Alexis N. Misko Profile picture
Advocacy for Long Covid, ME/CFS, dysautonomia & related syndromes. Broader disability justice for everyone. Former HCP. #FBLC
PhilipTerpstra Profile picture 1 added to My Authors
Aug 6 5 tweets 3 min read
🧵 There’s been an uptick of doctors online claiming that #LongCovid #MECFS #POTS are psychosomatic.
What other illnesses were falsely thought to be psychogenic?

cancer, multiple sclerosis, asthma, ulcers, stroke, seizures, rheumatoid arthritis, neuropathy, anemia…
1/5
… tuberculosis, liver diseases, concussion syndromes, cysts, sleep apnea, AIDS, & more.

Even now some people w/ these illnesses are still doubted or questioned about anxiety & psychological state.

What were some incorrect, even harmful, past treatments for illnesses?
2/5
Jul 11 6 tweets 3 min read
This paper from 1988 notes infection-triggered fatigue syndromes like #LongCovid #MECFS occurring as far back as 1934 (though other papers show they existed long before that). It also discusses some potential hypotheses for cause, which might sound very familiar...
🧵(1/6) Table 2: Some major outbreaks of fatigue syndrome  Los Angel "the presence of muscle damage associated with a disorder of oxidative metabolism"

"reduced respiratory function of the mitochondria"

"A variety of autoantibodies can be demonstrated" (2/6)
Jul 2 7 tweets 3 min read
🧵The 7 questions I submitted for the White House & HHS Call on #LongCovid (7/15, 4pm EST):

1. Why has public health (e.g. CDC) failed to include a warning of long-term effects of #COVID19 in the recommendations for prevention of infection? How will they be held accountable? 2. This is truly a national/international crisis. Will the White House include #LongCovid in its next public address, press conference, etc? The American public is still largely unaware of the extensive damage and the millions of people experiencing it.
Jun 14 4 tweets 3 min read
I have created an email template to be sent to RECOVER@nih.gov expressing concerns about the RECOVER study for #LongCovid. It can be copied/pasted & sent as is (please add your name at the end, after sincerely, before references) or personalized. (1/3)

docs.google.com/document/d/1Ie… It is written from the view of any stakeholder, which (in my opinion) means it can be sent by #pwME, #NEISvoid, anyone w/ illness pre-Covid who stands to benefit from this research (even outside the U.S). Also, caregivers/family, researchers, HCPs. (2/3)

docs.google.com/document/d/1Ie…