Chronicillnesswarrior1 ♿️💙✝️💟🇺🇦
@fionangreg
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Wife, mum, Severe ME, MCAS, LC, MALS, EDS, POTS, dogs, peace, love & forgive ❤️ #Chronicillness #takingthepip @MEWarrior1.bsky.social
Bournemouth, England
Joined February 2014
My Story……. I wasn’t diagnosed by our county’s head of ME/CFS services despite seeing him privately in 2012. He said I had fibromyalgia which I agreed but I knew that my fatigue began after an infection along with several viruses inc Epstein Barr.
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This 👇.
Also, now that we have genetic evidence #MyalgicEncephalomyelitis is a neuro-immune condition, will @NIHRresearch and @DHSCgovuk.continue to waste millions of pounds studying behavioural treatments for people with ME? @wesstreeting @The_MRC.
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You Are Not Alone.for friends who feel the silence.#SevereMEDay . I have watched the quiet exit—.not with slammed doors,.but with silence. A message unread,.a promise unkept,.a presence that once felt permanent.now fading like breath on glass. Almost everyone from before.has.
I am constantly overwhelmed by the grief of people distancing, ghosting, not turning up or whatever way they’ve chosen to leave my life. Almost everyone from before is gone now. Only my friend from my whole life with me/cfs a week or so away checks in and they ofc.
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So, the picture on the left is me yesterday enjoying my birthday but in severe pain due to hEDS. The picture on the right is me crashed today. I desperately want more sleep but I can’t. The third picture is my heart rate activity whilst I was sleeping! But let’s put this all down
Simon Wessely has had his say about the @DecodeMEstudy in the U.S. journal Newsweek. Sadly and predictably he doesn’t back down on his former stance, still trying to muddy the waters.
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Think this is my favorite post so far!.
We are not liars. We are not depressed. We are not anxious. We are not thinking the wrong thoughts.We are not work shy.We are not benefit frauds. We have #ME .We spat into test tubes and filled a detailed questionnaire to prove we were ill. The results 👇.
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RT @NickyProctor: @LeedsHospitals .Please, if you work at Leeds Hospital, ask why this patient is being so badly treated they need a petiti….
change.org
The NHS must take measures to STOP Dill deteriorating
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IT’S A THING!!! 🧬🎉🎉🎉🎉🙌🙌🙌. ME- Myalgic Encephalomyelitis is REAL! . Let’s toss away the CFS part and call it as it is!. And up yours Michael Sharpe, @WesselyS , Peter White and Trudie Chalder!!. This is a massive start and I only read this bit of my email 😂
Clip: On Channel 4 News, Prof Chris Ponting tells a participant that the DecodeME study found eight genetic differences in people with MECFS — demonstrating that it’s a biological, organic illness.
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Woo hoo 🙌 .Let’s hope 🤞🙏.
Big news #pwME! Deep breath, prepare yourselves! The initial DNA results from the @DecodeMEstudy will be available in the next few days. Emails will be sent out around 7pm on Wednesday 6th August & results will be published on their website at the same time.
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Just remembered 🤯😶🌫️.I’ve got those first aid ice packs. You pop the inside of them and it turns cold 🙌🙌🙌🙌🙌.
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Wish I had someone here to pop downstairs to get an ice pack for my neck. It’s a toss up between pain or increased fatigue 🤷♀️.Hubby is in London again and carer doesn’t work Tuesdays or Thursdays for me. I feel I’m increasingly finding it harder to get up off the bed to get.
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This is utterly heartbreaking. Dill’s voice cut through me—desperate, malnourished, in pain. I heard it all. And yet, all I can do is sign a petition and write to the hospital. Thank you, @MEAssociation, for sharing her story. My only concern is this: you’re asking desperately.
1/2 Petition: The NHS must take measures to STOP Dill deteriorating. "Dill became severely unwell and was hospitalised in August 2024. They have been kept in hospital since then, against their wishes. The hospital is not equipped to meet the complex needs associated with severe
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He Knows My Ache.for the moments missed, and the ones still dreamed. Today the sun pours down on their walk,.and I lie here, still as stone—.a mother aching for coffee spoons.and lace dresses not yet chosen. I smile with tears tucked under my ribs,.jealous and pleased,.wishing.
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If anyone needs cheering up today for whatever reason then these are for you!
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RT @HewynNick: Hi good people. My granddaughter, Freya Carol, was born on the 29th July and last night had a bleed on her brain so she’s in….
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We’re all rooting for you and are here for anything you need. 💙.
We are very grateful for the overwhelming support from the ME community, it honestly means such a lot. For now though we need time to digest what's happened, to regroup and to catch up on sleep.
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Just seeing @rhirhiarhii name on another post reminded me that my bed of nails has arrived. Oooh it’s a bit sharp and this is the beginners mat of torture. sorry I mean healing 🧘♀️ .I do actually like it and I think it did help with the pain I was in yesterday. Either that or
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Edit:- his manager phoned and he’d obviously listened to our call. He apparently said bye not that I heard. Manager said his tone was abrupt at the end and so he’s going to talk to him. 🤷♀️ Mmm 🤔 I’m being cynical but will that conversation with this lad really happen?.
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