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

[chrisb]

This is all most unfair. It must be rememberd that patients are not to be regarded as adults , to be given an accuate assessment of their condition to the best knowledge, information and belief of the practitioner, or should that be High Priest. To give them the information might hinder the recovery. It was ever thus. Withhold diagosis to speed recovery. We know it works.

And who cares about informed consent?

I suppose this is all to do with the "sickness role" which we would all so eagerly adopt, given half a chance.

 

[Andy]

As they're told to exercise despite crippling fatigue, and advised they should banish 'negative thoughts'...No wonder doctors think their long Covid treatment is misguided
https://www.dailymail.co.uk/health/...-told-exercise-despite-crippling-fatigue.html

I spoke to Jerome Burn (the author) before Christmas and wasn't aware that he'd finally got something published until I stumbled across this shared on Twitter. Not sure I remember saying exactly what he has quoted, and there are certainly some other details that I would query i.e.

What patient surveys have repeatedly found is that 'pacing' — where they exercise within their comfort levels — is much more helpful. One survey of more than 1,400 patients, published in the Journal of Health Psychology in 2017, found that 44 per cent reported an improvement in symptoms when 'pacing' while exercising, compared with 12 per cent for GET.

If only it was about exercising within our comfort levels.

 

[Snow Leopard]

As they're told to exercise despite crippling fatigue, and advised they should banish 'negative thoughts'...No wonder doctors think their long Covid treatment is misguided
https://www.dailymail.co.uk/health/...-told-exercise-despite-crippling-fatigue.html

There is an interesting comment from Dr David Strain about microcirculation.

I also found this: https://thebiomedicalscientist.net/science/what-long-covid

“When we think about the blood supply, we tend to think about the bigger vessels,” he says. “They’re effectively the motorways of the body. But my focus has always been on the cul-de-sacs – the bits that get you from the motorway to your house. That’s the bit of the body I have always been interested in and we were working on this hypothesis that chronic fatigue syndrome was caused by a lack of perfusion in those vessels to the muscles and other tissues, which resulted in the muscle weakness and general tiredness and lethargy that we see.

“It has also been very well characterised that our patients with COVID got lots of damage to their small blood vessels. We saw a lot of very small blood clots alongside the more evident problems of kidney failure, the pulmonary strokes and so on. So we rapidly realised that a number of patients were being racked by some sort of chronic fatigue syndrome.”

This is the first I have heard of David Strain and this research. (University of Exeter Medical School)

Edit - upon Google searching, it seems @Dolphin commented something similar (post #2081) about hearing of this researcher for the first time. I can't many other details however.

 

[Kalliope]

Apologies if this has already been shared, as it was published yesterday.

What a great article!

Patient activists had been warning that GET was 'ineffective and could be deeply damaging to patients since 2007, when the previous guidelines came out', says Andy Devereux-Cooke, co-founder of online group Science For ME.


Daily Mail: Long Covid Patients are too to exercise despite crippling fatigue

ETA: @Andy had already shared it a few posts above. Didn't realise it was the same article

 

[Kalliope]

The Guardian - Many 'long Covid' sufferers unable to work six months later

“This is a chapter that has not yet been written in the medical textbooks, and barely any major research papers yet published. Part of the progress here is simply inputting large numbers and stats to the existing anecdotal sense of what’s been happening, while aspects feel really quite novel. Nobody can address the condition until we’re better able to narrate what’s happening,” said Danny Altmann, a professor of immunology at Imperial College London.

The analysis was limited to respondents with illnesses lasting longer than 28 days, whose onset of symptoms occurred before June 2020, allowing examination of symptoms over an average six months’ duration.

Roughly 65% of respondents (2,454) reported experiencing symptoms for at least six months. The most likely symptoms to persist after six months included fatigue, post-exertional malaise, cognitive dysfunction (“brain fog”), neurological sensations, headaches, memory problems, insomnia, muscle aches, palpitations, shortness of breath, dizziness/balance issues, and speech and language problems.

Nearly 86% of respondents experienced relapses, most commonly triggered by physical activity, stress, exercise and mental activity.

 

[lunarainbows]

Have people with long covid been reporting any sort of sensory issues such as difficulty with movement (even themselves moving around), difficulty with other people, light, sound etc? do they get dizziness, vertigo, pain? Have any of them starting requiring carers? Is it mostly brain fog, post exertional fatigue / malaise? I’m just curious as to what symptoms people with long covid have, and how severe it has gotten.

@rvallee i wonder if you might know, since you’ve been keeping an eye on things

Edit: sorry didn’t see @Kalliope’s post above. So they do report dizziness and pain. But I wonder about the other things I mentioned?

 

[lunarainbows]

“We hope these patients are going to recover - but there’s no timescale. We’ve never treated anything like it before.

“We’re trying not to compare it to chronic fatigue or ME because this could be something purely Covid-related.”

Why are they unable to see the similarities to ME/CFS? Is it genuinely because they think ME is just tiredness? I don’t get it.

 

[Sly Saint]

Yorkshire Fatigue Clinic
Post viral fatigue COVID-19
https://nohc.ie/wp-content/uploads/2020/04/Post-viral-fatigue-COVID19-YFC2020-4-pg.pdf

 

[Gecko]

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?

Sorry for slow reply, been attempting to remain off duty over the break. Unfortunately this isn't something we've had capacity to advocate around due to work on NICE, and the UK volunteer team isn't back until the 11th, but I would strongly support all individuals who can email their MP about this to do so.

 

[Esther12]

The Guardian - Many 'long Covid' sufferers unable to work six months later

“There may be differences in terms of … those with confirmed infection and those without,” said Dr Tim Nicholson, who is part of a multidisciplinary team at King’s College hospital setting up NHS-funded clinics for long Covid.

Exactly the sort of person I wouldn't want involved in this.

 

[rvallee]

Have people with long covid been reporting any sort of sensory issues such as difficulty with movement (even themselves moving around), difficulty with other people, light, sound etc? do they get dizziness, vertigo, pain? Have any of them starting requiring carers? Is it mostly brain fog, post exertional fatigue / malaise? I’m just curious as to what symptoms people with long covid have, and how severe it has gotten.

@rvallee i wonder if you might know, since you’ve been keeping an eye on things

Edit: sorry didn’t see @Kalliope’s post above. So they do report dizziness and pain. But I wonder about the other things I mentioned?

Yes to all of this, in roughly the same proportions as ME it seems. The severe end is relatively rare but seems about as disabling. Some have short episodes of this, sometimes relapses because they had good days. Some have been mostly stuck in this place for weeks and months. Growing despair from the more severe cases, it's really tragic to see it all happening with medicine committing to all the worst mistakes.

 

[rvallee]

Exactly the sort of person I wouldn't want involved in this.

Ooof. You can say that again.

He runs a specialist clinic for Functional Neurological Disorder (FND) at the Maudsley Hospital.

He did his PhD, funded by the UK Medical Research Council (MRC), in FND looking at the role of stressful life events that might precipitate episodes of paralysis and used other methods such as neuroimaging (both structural and functional MRI scans) and neuropsychological testing to investigate the possible mechanisms of FND

Not sure how this fits in with stressful life events, whatever that means:

He continues to be interested in the biological basis of FND symptoms and neuropschiatric disorders more broadly, especially especially autoimmune causes of psychiatric symptoms.

 

[FMMM1]

There is an interesting comment from Dr David Strain about microcirculation.

I also found this: https://thebiomedicalscientist.net/science/what-long-covid



This is the first I have heard of David Strain and this research. (University of Exeter Medical School)

Edit - upon Google searching, it seems @Dolphin commented something similar (post #2081) about hearing of this researcher for the first time. I can't many other details however.

Is there a simple way to measure perfusion "we were working on this hypothesis that chronic fatigue syndrome was caused by a lack of perfusion in those vessels to the muscles and other tissues"? Did the results turn up anything?

 

[Ravn]

I also found this: https://thebiomedicalscientist.net/science/what-long-covid

This is the first I have heard of David Strain and this research. (University of Exeter Medical School)
Edit - upon Google searching, it seems @Dolphin commented something similar (post #2081) about hearing of this researcher for the first time.

New (at least to me) biomedical researchers always welcome!

I was already looking at doing some research into chronic fatigue syndrome, particularly at the associated muscle wasting, which is much like the muscle wasting we see in older people.”

Muscle wasting? In the bedbound, sure. Though whether it's a consequence of the disease or of being immobile is another question.

But in general, beyond what you'd expect from being sedentary, is muscle wasting a thing in ME? My own experience is that, if anything, my muscles seem to be remarkably resistant to wasting, despite my diligent practice of extreme sedentarism over many years.

Strain’s pre-COVID research interest focused on the microcirculation in the human body’s tiniest blood vessels, which are responsible for delivering all the necessary oxygen and nutrients to the muscles [...] we were working on this hypothesis that chronic fatigue syndrome was caused by a lack of perfusion in those vessels to the muscles and other tissues, which resulted in the muscle weakness and general tiredness and lethargy that we see.

Microcirculation does seem to be messed up in many pwME - but again, cause or consequence? Or part of a vicious circle, initially simply a consequence but then becoming a perpetuating factor? Worth looking into, might at least lead to some symptomatic treatment.

Strain is now working with a group of geneticists in a bid to determine what genetic make-up might predispose somebody to suffer from long COVID.

Does he know about DecodeME?

 

[Amw66]

New (at least to me) biomedical researchers always welcome!

Muscle wasting? In the bedbound, sure. Though whether it's a consequence of the disease or of being immobile is another question.

But in general, beyond what you'd expect from being sedentary, is muscle wasting a thing in ME? My own experience is that, if anything, my muscles seem to be remarkably resistant to wasting, despite my diligent practice of extreme sedentarism over many years.

Microcirculation does seem to be messed up in many pwME - but again, cause or consequence? Or part of a vicious circle, initially simply a consequence but then becoming a perpetuating factor? Worth looking into, might at least lead to some symptomatic treatment.

Does he know about DecodeME?

Muscle wasting here and not completely bed bound. Also muscles very tight/ tend to spasm.

My daughter seems to be in a catabolic state. It may be that she is running on aminos as some research suggests happens more with being female/ malabsorption issues.

 

[Snow Leopard]

Microcirculation does seem to be messed up in many pwME - but again, cause or consequence? Or part of a vicious circle, initially simply a consequence but then becoming a perpetuating factor? Worth looking into, might at least lead to some symptomatic treatment.

It's very high up on my list of hypotheses (in part due to a process of elimination of other factors).
That is why I'm curious to see what their experimental hypothesis is!

 

[leokitten]

It's very high up on my list of hypotheses (in part due to a process of elimination of other factors).
That is why I'm curious to see what their experimental hypothesis is!

I’ve wondered if ME doctors would do a trial of drugs like pentoxifylline or cilostazol (normally for peripheral artery disease), especially pentoxifylline as it has some potent anti-inflammatory and immunodulating properties. They are both generic and cheap drugs too.

 

[leokitten]

I’ve wondered if ME doctors would do a trial of drugs like pentoxifylline or cilostazol (normally for peripheral artery disease), especially pentoxifylline as it has some potent anti-inflammatory and immunodulating properties.

I know this is getting off topic, but a description of pentoxifylline properties:

Here is a description of the mechanisms of action https://www.ncbi.nlm.nih.gov/books/NBK559096/

Given it’s anti-inflammatory and immunomodulating properties it also improves red blood cell deformability and blood viscosity. Ron Davis and co published that paper on reduced blood cell deformability in ME/CFS

Red blood cell deformability is diminished in patients with Chronic Fatigue Syndrome

@Jonathan Edwards what do you think about pentoxifylline?

 

[Jonathan Edwards]

@Jonathan Edwards what do you think about pentoxifylline?

Pentoxifylline has been around since about 1980 and has always had a reputation for being a drug that does a little bit of everything and a lot of nothing. It has been handed out in desperations to millions of people over the years. If it had any major role in something like ME someone would have noticed thirty years ago.

 

[Hoopoe]

Does cold water immersion have merit as treatment for poor microcirculation?