By David Tuller, DrPH
Failure to address Long COVID in Australian Aboriginal communities
Croakey Health Media is a small but feisty Australian news outlet that covers social and structural inequities in healthcare. Croakey recently published “a call for action to address Long COVID in Aboriginal communities,” which focused in particular on the situation in the Northern Territory (NT). The NT, the largely rural state that occupies the vast northeastern sector of the continent. is home to many Aboriginals. (The call to action was written by Dr Andrew Nguyen, the public health registrar and infectious diseases physician at the Aboriginal Medical Services Alliance Northern Territory.)
Here’s a key section:
“Long COVID remains under-recognised, under-diagnosed and under-resourced. And nowhere is that more evident – or more concerning – than in the Northern Territory.
“In a recent briefing to NT health practitioners, I emphasised that we simply do not know the true burden of long COVID among Aboriginal people.
“This knowledge gap is not because long COVID is rare – it isn’t.
“Relevant diagnostic tests help assess severity and ruling out other causes, but the reality of remoteness means that some of these tests are not as accessible as they are in metro areas.
“The NT remains the only jurisdiction that has never established a dedicated long COVID clinic or services. Without diagnostic access, conditions remain invisible. Without visibility, there is no data. And without data, it is difficult to respond.
“This is a clear example of how structural inequity in healthcare access directly shapes disease burden in Aboriginal communities, where the diagnostic challenge is even greater.”
You can read the whole article here.
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Tips on filing disability claims for ME/CFS and Long COVID
Miriam Tucker, an experienced medical journalist, has written an excellent and helpful article for Medscape titled “How to Help with ME/CFS and Long COVID Disability Claims”—one of three that Tucker has written for the news organization after a virtual conference held in October by the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis.
The latest piece, which covered a presentation from a Florida disability attorney, Edward Dabdoub, noted that “detailed notes, objective testing, and legal assistance if necessary” are key to successfully obtain gdisability benefits in cases involving ME/CFS and Long COVID. Here’s an excerpt:
“‘When someone is struggling from a disability and they have to submit a claim to an insurance company, it’s automatically an uneven playing field, the ultimate David vs Goliath. The person who is struggling with a serious medical condition is not equipped to take on a well-oiled insurance company that’s willing to put a lot of time and resources into shooting down those claims, hoping these people just give up and go away,’ Dabdoub explained.
“The insurance companies have long tried to cast ME/CFS as purely subjective and lacking objective evidence, or as a mental illness for which the duration of benefits may be more limited. Now they seem to have ratcheted up this approach as the number of these claims have increased with the emergence of long COVID.
“‘As they get more claims for these conditions, it seems like the insurance companies are shooting them down even more. So we’ve had to refine internally how we respond to those denials when a client comes to us,’ Dabdoub said.”
You can read it here.
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Stanford geneticist Ron Davis seeks treatments for his son’s disease
Ron Davis, a prominent geneticist at Stanford Medicine, is well-known to longtime members of the ME/CFS community for dedicating his life to unlocking the puzzle of the disease that has so profoundly impacted the life of his son, Whitney Dafoe. Others may be less familiar with his work. In any event, Stanford Medicine Magazine has recently published a profile of Professor Davis that covers his background, his son’s history, and his research efforts.
Here’s a short description of a couple of the key hypotheses that drive his work:
“Davis has developed a theory that infection permanently changes a specific aspect of metabolism in people with ME/CFS…In this hypothesis of the root cause of ME/CFS, immune cells make a certain product of metabolism in response to infection. This metabolite, known as itaconate, ramps up other parts of the immune system’s virus-fighting abilities, but it also shuts down the normal energy production pathway in favor of one that’s less effective, which is part of the reason we feel tired when we have a cold or flu. Normally, this switch is short-lived, but in ME/CFS it could become permanently stuck in the lower energy mode. Several molecules are involved in this process and Davis believes different parts of the process might go wrong in different patients.
“Another hypothesis…centers on the body’s production of nitric oxide, a small molecule with many important roles in biology, including regulating the brain-signaling molecules dopamine and serotonin, levels of which are often out of whack in ME/CFS. Davis and his colleagues have also found mutations in several genes related to the metabolic and nitric oxide pathways in people with ME/CFS.”
You can read it here.