Danielle Peruffo

Ecologist interrupted by myalgic encephalomyelitis.

[Danielle Peruffo @danni_peruffo]

#MEawarenesshour
Please sign up if you have ME/CFS, live in the UK, and are aged 16 or over

[DecodeME the ME/CFS Study @DecodeMEstudy]

Great to see so many spreading the word - thank you!

There are various ways to take part in #DecodeME:
-Take part online
-Fill out the questionnaire via proxy
-Request a paper version
-Arrange telephone support

Please also help us reach out to #pwME that aren’t online.

[Danielle Peruffo @danni_peruffo]

@Annakwood 🫂

[Dan Wyke 🦠➡️🧠🔥 @Dan_Wyke]

In brief the coroner ruled that the cause of Maeve's death was "malnutrition as a result of severe Myalgic Encephalomyelitis". She did not find negligence played a part. Disappointing no mention was made of the lack of training or hospital protocol for severe ME. #MaeveInquest

[Dan Wyke 🦠➡️🧠🔥 @Dan_Wyke]

9 August

1pm @drclairetaylor on @BBCWorldatOne hopefully 🤞

2pm #MaeveInquest

7pm Dr William Weir on @Channel4News

#MyalgicEncephalomyelitis #LongCovid

[ME Association @MEAssociation]

“I’ve had ME for 31 years and I have needed to be tube-fed for the last 12 years. I am existing, not living.”

#pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #SevereME #SevereMEDay #SevereMEWeek #SevereMEWeek2024 #SMEWeek2024

[Julie Houston @JulesAHouston]

Thinking today of Carla & Karen and their families, while they remain in hospital suffering unimaginable horrors. #SevereMEDay #RadicalChangeForME #SaveCarlasLife #SaveKarenFromHarm #EndMalnutritioninME #MedicalNeglect
@PCCC90 @TeamKarenGordon #Myalgicencephalomyelitis

[Tom Kindlon @TomKindlon]

On #SevereMEday (Aug 8), I remember my friend Ruth Nolan from Glasnevin, Dublin who has spent 3 decades bedbound with #SevereME

For 15+ yrs she has had #VerySevereME: she's only able to have a few very short conversations & very little cognitive/mental stimulation☹️
#MEcfs #PwME

[Robert Saunders (aka McMullen) @RobertHMcMullen]

“It was a blunt refusal to treat an acutely ill young woman — in my view it was deeply discriminatory. Had Maeve presented with those symptoms but with a diagnosis other than ME, I believe she would have been treated very differently.”

#MaeveInquest

[PolyBio @polybioRF]

PolyBio Research Foundation is excited to announce a $1M donation to UCSF.  The donation will allow the UCSF LIINC team to study #ME/CFS patients with advanced technologies, several of which have never yet been used in the field: https://t.co/wkDiUu58ri

[Ishbel Frazer @ishbelfrazer]

"Although her patient was in excruciating pain in her final weeks, Shenton revealed she was unable to give her the strongest analgesics because social services were considering whether to seek a court order to admit her to hospital against her will. https://t.co/eY7oqNAw7E

[Hannah Davis @ahandvanish]

Incredible, emotional news - The Long Covid Research Moonshot Act has been introduced by Sen Bernie Sanders, asking for not just $1 billion/year in research funding for #LongCovid for 10 years, but also funding for care, clinical education, public awareness, monitoring, & more 🥹

[FionaPWME @fioname.bsky.social @FionaPWME]

Wonderfully clear & succinct explanation of #MyalgicEncephalomyelitis
#mecfs by @exceedhergrasp1. One to share widely 😊

https://t.co/C2N9JI37Va

[@OT_Skiff/Helen @OT_Skiff]

Yesterday I found out that #DWP have not awarded me anything #PIP There really are no words to sum up how it feels to have your whole life ruined due to illness and disability caused by #LongCOVID #POTS #MECFS #TeamClots #ChronicMigraine for some stranger to say this isn't enough

[World ME Alliance @WorldMEAlliance]

Support safer hospital care this #SevereMEDay, August 8th 🏥

This year, we join organisations across the globe to spotlight the urgent need for safer hospital care for individuals with Severe Myalgic Encephalomyelitis (ME).

Learn more 👇 https://t.co/wGQYMR82OI
#SevereME #MECFS

[Katy B @KatyBruce108]

#MaeveInquest
“The medical orthodoxy is that #ME is a behavioural problem or a psychological illness, and that belief is deeply rooted in @NHSuk despite growing scientific evidence that it is a physical illness." -@TimesONeill

https://t.co/4jBcu7x0No

[Paul Keeble ME/LC @PaulRKeeble]

Maeve did everything she could to survive, S did everything she could to help her. M died without the tube feeding she needed to survive. Maeve had good mental health. All she had was ME. She did not want to die.
#MaeveInquest

[Matthew Dalby @MatthewJDalby]

We shouldn't accept the NHS killing patients just because they have an illness doctors are prejudiced against.

[Janet Dafoe @JanetDafoe]

Is most definitely true. He would be dead

[sarah @swastrosarah]

Preparing for the inquest into the death of my only child from medical neglect of #VerySevereME is soul destroying.
20 witnesses to represent an entire hospital & local government social services.
Only 2 understand pathology of ME poses a real risk of death from malnutrition.