Si tienes 18 años o más, y sufres de Malestar Post-Esfuerzo/Exacerbación de Síntomas Post-Esfuerzo (PEM/PESE), apóyanos participando en la validación de un cuestionario sobre el nivel de funcionalidad en personas con PEM/PESE. pacific.qualtrics.com/jfe/form/SV_9E…

🔇Sensory safe environment🕶️ Provide private, soundproofed, and dimly lit rooms. Reduce smells, sensory overload, and physical contact to minimise post-exertional malaise (PEM). buff.ly/46wv5lD #SevereMEDay #MECFS #MyalgicEncephalomyelitis

It’s #SevereMEDay. Please remember people like me that exist with #SevereME And remember those who were severe but are no longer with us. Help those of us who are still here. Without help, we may not make it to the next Severe ME Day. #pwME #MECFS #LongCovid #PwLC

🆘 𝗝𝗼𝘂𝗿𝗻𝗲́𝗲 𝗱𝗲 𝘀𝗲𝗻𝘀𝗶𝗯𝗶𝗹𝗶𝘀𝗮𝘁𝗶𝗼𝗻 𝗮̀ 𝗹’𝗘𝗠 𝘀𝗲́𝘃𝗲̀𝗿𝗲 ! Ces derniers jours, nous avons souhaité mettre en avant les différents états que traversent nos malades, jusqu’à celui de l’état sévère voire très sévère. Aujourd’hui, en ce 8 août, 1/8

On #SevereMEday 2024 WAMES joins the WMEA in highlighting the hospital mistreatment of people with severe ME around the world and calls for safer treatment for all. tinyurl.com/yc84bb84

For Liz, the inability to communicate combined with a lack of understanding is the hardest part of hospital admissions with #SevereME. Severe cognitive dysfunction in #MECFS is oft underestimated, and as Liz shares, people are being treated like a nuisance. #SevereMEDay

On #SevereMEday 8 August 2024 we call for Safer Hospital Care for Severe ME. ENSURE LOW-STIMULUS ENVIRONMENT: Allocate private dimly lit & soundproofed rooms. Minimise chemical & fragrance smells, sensory overload & physical contact.

On #SevereMEday 8 Aug 2024, WAMES is asking the NHS in Wales to ensure they can treat patients with ME, & particularly those with severe ME, appropriately & safely. WAMES is sending the NHS & hospitals a copy of the WMEA Best practice guidelines. tinyurl.com/ypz44sha

MERUK explains the severe impact and challenge ME can have. “It is usual for people with severe M.E. to have between 50 and 100 separate symptoms. The impact of these combined is overwhelming and hard to communicate.” [25%ME gro up) tinyurl.com/55tabsmd

The 25% Severe ME group’s article says bad treatment in hospital is not inevitable. Communicate yr needs beforehand & ask questions BENEFITS-What r the Benefits? RISKS-What r the Risks? ALTERNATIVES-What are the Alternatives? NOTHING-What if I do Nothing? tinyurl.com/v4kr79j2

8/8 World #ME AllianceのHP 「#SevereMEDay 2024-世界中で起きている重症のME患者の病院における不当な扱い」と題した記事 8月8日の重症MEデーに、#WorldMEAlliance は世界中の病院での重症のME患者の体験を浮き彫りにします 詳しくは↓ mecfsj.wordpress.com/2024/08/08/24-… #MECFS #筋痛性脳脊髄炎

This year, The @worldMEalliance, of which #MEAction is a member, join organizations across the globe to spotlight the urgent need for safer hospital care for individuals with Severe Myalgic Encephalomyelitis (ME). ow.ly/W6Bw50ST7LF #SevereMEDay #SevereME #MedEd #pwME

In honor of Severe ME Day, #MEAction is proud to share the Severe ME Artist Project 2024! We have two viewing options: - All the artwork including the written pieces here: meartistsproject.com - A video compilation: youtube.com/watch?v=Dq6vMU… #SevereMEday #SevereME #pwME

💬 𝗔𝘁𝘁𝗲𝗶𝗻𝘁𝘀 𝗱'𝗘𝗠 𝗲𝗻 𝗲́𝘁𝗮𝘁 𝘀𝗲́𝘃𝗲̀𝗿𝗲 : 𝗶𝗹𝘀 𝘁𝗲́𝗺𝗼𝗶𝗴𝗻𝗲𝗻𝘁. Un quart des malades souffrant d’#EM sont en état sévère❗ En ce 8 août, journée internationale pour rendre visibles les personnes souffrant d'une encéphalomyélite myalgique sévère, 1/6

Tom Kindlon's Pinterest board has 616 pins on #severeMECFS It mainly contains images but also links to videos & articles. ie.pinterest.com/tomkindlon/mec…

Dr Nigel Speight Talk on "ME/CFS in Children and Adults: An Overview" (2024) youtube.com/watch?v=Qi8uzG…

In honor of #SevereMEDay, Solve has partnered with the World ME Alliance to create a guide to safer hospital care for people with Severe ME. Please share it widely across your networks! ow.ly/uXPY50STwxh

Si eres o sospechas ser paciente de #LongCovid o #MECFS y sufres de exacerbación de síntomas post-esfuerzo (PEM/PESE) tu participación respondiendo este cuestionario es de suma valía Entre mejor comprendamos el PEM, mejor podremos apoyarte a ti y a otr@s pacientes Responde y RT🙏

Si eres o sospechas ser paciente d #LongCovid o #MECFS y sufres d exacerbación d síntomas post-esfuerzo (PEM/PESE) ayúdanos respondiendo este cuestionario 👉pacific.qualtrics.com/jfe/form/SV_9E… Apóyanos RT 🙏 Entre mejor comprendamos el PEM, mejor podremos apoyar a los pacientes

Toma 15 minutos participar en esta encuesta que 1) ayuda validar una herramienta esencial de #PEM #PESE 2) provee información propia importante (Yo estoy en 30 en la escala de funcionalidad incluida 🏄🏻). ¿Quién ya contestó? ¿Quién está por contestar? Para echarles porras 🥳