so warm. yet my feet are cold. just another day with "loss of thermostatic stability" ._.

If anyone wants accurate info about & , my ongoing thread has actual references to the peer reviewed scientific literature:

miaow.gay/@meganeko/1084939565

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long text in image (& description), long covid, ME/CFS 

"So I know a lot of doctors that when they can’t figure something out, they kind of take out frustrations inappropriately on patients. I've seen that. ME/CFS patients have come to see me, and share the same story all the time. They say “my doctor says it’s all in my head”, and they get this kind of psychologising of their physical illness, they get send to a psychiatrist or psychologist […]"

tweets.todon.eu/tjalcovrv/stat

[24/]

I had a physically active lifestyle & was working on my thesis before I got "mild" . Now I'm mostly bedridden with severe .

miaow.gay/@meganeko/1084220263

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[22/]

"[a thread] about metabolically-led post-exertional symptoms. This is quite possibly the most dangerously misunderstood piece of , and infection-associated chronic illness puzzle (including non-viral pathologies that involve mitochondrial damage)."

tweets.todon.eu/PutrinoLab/sta

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[12/]

"How and Chronic Fatigue Syndrome () Exhaust the Body"

healthrising.org/blog/2022/02/

"Immunological dysfunction persists for 8 months following initial mild-to-moderate SARS-CoV-2 infection"

nature.com/articles/s41590-021

"ACE2-independent infection of T lymphocytes by SARS-CoV-2"

nature.com/articles/s41392-022

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[6/]

"The Reduced Brain Blood Flow Diseases? Long COVID, ME/CFS and POTS"

"Despite the fact that people with often meet the criteria for […] the survey suggests that doctors almost never diagnose long patients with either ME/CFS (3%) or postural orthostatic tachycardia syndrome () (4%)."

miaow.gay/@meganeko/1084773013

me-cvsvereniging.nl/nieuws/zie (nl)

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Ongoing (meta)thread about :

[1/]

"*This* is the illness we are letting rip through our community, that half of patients will end up with."

"[An patient] feels effectively the same every day as an AIDS patient feels two months before death; the only difference is that the symptoms can go on for never-ending decades."

miaow.gay/@meganeko/1084921823

"When I first became unwell with ME it was such a shock to become this sick & not receive any help. I spent the first two years in a state of terror, struggling to understand that you could walk the line between life and death, and mainstream medicine would still turn you away"

"[…] abandoned, to problem-solve our own impossibly complex health problems"

" has been compared to late-stage AIDS, end-stage renal disease. THAT is the level of medical care I deserve"

tweets.todon.eu/NataliaHodgins

Dutch Association (translated):

"For patients with severe or very severe , life is similar to that of patients undergoing chemotherapy, patients with late-stage cancer, advanced AIDS, or severe heart failure."

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"[An patient] feels effectively the same every day as an AIDS patient feels two months before death; the only difference is that the symptoms can go on for never-ending decades."

–Prof Mark Loveless, AIDS and ME/CFS Clinic, Oregon Health Sciences University, Congressional Briefing, 1995

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"*This* is the illness we are letting rip through our community, that half of patients will end up with."

"In my experience, is one of the most disabling diseases that I care for, far exceeding HIV disease except for the terminal stages."

"[…] if I had to choose between the two illnesses (in 2009) I would rather have HIV. But , which impacts a million people in the US alone, has had a small fraction of the research dollars directed toward it."

tweets.todon.eu/ahandvanish/st

"This similarity—together with the cardiac index and cerebral blood flow reduction found in both cases and controls—supports the view that long‐haul COVID‐19, with a symptom duration over 6 months, is a form of ME/CFS."

[end of thread]

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"Despite the fact that people with often meet the criteria for , and that treatment protocols that can help symptomatically are readily available, the survey suggests that doctors almost never diagnose long COVID patients with either ME/CFS (3%) or postural orthostatic tachycardia syndrome () (4%)."

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"The Reduced Brain Blood Flow Diseases? Long COVID, ME/CFS and POTS"

"[...] found no difference in symptoms between the and patients (with or without )."

"POTS is a disease of sympathetic overdrive (including high heart rate) and, most importantly, reduced blood flows to the brain."

"All long-haul COVID-19 patients developed POTS during tilt."

"SARS-CoV-2 infection acts as a trigger for the development of ME/CFS."

healthrising.org/blog/2021/12/

mdpi.com/1648-9144/58/1/28/htm

"The overlap of symptoms, signs, and general features of the individual PAISs [post-acute infection syndromes] suggests the involvement of shared pathological pathways and the possibility that common diagnostic markers, or even a unified etiological model, might be established."

"The overall clinical picture of many PAISs often overlaps with the presentation of post-infectious or fibromyalgia, or resembles other fatiguing, neurological, or rheumatic disorders."

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"[...] patients might experience delayed or a complete lack of clinical care."

"Prolonged, debilitating, chronic symptoms have long been reported in a subset of patients after common and typically non-serious infections — for example after mononucleosis, a condition generally caused by Epstein–Barr virus (EBV)."

"a long-term study of 233 SARS survivors in Hong Kong reported that 27.1% met criteria for 4 years after acute infection."

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