are seeing trunk.”

Along with neurological symptoms, 85 percent of the patients were experiencing fatigue, and nearly half had shortness of breath. Some also had chest pain, gastrointestinal symptoms, variable heart rate or blood pressure. Nearly half of the participants were experiencing depression or anxiety.
​

ETA: the study: Graham, E.L., Clark, J.R., Orban, Z.S., Lim, P.H., Szymanski, A.L., Taylor, C., DiBiase, R.M., Jia, D.T., Balabanov, R., Ho, S.U., Batra, A., Liotta, E.M. and Koralnik, I.J. (2021), Persistent neurologic symptoms and cognitive dysfunction in non‐hospitalized Covid‐19 “long haulers”. Ann Clin Transl Neurol. Accepted Author Manuscript. https://doi.org/10.1002/acn3.51350

Objective
Most SARS‐CoV‐2‐infected individuals never require hospitalization. However, some develop prolonged symptoms. We sought to characterize the spectrum of neurologic manifestations in non‐hospitalized Covid‐19 “long haulers”.

Methods
This is a prospective study of the first 100 consecutive patients (50 SARS‐CoV‐2 laboratory‐positive and 50 laboratory‐negative individuals) presenting to our Neuro‐Covid‐19 clinic between May and November 2020. Due to early pandemic testing limitations, patients were included if they met Infectious Diseases Society of America symptoms of Covid‐19, were never hospitalized for pneumonia or hypoxemia and had neurologic symptoms lasting over 6 weeks. We recorded the frequency of neurologic symptoms and analyzed patient‐reported quality of life measures and standardized cognitive assessments.

Results
Mean age was 43.2±11.3 years, 70% were female and 48% were evaluated in televisits. The most frequent comorbidities were depression/anxiety (42%) and autoimmune disease (16%). The main neurologic manifestations were: “brain fog” (81%), headache (68%), numbness/tingling (60%), dysgeusia (59%), anosmia (55%), myalgias (55%), with only anosmia being more frequent in SARS‐CoV‐2+ than SARS‐CoV‐2‐ patients (37/50 [74%] vs (18/50 [36%]; p <0.001). Moreover, 85% also experienced fatigue. There was no correlation between time from disease onset and subjective impression of recovery. Both groups exhibited impaired quality of life in cognitive and fatigue domains. SARS‐CoV‐2+ patients performed worse in attention and working memory cognitive tasks compared to a demographic‐matched US population (T‐score 41.5 [37, 48.25] and 43 [37.5, 48.75], respectively; both p<0.01).

Interpretation
Non‐hospitalized Covid‐19 “long haulers” experience prominent and persistent “brain fog” and fatigue that affect their cognition and quality of life.​

 

That's probably because the average or a bit low functioning people cannot afford the exorbitant fees at your clinic, Dr Koralnik, or get fobbed off by their GP.

Hopeless trying to characterise the frequency of an illness or its features from a tertiary referral centre.

 

I didn't quote this part for the sake of brevity but Dr Navis did mention this issue:

Participants in the study were overwhelmingly white, and 70 percent were women. Dr. Navis and others said that the lack of diversity quite likely reflected the demographics of people able to seek care relatively early in the pandemic rather than the full spectrum of people affected by post-Covid neurological symptoms.

“Especially in New York City, the majority of patients who got sick with Covid are people of color and Medicaid patients, and that’s absolutely not the patients one sees at the post-Covid center,” Dr. Navis said. “The majority of patients are white, often they have private insurance, and I think we have to figure out a little bit more what’s going on there with those disparities — if it’s purely just a lack of access or are symptoms being dismissed in people of color or if it’s something else.”​

 

Probably more a feature coming from active people making that point about themselves while sedentary people don't mention it. People who were very fit at the time will mention it at every opportunity because they are accused of being lazy and/or deconditioned. Whereas people who were healthy but not very active do not.

Frequency bias is a problem at any level or scale. Should be easy to check by asking people about their fitness level before they were ill. My prediction would be a mostly normal distribution.

 

Inside a long Covid clinic: ’I look normal, but my body is breaking down’

Video:

It's trying (and failing) to embed the video when I simply paste the link so click here to access the video.