JavaScript is not available.

It’s a disease that crushes previously active and thriving people in the prime of their lives - often depriving them of the ability to work and to maintain normal levels of physical and cognitive function.

180

Those on the mild end of the spectrum struggle with activities of daily living while those on the severe end can be so sensitive to stimuli that they are bedbound and dwell in dark rooms with earplugs. The slightest movement can cause excruciating pain.

154

Long COVID Has Forced a Reckoning for One of Medicine’s Most Neglected Diseases

We’ve known about this chronic illness for decades but because it affects women more often than men, it’s been psychologized & dismissed by clinicians & underfunded by government & private sectors, leaving sufferers with no effective approved treatments.

theatlantic.com

Only a couple dozen doctors specialize in chronic fatigue syndrome (ME/CFS). Now their knowledge could be crucial to treating millions more patients.

205

ME/CFS and Post-Exertional Malaise among Patients with Long COVID

And then in stalked COVID, leaving millions dead and millions more struggling with debilitating post-acute sequelae known by the umbrella term #LongCOVID. According to a recent study, at least half of those with LC meet the diagnostic criteria of #MECFS.

ncbi.nlm.nih.gov

This study sought to ascertain the prevalence of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) among a sample of 465 patients with Long COVID. The participants completed three questio...

133

Understanding ME/CFS and Long COVID as Post-Viral Conditions - Society to Improve Diagnosis in...

Since the pandemic began, the number of people struggling with #MECFS has doubled.

improvediagnosis.org

Understanding ME/CFS and Long COVID as Post-Viral Conditions By Susan Carr, Senior Writer Susan Carr: I’ve read that pre-COVID-19, you and some of your Stanford colleagues thought that it might take...

144

As Ed Yong’s article which I linked a few tweets back perfectly illustrates, the decades of disregard means there are only a small number of medical practitioners and researchers who know this disease well (or as well as something with this little research funding can be known).

123

So we have a huge influx of new patients meeting this diagnostic criteria, a limited number of physicians who can try to manage their symptoms in an environment where there are no approved therapies (so whatever meds are available for symptom management are likely to be $$$)

109

AND where there is no professional pipeline for early career scientists to get involved in research because too many medical journals don’t publish about #MECFS and there isn’t enough funding for research to sustain a career.

111

Research update: The relation between ME/CFS disease burden and research funding in the USA - PubMed

A recent study found that #MECFS is more underfunded WRT disease burden than any disease in the NIH portfolio.

pubmed.ncbi.nlm.nih.gov

To be commensurate with disease burden, NIH funding would need to increase roughly 14-fold.

121

Black Women Are Fighting For Recognition as Long COVID Patients

And as hard as it is for the average #MECFS or #LongCOVID patient to get care in an environment that does not acknowledge the depth of their suffering, imagine being sick with this cruel illness AND being a person of color

time.com

With help from allies from the ME/CFS community

7:50 PM · Feb 1, 2023

Replying to

Or being a member of the LGBTQ community. “…the Census Bureau survey also revealed that trans and bisexual adults are much more likely to report having [Long COVID].”

them.us

Long COVID Is More Common in Bisexual and Trans People. The Reasons Why Are Complicated

Activists are calling for more research and government support to address troubling health disparities.

101

Under the current status quo, patients who are under constant threat of further deterioration are expected to endure their illness in the hopes that meager funding *may* lead to a breakthrough. We can’t accept that. And we need allies who understand the gravity of this moment.

107