National Academies: New Report Reviews Evidence on Long COVID Diagnosis, Risk, Symptoms, and Functional Impact for Patients 2024

STAT News: "‘Concern is real’ about long Covid’s impact on Americans and disability claims, report says"

'The SSA has not yet said what it will do with the report’s conclusions. The agency is in the process of updating its long Covid guidance'

"Making for an even greater diagnostic challenge, long Covid has many similarities to an array of other complex chronic conditions. Patients share similarities to those with ME/CFS, fibromyalgia, POTS, post-treatment Lyme disease and hypermobile Ehlers-Danlos syndrome. On average scientific literature finds 40% – 70% of long Covid patients meet the criteria for ME/CFS, though rates vary depending on the disease definition that is used. And up to 39% meet the criteria for fibromyalgia (which itself is often confused with other diseases and disorders)."

"Long Covid’s chameleonic nature poses a challenge to the Social Security Administration, which determines whether people are so disabled by their condition that they can’t work. The agency has a listing of conditions and impairments that are considered severe enough to interrupt someone’s working life. Long Covid isn’t on the list. Neither are conditions like ME/CFS or fibromyalgia."

 

News Release | June 11, 2024

WASHINGTON — A new National Academies of Sciences, Engineering, and Medicine report says the federal government, state and local authorities, clinicians, medical societies and organizations, public health practitioners, employers, educators, and others should adopt a new definition for “Long COVID” — that it is an infection-associated chronic condition that occurs after COVID-19 infection and is present for at least three months as a continuous, relapsing and remitting, or progressive disease state that affects one or more organ systems.

• single or multiple symptoms, such as shortness of breath, cough, persistent fatigue, post-exertional malaise, difficulty concentrating, memory changes, recurring headache, lightheadedness, fast heart rate, sleep disturbance, problems with taste or smell, bloating, constipation, and diarrhea.
• Single or multiple diagnosable conditions, such as interstitial lung disease and hypoxemia, cardiovascular disease and arrhythmias, cognitive impairment, mood disorders, anxiety, migraine, stroke, blood clots, chronic kidney disease, postural orthostatic tachycardia syndrome (POTS) and other forms of dysautonomia, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), mast cell activation syndrome (MCAS), fibromyalgia, connective tissue diseases, hyperlipidemia, diabetes, and autoimmune disorders such as lupus, rheumatoid arthritis, and Sjögren’s syndrome.

LINK

 

I'm seeing a few mentions of how there's now an "official definition" of LC, but aside from a few details, this is basically the same rough definition that the patient community has been using all along. For sure it doesn't add anything that couldn't have been done before. So that's odd.

The Sick Times are asking for comments about it:

https://twitter.com/user/status/1800686433113620567

 

Medpage Today
Opinion piece by Leonard Jason, PhD

Here's What is Wrong With the National Academies' Long COVID Definition

quotes:

- Here is the problem: a person can meet these proposed long COVID criteria by merely having one symptom that is not a burden to the person or does not have any negative impact on the person's functioning.

...

- ...the authors note that their recommendation may need to be "updated in no more than 3 years' time." But the last time (2015) the National Academies made a recommendation for a reconvening of the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) case definition group within 5 years, it never occurred. Given this track record of failure to reconvene and reassess, will a similar fate occur with long COVID?

That 2015 National Academies report also made the unfortunate recommendation to have almost no exclusionary illnesses for ME/CFS, and as a result of this broadened criteria, prevalence rates are estimated to have increased 2.8 times. Furthermore, while the new ME/CFS case definition was designed to be used for clinical purposes, it is now used for research purpose This can lead to inclusion of trial participants who may not actually have ME/CFS, skewing research findings. We can expect a similar pattern to occur with the newly proposed long COVID case definition.