Martin
@MartinMECFS
Living with the immuno-compromised neurological condition Myalgic Encephalomyelitis (ME/CFS)
Clip from David Tuller’s interview with Professor Brian Hughes about his new book, Psychology’s Quiet Conservatism. He explains how the psychogenic framing of illnesses like #MECFS and #LongCovid has shaped care and policy, often as a way to cut costs.
Interview with Brian Hughes, professor of psychology at University of Galway, Ireland, about why the psychological/psychogenic view of ME, CFS, Long COVID, etc is so regressive and leaves people without medical care: youtube.com/watch?v=0K75eN…
youtube.com
YouTube
Interview with Brian Hughes, professor of psychology and University...
Who writes on Substack? Looking to follow people who write about #MECFS in a raw, personal way. Brutal honesty, hidden feelings, confessions. Not education or facts. More about the internal emotional experience of having this disease Here’s my Substack substack.com/@elinasamuel?r…
I am chronically ill. “Trying harder” will not make me better.
Does anyone in Greece happen to know any good ME/CFS or Long Covid doctors for my friend Katiana? Long shot, I know. 😕
chronic illness is crazy like wdym i’m never getting better
If you are able to and interested in funding research into ME/CFS, Long COVID, Lyme, MCAS, and alike diseases - we want to talk. Please send me a DM or email ([email protected]) Funding strategically used with a high research/£ ratio is integral to solving this disease.
1) Let me tell you a story about medical gaslighting and ME and what happens when doctors don’t understand the illness they’re treating. It happened to me in a neurological rehab hospital after being in the neurological department in Turku University hospital (TYKS).
Persistent fatigue that is not alleviated by rest is one of the cardinal symptoms of #MECFS. It may seem trivial and is often cartooned as “being tired,” but the fatigue is profoundly disabling—far worse than in most illnesses—and is only one of many symptoms. #MEAwarenessHour
Have you taken LDN for LC or M.E? If so what was the outcome?
Ten months ago I sat down for my first online CBT session to address my severe agoraphobia and health anxiety. 30 minutes after the therapy session ended my life changed completely and I've been trapped in a suicidal, emotionally distressed state ever since.
theguardian.com/science/audio/… 20 min listen. Very good - @NickyProctor speaks brilliantly for all of us with #MECFS
theguardian.com
Can science crack the mystery of ME? – podcast
Madeleine Finlay speaks to science editor Ian Sample about a new study of how genes affect people’s chances of developing ME/CFS, and to Nicky Proctor who has ME and took part in the research. She...
Clip from The Guardian’s Science Weekly podcast: @NickyProctor describes how doctors dismissed her #MECFS as psychological, before she crashed completely and became mostly bedbound, unable even to hold a conversation.
Almost two years ago, our beloved, brilliant #bethmazur ended her life while visiting me. The grief has softened with time, but the impact has reshaped me. I've written about it here: jrehmeyer.substack.com/p/holding-what…
ME/CFS, the illness that punishes you for trying desperately to treat with meds, whos only contribution is to make you feel much worse. #pwme #MECFS
accepting that I am sick with Myalgic Encephalomyelitis must be the most challenging, saddest, terrifying, painful, lonely, scary, worst thing that has ever happened to me in my life
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