イチゴ♪@断薬、精神疾患完治 retweeted
助けてください。
ここ5日間寝てても脈拍100超える日が毎日続いている。座ってご飯も食べれずトイレも一回程度
寝返りですら疲れて毎日クラッシュ？
日毎に動けなくなってきてる。
救急車も何度も呼ぼうとしましたが入院できて適切に処置される病院ありますか？
#慢性疲労症候群 #mecfs
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Rosa retweeted
Mein Vater hat es erst verstanden, als er in Pension ging.
Wer das Elend, das man mit #MECFS erlebt, nicht persönlich sieht, kann oft nicht glauben, wie elendig schlecht es den Betroffenen geht.
Wir brauchen endlich Aufklörungskampagnen!
#MEawarenessHour #LongCovid
@BMG_Bund
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Rosa retweeted
Menschen mit #MECFS leiden unnötig. Und sie sterben unnötig. Wegen medizinischer Vernachlässigung. Wegen der Stigmatisierung ihrer Erkrankung. Wegen der absoluten und totalen Hoffnungslosigkeit.
Alles, was es bräuchte, um etwas zu ändern:
politischer Wille.
#MEawarenesshour
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Rosa retweeted
#MEAwarenesshour
Birthday 2020.. A day later my body died and I was like "buried alive" for months. Today, more than 2 1/2 years later, I dared to wash my hair again for the first time. With success!!!💪🏼 Thanks to the helping therapy 🙏❤️ The feeling is surreal.. As a #MECFS
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Rosa retweeted
Ich habe in einer App eine künstliche Intelligenz gefragt, was die Regierung tun muss, um uns ME/CFS-Betroffenen zu helfen.
Das Ergebnis ist so zutreffend, das ist unglaublich 👌
Hier das Ergebnis:
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#MECFS
#MEawarenesshour
@Karl_Lauterbach
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Extraordinarily Boring retweeted
Thought for the day:
It is utterly shameful how governments dismiss the lived experience of people with chronic illness.
History will not judge them kindly.
#LongCOVID #MECFS #postviralillness
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Our new study (with @jtmalato and @lgraca) on #MECFS (mis)diagnosis is finally out. Note that the findings of this study are applicable to all diseases with imperfect diagnostics. Tell us your thoughts. mdpi.com/2075-4418/13/3/531 #biostatistics #Researchpaper #diagnosis
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Juanya' retweeted
This is one of my regular challenges with #MECFS and #LongCovid. I’ve always been a scrub and moisturize girl, and it is difficult to get clean and moisturized without going into energy debt. And being inside all the time makes my skin so dry.
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read this 🧵 please
this is where we are as disabled and immunocompromised people right now
#longcovid #pwME #mecfs
My husband is now leaving our house because his current university mandates he teach in-person with few/no precautions to protect either himself or his immunocompromised wife. He will instead be risking my 72yo mother’s health because she’s lower risk for severe SARS2 than I am.
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myknittingwool retweeted
Huge and heartfelt thanks to @liammannix for writing this story.
It acknowledges that mainstream medicine doesn't have all the answers, and recovery from #LongCOVID must be patient-led.
Doctors need to listen to people with #MECFS
smh.com.au/national/tracey-s…
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Minnesota MECFS retweeted
Help us shape EmPOWER M.E., where panels of patient advocates, professionals, & scientists share their expertise on topics relevant to the quality of life for people w #MECFS, #LongCovid, & their caregivers.
Complete the survey below to inform our topic!
forms.gle/y2uW9haaCnR1qv2Z8
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Minnesota MECFS retweeted
Solve M.E. and @IAmBiotech will co-host a free virtual event, “Long Covid: What Will It Take to Accelerate Therapeutic Progress?” 2/21 10AM PT to convene stakeholders to advance R&D to diagnose & treat #LongCovid, #MECFS, & post-infection diseases.
ow.ly/HWgG50MFQFT
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Minnesota MECFS retweeted
"The Committee urges (addressing) research projects related to diagnostic testing, cures, and treatments for post-viral illness, specifically #LongCovid and #MECFS ... with a focus on issues related to military populations.
congress.gov/117/crpt/hrpt38…
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Minnesota MECFS retweeted
Thanks to Solve M.E.’s relentless advocacy, #MECFS and #LongCovid were called out as areas of exceptional importance in the congressional report language, indicating that these areas should be prioritized for the next funding cycle. cdmrp.health.mil/pubs/press/…
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Minnesota MECFS retweeted
The latest issue of the @NIH #MECFS Newsletter features updates on ME/CFS-related research activities, information on the newly formed #MECFS Research Roadmap Working Group of the #NANDS Council, recent publications, & more:
#MEAwareness #MEAwarenessHour
solvecfs.org/wp-content/uplo…
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Minnesota MECFS retweeted
ICYMI: this #LongCovid conversation between @BhupeshPrusty (award-winning expert on viral infections & Solve #RamsayResearcher) & @ahandvanish (co-founder, @patientled) includes a discussion of #MECFS research and how "parallel studies" will help us understand both diseases.
Tune on to this Radio telecast at 14:20 ET to listen to the Science Friday conversation between @maddie_sofia , @ahandvanish and @BhupeshPrusty on the topic 'Here’s What We Know About Long COVID, Three Years Later' sciencefriday.com/segments/l…
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Telehealth is vital for #Veterans, #disabled & #immunocompromised to get care from out-of-state specialists! Especially as there are so few #MEcfs #MCAS #CCI #Tetheredcord even available at all.
There will be several important consequences of ending the COVID PHE in May:
Not everyone will be eligible for free testing.
5-14 million people could lose Medicaid coverage
Without permanent changes to Medicare, telehealth coverage will end.
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