Steven monkman

family man massive giants fan #coyg

[Memorial ME Victims R.I.P. @MemorialME]

Für die am schwersten an #MECFS erkrankten Patienten stellt sich nicht mehr die Frage,
OB sie an dieser Horror-Krankheit sterben,
sondern nur noch WANN.

[Adam @ABrokenBattery]

“We don’t know how to cure many conditions, but that doesn’t mean that this condition [ME/CFS] doesn’t exist… we don’t know how to treat probably 90% of neurological conditions.”

Dr Tarek Gaber, interview at the #MECFS Clinic in Wigan (2024).

[Adam @ABrokenBattery]

Why #MECFS is so misunderstood. A quick history lesson from neurological in the 60s to being reframed as psychological and fear of exercise. Treatments were only withdrawn recently after patients reported harm.

Clip from Zoe Madden-Smith’s award-winning RE:News documentary

[Michael Gordon @TeamKarenGordon]

A disaster for Karen as her Hickman line has broken. We posted an update on our petition on 10 June. To read it scroll down our petition page to UPDATES. Save Karen Gordon From Dying (…)
https://t.co/myZMK0Nolw
Please share
Photo:9/6/26-K with broken IV line having blood
K,H&M

[Carole Bruce @CaroleBruce17]

Save Caroline Roberts’ Life now: A very severe #ME/CFS patient with high mortality risk. - Sign the Petition! https://t.co/T5sjkN2XmK via @UKChange
It’s the same terrible story. Caroline was admitted to hospital last week. The hospital refuses to offer any nutritional support 😡

[Katy B @KatyBruce108]

Please sign & share this urgent petition on all platforms✍️🔁
"Save Caroline Roberts’ Life now:
A very severe #ME #MEcfs patient with high mortality risk."

#pwME #LongCovid #MEAwarenessHour
https://t.co/Pp3F0WriED

[Whitney Dafoe @DafoeWhitney]

A video exploration of the impossible decisions ME/CFS patients have to make, constantly having to decide between two options that will both make our health worse. And how much more difficult these decisions get when they involve non ME/CFS medical needs. As well as thoughts on how to process these decisions…

A more comprehensive essay of these ideas in writing is in the works for a future text post… stay tuned!  😊💙

♿️ audio and text versions on my blog 👇

https://t.co/vejr6PX62D

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#mecfs #LongCovid #ChronicIllness #pwME #spoonie

[Elon Musk @elonmusk]

It is this or death

[Carole Bruce @CaroleBruce17]

Gold standard care for people with very severe #ME Sadly unique. In most countries patients who can are having to fight to be believed, to prove that it’s not all in their heads. Moderately ill patients become severe by fighting for recognition
‘Awareness’ isn’t nearly enough.

[Adam @ABrokenBattery]

“Chronic fatigue is not the only symptom. It is one symptom amongst so many others.”

Dr Ranj explains what ME/CFS is, why the term Chronic Fatigue Syndrome does not reflect the reality of the illness, and why many patients prefer the term ME.

[Whitney Dafoe @DafoeWhitney]

Imagine watching everything you care about in a house that starts to catch fire.  And there’s a firehose one meter from you, but you're tied to a chair and can’t move.  So you have to sit there and watch it all burn.  That is everyday, over and over again, living with #MECFS 💙

[Andrew Green @AndrewG76201347]

We can dream of the day when this happens for #MECFS. Not only a study result showing an effective treatment, but the large number of doctors so excited about it.

[Stefan Arce ME/CFS @stefan_arce]

Im on daily nutrition. No supomgas.
Este soy yo
Estoy severo
Todo me duele
I survive for severe routines rigid.
I have severe tics

[Janet Dafoe @JanetDafoe]

OMF is having a meeting of all the Center directors right after the Invest In ME conference. As we sat down to dinner tonight at the exact time of the beginning of James Strazza’s memorial service, I raise my glass and we toasted the life of James and honored his mother Galen.

[Adam @ABrokenBattery]

#MECFS is a “medical” and a “social catastrophe.”

— Jörg Heydecke, founder of Germany’s ME/CFS Research Foundation.

One patient waited 19 years for a diagnosis. Another said she was told her symptoms were psychological and that she needed to get on with it.

[Adam @ABrokenBattery]

Post exertional malaise (PEM) is the hallmark symptom of #MECFS

It’s not fatigue following activity. It is a dramatic deterioration and worsening of symptoms.

Short video explainer - triggers, symptoms, and management.

Repost for the last day of #MEAwarenessMonth

[ME Research UK @MEResearchUK]

On the 23rd of April 2026, the fourth meeting of ME Research UK’s ‘Researcher Circle’ took place online.

Read more: https://t.co/ffAMDWTuMM

[Chronicillnesswarrior1 ♿️💙✝️💟🇺🇦 @ME_Bev7]

Please sign this petition of a very severe ME patient who has been in hospital for over 2 years. Things really need to change for Karen and @TeamKarenGordon 💛

[Adam @ABrokenBattery]

“This is not a life, it is miserable. So how do I feel? Not even human anymore.”

A 36-year-old woman with severe #MECFS confined to bed, on oxygen and a feeding tube, unable to tolerate light, sound or vibrations. @gw411954

Clip from Swiss TV

[Whitney Dafoe @DafoeWhitney]

Even when ME/CFS starts taking from your mind, you think there’s some limit - something that’s yours, that is sacred and defines you in some way, or is just you in some core way that nothing, including ME/CFS can touch.  But there isn’t.  ME/CFS keeps going and will keep taking…

Read, Watch or Listen to this post on my blog:
https://t.co/AP9bCKDrIp
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#mecfs #pwME #LongCovid #brainfog #ChronicIllness