I’ve got quite a few unread DM’s on here. Unfortunately, I’m so severe I’m unable to have message conversations with people including close family or friends, and I’ve put the below update on my Facebook. Just so anyone doesn’t think I’m being rude and ignoring them on here 🙂

We're a scourge to the system. We don't get up from our beds in a couple of days. We don't do physio. Much to the distain of the physiotherapists. They're the ones who tell the doctors we're well enough to be discharged if we merely stand from our beds. We don't do more each day.

My uncle in Canada had euthanasia because of cancer. He was 80% more functional than I am and he still chose euthanasia because he was no near "normal". He called us all one day to say his goodbyes and then left us. I don't even have that choice. #pwme #mecfs #longcovid

Sometimes I’m overwhelmed by the urge to just live and to have my body work like it used to. The grief is immense. I can’t accept this life, in one room, one bed, unable to do anything for myself. Do I have a chance at some form of life after years of being severe? 😢

Thinking how I never got to say goodbye to my work friends, my dance class... With M.E, you don't know at the start what you have or that you're going to be ill FOREVER. You just disappear from your life and never return

I live alone in my house. I couldn’t have it any other way as I need 24/7 silence. I pay my mortgage, all the bills and my daily carers. Im so severe I havn’t left my bed at all in 18 months, am spoon fed and can only speak for 10 seconds every hour. I served my country for 10

Zinc - worth supplementing at this level?

Crazy I know, but my identical twin brother (who was also a police officer), has the exact same very severe ME/LC as me. We got Covid at the same time, and have had the exact same progression deterioration and symptoms/quality of life, virtually unable to speak/move like me (you

If only the public/dr’s knew this👇

Grape seed extract Damn. Very unwell & high temp. Poss C-19 😩 If test positive, does grapeseed extract actually help? If so, what would be the recommend trial starting dose for someone very severe ME/LC who cannot tolerate any supplements or drugs?

Dear Wes Streeting & Ashley Dalton MP My 20yr old daughter Alice Fricker💘 has been bedridden for 9yrs with Very Severe ME. She hasn’t lived a life since she was 12yrs old. Please #FundThePlan #ThereForME Jayne Kirkham MP for Truro & Falmouth #SevereME #pwME

The gen pop doesn't know what Long Covid is. Long Covid is what happens when the immune system continually misfires after COVID-19, causing progressive compounding damage and dysfunction of every system in the body, ranking among the worst quality of life illnesses next to ME.

Very lucky to have parents who keep up-to-date with the latest campaigns and research. I didn’t even know my mum knew about these videos on X until she sent it to me 😅

Messages from my friend who’s dying of very #SevereME. She’s only in her early 30s & has been ill for 15+ years. #MyalgicE is not ‘chronic fatigue’, it’s a very serious often progressive neurological disease which can be fatal in its most severe form. #MEAwarenessHour #MECFS

From that, to this in the space of 10 months (100% bed bound with carers) is wild. The speed of my constant baseline decline is like a runaway train, and now all I have left to ‘give in’ and reduce my limits further is breathing, swallowing and looking at my phone a few times a

Last year, following the inquest into my daughter's death from ME a minister said the govt was “committed to funding high-quality research”. Since then? Nothing. No more research funding. No sign of the NHS delivery plan. Today is World ME Day. Time for Wes Streeting to step up.