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berner sennenhund, der ein leibchen mit aufschrift trägt: "Ich bin auf 4 Pfoten hier - ME/CFS-Betroffene schaffen kaum 4 Schritte"

Ein Berner Sennenhund, der ein hellblaues Leibchen trägt mit der Aufschrift: "Ich bin auf 4 pfoten hier - ME/CFS-Betroffene schaffen kaum 4 Schritte"

Danke, dass du da warst! Ich konnte noch die Hunde treffen.

Says in settings I can't DM you - is it ok if I reach out via university address?

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Jeff, i just got dxed with CIDP, also post-covid. I would be so happy for an exchange if at all feasible, notably regarding tracking.

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How can we best support from abroad - is there a list of congressmen anywhere that we could address?

#MEAction plans to announce our #MillionsMissing campaign next week in which we will rally our community to fight back against these research cuts.

TAKE ACTION now by calling your Congressional reps to tell them to STOP the CUTS! See the Long COVID Campaigns toolkit: bit.ly/427IHlE

Navy and blue square image with the words: White House Halts Funding for Long COVID Grants. Red siren image in the top left corner, #MEAction logo in the bottom right corner.

The White House is terminating funding for NIH RECOVER grants studying Long COVID that had been awarded in 2022 and 2023 - effectively stopping 45 studies that were already underway and almost complete.

#NoLongCOVIDCuts #LongCOVID #MECFS #pwME #MECFS #MyalgicE

Trifft für mich heute leider einen Nerv 📌. Erster Verweis zum Psychosomatiker kam von einer Neurologin - jetzt nach fünf Jahren Long Covid die Diagnose schwerer Nervenschäden, vermutlich GBS oder CIDP. Wer weiss, welche Schäden hätten vermieden werden können.

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A stacked bar chart (oriented horizontally) labeled: Living with ME (myalgic encephalomyelitis / chronic fatigue syndrome) Each horizontal bar is a disease status: Pre-ME, Mild ME, Moderate ME, Severe ME, Very Severe ME. The width of each bar represents how much energy is available in each status (100, 50, 25, 12.5, and 6.25 respectively). Each bar is divided into sections for how one might allocate their energy: hygiene & nutrition (gray); caregiving, cleaning errands (red); work (orange); exercise (yellow); friends (green); hobbies (blue); fun (purple). With worsening ME, the hygiene & nutrition takes up a larger proportion of total available energy and the amount of energy available for all other parts of life shrinks. Mild ME has most things cut in half, with exercise cut smaller. Moderate ME removes exercise altogether, and everything else shrinks. Severe ME has only tiny slivers of red, orange, green, blue and purple. Very Severe ME has only a tiny sliver of green.

I've been thinking about how to explain the challenge of living with ME/CFS and created this cartoon visualization.

Imagine the life of someone without ME is a rainbow of activities that each take a certain amount of energy.

ME limits your energy, and thereby the vibrancy of your life.

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Danke dafür! Genauso sieht der Alltag aus..

Denying the Seriousness of Long COVID Is Dangerous for Me – and You What is Long COVID? Are there treatments? A guide to the illness that affects millions, but is hardly talked about.

“Denying the Seriousness of Long COVID Is Dangerous for Me – and You”

On Long COVID Awareness Day, pleased to publish this piece for Zeteo from @juliadoubleday.bsky.social

www.instagram.com/reel/DHN6lwt... 5 years with long Covid.. #LongCovidAwarenessDay

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‘We’re losing decades of our life to this illness’: long Covid patients on the fear of being forgotten Five years on from March 2020, millions of people still face debilitating symptoms, with huge repercussions on public health and productivity. But politicians are starting to pretend the pandemic neve...

Half a decade for me and other these days... #pwme #pwlc
www.theguardian.com/society/2025...

Super, dass Sie das machen! Darf ich eine Frage stellen? Mir wurde eine "psychosomatische Begleitung" nahegelegt wegen Post Covid / MECFS. Macht so etwas überhaupt Sinn, und unter welchen Umständen? Fühle mich leicht gegaslightet..

I would really appreciate not to read about "wake up calls" here anymore.
Either the EU has woken up by now and gets its act together in Munich or it's too late anyway.
Winter is here.

The UK gov wants to cut sickness and disability benefits and ‘encourage’ disabled people into work.

But they also want to cut finance to the scheme that supports employers to make accommodations for disabled people to enable them to work.

It’s clear what’s happening here!

#DisabilityRights

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ME/CFS-Erkrankte in 🇩🇪 haben fast keine medizinische Versorgung. Heilende Behandlungen gibt es nicht.

Streeck: "Solche Themen sollten wir aus der Politik herausnehmen und in die Selbstverwaltung der Ärzte geben."

Heißt: Er wird als Politiker NICHTS für uns tun!

Streeck per Erststimme verhindern!

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