今日は川面をお届けします😃
筋痛性脳脊髄炎が広く周知され、治療法が見つかりますように。
#ブルーフォトチャレンジ
#筋痛性脳脊髄炎
#笑顔の花びら集めたい
#5月12日
#mecfs
#bluephotochallenge
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#MEcfs
Posts tagged #MEcfs on Bluesky
Is the RACGP HANDI recommendation of incremental physical activity for chronic fatigue syndrome/myalgic encephalomyelitis harming patients? — Stallard et al. "Given the lack of sound research support for graded exercise therapy in ME/CFS, the contraindication of graded exercise therapy by best practice guidelines in the US and the UK, and patient reports of iatrogenic harm, the RACGP guideline, Incremental physical activity for chronic fatigue syndrome/ myalgic encephalomyelitis, should be withdrawn immediately."
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Is the RACGP HANDI recommendation of incremental physical activity for chronic fatigue syndrome/myalgic encephalomyelitis harming patients?
www1.racgp.org.au/ajgp/2026/ma...
Screenshot from Science for ME weekly update
#MEcfs #CFS
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“(Contd) They must move away from the idea that activity is dangerous, and instead say that activity is necessary and important, it provides safe exploration of activity, instead of it feeling dangerous. Severity does not mean anything for carrying out treatment.”
#MEcfs #CFS #PwME #CFSME
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From the Irish ME/CFS Association: We were delighted to get another grant for core funding of €3000 last week from the Hospital Saturday Fund following an application Tom Kindlon made earlier in the year. The Hospital Saturday Fund gets its funds from Hospital Saturday Fund health plans. Medical charities can only get funds once a year so we will of course need to be careful how we plan to use it. In photo: Vera & Tom Kindlon, committee members of the Irish ME/CFS Association, an all-volunteer organisation. Photo was actually from 2020: they transferred the money this year so we don't have one of those envelopes with their name on it. The Hospital Saturday Fund #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME Tom Kindlon-pwme
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Longer message regarding the €3000 core funding grant that we were delighted to receive this week from the Hospital Saturday Fund
#MEcfs #CFS #MyalgicE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PwME #MyE
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Photo of Vera and Tom Kindlon
Delighted to receive a €3000 core funding grant from the Hospital Saturday Fund this week.
Will be very useful as there has been relatively little fundraising for us in recent times
In photo: Vera Kindlon & @tomkindlon.bsky.social
Longer message in next post
#MEcfs #CFS #MyalgicE #PwME
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“(Contd) Rapid changes can occur when the patient becomes curious about new ways of thinking about the disease.”
You would think doctors shouldn’t be spouting unevidenced rubbish in a court room like this!
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
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S1E1 of #HeatedRivalry is starting soon in the #ChronicLoaf stream
Hop in and watch with us ahead of the #SeatedRivalry, Sled Hockey championship tomorrow morning!
mzelo.com/app/rooms/ch...
#NEISvoid #mecfs #DisCo #ForTinu #spoonie #cannabisculture #lgbtqrepresentation
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Square promotional graphic with a teal background and blurred virus imagery. The Emerge Australia logo appears in the top left. A dark blue panel reads “International Long COVID Awareness Day 2026” with date “15 March.”
For many living with #longCOVID & #mecfs, life is measured in energy, not time.
Awareness is not only knowing long COVID & ME/CFS exist, it’s understanding the energy calculations people make every day.
Support research. Clinical education. Equitable access to care. Importantly - believe them.
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#MECFS
Wenn man keine "Löffel" mehr übrig hat, um die Spülmaschine auszuräumen, dies aber dringend tun müsste, weil man keine Löffel mehr zum Essen hat. 😵💫
🥄🥄🥄
#IronieDesSchicksals #spoonie
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Nav’s consulting physician “said that absolutely everything that can be thought of as leading to improvement should be tried. You have to be open to other techniques and ways of thinking, when what you have already tried does not work, she said. (contd)”
#MEcfs #PwME #CFS
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I had almost forgotten about this #MECFS interview last year, but suddenly there it is on youtube! Still holds true 🙂: www.youtube.com/watch?v=GVvG...
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Semmelweis hat 2 Dekaden versucht, Eminenzen klarzumachen, dass sie mangels Desinfektion für Tote verantwortlich sind. Er starb in einer psychiatrischen Anstalt. Ich möchte ja keine Parallelen ziehen, aber diese unheilige Allianz scheint 170 Jahre später noch zu bestehen. #mecfs
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Nav’s consulting physician “talked a lot about “motivation,” and that a lack of faith in treatment would cause it to not work. I took it as meaning that the family and Kolbjørn lacked motivation, which was why he was still sick.”
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
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Classification of #HHV6A and #HHV6B as distinct viruses #MECFS #LongCovid
pmc.ncbi.nlm.nih.gov/articles/PMC...
"The lack of clear distinction between HHV-6A and HHV-6B in the literature makes it difficult to properly assess epidemiological differences and etiologic associations."
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“(contd) Not in a rush, not with fanfare, but quietly and reliably in ways that don’t ask your body to prove itself over and over again.”
#MEcfs #LongCovid
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Die Versuchskandidaten des ersten Quartals 2026. Und als Laborratte darf man sich mit dieser Erkrankung noch zu den Glücklichen schätzen...
#mecfs #longcovid #postvac
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Vielen ist @chrzacharias.bsky.social wegen seines Engagements für an #MECFS Erkrankte bekannt - er selbst ist auch davon betroffen. Leider so sehr, dass er nun dringend einen geeigneten Pflegeplatz im Raum Hamburg sucht, wie das "Hamburger Abendblatt" berichtet:
www.abendblatt.de/hamburg/alto...
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“And yes, they’re often unglamorous. A chair. A timer. A routine that looks boring on paper. But boring, in this context, can be a gift. Predictability can be a form of care. Ease is a strategy.
Small changes are how capacity returns. (contd)”
#mecfs #longcovid #pwme #cfs
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CN Krebs
Der Witz ist: Ich hab immer mehr Schmerzen als der Mibewo. Nur die ersten 3-5 Tage nach der Op hatte er vielleicht mehr. Wenn er sich nicht falsch bewegt hat er gar keine.
Ich hab selbst beim ruhig liegen fast immer Schmerzen.
Das ist so krass.
#MECFS
#IIH
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Nav’s consulting physician, Ingvild Damskog: “believed that there are “many” who recover. When Anne Kielland asked why these recoveries were not visible in the statistics, she could not answer.”
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
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Bitte RT
Kennt jemand in Hamburg Pflegeeinrichtung, die sich auf geeignete Pflege einlassen würde?
Die Mutter muss weit mit der Bahn reisen und die Pallitativstation will ihn längerfristig nicht da haben.
#VerySevereME
#MEcfs
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TLR expression and NK cell activation after human yellow fever vaccination #MECFS #LongCovid
www.sciencedirect.com/science/arti...
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“That can be uncomfortable. Sometimes it brushes up against grief. Sometimes it requires renegotiating old beliefs about strength and resilience and what “trying hard enough” is supposed to look like.”
#LongCovid #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
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Nav’s consulting physician: “believed that activity matching does not work, they do not see the effect of it (and have thus missed the point that it is a coping strategy, not a treatment).”
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
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"Eine unbedachte Überanstrengung" kann bei #MEcfs schwere Abwärtsspirale bewirken und nicht jeder hat Angehörige, die sich kümmern!
Ich kenne ihn und mir tut es sehr leid!
Er hatte dieses Buch geschrieben:
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“Saving energy isn’t about doing less with your life. It’s about creating the conditions where life can actually happen. Where your body isn’t spending everything it has just to keep up with unnecessary demands & where participation doesn’t require a crash afterward.”
#MEcfs #PwME #CFSME #CFS
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Pick people who are good for your nervous system, your mind, and your soul. #recovered #anxiety #nevergiveup #AlwaysKeepFighting #fibromyalgia #MECFS #Erythromelalgia #peacefulmindpeacefullife
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