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

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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.
 
Mij said:
There wasn't internet when I applied for disability, and I can guarantee you that my doctor never wrote "brain fog" as a debilitating symptom on my application.
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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.
 
dave30th said:
I'm not sure how it first arose in connection with long covid.
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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.
 
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.
 
Arnie Pye said:
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.
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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.
 
Arnie Pye said:
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.
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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.
 
Mij said:
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.
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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 the term 'brain fog' might have started in the US; relating to CFIDS
eg
National CFIDS Association, 1(2), Fall 1997

Leaky Gut Syndrome
Just about every CFS/FM specialist that I have found prescribe special diets and nutritional supplements along with their favorite medical treatment. Since we have also read anecdotal reports from folks who have simply changed their diet and added nutritional supplements and have had significant lessening of "brainfog" and pain
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http://www.anapsid.org/cnd/diffdx/leakygut1.html

although I have found references to it for MS around the same time.
 
dave30th said:
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.
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As a child I used to get tonsillitis frequently. My temperature would sometimes rise to 104F. I have always found fairly high fevers like that would cause what I now describe in my old age as brain fog. Since that time I've had brain fog caused by other situations and the symptoms aren't always identical. But I'd still say I was suffering from brain fog.
 
Mithriel said:
A bit behind in my reading but flu was always considered to have a prolonged convalescence in some people. The common feeling in my working class family in the 50s/60s was that you should take things easy after flu so you recovered better. How this has been forgotten by educated people amazes me.
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I think the poor, the working class, and many women aren't trusted and never have been, and in recent decades this has been getting worse and worse. There is this stereotype that they (the poor, the working class and women) are always "yanking the chain", malingering, lying, attention-seeking, not trusted to tell the truth about their own health, are trying to pull a fast one, trying to get something for nothing, and trying to get out of work and are lazy.

I think very few people would be able to get a month off (in the UK) for flu, for example, no matter how bad the flu actually was.

I think all the BPS and FND stuff has these beliefs at the root of it, as do all the roadblocks put in the way of people getting benefits.
 
Arnie Pye said:
I think the poor, the working class, and many women aren't trusted and never have been, and in recent decades this has been getting worse and worse. There is this stereotype that they (the poor, the working class and women) are always "yanking the chain", malingering, lying, attention-seeking, not trusted to tell the truth about their own health, are trying to pull a fast one, trying to get something for nothing, and trying to get out of work and are lazy.

I think very few people would be able to get a month off (in the UK) for flu, for example, no matter how bad the flu actually was.

I think all the BPS and FND stuff has these beliefs at the root of it, as do all the roadblocks put in the way of people getting benefits.
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BPS is usually defined as the intersection of psychology and medicine but frankly it would be more accurate to say it is the intersection of politics and the outer fringes of medicine, the place where there be dragons.

Without this kind of gutter politics, usually built on the just world fallacy, none of this ever takes hold, those political beliefs predate and make the foundation of this ideology, it lives in newspaper headlines maligning "Cadillac-driving welfare queens" (the US version of it), or any variation in other countries.

You can even see it in most research, that the main goal, the only goal, is to keep costs down and to obsess with health care utilization, without any interest in understanding why it is even happening, the only certainty being that it shouldn't be happening. No coincidence, pure politics (and not even the good kind, good politics can do actual good, unlike this dystopian nightmare).
 
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