Ben H (@benh_mecfs) 's Twitter Profile
Ben H

@benh_mecfs

ME/CFS patient advocate, @OpenMedF science correspondent. Bedbound. Former biochemist in training, physiology, powerlifter, PT/gym manager. Musician. F1/Boxing.

ID: 754295920548802560

calendar_today16-07-2016 12:45:36

8,8K Tweet

6,6K Followers

2,2K Following

DecodeME the ME/CFS Study (@decodemestudy) 's Twitter Profile Photo

The initial DNA results from DecodeME are coming this week! We will release them on our website on Wednesday 6th August at 7pm (approx). We're letting you know the timing in advance so you can pace beforehand. Thank you to our participants & supporters.

The initial DNA results from DecodeME are coming this week! We will release them on our website on Wednesday 6th August at 7pm (approx).   

We're letting you know the timing in advance so you can pace beforehand.  

Thank you to our participants & supporters.
#MEAction Network UK (@meactnetuk) 's Twitter Profile Photo

We are excited to share the initial findings from Decode ME that people's genes contribute to their chances of developing ME/CFS. Read more here: decodeme.org.uk/initial-dna-re… #DecodeME #MyalgicEncephalomyelitis #MEAwareness

We are excited to share the initial findings from Decode ME that people's genes contribute to their chances of developing ME/CFS.  Read more here:

decodeme.org.uk/initial-dna-re…

#DecodeME #MyalgicEncephalomyelitis #MEAwareness
Ben H (@benh_mecfs) 's Twitter Profile Photo

An enormous thank you to all at DecodeME the ME/CFS Study, all researchers and advocates who have made this research happen 🙏 #MECFS #MedTwitter #MyalgicE #LongCovid

An enormous thank you to all at <a href="/DecodeMEstudy/">DecodeME the ME/CFS Study</a>, all researchers and advocates who have made this research happen 🙏

#MECFS #MedTwitter #MyalgicE #LongCovid
DecodeME the ME/CFS Study (@decodemestudy) 's Twitter Profile Photo

Our initial DNA results! DecodeME have discovered that people with an ME/CFS diagnosis have significant genetic differences compared to the general population. Summary of our results: shorturl.at/pgsjk Check out our full preprint paper: shorturl.at/VwN3s

Our initial DNA results! DecodeME have discovered that people with an ME/CFS diagnosis have significant genetic differences compared to the general population. Summary of our results: shorturl.at/pgsjk Check out our full preprint paper: shorturl.at/VwN3s
Adam (@abrokenbattery) 's Twitter Profile Photo

Clip: BBC Scotland - Professor Chris Ponting explains why large-scale genetic research into #MECFS didn’t happen sooner — despite its prevalence. He says the field was “hugely stigmatized” and “held back… in part because this disease is very strongly female biased.

Ben H (@benh_mecfs) 's Twitter Profile Photo

That’s the thing with #SevereME and #ME in general…very little changes. This post is as applicable now as it was 2 years ago. And to the 7 years before that. 9 years bedbound. The light from #DecodeME is a rare flame in this darkness, however. 🙏 #SevereMEDay #MECFS #MyalgicE

Lucinda Bateman (@lbatemanmd) 's Twitter Profile Photo

Today is the day to remember those with severe and very severe ME (Myalgic Encephalomyelitis). You are not forgotten. We will keep working toward solutions. 💕

Janet Dafoe (@janetdafoe) 's Twitter Profile Photo

From Ron Davis: #SevereMEAwarenessDay Severe ME is such a horrible disease. My heart goes out to those who are suffering from this. I think of you every day as I work hard to find answers

DecodeME the ME/CFS Study (@decodemestudy) 's Twitter Profile Photo

"DecodeME is now calling on researchers worldwide to join us in accelerating ME/CFS research.” - Prof Chris Ponting (DecodeME Investigator). We encourage researchers to explore and build on our findings. Apply for access to our rich dataset now shorturl.at/F8aOM

"DecodeME is now calling on researchers worldwide to join us in accelerating ME/CFS research.” - Prof Chris Ponting (DecodeME Investigator). 

We encourage researchers to explore and build on our findings. Apply for access to our rich dataset now shorturl.at/F8aOM
RonaldwDavis (@ronaldw_davis) 's Twitter Profile Photo

Community Symposium on the Molecular Basis of ME/CFS returns Sept 5 on zoom! 8am-1pm PST Attendance limited to 5,000. Registration required and can’t be shared. Registration link: stanford.zoom.us/webinar/regist… See photo below:

Community Symposium on the Molecular Basis of ME/CFS returns Sept 5 on zoom! 8am-1pm PST Attendance limited to 5,000. Registration required and can’t be shared. Registration link: stanford.zoom.us/webinar/regist…
See photo below:
Open Medicine Foundation (@openmedf) 's Twitter Profile Photo

From Ronald W. Davis, PhD: Community Symposium on the Molecular Basis of ME/CFS returns! 👉 Register for the Community Symposium: ow.ly/vm1S50WIbO2. #pwME #MECFS

From Ronald W. Davis, PhD: Community Symposium on the Molecular Basis of ME/CFS returns! 

👉 Register for the Community Symposium: ow.ly/vm1S50WIbO2. 

#pwME #MECFS
RonaldwDavis (@ronaldw_davis) 's Twitter Profile Photo

Today our closed ME/CFS Working Group Meeting begins. Here is our lineup of speakers for our first day. Don't forget to register for our community day on Friday! #MECFS25

Today our closed ME/CFS Working Group Meeting begins. Here is our lineup of speakers for our first day. Don't forget to register for our community day on Friday!
#MECFS25
Whitney Dafoe (@dafoewhitney) 's Twitter Profile Photo

HOPE from Ronald W. Davis, PhD’s Working Group Meeting The ME/CFS community may not realize what a big deal the working group meeting is that is happening Tuesday - Friday right now led by Ronald W. Davis PhD.  ME/CFS researchers from around the world are meeting and agreeing to

RonaldwDavis (@ronaldw_davis) 's Twitter Profile Photo

Our third and final day of the closed portion of our ME/CFS Working Group Meeting. Don't forget to register for our community day TOMORROW! #MECFS25

Our third and final day of the closed portion of our ME/CFS Working Group Meeting. Don't forget to register for our community day TOMORROW! #MECFS25
Tess Falor, Ph.D. | Renegade Research (@tessfalor) 's Twitter Profile Photo

Question that came up during #MECFS25 that I'm curious to hear from the community about: Do you use the words PEM and crash interchangeably (as in you use them to describe the same experience) or do you use them to describe different experiences? Janet Dafoe

Todd Davenport (@sunsopeningband) 's Twitter Profile Photo

Pleased to lead this response to the Wallit et al paper describing the #MECFS NIH Intramural Study, published today in nature. Grateful to our international team for lending their time, expertise, advocacy, and compassion to this work. Link in replies.

Open Medicine Foundation (@openmedf) 's Twitter Profile Photo

Today, hundreds of millions face #MECFS & #LongCOVID without FDA-approved treatments. Until December 2, your support goes 3X further to advance critical research and bring us closer to answers. 💙Donate today: ow.ly/rZEb50Xr8wI.