Top Tweets for #PWMW
The ME Association has published its 2024 Annual Report. This follows huge issues raised last year.
I urge you to read, scrutinise and share it.
I have shared the link, with some of my thoughts in a thread on the S4ME forum.
Links in the reply to this post.
#pwMW #LongCovid
Ik durf het bijna niet te zeggen want toen ik laatst zei dat het beter ging was het meteen daarna weer mis. Fluister modus: ik ben wat helderder in de ochtend en al 2 dagen gewoon wakker geworden sssst 🤫
#PEM is zo onvoorspelbaar
@chydorina That's crap. We, the caregivers, do accept it. The burden on us is immense. We sacrifice everything in our own lives to protect our #pwMW and especially #vsME.
ME-patiënten zouden een essentiële rol krijgen in de subsidieprocedure voor wetenschappelijke studies naar de mysterieuze ziekte. Maar hun stemrecht werd plots afgeschaald naar adviesrecht. Hoe hoop veranderde in wanhoop, hoor je om 14 uur op @NPORadio1
@SarahLizzyLou I think the #DWP level of service can be summed up in one word although I would be inclined to use two words! #PIP #MyalgicEncephalomyelitis #WCA #pwMW #HumanRightsViolations
@BhupeshPrusty @JanetDafoe Toda la comunidad internacional de personas con #EncefalomielitisMialgica te estamos muy agradecidas @BhupeshPrusty. #pwMW #MyalgicEncephalomyelitis
We're starting something new here at Unproduced & Unadapted. We love podcasts and want to help people discover other podcasts. Each Saturday we're going to do a #SaturdayShoutout and showcase a podcast we think you'd love.
#podcast #podcast #podcasting #podcasters #pwmw
There is so much wrong with this article.
Acknowledges PEM but then says to exercise if you don't have shortness of breath and chest pain.
FGS!
#Pwmw #LongCovid
No, no, no!
This article mentions PEM but also states ' As long as patients who had covid are asymptomatic of symptoms like chest pain and shortness of breath, returning to exercise is not an issue'.
WRONG.
https://t.co/MxYXWDQ6WB
#PwLC #LongCovid #MEcfs #medical
I've had ME for 36 years most days the symptoms are frighteningly extreme & after all these years nothing has changed there's no treatment for #pwME & most Drs & HCPs are so misinformed about ME it's best to avoid them
This should never have happened to any of us
#MEAwarenessHour
タイガー・クイーンのデビュー戦＆ヤギリ口Typeの2種のマスクがセットで期間限定特別価格にて販売中。 「40周年特別タグ」はセット販売のマスクのみに付きますので、お見逃し無く。
https://t.co/o1REAu96qz
#MASKBANK #タイガークイーン #初代タイガーマスク #PWMW #ストロングスタイルプロレス
Österreich will #pwMW auch nicht helfen.
Möglich macht das u. a. die die Krankheit trivialisierende Bezeichnung #CFS sowie der falsche Fokus auf Fatigue/Müdigkeit!
Das #CFS muss weg!
1. Schritt: Die Krankheit korrekt als #MyalgicEncephalomyelitis bezeichnen!
Noch ein Gustostückerl vom @bmsgpk:
"Derzeit ist der Aufbau spezifischer medizinischer Behandlungs- und Versorgungsstrukturen inklusive Finanzierung von öffentlichen Anlaufstellen zur Diagnosestellung des CFS nicht vorgesehen und erscheint auch nicht als primär zielführend."
@karenphysiocouk @PhysiosForME Also important is looking into „too wired to be tired“, a typical symptom for #pwMW. The autonomous nervous system, hormone system, overactive immune system, autoantibodies, chronic inflammation; all is so deregulated, that the body is too busy to rest. Calming down takes longer.
This and so much more than this it is time we STOPPED listening to those who do not acknowledge autoimmune #pwMW #pwLC #pwPOTS #PwDisability Dr. Siyab, MD's video! #TikTok https://t.co/wz7QPHKgrE
We are happy to see this very welcome declaration from the Chartered Society of Physiotherapy.
‘.......approaches that use fixed incremental increases in activity levels do not meet that criteria and should not be used."
https://t.co/tkPe1aVHTG
#pwMW #MillionsMissing
We are happy to see this very welcome declaration from the Chartered Society of Physiotherapy.
‘.......approaches that use fixed incremental increases in activity levels do not meet that criteria and should not be used."
https://t.co/Hz1p0WJnZY
#pwMW #MillionsMissing
I walked out to the front gate yesterday. Such a change of scene from lying in my bed 20+ hours a day. I marveled at the blue sky, the beautiful cloud patterns & the wind blowing through the palm tree. For a few minutes I was almost free #ME #PwMW #Fibromyalgia
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