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

[rvallee]

Another one in the "not helping, buddy" pile.


NHS GP says long COVID patients “shouldn’t suffer in silence”
https://www.openaccessgovernment.or...d-patients-shouldnt-suffer-in-silence/117815/


Most annoying is the premise written in the article that there is already loads of help. Then to perfectly symbolize how there is no actual help, it lists 3 things:

1. Smell training, which has no evidence but is widely used
2. Mental health support
3. Mental health support

Yes, they listed 3 items but the premise is so detached from reality that they used the same argument twice, and had to grasp at straws by pointing at something that doesn't have any evidence yet. Clearly unaware that this has ineffectively been the standard of care that is completely useless.

So medicine is literally unable to deal with not easily finding the first clue. It just faceplants and stays there. Or maybe it's just the obsessive need for psychosomatics to be real that they can't handle following the evidence and would rather not break the delusion, since they will never bother with the consequences anyway.

 

[chrisb]

Well there would have to be three things wouldn't there? It is stylistic convention.

 

[5vforest]

lol, I would sacrifice my senses of smell and taste for a single day without my other symptoms.

 

[Kalliope]

Great twitter thread from The Times. The article looks very good, but is paywalled..

 

[Kalliope]

Great twitter thread from The Times. The article looks very good, but is paywalled..

Continues:

 

[Skycloud]

Great twitter thread from The Times. The article looks very good, but is paywalled..

This article is currently available to read via Apple News service on my iPad. It appeared that it might be the full article (no paywall) but I can’t be certain. People with Apple devices could try there. It’s good. Sean O’Neil again.

 

[Art Vandelay]

This is a very good quote from the latter of the Times articles:

“A huge amount of money is going into long Covid clinics, but they aren’t helping because they don’t really know what they’re doing. There has been so little research into post-viral medicine that they really are all at sea.”

 

[Kalliope]

BMJ Editorials Long covid clinic should be run as research hubs
by Margaret McCartney and Richard Byng

- Post-covid syndrome is unlikely to be a single entity and will vary according to whether people required invasive hospital treatment. There is probably a spectrum of underlying pathology, including self-limiting inflammation and damage to specific organs, continued viral presence, the sequelae of intensive care admission, autoimmune responses, and more general disruption of immune, inflammatory, endocrine, and neurological systems (comparisons have been made with chronic fatigue syndrome (CFS/ME)).3 Perspective is gained by considering what we know about recovery and rehabilitation after other serious infectious illnesses and our knowledge about the harms and benefits of diagnosis, treatment, and multidisciplinary teams.
...

- Comparison between post-covid syndrome and CFS/ME is difficult as studies of CFS/ME commonly start with populations who have had symptoms for many months or years, but most show low rates of recovery.8

 

[Kalliope]

No mention of ME/CFS, but seems to be a thorough article (have just skimmed it)

National Geographic How does COVID-19 affect the brain? A troubling picture emerges.

- In the U.S. alone, millions of people have developed lasting cognitive and neurological problems long after an initial COVID-19 infection. Some of these patients may be permanently disabled and need long-term care. “My concern is that we're going to have huge numbers of the population who aren't able to function at their cognitive baseline. They can't go back to work, or at least not to what they did before,” Frontera says. “We haven’t even thought of the long-term implications. It could be an incredible blow to the economy.”

Davis says the scariest part about COVID-19’s cognitive effects is that people of all ages and health status are affected. “This is something everyone is at risk for, and it's completely debilitating.”

 

[Kalliope]

Dr. Jarvis was on BBC Breakfast today, talking about long covid and ME:

 

[Kalliope]

Dr. Jarvis was on BBC Breakfast today, talking about long covid and ME:

Clip here:

 

[Trish]

Apart from supporting the setting up of long covid clinics with multi disciplinary teams and mention of 'rehabilitation' this short clip gives no indication of what Dr Jarvis thinks will be done at the clinics and why she thinks 'rehabilitation' is possible or effective.

 

[rvallee]

Not from a LC clinic but referred to by a LC clinic.

 

[rvallee]

Let's be frank here, those clinics and "rehab" programs are mostly placebo for physicians. They do not provide a service to patients, they provide a service to the health care system. They learn nothing and are completely stuck in a loop, systematically crediting themselves for simply being there while some people recover naturally and unable to process that they are useless.


‘They worry they will never get better’: a day in Bolton’s long Covid clinic
https://www.theguardian.com/society...g-covid-pilot-clinic-breightmet-health-centre

 

[Andy]

Let's be frank here, those clinics and "rehab" programs are mostly placebo for physicians. They do not provide a service to patients, they provide a service to the health care system. They learn nothing and are completely stuck in a loop, systematically crediting themselves for simply being there while some people recover naturally and unable to process that they are useless.


‘They worry they will never get better’: a day in Bolton’s long Covid clinic
https://www.theguardian.com/society...g-covid-pilot-clinic-breightmet-health-centre

"Extreme fatigue – both physical and cognitive – was the most common symptom, and the pilot showed it could be improved with changes to diet and exercise as well as a regular stretching programme. The most complicated cases were referred to a consultant who specialises in chronic fatigue."

 

[Ariel]

‘They worry they will never get better’

We will certainly never stop being patronized.

 

[chrisb]

‘They worry they will never get better’

It makes one wonder how they characterise people who have a wholly unrealistic expectation of recovery. Presumably that is OK.

 

[Mij]

 

[rvallee]

Let's be frank here, those clinics and "rehab" programs are mostly placebo for physicians. They do not provide a service to patients, they provide a service to the health care system. They learn nothing and are completely stuck in a loop, systematically crediting themselves for simply being there while some people recover naturally and unable to process that they are useless.


‘They worry they will never get better’: a day in Bolton’s long Covid clinic
https://www.theguardian.com/society...g-covid-pilot-clinic-breightmet-health-centre

A participant in what they call a "pilot", which I guess is language to work around the fact that they are not rigorous, so not a formal study, but have no evidence that this is of any use and probably planned to roll it into a service from the start:

 

[Simbindi]

Apart from supporting the setting up of long covid clinics with multi disciplinary teams and mention of 'rehabilitation' this short clip gives no indication of what Dr Jarvis thinks will be done at the clinics and why she thinks 'rehabilitation' is possible or effective.

From what I've heard of her on various radio programmes she does seem to understand how severely ME patients can be affected and comes across as sympathetic and caring, but she still conveys that it is a condition that can be 'rehabilitated' or naturally improves over time. She never explains it can end up a life long condition lasting decades (as opposed to years). I wish doctors like her would explain the self-limiting natural of most post viral illness and how this is different to long term ME/CFS.