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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Senior Member
The Patient-Led Research Collaborative’s Patient-Led Research Fund announced $4.8 million in biomedical research awards today, funding 9 research projects in Long COVID, ME/CFS, dysautonomia, and associated conditions.

This fund and awarded projects are distinctly meaningful for four major reasons:

First: a panel of 15 patient researchers with infection-onset illness, including Long COVID, ME/CFS, and dysautonomia, decided how the $4.8 million in research funding should be allocated and prioritized, including calling for specific areas of research. This is a change from the typical power dynamic of biomedical research, especially in chronic illness, where large organizations decide where funding should go, and patients have no input into what is studied. The panel consisted of patient researchers, most with science or medical backgrounds, with a broad range of expertise in addition to their lived experience with chronic illness.

Second: to date, Long COVID research has fallen short of its promise to improve patient health and largely disregarded insight from decades of research into infection-associated chronic illnesses. The awarded projects were chosen with an emphasis on impact and on research directions that are well informed by the existing body of research.

Third: the awarded projects themselves showcase some of the diverse topics that Long COVID and ME/CFS patients would like to see pursued. The projects span many investigative paths, including microclots, spinal-structural abnormalities, immunologic dysfunction, microbiome changes, mechanisms of sleep dysfunction, computational drug repurposing, and a clinical trial of a promising and widely available drug.

Fourth: Each project that doesn’t already have patient representatives on the project will receive 1-2 paid patient representatives from the Patient-Led Research Collaborative to inform study design. This will ensure that the lived experience of patients are incorporated in all steps of the research process.

The awarded projects are: https://patientresearchcovid19.com/press-releases/

Rufous McKinney

Senior Member
Here is an excerpt of the List of Topics they'd would welcome proposals to work on: I hits most of our list...clearly they will need to keep seeking more funding as its quite a lengthy list...

"We also especially encourage and prioritize proposals on areas of research identified by patients as critical. In no particular order, these include (but are not limited to):
  • the role of hormones in symptom expression
  • studies on mechanisms driving connective tissue disorders and connective tissue damage in infection-associated diseases, and therapeutics to repair and strengthen connective tissue and structural spinal conditions
  • overlaps with inflammatory conditions like endometriosis
  • how the menstrual cycle impacts the illness, and the impacts of pregnancy on illness
  • antivirals including antivirals against reactivations like EBV
  • addressing and understanding vascular dysfunctions like clotting
  • addressing and understanding mechanisms of cerebral and general hypoperfusion and hypovolemia
  • mitochondrial treatments and metabolomics research
  • treating and understanding sleep issues, unrefreshing sleep, and circadian rhythm dysfunction
  • addressing brain fog, neurocognitive issues, and neuroinflammation
  • addressing and understanding immune dysfunction and mast cell activation
  • treating autonomic and nervous system dysfunction
  • studying mechanistic overlaps and the relationships between related and comorbid illnesses
  • additional triggers of ME/CFS and connective tissue disease, including mold exposure
  • treating and researching post-exertional malaise (PEM) and fatigue "