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

UK: Parliamentary hearing on long Covid and the need for it to be recognised as an occupational disease.

This took place today and is available on YouTube

Code:

https://youtu.be/XK5Jz4Yqr8A

https://www.youtube.com/watch?v=XK5Jz4Yqr8A

Lucibee was presumably watching it and has tweeted some selected quotes, including this

and the APPG for Long Covid account tweeted this

 

Do you have cases with severely affected LC people comparable with very severe ME? (completely bedbound, extreme sensitivity to light, sound, touch etc.)?

 

I remember someone with LC in my own group who was completely bedbound first but then improved a lot. I saw some people who said walking is way too much for them. I don't know how common this is, it may not be. But when I came down with post-viral fatigue after glandular fever, I spent a lot of time on a gf forum and I remember reading everything but never commenting, because I didn't have the cognitive energy. People more severely affected may be less communicative and seemingly less present, who knows. Time will tell. But in general, this seems to be rare in the group.

I haven't really seen people with sensory sensitivites but I think Scheibenbogen's recent study of people with LC mentioned that they found some people with that.

Edit: From that study:

https://www.medrxiv.org/content/10.1101/2021.02.06.21249256v1

 

The so-called experts plumbing even greater depths of ignorance.

Astonishing.

 

https://twitter.com/user/status/1369281709867495431

 

how quickly they forget.........
Yuppie Flu?

 

California Health Online - For Covid 'Long Haulers,' Battling for Disability Benefits Adds Aggravation to Exhaustion by David Tuller

Quote from the article:

Given the lack of testing in the first months, many “long haulers,” like Andersen, have no laboratory proof of infection. While antibody tests can provide such evidence, their accuracy varies. Moreover, many of the reported symptoms, including fatigue and cognitive impairment, are subjective and not clearly linked to specific organ damage.

Beyond that, compiling a thorough record for a disability application and navigating the bureaucratic hurdles require sustained brain power, something many long-haul patients can no longer muster. Barbara Comerford, a New Jersey disability lawyer, said she received dozens of inquiries starting last fall from long haulers seeking advice on filing for disability and often citing what is being called “brain fog” as their main complaint.

 

Many ‘Long Covid’ Patients Had No Symptoms From Their Initial Infection

https://www.nytimes.com/2021/03/08/health/long-covid-asymptomatic.html

An analysis of electronic medical records in California found that 32 percent started with asymptomatic infections but reported troubling aftereffects weeks and months later.

...

Unlike some recent surveys, like one by a patient-led research team, the new study did not capture one of the most commonly reported “long Covid” issues: cognitive problems like brain fog, memory problems and difficult concentrating. One of the co-authors, Natalie Lambert, an associate research professor at Indiana University School of Medicine, said that may be because at the time, doctors may not have known to include diagnostic codes for such cognitive issues in the medical records of Covid patients. The team is seeking funding for a larger and more comprehensive study that combines information in medical records, doctors’ notes and patients’ reports, she said.​

I'm not entirely sure this is reliable, considering that most neurological symptoms patients report are simply dismissed and never go into medical records. In a neurological disease this is especially problematic. But, hey, the patients suffering from those have only been saying so for decades...

It's very likely that many of those patients did have symptoms that were simply not accepted by the physician who did the consult. The dangers of GIGO medicine when everything is interpreted at the first point of contact and symptoms are considered meaningless other than as a guide to decide what diagnosis to make.

 

Well, I don't think she's saying they use "brain fog" on the application. She said that's what people tell her first when they call her to discuss things. "Brain fog" emerged early in the pandemic last year as the expression being used. I'm not sure how it first arose in connection with long covid.

 

We’re facing a tidal wave of COVID-related disability cases, and we’re not ready

https://www.latimes.com/business/story/2021-03-08/covid-related-disability-claims-coming

Even then, the guidelines required months or even years of evidence from licensed doctors, sometimes supplemented with testimony from family members or former employers. As many as 75% of those diagnosed with the condition are “unable to work or attend school regularly,” however, according to medical studies.

“The system is designed to reject people,” says Matthew Cortland, a Massachusetts-based disability attorney and policy analyst. “It’s not designed to catch everyone who is disabled and in need of help. It is a fundamentally adversarial system.”​

The paragraphs above are about the US disability system but are pretty much universal features in every country.

 

Patient forums. Quite early, even. Same with PEM, it was openly discussed within the first few weeks. Most of it borrowed from the chronic illness community, of course. When medicine fails to even give a name to something, people will. And medicine still hasn't bothered doing that so not much choice but to use brain fog as there is literally no other meaningful term.

 

Cognitive impairment.

 

I always find it very strange that many, many healthy people don't understand brain fog at all. And yet as soon as someone gets brain fog for the first time they have absolutely no difficulty in understanding what they have. I realise that the symptoms of brain fog might differ from person to person, but the difficulty in thinking is very recognisable.

 

I've never experienced it in the way people describe, so I'm one of those. I understand what people are saying, but I don't have a visceral grasp of what it feels like beyond the descriptions.

 

This.

This has always been one of my worst symptoms and I've found brain fog to be such a good description from the beginning too. Interestingly, even in Hungary I saw some people with LC use the Hungarian version of the expression, which has a somewhat weird ring to it in this language, yet some covid long haulers are still happy to use it here too.

 

My healthy sister uses 'brain fog' to describe how she feels after she eats carbs. I don't think brain fog is recognized as a medical condition.

I'm concerned about using the term PEM as a fatigue-like state after overdoing.

 

Lately I've often seen brain fog being used as a synonym for "mom brain" too, meaning being forgetful, absent-minded, extremely sensitive/experiencing extreme emotionality...

I, too, am concerned that PEM is losing its original meaning

 

I think I have this sometimes.

 

I think the term 'brain fog' might have started in the US; relating to CFIDS
eg

http://www.anapsid.org/cnd/diffdx/leakygut1.html

although I have found references to it for MS around the same time.