#severemecfs

[myalgicencephalomyelitiscfstom]

Bio Lizzy H @hopefullizzy

30y/o creative, with complex health issues ME/CFS biomedical research. Passion for the wild, for kindness, and helping all people have a voice. Co-author

[myalgicencephalomyelitiscfstom]

Sympathetic BBC article on severe ME:

'I'm too tired to chew food but still can't get care for my ME'

Why is there poor care for ME?

What is NHS care like for people with severe ME, also known as chronic fatigue syndrome?

Some extracts:

—

‪“Maeve Boothby-O'Neill's final days were harrowing. The 27-year-old was confined to bed all day, unable to chew food and no longer able to sit up - she was severely ill with myalgic encephalomyelitis, or ME, and as a consequence severely malnourished”‬

— “People with severe ME can be in constant pain, have hypersensitivity to touch and light, feel extremely weak and sometimes have difficulty speaking or swallowing. There are many different symptoms which cause significant disruption to everyday life”

—

“During the inquest into Maeve's death, the coroner Deborah Archer said it became clear to her that there were no specialist hospital or hospices, beds, wards or other health care provision in England for patients with severe ME”

—

[Person with ME] “‘says many people are stuck in the past, believing that the condition is purely psychological.

‘It's the stigma that we're all lazy and we just need to exercise ourselves back to wellness that has stopped us getting the help we need’"

[myalgicencephalomyelitiscfstom]

[myalgicencephalomyelitiscfstom]

[myalgicencephalomyelitiscfstom]

August 8 = #SevereMEday #severeME #SevereMEday #SevereMEday2021 #SevereCFS #SevereMECFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #MyalgicE #PwME #MyE #MEeps

[myalgicencephalomyelitiscfstom]

August 8, is Severe ME Day.

While not everyone who has Severe ME would fit the description in the image (there are different severities within this subgroup), many tragically would 😢