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

Also shared on my Twitter and Facebook accounts

 

The WHO has a training module. It says it's 3h for normies so could be a big long to follow it all.

https://openwho.org/courses/clinical-management-COVID-19-rehabilitation

Module 2 is about explaining the etiology of brain fog. I guess we missed the fact that medicine had done that. Module 3 is about deconditioning.

 

Studio Ett: Fler högpresterande kvinnor långtidssjuka i covid
https://sverigesradio.se/artikel/fler-hogpresterande-kvinnor-langtidssjuka-i-covid

Interview, 11 minutes (audio, in Swedish). They talk about symptoms, how she was first dismissed and (falsely) diagnosed with anxiety, what the long covid specialist clinics can offer, dysautonomia, autoimmunity, prognosis, etc. Worth a listen.

 

NIH launches database to track neurological symptoms associated with COVID-19

https://www.ninds.nih.gov/News-Even...Releases/NIH-launches-COVID-19-Neuro-Databank

A new database will collect information from clinicians about COVID-19-related neurological symptoms, complications, and outcomes as well as COVID-19 effects on pre-existing neurological conditions. The COVID-19 Neuro Databank/Biobank (NeuroCOVID), which was created and will be maintained by NYU Langone Health, New York City, will be a resource of clinical information as well as biospecimens from people of all ages who have experienced neurological problems associated with SARS-CoV-2 infection. The database is supported by the National Institutes of Health’s National Institute of Neurological Disorders and Stroke (NINDS).​

https://med.nyu.edu/departments-ins...stics/research/nih-neurodatabank-neurobiobank

 

Thanks for sharing, @mango

I wonder why they emphasised that "high-performing" women in particular are developing long Covid.

The medical specialist, Judith Bruchfeld, hypothesised that the reason for the large portion of women in this patient group, might be a possible autoimmune mechanism. She said nothing about the length of the patient's education, personality or way of life.

The patient, Emma, states clearly that she initially was dismissed with anxiety, and it was only due to her being resourceful and living in Stockholm that she eventually was able to find doctors who would actually examine her.

Assuming that those patients who are able to find their way to the few doctors who are able to help, are representative for the whole patient group, might turn out to be quite a blind spot.

 

Another possibility is that "high-performing" women are more visible. Don't know but it can often be a matter of where one looks that determines what one finds.

ETA: I see further down your post after the part I quoted seems to be the same idea as this.

 

ie people with enough money to go doctor shopping actually find doctors interested in taking their money having significant funds = high performing .

 

Yes, there's bound to be significant bias. People with fewer resources, be they financial, social or cognitive ones, simply won't get diagnosed.

But I also think patients, including the charities, inadvertently feed this obsession with "high-performing". When we first fall ill we're so shocked at what we can't do any more, and so desperate to make other people understand the severity of our affliction, that we stress all the things we used to be able to do easily and now can't. Plus we're afraid of being called lazy because that would immediately place us in the undeserving parasite on society category so we really stress what busy lives we used to lead. Next thing we get hit with the "perfectionist A-type" stick. Damned if we do and damned if we don't.

 

Long Covid: Why Recovering From Covid-19 Is a Feminist Issue

https://www.womenshealthmag.com/uk/health/female-health/a35263039/long-covid-feminist-issue/

 

https://www.who.int/news-room/featu...low-dose-anticoagulants-for-covid-19-patients


Post copied to the WHO thread
https://www.s4me.info/threads/news-...-cfs-long-covid-and-related-conditions.16426/

 

I assume this will lead to a story. Look at all those "MUS"es and "FND"s, at least according to their definitions. Does not seem to give anyone pause, it's all so easy to say that for some it's medically explained and for others it isn't based simply on a positive test. Talk about having strong beliefs about illness.

https://twitter.com/user/status/1354100890387537920

 

https://twitter.com/user/status/1354717975371247618

https://www.youtube.com/watch?v=wbLiJYTYTaQ

ETA: Then Fauci goes on to say:
People get upset when you say that. I'm not saying that it is myalgic encephalitis (sic), but the constellation of symptoms that are unexplainable are quite similar.

And then he goes on to talk about how to proceed with research

 

https://www.insideedition.com/drew-...g-symptoms-i-am-forced-to-lie-down-every-hour


Drew Pinsky Among COVID-19 ‘Long Haulers’ With Lingering Symptoms: ‘I Am Forced to Lie Down Every Hour or Two'

 

STAT News Denied Treatment, some Covid long-haulers could become lifelong-haulers

For most long-haulers, the illness is neither fatal nor curable. Their symptoms, like Michael’s, can resemble chronic fatigue syndrome or myalgic encephalomyelitis with crushing exhaustion, migraines, disrupted sleep patterns, and pain. Others have lung scarring or heart damage.

Originally written off by the medical community, doctors now recognize it with a variety of terms, such as post-acute Covid, chronic Covid, long Covid, or post-Covid syndrome. Long-haulers are more descriptive in their labels. I’ve heard it referred to as “a Dementor sucking my soul,” “living death,” and “an internal prison.”

 

https://www.theguardian.com/society...ng-covid-symptoms-to-those-of-ebola-survivors

 

Just read that Guardian article myself – the final paragraphs stuck me too:

But if there’s another lesson to be learned from Chikungunya, it is that these patients with lasting symptoms can’t simply be ignored. “Chikungunya is destroying the Brazilian health service, and it’s not so much because of the acute infection, but because of these lasting health problems,” said Altmann.

“I’m not sure our policymakers have this on board when they think about long Covid – that we may not just be talking about getting through this winter or this spring, but perhaps 300,000 people in the UK and rising, who have a chronic problem.”