Ror Preston

@rorpreston.bsky.social

1668 Followers 411 Following

Founder @ CrunchME | Creating the evidence & insight base to crunch infection-associated chronic conditions 💙 #MECFS #LongCovid #IACC #PAIS 📍 https://crunchme.org/

Woman dressed in a pink jumper, with pink cap saying 'Cure Long Covid' in red lettering
Pink cap with red text saying 'Cure Long Covid'
Examples can be found through the Open Medicine Foundation & PolyBio Research Foundation in the USA, and ME Research UK in the UK - amongst many others. The goal must be harnessing this research to develop treatments for people desperately in need.
These include autonomic nervous system dysfunction, cardiac pre-load failure & significantly reduced oxygen extraction, the presence of micro-clots in the blood, and a complete lack of metabolic adaption to exercise. ME/CFS research is inherently multi-disciplinary, and provides an incredible opportunity to understand how different systems within the body interact.
Mirin et al. (2022) estimate the annual economic burden of ME/CFS in the US has increased from $44bn pre-Covid, to $255bn now - a nearly 6-fold increase. Studies so far suggest around 25-50% of Long Covid patients meet the diagnostic criteria for ME/CFS.
A study by Mirin et al. (2022) found that NIH funding in the US to be 3% of the level required to be commensurate with similarly burdensome diseases. This is a picture that is mirrored around the world.
A study by Hvidberg et al. (2015) found ME/CFS to have the worst health-related quality of life for any illness group, including cancers, sclerosis, and chronic renal failure. Life is worse still for people at the severe end of the ME/CFS spectrum.
The Case for Ramping up ME/CFS Research
Area chart showing ME funding (£6m) vs. MS, IBD and Parkinson's by the UK Government, 2015-20
Bar chart showing the NIH funding level per DALY by disease, with Long Covid and ME/CFS at the bottom
Woman wearing black cap saying Cure ME/CFS
Black cap saying 'Cure ME/CFS' on the front, church and people in the background
Black caps with Cure ME/CFS in white on front
Black cap saying Cure ME/CFS in front of St Giles Cathedral in Edinburgh
Black cap saying Cure ME/CFS
Interior of a Zimi Air respirator
Man indoors in a black hoodie wearing a white respirator with earloops, by Zimi Air