Ed Yong is not here this is what I've experienced for the last few years writing about ME/CFS. It is heartbreaking. The neglect of this patient population has been profound.

Ron Davis’s ME/CFS Collaborative Research Center at Stanford’s annual international Working Group meeting is this Wed-Fri on Zoom. Over 100 great scientists are attending. By invitation only. Exciting! Lots of info, ideas and interactions.

(1/6): From the desk of Ronald W. Davis, PhD, Chair of OMF's Scientific Advisory Board: NICE has abruptly paused the publication of its new guidelines for ME/CFS, arguing that those who are treating patients need to agree with the guidelines. This is a false argument. (Cont..)

Update from Janet Dafoe: “Ron Davis’s ME/CFS Collaborative Research Center at Stanford’s annual international Working Group meeting takes place this Wed-Fri on Zoom. Over 100 great scientists are attending. By invitation only. Exciting! Lots of info, ideas and interactions.”

We are repeating in two years what has been taking place over forty painful and horrifying years

WE PRESENTED NEW RESEARCH AT THE IACFS/ME VIRTUAL MEETING 1) Ventilatory Functioning During Serial #CPET in People With & Without #MECFS 2) #EEG brain waveforms significantly predicted #IOM ME/CFS diagnosis 3) 2 Symptoms Accurately Identify #PEM Read more: conta.cc/3kdNPjz

"It is hard to describe the thrill I felt when reading the words “now-discredited study” rendered as a normative statement in The Atlantic." virology.ws/2021/09/24/tri…

The NIH is hosting an #MECFS advocacy call on Oct. 22nd at 1 pm MT. Pre-registration isn’t required, so be sure to mark your calendars: nih.gov/mecfs/events

Bateman Horne Center participated in the This is not the CDC #MECFS Roundtable Meetings this week aimed at advancing partnership goals. The top items discussed were healthcare workforce education, surveillance, and expanding the science, awareness and stigma. #pwME

OMFCA is thrilled to announce that we are funding a new collaborative research project! Conducted across the OMF Collaborative Network, this research initiative will investigate sleep disturbances in ME/CFS. Learn more: ow.ly/Qtyt50Gyr0e

Exercise duration by itself is not an appropriate functional outcome measure for #pwme and patients with #LongCovid. If we wouldn’t stress test a diabetic with a candy bar, we shouldn’t stress #pwme and patients with #LongCovid using bike and treadmill “exercise-for-time” tasks.

$5 New Member Shopping Bonus! Join now, when you make your first purchase by 2/15 IGive will give us an extra $5 bonus for May12th International Awareness Day. iGive.com/ip8f6VW #iGiveDoYou

Disappointing to see Professor Paul Garner, featured in today's The Times and Sunday Times (£) article by Tom Whipple, still advocating for recovery from serious post-viral illness by thinking oneself better. My blog post from 1 year ago explains more valerieeliotsmith.com/2021/02/01/pro… via Valerie Eliot Smith

Help me support May12th International Awareness Day by shopping via iGive. Or, help your favorite cause! igive.com/OFZxA9 #iGiveDoYou

Tell2People - a new initiative to raise awareness in May. See details at may12th.link/Tell2People-De…. Any questions email [email protected]. Please share widely. We want the whole world to know about us. #may12th, #Tell2People, #pwme, #FM, #mcs, #GWI, #CIND, #MyalgicE, #fibro

Do you write a blog? The #Blog4May12th is back! Include this hashtag in your blog and let [email protected] know so we can post about it. #may12th, #MyalgicE, #pwme, #Fibromialgia , #mcs

Aug 8th is #SevereMEDay. 25% of those with #MyalgicE have a severe form of the disease. Help raise awareness.