#MEcfs

Nicola Jeffery

NicolaCJeffery

Whilst members of parliament like Matt Hancock and Jeremy Hunt praise Simon Wessley today for his #MentalHealthAct reforms for autistic people, can I remind you that this is the same

Dr Mark Guthridge

Dr_M_Guthridge

1/ The problem with Myalgic Encephalomyeltis/Chronic Fatigue Syndrome #MECFS is that it seems so ridiculous that exercise could actually make patients worseHow can exercise be so bad for #pwME but

Physios For ME

PhysiosForME

Awareness of post exertional malaise is so key to preventing harm and yet we are still seeing obvious ignorance from medical professionals, or missed opportunities to spread the word when

Dr Michelle Bull 💙

MichelleBull4

Great to see guidance about cardiac symptoms including myocarditis when returning to physical activity for patients post #COVID19 as have been hearing lots of questions about this. However IMHO there are some

Dr Ben Marsh 💙

bendymarsh

@BBCBreakfast @TVNaga01 Re your #LongCovid coverage this am, spec. interview with Dr Gerada & Prof Garner @ 0839amPls be aware advice given re recovery with increasing exercise esp. can be

Hugh Lewis

ProfHughLewis

For #MEawarenessHour this week I wanted to address something that happens a lot: getting asked how I am. The answers I give are simple & often given to avoid embarrassing

Ellena Deeley

EllenaDeeley

A medical lesson in the failure to listen to the patient’s voice in CFS/ME: on the need for co-production in CFS/ME (and #LongCovid ) services #meawarenesshour #pwme #MECFS The new

Peter White

mediumwhite

I held back from commenting overnight to chew it over, but I am still saddened by comments during a presentation I attended yesterday by Prof @trishgreenhalgh & @CIHR_IMHA.The topic was

Undercover Autie

UndercoverAutie

Short series about the scandal of how people with ME are treated in the U.K. and beyond.(@theslowlane_ME’s post reminded me that I never shared these insta stories on twitter)If you

the otter of my own fat

tommyinboots

i said recently that i'd make a new thread about why anyone who cares about disability justice or social justice in general should stop using the random-caps meme, so here

Tom Kindlon

TomKindlon

[Thread]Nice, thoughtful article“Pandemic social isolation provides glimpse into the everyday realities of #chronicallyill patients: The COVID-19 pandemic is teaching the world a lesson in empathy for those who have had

Amy Small

amyismall

Let's talk about #pacing. When I got sick with #longCOVID I spoke to a rehab physio who told me I had to pace. I thought this meant "slow down" but

ME Advocacy Network Australia (MEANA)

MEAdvNetAu

Thank you to @RichelleHunt & @Warwick_Long for this discussion on living with #mecfs. Sadly the program also demonstrated how ingrained it is in the medical profession to label illnesses medically

Jennifer Brea🦒

jenbrea

Petra Klinge’s talk on tethered cord syndrome blew my mind. It‘s given me a deeper understanding of how tethered cord syndrome might play a fundamental role in the patholophysiology and

Tom Kindlon

TomKindlon

[Thread]PD White has just co-authored a #MECFS paper which has a dubious, wishy-washy recovery definition: not a complete remission of symptoms & a return to premorbid functioning" but where basically

Jennifer Brea🦒

jenbrea

Dear medical profession: please get your act together on this. It’s been a few hundred years. You’ve had more than enough time.@AmerMedicalAssn needs to speak out against this behavior, for

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