Discover and read the best of Twitter Threads about #SevereMECFS

Most recents (4)

What I mean is that they saw me before. They saw me sick. They saw me moderate, mild, severe. They heard and witness the dozens of symptoms accumulating for years. They saw it. I didn't know what was happening to me. I checked SO MANY OF the mecfs symptoms for YEARS.
#meawareness
doctors even diagnose me orthostatomic hypotension, orthostatic intolerance, then pots. the raynauds, like a lot of these conditions. But they did nothing about it. "It will disappear" Guess what ? It got worse. i even had a test for an illness that causes red blood cells to not
be able to transport the oxygen through the body. like they all saw that something was wrong but it was "nothing"

Of course they kept blaming the fact that I was sick and getting worse on me. "I wasn't doing enough" while I was overworking and probably in crashes all the time.
Read 7 tweets
There's a lot of people with severe and very severe ME. Please consider them. Don't forget about them, about us. It's not just 10 people. It's millions of us. Missing. Here but not really here
We do exist. There's so many of us

#MyalgicEncephalomyelitis #MECFS #severemecfs #pwME
the representation lacks a lot of the reality of the numbers, the %, the reality of severe and very severe people with #MECFS
Those who are bedridden. Almost paralysed. Who can't go protest. Who do not have carers. Can't express themselves. Are kept isolated.
Who can't draw on pillow cases.
We, you, need to include those in your fight. And realize that's they're not rare cases. We're millions.
Read 6 tweets
🧵
“ME/CFS: What Psychiatrists & Psychologists need to know” by @DoctorsWithME (March 2022)

doctorswith.me/me-cfs-what-ps…

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #NeuroME #MEcfs #CFS #PwME #CFSME

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“#ME/#CFS is a chronic, complex, multi-system biological illness with often devastating consequences. It affects all age groups including children, and all social classes. About 75% of sufferers are female”

#MyalgicEncephalomyelitis #MEcfs #PwME #CFSME #ChronicFatigueSyndrome
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ME/CFS “has a worse quality of life score than many other serious illnesses including cancer, stroke, rheumatoid arthritis and MS. 25% of patients are housebound or bedbound.”

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #SevereME
Read 10 tweets
[Thread]
"#MyalgicEncephalomyelitis/#ChronicFatigueSyndrome: Essentials of Diagnosis & Management" (from US ME/#CFS Clinician Coalition)

mayoclinicproceedings.org/article/S0025-…

"21 clinicians specializing in ME/CFS convened to discuss best clinical practices for adults affected by #MECFS"

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"the United States and other governments as well as major health care organizations have recently withdrawn graded exercise and cognitive-behavioral therapy as the treatment of choice for patients with ME/#CFS

#ChronicFatigueSyndrome #MEcfs #MyalgicE #PwME #MyE #MEeps
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"There are many steps that clinicians can take to improve the health, function, & quality of life of those with ME/#CFS, including those in whom #MECFS develops after COVID-19"

#PostViralFatigueSyndrome #PostViralSyndrome #PVFS #LongCovid #Covidlonghaulers #PostCovidSyndrome
Read 59 tweets

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