#MECFS

Jennifer Brea🦒

jenbrea

We should take some of the most replicated findings in #MECFS and study them in #longCOVID patients. Some of these findings, if also present in #longCOVID, *could* potentially imply avenues

Amy Proal, PhD

microbeminded2

This is an incredibly important preprint to inform #LongCovid. Among many analyses, the team recruited 4 patients w/ prolonged + recurrent olfactory function loss after #COVID-19 (time from first COVID-19

#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,

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

Harry Paul (he/him)

_HarryPaul_

1/ Lots of news lately about #LongCovid. It will get more frantic as new data comes out. Some physicians with huge platforms talk about "not running too fast!"The medical narrative

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.

Jennifer Brea🦒

jenbrea

My husband and I both got sick with what we think was #COVID19 in late March. It took us each 2.5 months for our symptoms to completely resolve. It may

Ivana Fulli

DrFulli

#LongCOVID19 thread.Even only #chronicSmellingLoss #Anosmia can be devastating emotionally:Affected people loose any enjoyment in domains like food, ignore bad smelling warnings of many hazards, can become anxieux about body odours

Pleuni Pennings #BlackLivesMatter

pleunipennings

This week I learned about ME/CFS when I sent a 2-line email to my PhD advisor Joachim Hermisson. Me: “Hope you & your family are well. Could you send me

Alison Sbrana

AlisonSbrana

Watching day 2 of @NIAIDNews #LongCovid workshop. Right now: breakout sessions. I'm watching the neuro breakout session, led by Dr. Komaroff. @ahandvanish is there representing #LongCovid patients with @itsbodypolitic. Tune

Julie Rehmeyer

julierehmeyer

1/ Paul Garner seems to be describing some form of brain retraining in claiming that positive thinking cured him of ME. He's extrapolating hugely from his own, n=1 case to

Laura Miers

LauraMiers

My body is no longer compatible w/the grueling & unrelenting pace of American life. I ran myself ragged. How are we are going to bounce back as a nation with

Dr Elisa Perego

elisaperego78

.@felicitycallard and I have a new paper on #LongCovid We show how patient activism and research reshaped #COVID19 well ahead of conventional science Patient-made Long Covid changed COVID-19 (and the

Athena Akrami

AthenaAkrami

And here is the preprint: "Characterizing Long COVID in an International Cohort: 7 Months of Symptoms and Their Impact" Special thanks to thousands of you who participated in our study

Julie Rehmeyer

julierehmeyer

THREAD: I wrote a piece for @Open_Notebook offering advice to science journalists covering contested illnesses, coming out of 15 years of being both a journalist and a patient. Here are

Keiko

keikoinboston

Well, after more than a decade of trying to get doctors to tell me what my “unknown pain syndrome” is, I was officially diagnosed with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome)

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