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

[Hoopoe]

On Twitter someone pointed me to this Danish preprint which found that 16% of patients reported fatigue and 13% concentration difficulties 12 weeks after COVID-19 infection. Acute and persistent symptoms in non-hospitalized PCR-confirmed COVID-19 patients (medrxiv.org)

RT-PCR tests have varying reliability. For example their sensitivity depends on time passed since infection onset.

Over the 4 days of infection before the typical time of symptom onset (day 5), the probability of a false-negative result in an infected person decreases from 100% (95% CI, 100% to 100%) on day 1 to 67% (CI, 27% to 94%) on day 4. On the day of symptom onset, the median false-negative rate was 38% (CI, 18% to 65%). This decreased to 20% (CI, 12% to 30%) on day 8 (3 days after symptom onset) then began to increase again, from 21% (CI, 13% to 31%) on day 9 to 66% (CI, 54% to 77%) on day 21.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7240870/

It's also possible that the tests are especially unreliable for long covid patients because their expression of the illness is not the reference for which the tests and testing guidelines were developed.

 

[ME/CFS Skeptic]

I don't quite see why patients who will later go on to develop long covid or ME/CFS after COVID-19, would have much higher rates of false negatives on PCR testing?

 

[Kalliope]

Yahoo!life : A COVID-19 long-hauler details his year of 'hell'
Senior Editor Ed Hornick got ill with Covid-19 over 10 months ago and shares his story. Mentions ME a couple of places.

I've wondered why Yahoo!life has had some rather good, in depth articles on Long Covid.

Doctors have seen striking similarities between the symptoms of long COVID and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) — though they caution that further research is needed.

For its part, the CDC says in a blurb on its website that it is working to better understand long COVID and ME/CFS.

But doctors like Anthony Komaroff, a physician at Brigham and Women’s Hospital in Boston, expect to see “an increase that could generate as many new [ME/CFS] cases over the next two to three years as exist already in the U.S.”

The medical community also sees parallels between long COVID and other viral illnesses, including severe acute respiratory syndrome (SARS), Middle East respiratory syndrome (MERS) and Ebola.

Throughout history, conditions such as lupus, Lyme disease, ME/CFS, Dysautonomia, fibromyalgia, epilepsy, and scleroderma were initially dismissed by doctors as mysterious or even as a form of hysteria. Further research, though, would later prove the severity of these chronic illnesses.

“We discovered the biological basis of diseases such as epilepsy and dystonia, to name a few, which had been called ‘hysteria’ for centuries,” Dr. Avindra Nath, clinical director of the National Institute of Neurological Disorders and Stroke at the National Institutes of Health, notes. “Long-Haul COVID is our calling and we should take the lead.”

Chronic illness sufferers can certainly sympathize with the moment long-haulers find themselves in.

 

[Hoopoe]

I don't quite see why patients who will later go on to develop long covid or ME/CFS after COVID-19, would have much higher rates of false negatives on PCR testing?

I can see how it could easily happen in various ways, but it's a bit complicated to explain and some speculation is involved. It has a lot to do with systematic bias and nonuniformity of the illness.

The idea is that covid-19 is expressed differently in every person, depending on factors such as age, gender, immune response profiles, and others. A good example is that in children it's often quite different than in 50 year olds. But we discovered that only later because society first pays attention to the more obvious expressions of covid-19. We saw that early in the pandemic, covid-19 was presented as a respiratory disease in older people. Then we became aware it was also a problem in younger people. Then we discovered it in kids where it was very different than in adults. We also became aware of long covid and many of these patients and it appears that these are often more impaired months after a mild illness than people months after a severe illness.

If guidelines for doctors are written with the "severe illness, hospitalized patient" patient in mind (a form of bias), that could lead to many people with initially mild illness to not seek or be offered tests with the same urgency as other patients. That could in turn affect test positivity rates, for example via differences in the timing of testing which as we've seen is crucial in RT-PCR tests.

Tests are also being developed with a reference patient population and it may quite likely be a sample of predominantly a 40-60 year old men with acute and severe illness who were hospitalized. Test sensitivity may decrease the more a person falls outside this patient population. Some of the data mentioned earlier suggests this.

(there is more but I don't want to mentally exert myself more at the moment)

 

[Sly Saint]

don't know if this has already been posted

 

[ME/CFS Skeptic]

(there is more but I don't want to mentally exert myself more at the moment)

Thanks for explaining it (although I'm not very convinced by the explanation)

 

[Snow Leopard]

What areas of research would you like to see progressed @Snow Leopard ? [maybe that's an existing thread?]

Also, maybe we should have a thread which looks at the pitfalls (plenty from previous experience) and what advice would we give to research commissioners? As well as the current NIH grants, that might also come in useful in an EU context [Horizon Europe] @Michiel Tack

I doubt they are going to listen.

But I'd suggest a creative look at vascular and endothelial function, particularly peripheral muscular (and brain) capillaries. And I don't mean a superficial look that claims everything is fine because they haven't found obvious (severe damage)* or nothing is wrong when looking at a small subset of inflammatory markers or cytokines. *(it turns out the people with severe vascular damage often die, who would have known?)

In terms of the virus itself, researchers need to look beyond the superficial - it is more than the presence of ACE2 receptors that predicts lesions in a particular type of tissue. Similarly, measuring inflammatory markers in circulation tells us very little about what is going on in specific tissue.

 

[Dolphin]

 

[FMMM1]

I doubt they are going to listen.

But I'd suggest a creative look at vascular and endothelial function, particularly peripheral muscular (and brain) capillaries. And I don't mean a superficial look that claims everything is fine because they haven't found obvious (severe damage)* or nothing is wrong when looking at a small subset of inflammatory markers or cytokines. *(it turns out the people with severe vascular damage often die, who would have known?)

In terms of the virus itself, researchers need to look beyond the superficial - it is more than the presence of ACE2 receptors that predicts lesions in a particular type of tissue. Similarly, measuring inflammatory markers in circulation tells us very little about what is going on in specific tissue.

There should be some mechanism for the patient community to input into the policy re funding research. E.g. in this case to highlight the previous (negative) experience and how things should be done now.

Your suggestion re "vascular and endothelial function, particularly peripheral muscular (and brain) capillaries" sounds interesting. I would have thought there would have been some research into this e.g. re vascular dementia. What techniques are used --- are new techniques required or are the existing techniques (MRI ---)/technologies suitable?

@Michiel Tack

 

[Andy]

Interesting discussion. The HIV Disability Questionnaire was mentioned as an example of something that is capable of capturing fluctuating and intermittent symptoms (like PEM). I don't suppose anybody has access to that, and can let me see it, or point me to a link? @PhysiosforME ?

 

[dave30th]

Yesterday I read that antibody tests have low sensitivity in women.

lower. they were 79% sensitive in men. So it's different, but not bigly, as a former president used to say.

 

[rvallee]

Interesting discussion. The HIV Disability Questionnaire was mentioned as an example of something that is capable of capturing fluctuating and intermittent symptoms (like PEM). I don't suppose anybody has access to that, and can let me see it, or point me to a link? @PhysiosforME ?

From overviews it appears interesting but because, I guess reasons, it's copyrighted so it's hard to assess. Most health questionnaires are copyrighted. And cannot be accessed because of said copyright. Normal things. The incentive system in medicine is completely broken, essentially built for maximal paralysis.

https://research.mcmaster.ca/industry-and-investors/hiv-disability-questionnaire-hdq/

 

[Dolphin]

From overviews it appears interesting but because, I guess reasons, it's copyrighted so it's hard to assess. Most health questionnaires are copyrighted. And cannot be accessed because of said copyright. Normal things. The incentive system in medicine is completely broken, essentially built for maximal paralysis.

https://research.mcmaster.ca/industry-and-investors/hiv-disability-questionnaire-hdq/

With a bit of work, I’ve managed to get many if not most questionnaires I wanted. Basically, when they are discussed often a sample question or two is mentioned. Putting strings into Google often results in either the questionnaire or more sample questions. Often the full questionnaire turns up in the appendices of a thesis.

 

[FMMM1]

Interesting discussion. The HIV Disability Questionnaire was mentioned as an example of something that is capable of capturing fluctuating and intermittent symptoms (like PEM). I don't suppose anybody has access to that, and can let me see it, or point me to a link? @PhysiosforME ?

Bear in mind @Andy that there's a review of questionnaires versus activity monitors (it's available somewhere on this site) and it found questionnaires overestimated activity; the activity monitors used were pretty sophisticated [time spent upright etc.]. This publication might be interesting if it compared the questionnaires with activity monitors, but I doubt it did.

Plagurising @Jonathan Edwards again:
"Subjective measures as listed are important to the patient but they are of no value as evidence. Outcomes of value would include actimetry, walking times, return to work, level of benefit requirements, NOT questionnaires."
[https://www.s4me.info/threads/membe...e-cfs-guidelines-draft-scope.4816/#post-86637]

Possibly there wasn't enough funding to use high quality actimetry [time spent upright etc.]. However, even if they didn't have much funding, I recall a US Army study (post conflict veterans) which used data from their mobile phones --- GPS to see if they are moving around etc. I guess. So there may be basic workarounds for studies which don't have a lot of funding [Fitbits?].

The other thing is that if the study is flawed, i.e. doesn't have objective measures, then I think it shouldn't be published - there's low confidence that the conclusions are correct.

 

[FMMM1]

I doubt they are going to listen.

But I'd suggest a creative look at vascular and endothelial function, particularly peripheral muscular (and brain) capillaries. And I don't mean a superficial look that claims everything is fine because they haven't found obvious (severe damage)* or nothing is wrong when looking at a small subset of inflammatory markers or cytokines. *(it turns out the people with severe vascular damage often die, who would have known?)

In terms of the virus itself, researchers need to look beyond the superficial - it is more than the presence of ACE2 receptors that predicts lesions in a particular type of tissue. Similarly, measuring inflammatory markers in circulation tells us very little about what is going on in specific tissue.

Excuse me coming back to this @Snow Leopard I'm thinking of the interests of the ME/CFS community here! Do you think:
"---vascular and endothelial function, particularly peripheral muscular (and brain) capillaries ---" would be useful for ME/CFS?

 

[Andy]

Bear in mind @Andy that there's a review of questionnaires versus activity monitors (it's available somewhere on this site) and it found questionnaires overestimated activity; the activity monitors used were pretty sophisticated [time spent upright etc.]. This publication might be interesting if it compared the questionnaires with activity monitors, but I doubt it did.

Plagurising @Jonathan Edwards again:
"Subjective measures as listed are important to the patient but they are of no value as evidence. Outcomes of value would include actimetry, walking times, return to work, level of benefit requirements, NOT questionnaires."
[https://www.s4me.info/threads/membe...e-cfs-guidelines-draft-scope.4816/#post-86637]

Possibly there wasn't enough funding to use high quality actimetry [time spent upright etc.]. However, even if they didn't have much funding, I recall a US Army study (post conflict veterans) which used data from their mobile phones --- GPS to see if they are moving around etc. I guess. So there may be basic workarounds for studies which don't have a lot of funding [Fitbits?].

The other thing is that if the study is flawed, i.e. doesn't have objective measures, then I think it shouldn't be published - there's low confidence that the conclusions are correct.

While I don't disagree, my interest is less in its potential use in a research study and more for its possible potential in helping to identify fluctuating and intermittent symptoms for clinical and/or disability assessment settings.

 

[adambeyoncelowe]

If anyone gets hold of the HDQ, please let me know.

 

[Andy]

Covid-19: Recognise long covid as occupational disease and compensate frontline workers, say MPs

MPs have stepped up pressure on ministers to recognise “long covid” as an occupational disease and to compensate frontline health and other key workers living with its “debilitating” effects.

The proposal by the All Party Parliamentary Group on Coronavirus has won the backing of 65 MPs and peers, as well as the BMA.1

Layla Moran, a Liberal Democrat MP who chairs the group, said that “heroes of the pandemic” who contracted covid-19 while serving the public should be eligible for regular monthly compensation payments. “These are the people who saved our lives, quite literally . . . and it’s only right we save their livelihoods,” she told the BBC’s Today programme on 18 February.

Chaand Nagpaul, the BMA’s council chair, commented, “The dedication and selflessness shown by healthcare workers over the last year, and the debt of gratitude owed to them, cannot be underestimated.”

About one in 10 people with covid-19 continue to experience symptoms beyond 12 weeks. Long covid can present with clusters of symptoms that are often overlapping and fluctuating, including breathlessness, headaches, cough, fatigue, and cognitive impairment.

https://www.bmj.com/content/372/bmj.n503

 

[Sean]

As far as I am aware it is simply a way of getting back to normal when you are well enough to do so.

This.

I will make a prediction: If there is ever a genuine cure for ME we will see the vast majority of patients quickly become active and engaged again, with no intervention or 'management' needed from 'experts'. It will happen more-or-less naturally.

There will, of course, be an almighty anger and grief to deal with. But it will happen.

What will become undeniable in that situation, is how well patients were actually managing their situation pre-cure, in highly adverse and even hostile conditions.

Plagurising @Jonathan Edwards again:
"Subjective measures as listed are important to the patient but they are of no value as evidence. Outcomes of value would include actimetry, walking times, return to work, level of benefit requirements, NOT questionnaires."
[https://www.s4me.info/threads/membe...e-cfs-guidelines-draft-scope.4816/#post-86637]

Subjective measures are evidence, just not about treatment efficacy. What they are measuring is how much people can be manipulated to improve their scoring on subjective measures, independent of objective results, and hence how problematic and potentially misleading subjective measures are.

 

[MSEsperanza]

If anyone gets hold of the HDQ, please let me know.

A short attack of severe hubris gave me the idea to "just write a quick e-mail" to the contact given on the website found by @rvallee: https://research.mcmaster.ca/industry-and-investors/hiv-disability-questionnaire-hdq/

To

Spoiler: e-mail address

kelly.obrien@utoronto.ca

Re: Access to HIV Disability Questionnaire (HDQ) for members of a patient led ME/CFS internet forum (internal use only)

On a serious note, why not ask them to provide the HDQ to patient stakeholders and members of a NICE guideline committee?