US Gov website Health and Human Resources "Invisible Illness: Long COVID"

[SNT Gatchaman]

US Dept of Health and Human Services: https://www.hhs.gov/longcovid/index.html

Understanding Long COVID, Supporting Patients, Advancing Solutions

What Is Long COVID? Long COVID is a serious chronic disease that can affect multiple body systems and significantly disrupt daily life. Long COVID affects 5–7 % of U.S. adults—roughly 18 million people, according to the CDC. Long COVID remains an ongoing public health challenge requiring continued research, clinical innovation, and coordinated response.

Long COVID is a distinct and multisystem condition with its own drivers, risk factors, and clinical course. It affects all ages, regions, and communities.

There is currently no single FDA-approved diagnostic test for Long COVID. Diagnosis is based on clinical evaluation, and individuals do not need a documented positive SARS-CoV-2 test to receive a diagnosis. Symptoms can vary widely and may fluctuate or relapse over time, making diagnosis and long-term management complex. Long COVID contributes to reduced workforce participation, disability, and significant economic burden, with national costs estimated in the hundreds of billions of dollars annually.

Long COVID requires focused, condition-specific research and care that reflect its distinct biology and clinical course. Although some symptoms overlap with other infection-associated chronic conditions and illnesses (IACCIs)—such as Lyme disease, Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS), and other often “invisible” illnesses not readily apparent—similar presentations do not necessarily imply shared underlying mechanisms or treatments.

A new paradigm is needed to address complex chronic disease because fragmented, disease-by-disease, and organ-by-organ approaches are insufficient for understanding multisystem conditions like Long COVID. To overcome structural barriers—including siloed data, limited diagnostics, and inconsistent care pathways—HHS is advancing a disease-agnostic approach to strengthen data systems, clinical networks, and research infrastructure for invisible illnesses, accelerating measurable progress while preserving the distinctiveness and urgency of Long COVID.

 

[BrightCandle]

This might have been an OK start in 2020, its a reasonably vague description of the disease. But now there are concerning elements like throwing it in with other fatiguing diseases and a generic approach to them all and little in the way of details compared to what the science has found. This is a very long way away from what we should expect 6 years into this disease after the billion+ spent on its research a reset back to the basics is not a good sign at all. Badly need actions not a one page website that suggests an approach that is going to get people hurt.

 

[rvallee]

The US Surgeon General has announced the launch of a new long Covid hub

https://www.hhs.gov/longcovid/index.html

Still working on this piece! DM or email me if you would like to comment on the new HHS Long COVID site.

Betsy Ladyzhets write for the Sick Times, which does very good reporting on all things chronic illness. If someone wants to chip in.

 

[Hutan]

Long COVID requires focused, condition-specific research and care that reflect its distinct biology and clinical course. Although some symptoms overlap with other infection-associated chronic conditions and illnesses (IACCIs)—such as Lyme disease, Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS), and other often “invisible” illnesses not readily apparent—similar presentations do not necessarily imply shared underlying mechanisms or treatments.

A new paradigm is needed to address complex chronic disease because fragmented, disease-by-disease, and organ-by-organ approaches are insufficient for understanding multisystem conditions like Long COVID. To overcome structural barriers—including siloed data, limited diagnostics, and inconsistent care pathways—HHS is advancing a disease-agnostic approach to strengthen data systems, clinical networks, and research infrastructure for invisible illnesses, accelerating measurable progress while preserving the distinctiveness and urgency of Long COVID.

There's a lot about how distinctive Long COVID is. When in fact the WHO definition sweeps up all sorts of persisting symptoms after COVID-19.

It's as if people are allergic to admitting that one of the things that can happen after COVID-19 is ME/CFS. It's going to take us a lot longer to get anywhere is researchers continue to use the very wide definition (any persisting symptom) while also ignoring the fact that you can get to the same point with different illness triggers.

I can't really understand what they are saying in that quote. 'Don't worry, we know that you Long COVID people aren't like those ME/CFS and Lyme people'? but also 'We are going to look after all those complex chronic illnesses'?

 

[Trish]

HHS is advancing a disease-agnostic approach to strengthen data systems, clinical networks, and research infrastructure for invisible illnesses, accelerating measurable progress while preserving the distinctiveness and urgency of Long COVID.

What about the distinctiveness and urgency of ME/CFS of unknown trigger? We seem to be second class citizens yet again.

It's all urgent. Just some of it has been urgent for so much longer.

I welcome those with Covid induced ME/CFS to our ME/CFS community as equally in need of research and support.

Let's be equally deserving of urgency, not divisive.

 

[Jonathan Edwards]

It is not so much that a ne paradigm is needed as there being a need for people involved to ahev seom basic understanding of disease mechanisms and dynamics. This is all just the same muddle of words produced by people with no real idea what they mean by the words.