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

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Jonathan Edwards said:
But what does 'addressing' achieve? Is there any evidence that they know what to recommend? I don't actually believe that if your respiratory muscles are weak that doing 'exercises' will do anything useful. If those muscles needed to do more they would be told to do so involuntarily by the brain stem and strengthen if they could.

I may be wrong but does anyone have any evidence that they can do anything useful? My experience of physio as a rheumatologist was that it largely perpetuated the tradition of medicine of doing something for the sake of seeming to do something. The situation in children is different in some respects but in general physio is not evidence based.
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Just to agree with you - a relative, who was a psysio, told me that they had to contact Doctors regularly - why did you refer patient X what is the problem/why do you think they will benefit from psyio? Of course they knew that the real reason was that the Doctor wanted rid of patient X --- send them to psyio was a polite way to do that.
 
FMMM1 said:
Just to agree with you - a relative, who was a psysio, told me that they had to contact Doctors regularly - why did you refer patient X what is the problem/why do you think they will benefit from psyio? Of course they knew that the real reason was that the Doctor wanted rid of patient X --- send them to psyio was a polite way to do that.
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And I think its a similar dynamic of expedience which has kept PWME ignored and BPS snake oil peddlars in business.

Only its bureaucrats instead of doctors.

Bureaucrats tend to have many things going on they are trying to solve, especially the political even more so the ministerial varieties, they like to be able to declare a problem solved and stick a feather in their cap and move on to another problem. The prime consideration being whether everyone else will believe the problem has been solved and reelect them, or at least enough for a majority.

So for them its a question of convincing enough of the people enough of the time and for us its what they believe their electorate believe.

BPS proponents big themselves up as scientists (when they are nothing of the sort) to sell their snake oil to the decision maker bureaucrats who buy it because BPS uses prehistoric prejudices to sell a story the bureaucrats believe other people will believe.

It follows that while we need to show bureaucrats as decision makers why BPS is hokum, in order to finish the job we have to show rank and file why the prejudice inherent in BPS is not truthful.

That gets much easier when more of the population have longcovid because the reality it creates becomes a more common frame of reference.

The argument I always start with when trying to explain why BPS GET etc is wrong headed to non biologists is there is a reason athletes dont train with a virus.

This is usually recognised as truthful because it is and helps people think because it is counterintutive to BPS GET which is built on prejudice which echoes the idea that exercise makes you fitter, thankyou Gerada, which a football fan knows well enough is not always true.

This level of argument reveals that BPS GET advocates are incompetent, misguided and have no experience of the thing they pretend they are experts on and do not know enough to establish the difference between those who will benefit from exercise and those who will not which any concerned parent would realise was common sense as a necessary first step.

Just running with the ball there ;)
 
boolybooly said:
And I think its a similar dynamic of expedience which has kept PWME ignored and BPS snake oil peddlars in business.

Only its bureaucrats instead of doctors.

Bureaucrats tend to have many things going on they are trying to solve, especially the political even more so the ministerial varieties, they like to be able to declare a problem solved and stick a feather in their cap and move on to another problem. The prime consideration being whether everyone else will believe the problem has been solved and reelect them, or at least enough for a majority.

So for them its a question of convincing enough of the people enough of the time and for us its what they believe their electorate believe.

BPS proponents big themselves up as scientists (when they are nothing of the sort) to sell their snake oil to the decision maker bureaucrats who buy it because BPS uses prehistoric prejudices to sell a story the bureaucrats believe other people will believe.

It follows that while we need to show bureaucrats as decision makers why BPS is hokum, in order to finish the job we have to show rank and file why the prejudice inherent in BPS is not truthful.

That gets much easier when more of the population have longcovid because the reality it creates becomes a more common frame of reference.

The argument I always start with when trying to explain why BPS GET etc is wrong headed to non biologists is there is a reason athletes dont train with a virus.

This is usually recognised as truthful because it is and helps people think because it is counterintutive to BPS GET which is built on prejudice which echoes the idea that exercise makes you fitter, thankyou Gerada, which a football fan knows well enough is not always true.

This level of argument reveals that BPS GET advocates are incompetent, misguided and have no experience of the thing they pretend they are experts on and do not know enough to establish the difference between those who will benefit from exercise and those who will not which any concerned parent would realise was common sense as a necessary first step.

Just running with the ball there ;)
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I need to re-read this. I agree with what you are saying e.g. I work in policy and the approach is often to set out the great things our Minister/Department officials have done - even if they're talking s--t --- I've a Westminster Parliamentary Question drafted [thanks @Trish ] and submitted to my MP - I need to chase that up.

There's also a thing I'd considered re the Public Accounts Committee - NICE downgrading the assessment of PACE etc. publicly funded research.

So yes we can point out they're wasting money on smooth talking (useless) folks --- challenge that.

GWAS - Actimetry studies [ @Jonathan Edwards ]--- we need to highlight opportunities --- things we want funded
 
Some frustrating comments, e.g. not everyone recovers from a post viral syndrome within 2 years
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Long Covid

Prof Vaughan believes that the true extent of long Covid is unlikely to be fully understood for a number of years.

“The reality is that we don’t know just how ‘long’ the long-term effects will go on for. In the UK at the moment, hospitals are setting up special multidisciplinary clinics which are looking specifically at the aftereffects of the disease.”

The existence of a long-term post-viral syndrome is not something that should come as a surprise.

“When you look at glandular fever for example, a patient might pick up that infection at the age of 18 and he or she could suffer with chronic fatigue for up to two years afterwards.”

“We know that people who acquire an acute viral disease can have a sequelae that can go on for a very long period of time. Long-Covid, in my opinion, will prove to be a collection of disorders ranging from chronic fatigue to poor concentration and memory. Some people may suffer from deconditioning in terms of their ability to perform athletic feats.”
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https://www.breakingnews.ie/ireland...fronted-in-aftermath-of-covid-19-1122702.html
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Full paper has a section on ME/CFS:
https://aacnjournals.org/aacnacconline/article/doi/10.4037/aacnacc2021492/31445

ARTICLE| MAY 04 2021
Post-COVID-19 Syndrome: Theoretical Basis, Identification, and Management
Newly PublishedCE Article
https://doi.org/10.4037/aacnacc2021492

As COVID-19 continues to spread, with the United States surpassing 29 million cases, health care workers are beginning to see patients who have been infected with SARS-CoV-2 return seeking treatment for its longer-term physical and mental effects. The term long-haulers is used to identify patients who have not fully recovered from the illness after weeks or months. Although the acute symptoms of COVID-19 have been widely described, the longer-term effects are less well known because of the relatively short history of the pandemic. Symptoms may be due to persistent chronic inflammation (eg, fatigue), sequelae of organ damage (eg, pulmonary fibrosis, chronic kidney disease), and hospitalization and social isolation (eg, muscle wasting, malnutrition). Health care providers are instrumental in developing a comprehensive plan for identifying and managing post–COVID-19 complications. This article addresses the possible etiology of postviral syndromes and describes reported symptoms and suggested management of post-COVID syndrome.


long-haulers, post-COVID syndrome, symptom management
 
ME battle ‘must not be repeated with long Covid’, says chair of Cambridge support group

Great article in the Cambridge Independent where Dr Mark Harper, chair of the local ME support group shares his thoughts on several different topics, including long covid, GET, CBT and the current revision of the NICE guidelines, Michael Sharpe and George Monbiot, and so on.

“There are are discussions still taking place about the inclusion of CBT in any form in the new guidelines. CBT has still been included, not as a curative treatment which it was previously, now it’s supposed to help with psychological distress. However, we want CBT to be removed because the NHS has a few centres for treating ME. It’s clear that GET won’t be mentioned in the new guidelines, but even just the retention of the name ‘CBT’ means that people practising CBT and GET will be able to carry on.

“There’s got to be a complete elimination of the term, though I’ve nothing against CBT as it was previously used – as a way to avoid spiralling down into negativity.”​

Full article: https://www.cambridgeindependent.co...-repeated-with-long-covid-says-chair-9198471/
 
NPR: If Your Brain Feels Foggy And You're Tired All The Time, You're Not Alone

May 7, 2021, by Rhitu Chatterjee (4:30m; with transcript).

<< While some people who have had COVID-19 report brain fog and fatigue as lingering symptoms of their infection — what's known as long COVID — mental health care providers around the U.S. are hearing similar complaints from people who weren't infected by the virus. And many providers, like Cyrus, are feeling it themselves. This kind of mental fog is real and can have a few different causes. But at the root of it are the stress and trauma of the past year, say Cyrus and other mental health experts. It's a normal reaction to a very abnormal year. >>

Seems to me to be a shameless attempt to diminish the gravity of LC symptoms by conflating them with stress/anxiety/tension/grief/trauma/low-grade inflammation/fatigue/exhaustion/depression. If they can no longer convince people that ME/CFS/LC is one of those things then the next best thing is to dilute the problem by convincing as many people as they can that they are suffering the same things. No virus required!
 
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Wyva said:
ME battle ‘must not be repeated with long Covid’, says chair of Cambridge support group

Great article in the Cambridge Independent where Dr Mark Harper, chair of the local ME support group shares his thoughts on several different topics, including long covid, GET, CBT and the current revision of the NICE guidelines, Michael Sharpe and George Monbiot, and so on.

“There are are discussions still taking place about the inclusion of CBT in any form in the new guidelines. CBT has still been included, not as a curative treatment which it was previously, now it’s supposed to help with psychological distress. However, we want CBT to be removed because the NHS has a few centres for treating ME. It’s clear that GET won’t be mentioned in the new guidelines, but even just the retention of the name ‘CBT’ means that people practising CBT and GET will be able to carry on.

“There’s got to be a complete elimination of the term, though I’ve nothing against CBT as it was previously used – as a way to avoid spiralling down into negativity.”​

Full article: https://www.cambridgeindependent.co...-repeated-with-long-covid-says-chair-9198471/
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We got stuck with leaving CBT there for now to placate the zealots and save some faces, but long haulers have the opportunity to push for its removal and they should. There is no reason why it should be included anywhere as there is absolutely no need to change how anyone is thinking when it has nothing to do with the problem. Just support people, definitely don't neglect them, this is a fully manufactured problem that is best fixed by ending its manufacture to begin with.

There is no need to meet ideology in the midway point with science. That much should be clear. All this CBT stuff does is encourage people to do something for the sake of doing something no matter how useless and counterproductive it is. To hell with that.
 
Agree CBT is not appropriate as a first line of treatment, what new PWME or longcovid need is medical recognition/permission to respond appropriately to the condition which is more within the remit of medical diagnosis and advice on how to pace activity and manage life with the condition, which is occupational therapy.

CBT could be available as support for people who experience cognitive and behavioural difficulty adjusting to managing the condition and request psychological support, because it is quite a trauma to lose your vitality. It should not, can not, be rammed down people's throat, as patient volition is an important ethical and methodological prerequisite condition for engaging in CBT counselling, certainly the way MIND handle CBT, in my experience.

CBT without consent is brainwashing, like the reeducation camp regime inflicted on the Uighur. Which I mention to illustrate why it is appropriate and justified to oppose the non consensual CBT regime which BPS proponents are trying to impose on PWME/LC.
 
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Colin said:
NPR: If Your Brain Feels Foggy And You're Tired All The Time, You're Not Alone

May 7, 2021, by Rhitu Chatterjee (4:30m; with transcript).

<< While some people who have had COVID-19 report brain fog and fatigue as lingering symptoms of their infection — what's known as long COVID — mental health care providers around the U.S. are hearing similar complaints from people who weren't infected by the virus. And many providers, like Cyrus, are feeling it themselves. This kind of mental fog is real and can have a few different causes. But at the root of it are the stress and trauma of the past year, say Cyrus and other mental health experts. It's a normal reaction to a very abnormal year. >>

Seems to me to be a shameless attempt to diminish the gravity of LC symptoms by conflating them with stress/anxiety/tension/grief/trauma/low-grade inflammation/fatigue/exhaustion/depression. If they can no longer convince people that ME/CFS/LC is one of those things then the next best thing is to dilute the problem by convincing as many people as they can that they are suffering the same things. No virus required!
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They talk about brain fog but they do not define it anywhere. Years ago, one of the ME researchers in the US said that ME patients had similar problems as patients with AIDS dementia and the symptom should be called ME dementia. We also have deficits in working memory and a lack of concentration.

It is far from a normal reaction to stress and trauma both by the things that happen and by the degree of the problem.

On bad days I used to play a game with my young kids of "which way do we go to get home" because I couldn't remember.
 
There's a sympathetic long paywalled article about long covid in the UK today, in Sweden's third largest newspaper Svenska Dagbladet. (Only about the UK, it doesn't compare or contrast with long covid in Sweden.)

En miljon britter har postcovid: ”Sa att jag inbillade mig” ("One million Brits have postcovid: 'Said I was imagining things'")
https://www.svd.se/en-miljon-britter-har-postcovid-sa-att-jag-inbillade-mig

The article tells the story of a 31 year old woman in London, her personal experiences of getting covid (not hospitalised) and long covid, being disbelieved etc, and finally getting to see a pulmonologist and getting a (biomedical) treatment that seems to work. It also tells the story of one of the co-founders of Long Covid SOS. It references data and research studies, lists common symptoms of long covid. Has quotes from, among others, a professor of immunology and David Strain:
Auto-translate said:
David Strain is a doctor and lecturer at the University of Exeter. He has previously specialised in myalgic encephalomyelitis and chronic fatigue syndrome. In November, he himself fell ill with covid-19. It took him six weeks to regain enough energy to go back to work.

- It was difficult, I'm the kind of person who wants to get back to work as soon as possible," he tells SvD.

Now he can manage a normal working day, but can no longer exercise as before. He describes post-covid as having a low battery all the time.

- It never gets fully charged and for some people with postcovid, 15 minutes of activity can drain their energy completely.

David Strain still considers himself lucky. Many people with prolonged covid symptoms have it much worse than him. He has seen this at the clinic in the south-west of England where he and other therapists care for patients suffering from the condition.

- We don't yet know what postcoivd is. There are two or three different types. We have patients who were hospitalised and are recovering slowly. Then we have patients who were not very severely ill in covid-19, but who start having new symptoms two weeks or a month after they recover.

The symptoms affecting the second group are many and varied. Some are exhausted, others have what is called brain fog, some have severe pain, others have a high pulse.

- It seems to affect younger and healthy people more often, those who are not at risk of becoming seriously ill from covid-19. For them, it is a big deal to no longer be able to walk a mile when they used to be able to run a marathon.

There are many different theories about exactly what causes postcovid and now several research projects in the UK studying the disease. According to David Strain, the big challenge for doctors is that there is no map of how to treat postcovid.

- It's like chronic fatigue syndrome, where there hasn't been as much research as with other diseases. So we don't have the same tools as those who treat heart problems, for example.

Translated with www.DeepL.com/Translator (free version)
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(Edited to fix typos.)
 
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Mithriel said:
They talk about brain fog but they do not define it anywhere. Years ago, one of the ME researchers in the US said that ME patients had similar problems as patients with AIDS dementia and the symptom should be called ME dementia. We also have deficits in working memory and a lack of concentration.

It is far from a normal reaction to stress and trauma both by the things that happen and by the degree of the problem.

On bad days I used to play a game with my young kids of "which way do we go to get home" because I couldn't remember.
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Yes, it’s more like brain halt, or cognitive coma. But those are too disturbing to contemplate, so I stick to brain fog which sounds as if it just may clear without a trace left.
 
CBC Alberta physiotherapists inundated with long-haul COVID patients

The article doesn't mention ME, but has a 9 minute audio interview where ME is mentioned by Jessica DeMars, a respiratory physiotherapist. She also talks about Stop-Rest-Pace as an approach to Long Covid. She appears very up to date!

She is also interviewed in this segment where she talks about Long Covid and ME/CFS.
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Symptoms and Testing for COVID-19
https://academicworks.cuny.edu/cgi/viewcontent.cgi?article=2232&context=bb_pubs

In the long term, COVID causes:
- Organ system damage (heart, lungs, brain)
- Immune system dysfunction
- Development of post-viral conditions like Chronic Fatigue Syndrome
- Neurological issues (brain fog, Guillain Barre syndrome, confusion)
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Some patients make a full recovery, but for the “long-haulers”, symptoms may persist for months, years, or be lifelong. Some examples of this are CFS/ME, which is incurable, along with conditions like pulmonary fibrosis which cause permanent/irreversible scarring
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Leviner S, Recognizing the Clinical Sequelae of COVID-19 in Adults: COVID-19 Long-Haulers, The Journal for Nurse Practitioners (2021), doi: https://doi.org/10.1016/ j.nurpra.2021.05.003
https://www.npjournal.org/article/S1555-4155(21)00222-1/fulltext
The physical and psychological symptoms experienced by COVID-19 long-haulers are similar to
the symptoms survivors of sepsis or other critical illness experience when there is immune dysregulation.7
At this time it is unclear why symptoms persist. It is possible that the symptoms are the result of chronic
fatigue syndrome or myalgic encephalomyelitis, which has been associated with other viral infections.8
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SBU Sweden published their "inventory and prioritisation of postcovid research" today.

"By highlighting research questions that patients, researchers and those working in the field themselves prioritise, the aim is to draw attention to where research needs exist."

Inventering och prioritering av forskningsfrågor gällande långvariga symtom vid covid-19 (postcovid)
https://www.sbu.se/sv/publikationer...nde-langvariga-symtom-vid-covid-19-postcovid/

sbu.se auto-translate said:
Top 10 list of priority research questions on long-term symptoms in covid-19 (1 = highest ranked).
  1. What treatment helps with long-term neurological symptoms as well as cognitive symptoms (such as brain fatigue, memory difficulties, concentration difficulties, fatigue, numbness, tremor, headache) in covid-19?

  2. How can rehabilitation interventions be optimised for long-lasting symptoms of covid-19 and what types of interventions should be included (occupational therapy, physiotherapy, psychologist, counsellor, speech therapist, dietician, etc.)?

  3. What is the most effective treatment for long-term respiratory/oxygen uptake impairment or respiratory arrest problems in covid-19?

  4. What is the reason why some people develop long-term symptoms in covid-19?

  5. How can people with prolonged symptoms of covid-19 be objectively diagnosed, regardless of whether they had a positive PCR test during the acute phase or whether they have detectable antibodies?

  6. Could expanded diagnostics to investigate which organs are involved lead to better treatment and possibly prevent future complications for people with long-standing symptoms of covid-19?

  7. What are the underlying causes of different types of symptoms in people with long-standing symptoms of covid-19?

  8. What can be done in the acute course to prevent the development of long-term symptoms in covid-19?

  9. What are the clinical findings/organ changes after a long time in covid-19?

  10. Is the immune response (e.g. t-cell response, antibodies to covid-19, development of autoimmunity) different in people with long-lasting symptoms of covid-19?
Translated with www.DeepL.com/Translator (free version)
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mango said:
SBU Sweden published their "inventory and prioritisation of postcovid research" today.

"By highlighting research questions that patients, researchers and those working in the field themselves prioritise, the aim is to draw attention to where research needs exist."

Inventering och prioritering av forskningsfrågor gällande långvariga symtom vid covid-19 (postcovid)
https://www.sbu.se/sv/publikationer...nde-langvariga-symtom-vid-covid-19-postcovid/
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Is the list of priorities really in reverse order? How can finding treatments be priority #1 when we don't even understand the problem(s)? Followed by rehabilitation, same issue. Completely backwards. They're trying to work their way from the conclusions they want to achieve. This is not how complex problems are solved, this is how we work when we already understand enough, which is obviously not the case here.

Or maybe it's a pyramid where #1 is the outcome? Because you don't get to the top without first building the base. Nothing works like that. Ever.
 
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