Alice turned 20 today, this is her 9th Birthday bedridden with #verysevereME
Alice finds it hard to fathom how she’s 20 when she still feels like she should be 11. Age 11 was the last time she was “living” #pwME #dontforgetME #Meawarenessday #ME #MyalgicEncephalomyelitis
Latest update from yesterday (4/04/24)
Petition
change.org/p/save-millie-…
Fundraiser
justgiving.com/crowdfunding/b…
#MilliesevereME #verysevereME
#pwME #saveMillie
Lying flat, doing absolutely nothing. With a HR of 215. However, Alice has been awake for OVER 140hrs, could this be making it worse? 🤪😭 #VerySevereME #PoTS #vasculardysfunction #pwME #NEISvoid #insomniac #tachycardia #hEDS #severeME
For my dear friends Els, Sophie, Retha, Céline & Ingeborg (and many more) who all died of ME in recent years 💙. Still miss you every day! 😪
#MEAwarenessDay #WorldMEDay #ExposeMENow #VerySevereME #SevereME #MyalgicEncephalomyelitis #MillionsMissing #pwME
Triggerwarnung #Suizidversuch #verysevereme #MECFS #Verschlechterung #Immunadsorbtion
Werde nie vergessen, wie ich mich in dem Moment gefühlt habe. Die Fahrt nach Berlin zur Immunadsorbtion. Das Wackeln des Autos, die Reize trotz Schutz, die Angst vor der Immunadsorbtion
Thank you Dr. Sabine Hermisson for your powerful and effective presentation of extreme and very severe ME/CFS. 💙
#UniteToFight2024 #cfsme #mecfs #verysevereme #globalvoiceforme #millionsmissing #meawareness #MEAwarenessWeek
Days, weeks, yrs in bed. No talk, no light, no sound, constant #pem and #livinghell I miss my kids💔🥀 #mecfs and #cci took it all away. #deathwithoutdying is all what is left. Love/A
#verysevereME #pwME #Millionsmissing
12th May M.E. Groundhog day
#myalgicencephalomyelitis #pwME #MillionsMissing #MECFS #MEwarrior #SevereME #VerySevereME #MEawarenessmonth
Please feel free to share my poem 'M.E. Groundhog Day'
#MyalgicEncephalomyelitis #MEAwareness #MEawarenessmonth #MEAwareness Week #MillionsMissing #pwME #SevereME #VerySevereME #meinternationalawarenessday #WritingCommunity
This is the last text my partner with #verySevereME sent me. He is the best 🥰.
(response to a needy voicenote from me crying cos of a lack of support from work + family - & sb had hidden my work laptop whilst I was off w. stress due to partner's sudden decline)
#MEAwarenessDay
DAY - 10 NORMAL
I've been ill for over 20 years and find it hard to recall how I felt before then.
It's a lifetime of suffering 😞.
How long have you been ill?
#MyalgicEncephalomyelitis #MEAwareness #MillionsMissing #pwME #MEwarrior #SevereME #VerySevereME #MEAwareness month
What would YOU - as a #pwME or a carer/family member - like the public to know about #VerySevereME ?
As the time slot for the presentation is extremely limited, please feel free to add your comments here. ⤵️
#UniteToFight2024
A new poem for #MEawarenessmonth
WEARY because that's about how I feel 😩
Do you? Feel free to share
#MyalgicEncephalomyelitis #MECFS #pwME #MillionsMissing #MEAwareness #SevereME #VerySevereME #longcovid #WritingCommunity
Please sign & share these two petitions for Millie & Karen!!
Both are in hospital, being harmed & mistreated, because their doctors don't believe in Myalgic Encephalomyelitis.
Millie ow.ly/xKYa50QIj44
Karen change.org/p/save-karen-g…
#VerySevereME #MECFS #pwME #MEAwareness
DAY 6 - I WANT TO GET BACK TO LIVING
Most people who suffer with M.E. will tell you that they are no longer living but just surviving.
#MyalgicEncephalomyelitis #pwME #MECFS #MEAwareness #MEwarrior #MillionsMissing #SevereME #VerySevereME #MEawarenessmonth
Pacing and knowing when to stop and rest is hard in M.E. If we are to avoid post exertional malaise or a relapse, this I believe is the best way to manage the illness.
#MyalgicEncephalomyelitis #MEawarenessmonth #MEAwareness #pwME #SevereME #VerySevereME #MillionsMissing
