#MEcfs

Julie Rehmeyer

julierehmeyer

One of the biggest challenges #mecfs has faced is that there isn't a tidy story to organize one's thoughts around. "Fatigue" has been offered up as the story, but it's

Not Just Tired

Not_Just_Tired

1/3 As many who follow me will know, I have focused on finding gratitude & joy in each day over the last 3-4 years. I would say I have an

Simone

PhoenixMe_

Disappointing to see such misinformation about #mecfs touted by Dr Norman Swan on yesterday’s episode of the coronacast podcast. His comments about long-COVID & ME/CFS lasted less than 1 minute.

Mary-Jane Kohler 🌊

TruthAbout_ME2

I wish that #pwME would be more aware of how their words could affect #Covid #longhaulers. Many Covid patients are getting close to the 6 month mark & are taking

Michiel Tack

MTackCVS

1) Prof. Karl Morton from Oxford University gave an interesting talk yesterday at the MitOX Conference 2020.Two findings caught my eye... 2) First, in their Polish cohort, it was mostly

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

Maija Haavisto

DiamonDie

Today is #SevereMEday. There is a reason why it's separate from the general #mecfs day (May 12). Severe ME is an extreme, torturous illness, causing sufferers to be bedridden, most

Nora Helfand

nhelfand

Today, @NICEComms granted #LongCovid patients a dignity that #pwme (people with #MECFS) have fought for and been denied by NICE for years. 1/https://twitter.com/bmj_latest/status/1285542552700178438 BMJ’s highly misleading article above m

Tom Kindlon

TomKindlon

Press Release from NICE about its new draft #MECFS guidelines that are out for consultationhttps://www.meresearch.org.uk/nice-guideline-update-press-release/“The draft guideline also highlights the importance of ensuring that people remai

Rich Pione

richpione

*Thread about #LongCOVID*. I am working temporarily as a clinical psychologist in an #NHS Long COVID rehab team and wanted to share my exp’s in case they were helpful to

Tom Kindlon

TomKindlon

New: “Post-Covid syndrome, Myalgic Encephalomyelitis, and the recurring pseudoscience of mass hysteria” (July 27) by Prof Brian Hugheshttps://thesciencebit.net/2020/07/27/post-covid-syndrome-myalgic-encephalomyelitis-and-the-recurring-p

Michael VanElzakker

MBVanElzakker

One thing I'd like #medtwitter to understand about the putative relationship between #LongCovid & #MEcfs is that we *know* that 'LongCovid' starts with #COVID19. Several outbreaks of #ME were never

Tom Kindlon

TomKindlon

[Thread]“Re: Management of post-acute #covid19 in primary care - A warning to #PostCovid sufferers and their clinicians” by @ozfish (who has #MEcfs for 30 years)https://www.bmj.com/content/370/bmj.m3026/rr-7#LongCovid #LongHaulers #Scep

Craig

MECFS5

@MattHancock if a test becomes available for #CFSME would our government be willing to accept it as diagnosis. Those people should then be assisted to claim benefits. I've spent half

Agy Lena 🏳️‍🌈

agy_lena

I have just learnt that a long covid group in the UK including drs have said publicly that this is not “just” post viral MECFS. There is a real pathology

Jennifer Brea🦒

jenbrea

I cannot convey how urgent it is that @CDCgov put out very clear public health messages encouraging people with #COVID19 TO REST. #MedTwitter we need your help. I am in

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