Open Medicine Foundation
@OpenMedF
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OMF is fundraising to support open, collaborative research to find effective treatments and diagnostic markers for ME/CFS, Long COVID, and related diseases.
California, USA
Joined December 2012
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We are overflowing with gratitude following the incredible live-stream event hosted by Dianna Cowern (Physics Girl) and her team. What started as a $10,000 goal turned into a mind-blowing $121,983 fundraiser, thanks to your incredible support! 🌟💙
#MECFS
#LongCOVID
(1/4)
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Big news: OMF Scientific Advisory Board Director Dr. Ron Davis has been awarded a 5-year, multi-million dollar grant by the NIH to help fund groundbreaking research into ME/CFS. According to Dr. Davis, "This proposal aims to uncover the immunological basis of ME/CFS."
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A message from Ron Davis: “We’re doing everything we can to continue progress on ME/CFS during this time when we can’t go into the lab. This is a photo of me on a conference call with doctors & researchers planning for a test of a new idea for treatment of ME/CFS.” (Continued.)
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In recognition of
#SevereMEDay
, we're sharing an account from Janet Dafoe of a recent interaction with her son Whitney and her husband Dr. Ron Davis. "Whitney sat up and pantomimed, 'I am not giving up! I will keep fighting!" Read now:
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Dear OMF Family: It is with great sadness that we inform you of the sudden passing of OMF's beloved Chief Medical Officer, Ronald G. Tompkins, MD, ScD. As we join together to mourn this devastating loss, we would like to reflect on his tremendous legacy:
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Today, August 8, we unite to honor Severe ME/CFS Awareness Day. This year, we raise awareness through the lens of
@DafoeWhitney
. Whitney's ME/CFS journey has been one of heart-wrenching challenges and remarkable courage. (1/2)
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(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..)
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The Mayo Clinic has removed recommendations of Graded Exercise Therapy (GET) & Cognitive Behavioral Therapy (CBT) from their webpage on ME/CFS! This signifies increased understanding of ME/CFS in the medical community, & helps to protect from potentially harmful recommendations.
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BIG NEWS on this
#OMFScienceWednesday
: We are proud to announce OMF has funded $1.8 million to establish a new ME/CFS Collaborative Research Center at Harvard and will expand the Stanford Data Center for the Severely Ill Patients (SIPS) Study. More info:
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In recognition of
#SevereMEDay
, we would like to share a touching new message of hope from Whitney (Ron Davis and Janet Dafoe's son), which he conveyed to his mother with great effort: "Never stop fighting." Read his full message:
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Breaking news: OMF is funding a new study to investigate the conversion of COVID-19 to ME/CFS. Read the full announcement and an overview prepared by our Collaborative Research Center (CRC) Directors, led by Ronald W. Davis, PhD on OMF's website: .
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OMF received a new $1 million anonymous pledge to escalate Ron Davis’s systems biology approach with Robert Phair, PhD, at Stanford's ME/CFS Collaborative Research Center. This will expand their "metabolic trap” hypothesis research. More on the project:
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We're excited to announce a new OMF-funded research publication in
@PNASNews
: A Nanoelectronics-blood-based diagnostic biomarker for ME/CFS. This test yielded precise results, accurately flagging all patients and none of the healthy individuals.
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Huge news! We are thrilled to announce a new $1 million donation from the Pineapple Fund to support our vital ME/CFS research. Please share the great news and find out more on our Facebook page >>
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People with ME/CFS can wait years for diagnoses; biomolecular tests are finally in development 👉
This article proudly highlights the groundbreaking work of OMF supported researchers, Ronald W. Davis, PhD, Alain Moreau, PhD, and Maureen Hanson, PhD
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$1 Million Received to Study COVID-19 to ME/CFS! OMF is thrilled to announce an anonymous, $1,000,000 grant to fund an investigation of the relationship between COVID-19 & the possible trajectory to ME/CFS. Why is this important? Watch the video:
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We'd like to say a special thanks to everyone participating in this weekend's
#MillionsMissing
ME/CFS advocacy events, in person, from home and even from bed, and to
@MEActNet
for organizing.
It's incredibly inspiring to watch this movement continue to grow and make an impact!
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The 2022 ME/CFS Zoom Working Group Meeting Agenda & Guest list is now available! This event is for biomedical researchers to share ideas & knowledge about the molecular basis of
#MECFS
.
Because the group will discuss unpublished research, the meeting is closed to general public.
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Are you interested in advancing research for
#MECFS
,
#LongCovid
,
#Fibromyalgia
, and other post-infection illnesses? Join OMF's
#StudyME
, a participant registry that connects you with researchers conducting studies in these areas! 👉
#StandUpAndBeCounted
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Breaking: Dr. Anthony Fauci has warned that “Coronavirus may cause chronic fatigue syndrome.” Read the CNN briefing: . As awareness is increasing on the global stage, OMF’s hope is that we may find a better understanding of ME/CFS & other chronic diseases.
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Ron Davis, PhD, presenting on 'Involvement of BH4, NO and Oxidating Stress in ME/CFS.'
#IIMEC16
starts tomorrow. For the full agenda, visit:
#mecfs
#OMFResearch
#pwME
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Update: The complete Red Blood Cell Deformability in ME/CFS research paper is now formally published in the Clinical Hemorheology and Microcirculation journal. This important study is fully funded by OMF through the support of our donors. Find out more:
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ICYMI: Dr. Alain Moreau just received a pledge of $1 million per year for three years from a group of anonymous Canadian donors to fund a new study entitled, “REMEDIAL: Precision Medicine for Myalgic Encephalomyelitis Drug Discovery and Clinical Trials.”
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ME/CFS featured on the front page of
@sfchronicle
!
Many thanks to the brave
#pwme
@DafoeWhitney
, who gives reporters a glimpse of what life with severe
#MECFS
looks like behind closed doors. In doing so, Whitney raises awareness of the realities of this disease.
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A powerful message from Whitney Dafoe: "It takes hours to communicate these posts & makes me worse but I do it because most people with severe ME/CFS simply disappear into dark rooms never to be heard from again. Someone has to tell our story."
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Exciting news! We are proud to announce that OMF has funded the establishment of a third ME/CFS Collaborative Research Center, at Uppsala University in Sweden. Find out more
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For any ME/CFS patients who are having an especially difficult day, don't forget ...
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OMF's science liaison, Christopher Armstrong, PhD, has been awarded a grant to further his research into the relationship between the altered metabolism of nitrogen & ME/CFS ! Read the full announcement on OMF's website:
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The urgency of this cause cannot be overstated, and we pledge to continue working tirelessly to honor Lauren’s memory. Lauren’s passing is a profound loss, and we recognize the deep impact she has had on those who knew her and on the broader ME/CFS community.
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Eye movements may be key to
#MECFS
diagnosis! Read the new article:
OMF Australia is a proud collaborator on this project! Christopher Armstrong, PhD., Director of the
#Melbourne
ME/CFS Collaboration, is a co-investigator in this study.
#medtwitter
#pwme
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Update from
@JanetDafoe
: “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.”
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Great news! The Journal of the American Medical Association published an article about the nanoneedle, a potential ME/CFS diagnostic device developed by OMF-funded researchers. Read and share the article to increase its ranking on the site!
@JAMA_current
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Does ME/CFS Change Molecularly Throughout a Day? Jonas Bergquist & Christopher Armstrong's New Study:
This study plans to use high-frequency blood testing—multiple tests over a 6–8-hour period—to evaluate what changes in
#MECFS
patients over a day.
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We'd like to wish a very happy birthday to Dr. Ron Davis, and thank him for his relentless dedication to ending ME/CFS. We're proud to work with such a talented researcher and exceptional person. Please consider making a donation today in honor of Ron:
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Happy birthday to the incredible
@DafoeWhitney
! Whitney is a selfless advocate for all
#PWME
. He says, "I want to get better and see all of you rise from your beds, wheelchairs, & homes with me!" Give Whitney the gift of hope by donating to his fundraiser:
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.
@JanetDafoe
has shared an update on the 2021 Stanford Working Group Meeting: "The meeting was the best ever. Scientist after scientist with groundbreaking Molecular Research. Great discussions. Collaborations forming. It felt like progress. Putting puzzle pieces together."
#PwME
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We are thrilled to share that OMF-funded research on Red Blood Cell Deformability has just been published in Blood Journal. This important research could lead to a potential biomarker and diagnostic test. Read Dr. Ron Davis's update:
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Great news! Ron Tompkins, MD, ScD announces, "We've received an anonymous grant of $350,000 designated for the 'Proteomic & Metabolomic Plasma iCPET Studies' within the OMF-funded Harvard ME/CFS Collaboration at Harvard-Affiliated Hospitals" Read more:
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We are delighted to share a new video update with Robert Phair, PhD and
@JanetDafoe
, PhD. Today Rob will talk about the Itaconate Shunt Hypothesis for ME/CFS. Watch now:
#MECFS
#PwME
#MedED
#medtwitter
#LongCOVID
#MyalgicE
#Medicalresearch
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OMF is excited to announce a new study between the ME/CFS Collaboration at Uppsala, Sweden & the Harvard ME/CFS Collaboration to understand the mechanism of long-lasting viral-induced cognitive complications, commonly referred to as "brain fog." Read more:
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$8 Million Clinical Trial of a Mitochondrial Booster Underway in
#MECFS
! Read the new article from Health Rising by
@CortJohnson
:
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Dr. Ron Davis, OMF Scientific Advisory Board Director, sent this message about the state of ME/CFS research to the
#MillionsMissing
Stavanger group in Norway. He's optimistic that continued expansion of research will result in better treatments and possibly a cure.
#MayMomentum
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.
@StanfordMed
announced today this new OMF-funded research publication: With blood samples from 40 people — 20 with ME/CFS and 20 without — the test yielded precise results, accurately flagging all patients and none of the healthy individuals.
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Announcing the Chronic Fatigue Syndrome Research Center at Stanford University's Second Annual Community Symposium on the Molecular Basis of ME/CFS, sponsored by OMF ... Save the date of Sat. September 29, 2018 to join us either in person at Stanford University or via livestream.
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Janet Dafoe shared a plea from her son Whitney as part of the
#MillionsMissing
campaign. Watch her video here: , then record yourself making "The Whitney Plea" and email it to millionsmissing
@meaction
.net and post on social media with hashtag
#WhitneyPlea
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This
#OMFScienceWednesday
we share the exciting news that Dr. Ron Davis and his team have received an NIH award for a five year, $3.9 million total grant to study the “Molecular and Single Cell Immunology of ME/CFS.”
@CortJohnson
explains in more detail:
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NEW Update from Ron Davis! The Manganese Study:
In an interview led by caregiver and advocate
@JanetDafoe
, Ron shares details about his new Department of Defense $1.6 million grant he & Laurel Crosby received to study Manganese and its role in
#MECFS
.
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Exciting news! The JAMA article on the nanoneedle, a potential diagnostic device for ME/CFS developed by OMF-funded researchers, has now been viewed more than 13,000 times! According to Altmetric, it’s in the top 5% of all research outputs based on views:
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Kicking off our first day of May Momentum.... with a new $1,000,000 ME/CFS research grant! Read about the research and how to support May Momentum TODAY:
#MayMomentum
#EndMECFS
#MillionsMissing
#LongCOVID
#PwME
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Jennifer Brea recently spoke at the Stanford ME/CFS Collaborative Research Center about “ME/CFS and Connective Tissue Disorders.”
@JanetDafoe
reported, “It was an excellent talk and generated lots of interesting discussion and ideas.”
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Exciting news! We are proud to announce that Dr. Robert Phair has published the IDO Metabolic Trap Hypothesis for ME/CFS in an open access publication. Thank you all for supporting this and other critical OMF-funded research. Read his publication here:
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Exclusive Interview with Ron Davis &
@JanetDafoe
!
Today, Ron Davis, Ph.D., sits down to discuss his most recent publication: “Catalytic Antibodies May Contribute to Demyelination in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome.”
Watch now 👉 .
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Today marks the start of our Triple Giving November campaign, where your donations to OMF are TRIPLED every day this month. ⭐ Exciting news: introducing The LIFT Trial, our first-ever clinical trial. Read the full anouncement here 👉 .
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Great news! There will now be an ME/CFS cohort/comparative group included in the Long Covid RECOVER Initiative:
"Recently, researcher Leonard A. Jason won NIH’s support to include an ME/CFS group as part of the work."
#MECFS
#LongCOVID
#PwME
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An encouraging account of how one doctor changed his views on ME/CFS and is now spreading the word: "This condition has been so mismanaged throughout medicine. ... We have made well-meaning recommendations that were harmful. I can say that; it’s the truth.
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Breaking news: OMF has added a 4th ME/CFS Collaborative Research Center (CRC)! Directed by Alain Moreau, PhD, this CRC at CHU Sainte-Justine/Université de Montréal in Québec, Canada will serve to increase international collaborative efforts. Read more:
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New from Ron Davis, PhD, & colleagues: "Catalytic Antibodies May Contribute to Demyelination in ME/CFS.” . This research is proudly supported in part by OMF. BIG thanks to patient donors & Whitney Dafoe for funding the HPLC unit essential for the research!
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Breaking: OMF has been featured in The Wall Street Journal's new article, "Three Months In, These Patients Are Still Ravaged by Covid’s Fallout." . (Please note, the full article is currently only available to Wall Street Journal subscribers.)
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Dr. Ron Davis says: “A lot of progress has been made in the last year. There is a lot more data and it is now generating testable hypotheses. More exciting collaborations are being established. Excellent new people are entering the field. The future is looking even more hopeful."
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Big news from Dr. Alain Moreau & the Montréal ME/CFS Collaborative Research Center (CRC): "I'm pleased to share that an article authored by my research team at the OMF-Established CRC at Montréal has been published by Scientific Reports!" Read it now:
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"Perhaps, through this crisis, others will come to understand what having ME/CFS really means to one’s way of life and ultimately, we may find support to a better understanding of ME/CFS, to treatments, and possibly a cure." - Dr. Ron Tompkins, Md, ScD.
#MondayMotivation
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OMF's Dr. Ron Davis and Linda Tannenbaum are at the 13th
@Invest_in_ME
Research Conference in London, joined by several OMF Scientific Advisory Board members, pictured here. We're excited for this opportunity to promote international research collaboration!
#MayMomentum
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New video update: OMF's Scientific Advisory Board Director, Ronald W. Davis, PhD, talks about his newly funded NIH grant. This grant will fund research for 5 years at $500,000 a year and is designed to shed new light on the immunology of ME/CFS. Watch now:
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New video update: Dr. Ron Davis of Stanford University presented a research update at the International Invest in ME Conference 13 (IIMEC13) in London. His presentation reviewed the latest progress on ME/CFS research funded by OMF.
Watch the video now:
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🔬 In the coming weeks, we'll be sharing how your amazing support will be put into action. Stay tuned to see how we leverage this incredible day of giving to accelerate our research efforts.
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On May 12, international ME/CFS Awareness Day, OMF will be posting photos on a digital billboard in Times Square, NYC, to raise awareness of ME/CFS! We invite you to share your own photo (a minimum $33 USD donation is requested). Find out more:
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Happy
#MillionsMissing
day of action! We're excited to be participating today, and we'd like to say a special thanks to
@meactnet
for organizing and to the ME/CFS community for their ceaseless dedication. There's still time to join virtually or in person:
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Please join us in wishing Ron Davis, Chair of OMF Scientific Advisory Board, a very happy birthday! 🎂 🎉In case you missed it, catch up on the latest research updates from Ron on YouTube: .
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.
@jenbrea
posted this moving account of recently meeting Whitney Dafoe and shared the messages he wants to send the ME/CFS community: “'Don’t give up.' ... He keeps fighting everyday, not giving up, for himself, for his family, but also for all of us."
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Huge shoutout to Dianna, Kyle, Ian, Simone, Levi, Vanessa, Derek, and the entire crew – you all are phenomenal! Your dedication to shining a light on
#MECFS
and
#LongCOVID
is extraordinary. We are forever grateful. 💙
#ThankYou
(2/4)
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We're thrilled to share a new publication in the Mayo Clinic Proceedings titled "Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome."
👉 Explore the full article here:
#MECFS
#pwME
#MayoClinicProceedings
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We are using this time of isolation to do planning, data analysis, writing papers, and writing grants. So far we have at least 5 grant applications in progress.“
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Open Medicine Foundation is excited to announce that our Science Liaison, Christopher Armstrong, PhD has received a grant for ME/CFS research from the National Health and Medical Research Council (NHMRC) in Australia. Read the full announcement:
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From our latest newsletter: We are tremendously grateful to the Brill family, who in honor of their grandson who suffers from ME/CFS, donated $600,000 towards matching gifts that successfully brought in a total of $1,700,000.
Read the newsletter here:
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Big news! Open Medicine Foundation Australia has received a $500,000 Donation to fund Dr. Chris Armstrong's revolutionary Personalized Treatment Program! Read more:
#MECFS
#LongCOVID
#medicalresearch
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Several OMF team members will present at the ME/CFS International Research Symposium in Victoria, Australia March 12 to 15, including Ron Davis, Chris Armstrong, Jonas Bergquist, and Wenzhong Xiao. We're thrilled to expand global collaboration!
More info:
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Friends - Please keep an eye out for this CNN story on ME/CFS tomorrow (Sunday). As soon as it's public, please SHARE IMMEDIATELY to maximize its reach. We'll post on our accounts as soon as it's available. Thank you all!
I’ll have a big
#mecfs
story for CNN homepage on Ron Davis,
@JanetDafoe
, and Whitney coming tomorrow. Please help us share/get the word out!
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Quarantine Update from Dr. Ron Davis! Watch now: . In honor of Severe ME Awareness, Dr. Ron Davis has sent an update about the status of research projects conducted during the quarantine by the ME/CFS Collaborative Research Center at Stanford University.
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NEW RELEASE: The U.S. ME/CFS Clinician Coalition, a group of U.S. ME/CFS experts, has authored A Guide for Diagnosing and Treating ME/CFS, a handout on the basics of diagnosis and management of this disease.
Find out more and download the guide:
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It's
#MotivationalMondayOMF
! Today's quote is a recent message from Whitney Dafoe to the ME/CFS community.
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#LongCovid
: major findings, mechanisms and recommendations. Read in
@nature
:
Amazing work from
@patientled
! As shared by the group, "This was a HUGE labor of love over 10 months from authors Hannah Davis, Lisa McCorkell, Julia Moore Vogel & Eric J. Topol"
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Dr. David Systrom, in association with the Harvard ME/CFS Collaboration, has published, “Insights from Invasive Cardiopulmonary Exercise Testing of Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.” This research is funded in part by OMF:
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(2/6): Medical advice must follow the evidence and not personal beliefs or political positions. If doctors treating ME/CFS patients do not agree with evidence based guidelines, they should not be treating these patients. This is why we have guidelines.
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Many thanks to
@davelackie
and Arlene for supporting ME/CFS awareness at last night's Belle and Sebastian concert in Toronto! Thanks also to
@bellesglasgow
singer and OMF Ambassador Stuart Murdoch for helping to raise awareness while on tour.
At the
@bellesglasgow
concert in Toronto tonight in support of myalgic Encephalomyelitis awareness! Here with my pal Arlene!
#openmedicine
@MillionMissCan
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Exciting news! Stuart Murdoch (
@nee_massey
), co-founder of the indie pop band Belle and Sebastian, which has been touring worldwide and producing albums for 20 years, has joined our family as an OMF Ambassador. Find out more and watch his new OMF video:
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New from the lab of Ron Davis, PhD! The Neutrophil Study:
A new study from Ron Davis and Stanford colleagues aims to identify neutrophil abnormalities unique to ME/CFS patients.
#MECFS
#Medtwitter
#sciencenews
#research
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Promising Research at OMF-funded Montréal Research Center! Dr. Moreau: "My team has developed a new diagnostic test, which explores the molecular mechanisms & patterns that change during the early development of PEM in severe ME/CFS patients." Read more:
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"I'm optimistic.. We have some ideas on how to get you out of the trap, which we are in the process of doing." - Dr. Ron Davis. Very compelling and hopeful presentation.
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