NPO法人 筋痛性脳脊髄炎の会(@CFSnon) 's Twitter Profile Photo

世界各国の 患者さんの体験談
12人の患者さんを順に紹介していきます


ブラジルのイヴァナ・アンドラデさんの紹介
mecfsj.wordpress.com/2024/05/01/24-…

私は長年、ME/CFSに対処する準備ができていない医療関係者と闘ってきました
 

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World ME Alliance(@WorldMEAlliance) 's Twitter Profile Photo

Don't miss out on your chance to hear from non-profit leaders across the globe on the projects, campaigns and work taking place to accelerate recognition, research and respect!



Register to reserve your spot today:
buff.ly/4b5tgxQ

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NPO法人 筋痛性脳脊髄炎の会(@CFSnon) 's Twitter Profile Photo

World ME Alliance は、 で苦しんでいる人々のために、病気の認知、研究、敬意を強く求めるために、それぞれの国の保健機関に訴え、 .となるよう呼びかけている

の患者紹介シリーズを通して、遅れた地域のME患者の置かれた窮状紹介
worldmealliance.org/global-voice-f…

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World ME Alliance(@WorldMEAlliance) 's Twitter Profile Photo

The United Kingdom Parliament will be debating tomorrow, May 1st, ahead of , with a government minister required to respond to issues raised.

We thank MPs in advance for joining the demanding change this year.

buff.ly/3xUCeiB

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World ME Alliance(@WorldMEAlliance) 's Twitter Profile Photo

'Without our memories, who are we? This has probably been my greatest loss.'

Una shares her experiences of deteriorating ME, and the compounding losses that come with it.



Read her story, hear her voice: buff.ly/3Upj8sE

'Without our memories, who are we? This has probably been my greatest loss.' 

Una shares her experiences of deteriorating ME, and the compounding losses that come with it. 

#GlobalVoiceForME #WorldMEAlliance #SouthAfrica

Read her story, hear her voice: buff.ly/3Upj8sE
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Sissel Sunde 🇳🇴(@Sissel777) 's Twitter Profile Photo

It's May and ME Awareness Month 2024. I've made an overview of what's going on around the world - and how to contribute. Norwegian text, English link at the top. 😊😊



lifewithmebysissel.wordpress.com/2024/05/02/me-…

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World ME Alliance(@WorldMEAlliance) 's Twitter Profile Photo

Wherever you are in the world, call on your country to become a !

Our call-to-action is now live!

We've got a guide for every country, and now we need your help.
ncephalomyelitis
buff.ly/49XBer6

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NPO法人 筋痛性脳脊髄炎の会(@CFSnon) 's Twitter Profile Photo

世界各国の 患者の体験談 ②


日本の篠原三恵子さん
mecfsj.wordpress.com/2024/05/03/24-…

約10年間はほぼ寝たきりに近く、衰弱してスプーンを握れず、食事介護を受けていた

水平に倒しせる車いすを支給されるために2年間闘った
これがなしでは2005年から家の外には出られなかった

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World ME Alliance(@WorldMEAlliance) 's Twitter Profile Photo

Check out UniteToFight2024 - a community-led, online conference, on May 15th and 16th!

They're building an inclusive, interactive space to drive societal change on & !

Tickets are free. Register now!
buff.ly/3QiSu37

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World ME Alliance(@WorldMEAlliance) 's Twitter Profile Photo

Create a custom poster for and join our . The template is available on our website for you to use on social media and events. Bring your voice to building change together. buff.ly/42xG4bC

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NPO法人 筋痛性脳脊髄炎の会(@CFSnon) 's Twitter Profile Photo

の世界啓発デーに向けて
日本も になるよう求めましょう

World ME Alliance は世界各国のためのガイドをまとめ
全世界の患者さんがWHO事務局に働きかけるよう呼びかけています
皆様のご協力をお願い致します

詳しくは↓
mecfsj.wordpress.com/2024/04/30/24-…

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World ME Alliance(@WorldMEAlliance) 's Twitter Profile Photo

'I dreamed. I planned. I was excited for my future...'

Kelly takes the stage as our next , challenging the “you don’t look sick” argument.

Read her story.
buff.ly/4dabqei

'I dreamed. I planned. I was excited for my future...'

Kelly takes the stage as our next #GlobalVoiceForME, challenging the “you don’t look sick” argument. 

Read her story. 
buff.ly/4dabqei

#WorldMEDay #pwME #MECFS #EMSFC #MECVS
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World ME Alliance(@WorldMEAlliance) 's Twitter Profile Photo

'The PEM, pain and insomnia which are part and parcel of ME engraved themselves upon me. My vigour and zeal, all my pleasure of life, was stolen.'

Dr Shafiq shares his life with ME in Pakistan.

buff.ly/4bo8A3S

'The PEM, pain and insomnia which are part and parcel of ME engraved themselves upon me. My vigour and zeal, all my pleasure of life, was stolen.' 

Dr Shafiq shares his life with ME in Pakistan. #GlobalVoiceForME #WorldMEDay #Pakistan

buff.ly/4bo8A3S
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NPO法人 筋痛性脳脊髄炎の会(@CFSnon) 's Twitter Profile Photo

世界各国の 患者さんの体験談 ③


南アフリカのㇺリンデニ・ガベラさん
mecfsj.wordpress.com/2024/05/03/24-…

2020年に で入院後、 を発症し、2年後に と診断
仕事を失った

公立病院ではMEや体位性頻脈症候群(POTS)に対する理解が全くない

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