Discover and read the best of Twitter Threads about #VerySevereME
Most recents (7)
I'm so tired of being told : you need to change doctors, find someone who will listen to me etc. Do you know know what it's like in reality ?
First of all. There's no one available. They don't take new patients. Appointments are in months or years. Second money. Third if you
First of all. There's no one available. They don't take new patients. Appointments are in months or years. Second money. Third if you
have severe mecfs or very severe you can't go and just find a new doctor. 4. i did that for years. No one listened. No one. Or if one did they had no Idea what to do or put me in danger or sent me to other doctors who treated me like not a human. 5. Each travel to another apptmt
undergoing painful exams being gaslit for years and treated like i wasn't sick it was not enough my pain concerns and words never mattered. 6. The crashes after each apptmt. Physical pain. Suffering. Until being bedbound for weeks and months. 7. The mental toll of all of this and
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
#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.
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.
My doctor dismissed me, my wordsw my symptoms, for 10 years (20 if you take the rest) then didn't see me for a few years.
Fast forward i'm very severe ME almost dying. He came because i've been almost dying for months. After YEARS.
He did ask me why he hadn't see me these past
Fast forward i'm very severe ME almost dying. He came because i've been almost dying for months. After YEARS.
He did ask me why he hadn't see me these past
few years.
Well I became housebound then completely bedridden, bedbound, because they didn't listen to me.
This was such an insult.
When I gave him (again) the list of symptoms I've been having and complaining about for 10 years, the reply was so insulting.
Well I became housebound then completely bedridden, bedbound, because they didn't listen to me.
This was such an insult.
When I gave him (again) the list of symptoms I've been having and complaining about for 10 years, the reply was so insulting.
I was 100% bedridden. For weeks, months. At this point. In the dark. No energy. Difficulty breathing and speaking. Out of breath. Hurting like hell. Lost a lot of weight. Dehydrated.
He SIGHED. At my list of symptoms. Said that this was "a lot" like I was exagerating, inventing,
He SIGHED. At my list of symptoms. Said that this was "a lot" like I was exagerating, inventing,
1/4 Menschen mit #MECFS kann geholfen werden.
Dies mit Faraz Fallahi derart eindrücklich erlebt zu haben, macht mich noch entschiedener, all die anderen schwerst Betroffenen, die in dunklen Zimmern aus unserem Blickfeld und aus unserem Bewusstsein verschwinden, endlich
Dies mit Faraz Fallahi derart eindrücklich erlebt zu haben, macht mich noch entschiedener, all die anderen schwerst Betroffenen, die in dunklen Zimmern aus unserem Blickfeld und aus unserem Bewusstsein verschwinden, endlich
2/4 sichtbar werden - damit sie eine angemessene Behandlung bekommen!
Die Betroffenen- Kinder, Jugendliche wie Erwachsene- sind idR ohne medizinische Versorgung und damit nicht nur dieser schrecklichen Erkrankung ausgeliefert, sondern müssen auch noch Isolation, Einsamkeit,
Die Betroffenen- Kinder, Jugendliche wie Erwachsene- sind idR ohne medizinische Versorgung und damit nicht nur dieser schrecklichen Erkrankung ausgeliefert, sondern müssen auch noch Isolation, Einsamkeit,
3/4 Verzweiflung und oft Todesängste ertragen.
Wir müssen unsere arztlichen, psychotherapeutischen-unsere gesellschaftlichen Strukturen (!) für die Betroffenen passend machen.
Ärztinnen müssen auf ihre Patient*innen hören, sie als Expert*innen ihrer Symptome anerkennen!
Und es.
Wir müssen unsere arztlichen, psychotherapeutischen-unsere gesellschaftlichen Strukturen (!) für die Betroffenen passend machen.
Ärztinnen müssen auf ihre Patient*innen hören, sie als Expert*innen ihrer Symptome anerkennen!
Und es.
Erschreckend
Wenn man die Vorträge der Prof. miteinander vergleicht
2:1
Team Scheibenbogen/Behrends, das unendliche Leid vor Augen und wie man mit mobilen wissenden Ärzten + Telemedizin sofort anfangen könnte
Und dann BW, wie man versucht mit leichten Fällen #LongCovid sich
Wenn man die Vorträge der Prof. miteinander vergleicht
2:1
Team Scheibenbogen/Behrends, das unendliche Leid vor Augen und wie man mit mobilen wissenden Ärzten + Telemedizin sofort anfangen könnte
Und dann BW, wie man versucht mit leichten Fällen #LongCovid sich
Zu rechtfertigen
Unsere Kinder sind gelaufen
Aber den aktuellen ausserhalb von Bayern geht es nicht anders
Panik!
Man gibt den bisherigen Ärzten/Prof./Kliniken Mio €, das gerne genommen wird und man diskutiert die nächsten Jahrzehnte!
Unsere Kinder sind gelaufen
Aber den aktuellen ausserhalb von Bayern geht es nicht anders
Panik!
Man gibt den bisherigen Ärzten/Prof./Kliniken Mio €, das gerne genommen wird und man diskutiert die nächsten Jahrzehnte!
Überrascht bin ich über die Aussage
"Man kann behandeln"
Prof. Steinacker kann uns sehr gerne mitteilen, wie?
Es würde Kinder mit Pflegegrad 4 ins Leben holen
P.S.
Reha wäre aber eine ganz schlechte Idee
In BW sind die Menschen
"Man kann behandeln"
Prof. Steinacker kann uns sehr gerne mitteilen, wie?
Es würde Kinder mit Pflegegrad 4 ins Leben holen
P.S.
Reha wäre aber eine ganz schlechte Idee
In BW sind die Menschen
🧵
“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
1/
“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
1/
2/
“#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
“#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
3/
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
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
[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"
1/
"#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"
1/
2/
"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
"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
3/
"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
"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
