#PWME

Arlette

ArlettePoolen

And we're on for part three of #ME101 !Part three: science and 'science'To (re)read part 2:https://twitter.com/ArlettePoolen/status/1335388274379137025?s=19 The science in ME can be divided in two parts: biomedical research and

It'sME(Jaime)

exceedhergrasp1

My colleague at #MEAction, @TillmanAdriane just quoted the new @edyong209 article: "The physical toll of long COVID almost always comes with an equally debilitating comorbidity of disbelief..." (1/7) #longhaulers #longCOVID

Alison’s head

arisonsned

Some #pwme are upset the #longcovid clinics are opening. I’m not. I remember the CFS clinics opening as a patient of Prof Pinching. He was hopeful it would be a

Dr Ben Marsh 💙

bendymarsh

To try & understand & manage #LongCovid #postviral condition without including & seeing #MECFS & #LongOtherVirus as likely at least v similiar process is naive & short-sightedWhy would post #COVID_19

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

Michiel Tack

MTackCVS

1) New article on severe ME/CFS by the researchers who manage the UK ME/CFS Biobank. They visited a cohort of nearly 100 patients housebound by ME/CFS and wrote down their

#MEAction Network

MEActNet

Intensely in-depth article @moisesvm!"Many people - long-haulers, those with ME/CFS, scientists & doctors - worry about the long-term consequences of tens of millions of people infected with a virus that,

Naomi Chainey

GnomesChainey

I am getting quite fed up with doctors or people in medical professions telling people with #MECFS that it is our responsibility to calmly educate *them* on our illness, rather

It'sME(Jaime)

exceedhergrasp1

Hey, y'all! It's That Season again...It's open season on pwME!Why?Positive results from NICE in the UK!If you've played the game before, you know how it goes:Good science news stirs the

Hannah Davis 🦈

ahandvanish

One of the most jarring and upsetting things I've learned as part of this #longcovid journey is the entire world of post-viral and post-infectious illness. One of these, a neuroimmune

Dr Mark Guthridge

Dr_M_Guthridge

1/ How neglected is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome research?@NIH funding for ME/CFS in 2017 was ~$25millFair funding relative to disease burden should be ~$350millThat means #MECFS research was short-changed

Emily Bazalgette

EmRoseBaz

Great @newrepublic piece on #LongCovid & #MECFS context, but let's be cautious praising UK's response to Long Covid. Yes, our centralised system excels at rapid infrastructure. We can quickly create

Lucibee

_Lucibee

What role should the public play in science? - Science Weekly podcast @iansample interviews @profmsharpe about the #PACEtrial https://www.theguardian.com/science/audio/2018/nov/02/what-role-should-the-public-play-in-science-science-weekly-p

Hannah Davis 🦈

ahandvanish

Yay our #LongCovid paper is online!!!https://www.medrxiv.org/content/10.1101/2020.12.24.20248802v2While we had a few thousand more fill in the survey, this paper focuses on 3,762 #longhaulers (sick >28 days) who got sick between Dec-May

Hannah Davis 🦈

ahandvanish

I just crossed the 4 month mark of being sick w' #COVID19. I am young, & I was healthy. Dying is not the only thing to worry about. I still

Jennifer Brea🦒

jenbrea

Folks concerned about my advocacy for structural, neurological diagnoses, for #MCAS and connective tissue disorders, or for "#MEspine"––I really do want to understand what is at the heart of this.

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