Eimear Forde

Mum of three children, very severe ME, wish I could be part of the world and their lives, not a prisoner in one room, powerless.

[Eimear Forde @EimearForde2]

@harrypetsanis Not easy to do!

[Eimear Forde @EimearForde2]

@DafoeWhitney U r in a very safe cocoon.
I've found this a little upsetting. Leave it be.

[Eimear Forde @EimearForde2]

@DafoeWhitney Forgiven by a higher power? Remember u are surrounded by people with a deep understanding of your illness,we all haven't that luxury. I've had to go thru a divorce whilst v severe I had no choice. U are privileged n some ways although I know ur suffering is horrendous.

[Christoph Ströck @cstroeckw]

PEM occurs post-exertion due to physiological abnormalities tbd, not metaphysics. Without biomarkers to distinguish actual PEM from harmless discomfort, the precautionary principle applies. The trigger threshold for PEM doesn’t stop at a level you or anyone else deems ‘logical’.

[Christoph Ströck @cstroeckw]

Millions of people globally must be walking around with a diagnosis of atypical bipolar disorder when, in reality, their 'ups and downs' are phases of 'PEM and adrenaline.' These people with #MECFS are getting harmed by outdated medical dogma. Medicine must catch up.

[mary dimmock @marydimmock]

From the article regarding studies of PEM,
"In these reports [on PEM] and my own experience, effort is never impaired. It is the ability to recover that is broken."

Begs the question of how @NIH and @NINDS got this so wrong!

[Eimear Forde @EimearForde2]

This

[Paula Knight @Paula_JKnight]

I think there's a misunderstanding of what 'exertion' is in the uninitiated.
For healthy people, exertion might be running a 5K.

For somebody like me with very severe ME, it's speaking, being washed by someone else, chewing and digesting.
#pwME
#myalgicEncephalomyelitis

[Martin @pausedME]

The suffering of #MECFS patients over the past decades could fill hell itself.

And yet, we are still fighting for recognition and treatment.

It’s incomprehensible and leaves me speechless every single day.

[Eimear Forde @EimearForde2]

@DafoeWhitney I can't crash at the moment cos even the slightest sound anything sets off adrenaline what do I do v severe?

[Eimear Forde @EimearForde2]

@swastrosarah @DafoeWhitney Adrenaline Sarah I shud not be on here, I can't crash and I so need too xxx

[Hope 4 ME & Fibro NI @hope4mefibroni]

Join us for special screening of ‘Dialogues of a Neglected Illness’ with M.E. Expert Dr. William Weir Q&A pls share
#MyalgicEncephalomyelitis #LongCovid @SouthernHSCT @BelfastTrust @WesternHSCTrust @NHSCTrust @setrust @niahealth @mikenesbittni
https://t.co/ITd8gnpA87 @Eventbrite

[Dan Wyke 🦠➡️🧠🔥 @Dan_Wyke]

People with #severeME are dying at an astonishing rate - usually either from malnutrition or euthanasia/suicide - and yet some doctors still feel entitled to say stupid shit like, "I don't believe in ME." #MedTwitter #MyalgicEncephalomyelitis

[Eimear Forde @EimearForde2]

@Naomi_D_Harvey @tenacious_mumma I find that impossible to do sadly. So much love 2 you both x

[Eimear Forde @EimearForde2]

#severeme the noise sensitivity is insane, all symptoms so horrific I can't explain, sounds like hyperbolus to healthy folk.

[Robert Saunders (aka McMullen) @RobertHMcMullen]

“Now, more than ever, we should heed Boothby-O’Neill’s words: ‘My only hope lies in biomedical research, and adequate funding for this requires the medical establishment to set aside the inaccurate idea that behavioural treatments can cure ME.’” https://t.co/R4HD78yxAx

[Eimear Forde @EimearForde2]

M.E has taken almost everything from me. My heart is broken 💔 into a million pieces ##millionsmissing

[Valerie Eliot Smith @ValeriEliotSmit]

#MaeveInquest
Heartbreaking evidence from Maeve's parents this morning.
Clear indications of systemic failures by health/social care bodies leading to tragic consequences.
#SevereME + ignorance kills. Indefensible.
[Painful echoes of my own experiences both in/out of hospital]

[Erin M @ErinAPN1]

Lying in the bed next to my #LongCovidKid daughter’s hospital bed, listening in through headphones to Maeve Boothby O’Neill’s inquest.
We’ve been over a year here at this hospital. Listening to my daughter’s feeding pump whir. Knowing she’s paid already an incalculable price for access to nutrition and hydration to keep her alive. Been terrified. Threatened. Extreme psychological abuse and gaslit by those purporting to act in her best interests. Like so many others like her. As Maeve was.

Hearing @swastrosarah’s fight for her daughter - a fellow “angry mum”. Being told she’s being anxious. There’s nothing wrong. The bloods are fine. Watching a slow moving disaster, a tragedy in freeze frame, be metered out upon her daughter. And no one heeding her call.

I used to think - perhaps I’ll unravel a sign on the busiest bridge in my capital city - “someone please help my kid”. It is instinct to save your child.

Thinking how today Sarah is still gritting her teeth and fighting through against the odds. Unravelling the sign for us.

Feeling such sorrow but incredible gratitude; she is fighting not just for the memory of her only child, Maeve, but for us.

Thinking of all those “angry” mums world over, fighting fiercely with every bit of their being, for their children. Knowing hospital notes say the exact same about me, and so many other mums. Solidarity to the “obstructionists”. We must triumph one day soon.

For you, Maeve. The girl who the world misses out on now. How I wish I might have met you.

#maevesinquest
#pwme
#LongCovid
#MECFS