Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop, 2022

Wyva

Senior Member (Voting Rights)
Contributor(s): National Academies of Sciences, Engineering, and Medicine; Health and Medicine Division; Board on Health Care Services; Laura Aiuppa Denning and Erin Hammers Forstag, Rapporteurs

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'Long COVID' refers to the wide range of long-lasting symptoms experienced by some patients after a SARS-CoV-2 infection. The most common symptoms include fatigue, headache, brain fog, shortness of breath, hair loss, and pain. At this time, there are many knowledge gaps related to Long COVID, including the prevalence of the condition, the impact of the symptoms on survivors' ability to function, and the long-term course of the condition. While many individuals with Long COVID recover within one year, others experience little or no decrease in symptom severity over time.

Long COVID symptoms can affect a person's ability to work and otherwise function in daily life, so people with the condition may need to utilize programs such as Social Security Disability Insurance (SSDI) and the Supplemental Security Income Program (SSI). The Social Security Administration (SSA), which administers both of these programs, requested that the National Academies of Sciences, Engineering, and Medicine host a public workshop to discuss research into the long-term health effects of COVID-19, their impacts on individuals and populations, and how the SSDI and SSI programs can support individuals who suffer disability as a result of Long COVID. This publication summarizes the presentation and discussion of the workshop.

Open access: https://nap.nationalacademies.org/c...xamining-long-term-health-effects-of-covid-19
 
There's good stuff:
Recognition of similarity to ME/CFS, even if it's not made explicit, and mention of PEM:
The severity of the symptoms experienced by some patients with Long COVID is similar to the severity of symptoms experienced by patients with other disabling conditions, including postural orthostatic tachycardia syndrome (POTS), myalgic encephalomyelitis/chronic fatigue syndrome, and small fiber neuropathy.
Musculoskeletal disease and symptoms, fatigue, post-exertional malaise, and pain often persist for at least 6 months following acute COVID-19.

Recognition of the need for training - although there's inconsistent talk of Long Covid as a diagnosable entity while at the same time using it to mean anything from post-ICU issues, mental health issues arising from Covid-19 experiences, lung damage, and ME/CFS:
Many clinicians lack an understanding of Long COVID. Variety and variability of symptoms make it challenging to recognize and diagnose Long COVID. Education and training are needed to help clinicians diagnose Long COVID and deliver appropriate patient care.

Recognition of the need to take post-covid conditions seriously, and pointing to biological causes e.g.
Patient health and well-being can be compromised when their symptoms are not taken seriously, or are misdiagnosed, by medical professionals.


And there's quite a lot of problems, partly the result of "Long Covid" covering all sorts of post-covid issues:
COVID-19 infection is associated with the exacerbation of and new-onset psychiatric disorders, including mood, anxiety, and trauma-related disorders, as well as sleep disturbances.
Pandemic-related factors can place COVID-19 patients who were in the ICU at greater risk for physical, cognitive, or mental health impairments; limitations on activity; or restrictions on social participation, and thus be at higher risk of long-term disability.
Identification of family stressors (e.g., financial, housing, employment, safety, social isolation) and availability of support systems may provide emotional and logistical support and guide medical therapies.


Of course if you are talking about all manner of problems, then all manner of solutions seem reasonable e.g. exercise. There is no warning against exercise in the summary:
Few COVID-19-specific therapeutic options exist, so treatments for Long COVID symptoms are based on what is known about related conditions, for example, asthma or POTS

And there's the potential mixing up of people's frustration and anger at the situation they find themselves in as mood-disorders, and the writing off of symptoms as 'trauma-related' that paradoxically contributes to the trauma
Cognitive, mood, and trauma-related symptoms were common among survivors of past coronavirus outbreaks, and nearly a quarter of survivors had not returned to work 3 year post-illness.

"Deeks" looks to be a major problem, whoever they are. They got a lot of air-time in the summary, saying a lot of things that are tremendously harmful and misleading
Deeks warned that excessive testing can be harmful, as it can lead “down various rabbit holes.”

The goal of Long COVID treatment is to improve the patient’s quality of life, and a holistic approach is helpful for meeting this aim, observed Deeks. He listed some of the commonly used therapies, including compression stockings, physical therapy, pacing of activities, flexibility and strength exercises, and medications. There are medications for specific diagnoses (e.g., selective serotonin reuptake inhibitors for depression), and some clinicians prescribe other medications off-label (e.g., antivirals, intravenous immunoglobulin). Deeks said that a multidisciplinary, team-based approach for treatment is critical, as it can simultaneously address physical issues, mental health issues, social support, and rehabilitation. In addition, these types of clinics can validate the experiences of patients, help them cope with uncertainty, and help them access financial and other types of support.

Looks like a lot of work yet to do by patient advocates.
 
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"Deeks" looks to be a major problem, whoever they are. They got a lot of air-time in the summary, saying a lot of things that are tremendously harmful and misleading

Possibly Steven Deeks, MD, University of California, San Francisco & Zuckerberg San Francisco General Hospital as he was part of the committee for this.
Long-Term Health Effects Stemming from COVID-19 and Implications for the Social Security Administration: A Workshop, https://www.nationalacademies.org/e...the-social-security-administration-a-workshop
 
There's good stuff:
Recognition of similarity to ME/CFS, even if it's not made explicit, and mention of PEM:



Recognition of the need for training - although there's inconsistent talk of Long Covid as a diagnosable entity while at the same time using it to mean anything from post-ICU issues, mental health issues arising from Covid-19 experiences, lung damage, and ME/CFS:


Recognition of the need to take post-covid conditions seriously, and pointing to biological causes e.g.



And there's quite a lot of problems, partly the result of "Long Covid" covering all sorts of post-covid issues:





Of course if you are talking about all manner of problems, then all manner of solutions seem reasonable e.g. exercise. There is no warning against exercise in the summary:


And there's the potential mixing up of people's frustration and anger at the situation they find themselves in as mood-disorders, and the writing off of symptoms as 'trauma-related' that paradoxically contributes to the trauma


"Deeks" looks to be a major problem, whoever they are. They got a lot of air-time in the summary, saying a lot of things that are tremendously harmful and misleading


Looks like a lot of work yet to do by patient advocates.

Thank you for this @Hutan.

Re the "holistic approach" noted in the article, it seems like just a lot of words to bulk up the impression of effective treatment.

A very familiar tune.
 
Contributor(s): National Academies of Sciences, Engineering, and Medicine; Health and Medicine Division; Board on Health Care Services; Laura Aiuppa Denning and Erin Hammers Forstag, Rapporteurs

--

'Long COVID' refers to the wide range of long-lasting symptoms experienced by some patients after a SARS-CoV-2 infection. The most common symptoms include fatigue, headache, brain fog, shortness of breath, hair loss, and pain. At this time, there are many knowledge gaps related to Long COVID, including the prevalence of the condition, the impact of the symptoms on survivors' ability to function, and the long-term course of the condition. While many individuals with Long COVID recover within one year, others experience little or no decrease in symptom severity over time.

Long COVID symptoms can affect a person's ability to work and otherwise function in daily life, so people with the condition may need to utilize programs such as Social Security Disability Insurance (SSDI) and the Supplemental Security Income Program (SSI). The Social Security Administration (SSA), which administers both of these programs, requested that the National Academies of Sciences, Engineering, and Medicine host a public workshop to discuss research into the long-term health effects of COVID-19, their impacts on individuals and populations, and how the SSDI and SSI programs can support individuals who suffer disability as a result of Long COVID. This publication summarizes the presentation and discussion of the workshop.

Open access: https://nap.nationalacademies.org/c...xamining-long-term-health-effects-of-covid-19

Interesting re "hair loss" as a symptom with LC. I believe hair loss has been noted as a ME symptom. Early on with ME I experienced this.

Untreated anemia, and untreated hypothyroidism can also cause hair loss.
 
And there's the potential mixing up of people's frustration and anger at the situation they find themselves in as mood-disorders, and the writing off of symptoms as 'trauma-related' that paradoxically contributes to the trauma
They do indeed appear blind to the very real secondary psychosocial trauma their unproven speculation about primary psychosocial trauma may be creating and/or perpetuating.
 
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