1/ At a recent @MEActNet briefing, Dr. Anthony Komaroff confirmed his earlier prediction that we had reason to expect some w/ COVID-19 would develop a debilitating chronic fatigue syndrome w/ symptoms similar to post-viral #MECFS (focusing on #LongCovid cases w/o organ damage).
2/ Komaroff alluded to abnormalities found in the brain in #MECFS, referencing theory of chronic low-grade activation of immune system in the brain — requires validation. Called for #LongCovid studies to build off past ME/CFS findings, plus research including both patient groups.
3/ Komaroff proposes that #MECFS is an illness “with a final common pathway that can be triggered by different things".
4/ As such, #LongCovid and #MECFS triggered by other viruses, infections, or environmental factors, could potentially be treated with similar interventions, even if there are some differences, such as higher incidence of symptoms related to smell, taste, and shortness of breath.
5/ So how might #LongCovid benefit from decades of research into #MECFS? First of all, “we know there are multiple abnormalities of the brain and the autonomic nervous system [in ME/CFS], which controls vital functions of the body...”
6/ Second, in #MECFS “we know there is sort of a combination of activation, dysregulation, and exhaustion of different parts of the immune system,” and this may explain symptoms in #LongCovid too.
7/ Third, in #MECFS we know there are abnormalities of metabolism, particularly energy metabolism, w/ growing evidence that cells are unable to make adequate amounts of ATP. This could explain symptoms like exertion intolerance, fatigue, and weakness also seen in #LongCovid.
8/ Fourth, a state of chronic oxidative stress has been identified in #MECFS.
And finally, there are signs of abnormalities of the gut microbiome in ME/CFS – involving imbalances in the bacteria and other microbes that may mediate many important bodily processes.
9/ Most importantly these abnormalities observed in #MECFS likely interact with one another, potentially in a way that exacerbates symptoms and reinforces the state of chronic illness.
10/ Ever the optimist, Komaroff emphasizes the positive developments and the substantial interest top researchers have shown in studying ME/CFS — not dwelling on the woefully inadequate funding to-date or noting ongoing indifference at the @NIH that continues to impede progress.
11/ While Komaroff urges that #LongCovid#MECFS be studied together, there are concerning signs the @NIH will continue its neglect of ME/CFS research & patients. i.e. The breakthrough Komaroff predicts will not come for free. 👉 1️⃣solvecfs.org/advoweek21 2️⃣millionsmissing.meaction.net
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As hard as it is to understand exertion intolerance in ME/CFS, it takes another full leap to grasp that over-exertion can reduce the threshold of what qualifies as exertion.
A reduced baseline is not just feeling worse even in your best hours, or developing new always-present symptoms. It's also finding that ever-smaller efforts trigger heightened illness and risk further debility.
This vicious cycle of exertion intolerance is what makes ME/CFS such a straitjacket, not just on the scale of hours and days, but months and years — the "annihilation of possibility" per @edyong209.
“Five people with severe autoimmune disease have become the first in the world to receive a groundbreaking therapy that uses genetically altered cells to drive the illness into remission.” theguardian.com/science/2022/s…@guardian
“In the latest work, doctors took T-cells from the lupus patients and modified them so that, on re-infusion, they attacked the patients’ B cells. In lupus, B cells churn out autoantibodies, which instead of defending against invading pathogens, attack healthy tissues instead.”
“The therapy in effect wiped out the patients’ aberrant B cells and dramatically improved their condition. The disease affected multiple organs… but after the therapy severe symptoms incl. arthritis, fatigue, fibrosis of the heart valves, and lung inflammation all cleared up.”
#MECFS may well be *the* lowest funded condition, in terms of aggregate disease burden, of any at the U.S. NIH. Funding is even worse in the UK and other countries.
Here are 10 factors that have led this devastating and common condition to be so badly neglected, all of which compound and mutually reinforce one another…
(Seeking additional ideas and feedback from #MECFS community for communicating to lay public…)
1. Invisible
ME/CFS is capable of leaving those afflicted housebound or bedbound for years... and yet even those with relatively severe cases may *look* just fine!
Body Politic has published an important open letter to the @NIH@NIHDirector urging the prioritization of #LongCOVID research that builds off prior research into #MECFS and related conditions.
In December, Congress provided $1.15 billion over 4 years for @NIH to “support research into the prolonged health consequences of #COVID19”. With many newcomers to the field there’s cause for concern that experienced #MECFS researchers may be overlooked. nih.gov/about-nih/who-…
#LongCovid and #MECFS have much in common and are increasingly joining forces to drive change that might lead to diagnostics, treatments, and a cure.
It has been a great disappointment to some psychiatrists that post-viral #MECFS hasn’t turned out to be psychiatric. This hasn’t stopped them from attempting to stake their claim over #LongCovid (or ME/CFS for that matter) to the detriment of biomedical research & patient care.