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Open Medicine Foundation - OMF
Добавлен 18 сен 2013
Open Medicine Foundation (OMF) envisions improved health care for patients suffering from chronic complex diseases with collaboration between the patients, clinicians, and researchers. Our current focus is on ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome) and Long COVID, with the expectation that discoveries in these diseases will bring answers to other diseases that share similar symptoms (such as fibromyalgia, EDS, chronic Lyme disease).
Our videos highlight the groundbreaking research OMF is funding and facilitating, as well as the research of several of our collaborators. Learn more at www.omf.ngo.
With the help of our international OMF translators, some OMF videos have translated subtitles available. We gratefully thank our team for their support to help build and inform the international ME/CFS family. OMF is not responsible for these translations.
Our videos highlight the groundbreaking research OMF is funding and facilitating, as well as the research of several of our collaborators. Learn more at www.omf.ngo.
With the help of our international OMF translators, some OMF videos have translated subtitles available. We gratefully thank our team for their support to help build and inform the international ME/CFS family. OMF is not responsible for these translations.
Sally's Journey with ME/CFS: Personal Story & Fundraising for Research
Join Sally as she shares her journey with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a life-altering disease that began unexpectedly over a decade ago during a holiday in Noosa, Australia. At the time, Sally was enjoying an active life in Mt Maunganui, New Zealand, managing a business with her husband. She recounts the sudden onset of symptoms, from sore ankles to severe pain, muscle spasms, and sleepless nights, which marked the beginning of her ME/CFS journey.
Despite enduring severe symptoms for 18 months and facing ongoing challenges, Sally now feels she is at about 85% of her former self. She discusses the difficulties of getting a diagnosis and her journey to findin...
Despite enduring severe symptoms for 18 months and facing ongoing challenges, Sally now feels she is at about 85% of her former self. She discusses the difficulties of getting a diagnosis and her journey to findin...
Просмотров: 277
Видео
Personalised Treatment Trials: Monitoring and Improving the Connection of Treatments to Patients
Просмотров 1 тыс.2 месяца назад
The Melbourne ME/CFS Collaboration is conducting a study to closely watch how different treatments affect ME/CFS and Long COVID patients, using a very tailored approach. The team will collect samples from patients before, during, and after their treatment to see what biological changes happen and how these relate to whether they feel better or not. This method will help the researchers figure o...
Exclusive Interview: Fran Haddock's Journey with ME/CFS & Long COVID
Просмотров 1,7 тыс.2 месяца назад
Discover the powerful story of Fran Haddock, a passionate advocate for ME/CFS, chronic illness, environmental, and social justice causes. Fran’s profound six-year journey with ME/CFS took a significant turn after a COVID-19 infection, escalating her symptoms to severe. In this exclusive interview, Fran opens up about her personal journey, shedding light on her advocacy efforts and the challenge...
Research Updates from the Melbourne ME/CFS Collaboration
Просмотров 1,6 тыс.2 месяца назад
Dr. Chris Armstrong and Dr. David Fineberg chat about two upcoming research projects at the OMF supported Melbourne ME/CFS Collaboration: Saline Infusion for ME/CFS, POTS, Long COVID & Trialing Food on ME/CFS Patients. Food and saline infusions are both known to have an impact on ME/CFS symptoms. The Melbourne ME/CFS Collaboration aims to identify responses to different foods using objective me...
Tracking Hormonal Fluctuations in ME/CFS and Long COVID | Melbourne ME/CFS Collaboration
Просмотров 1,8 тыс.3 месяца назад
Join us for an exclusive insight into ME/CFS research with the Melbourne ME/CFS Collaboration's latest video! In this enlightening discussion, Dr. Natalie Thomas and Dr. Christopher Armstrong, Director of the OMF's Melbourne ME/CFS Collaboration, shed light on the profound influence of hormones on ME/CFS and Long COVID (LC). Explore the intricate interplay between hormone fluctuations and disea...
Exclusive Interview with Ron Davis & Janet Dafoe!
Просмотров 11 тыс.7 месяцев назад
We’re thrilled to bring you the latest insights into ME/CFS research through an exclusive interview led by advocate and caregiver Janet Dafoe, Ph.D. Today, Ron Davis, Ph.D., OMF Scientific Advisory Board Director, sits down to discuss his most recent publication: “Catalytic Antibodies May Contribute to Demyelination in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome.”
Dr. Jonas Bergquist, OMF Chief Medical Officer, Talks OMF's First Clinical Trial
Просмотров 2,5 тыс.8 месяцев назад
Today Dr. Jonas Bergquist sits down to chat about OMF's first clinical trial, The Life Improvement Trial (LIFT). This clinical treatment trial is a major step towards understanding and treating Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Long COVID more effectively. What is The LIFT? Conducted under the direction of David Systrom, MD, Director of our Harvard Collaboration an...
Conversation with Dr. David Systrom on OMF's First Clinical Trial
Просмотров 4,8 тыс.9 месяцев назад
Today Dr. David Systrom sits down to chat about OMF's first clinical trial, The Life Improvement Trial (LIFT). This clinical treatment trial is a major step towards understanding and treating Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) more effectively. What is The LIFT? Conducted under the direction of David Systrom, MD, Director of our Harvard Collaboration and Jonas Bergquist...
"It was like getting hit with a train I never saw coming…" Ashanti Daniel shares her ME/CFS story
Просмотров 1,4 тыс.10 месяцев назад
Open Medicine Foundation is proud to partner with Ashanti Daniel, a disabled NICU nurse turned chronic illness advocate. Ashanti fell ill with ME/CFS in 2016 following a viral infection. Today she shares her story. Follow Ashanti on X, Threads, and Instagram: @AshantiRN Learn more about the work OMF is doing to advance research for treatments and a cure: www.omf.ngo.
The Nuts & Bolts of Applying for Disability Benefits in the U.S with ME/CFS or Long COVID
Просмотров 1,8 тыс.10 месяцев назад
Open Medicine Foundation (OMF) is proud to present our webinar, "The Nuts and Bolts of Applying for Disability Benefits in the United States if You Have ME/CFS or Long COVID." This webinar is presented by OMF's Founder & CEO, Linda Tannenbaum, Social Security Attorney Barbara Comerford, and Neuropsychologist Gudrun Lange, PhD. Learn more about OMF's work at www.omf.ngo. Be sure to turn on close...
Is ME/CFS Curable? Ronald W. Davis' Lecture at the 2023 Fatigatio Symposium
Просмотров 33 тыс.11 месяцев назад
Ronald W. Davis, PhD, Chair of Open Medicine Foundation (OMF)'s Scientific Advisory Board & Director of the ME/CFS Collaborative Research Center at Stanford University discusses the question, "Is ME/CFS Curable?" at the 2023 Fatigatio Symposium held in Berlin Germany.
“As Long COVID progressed, my world shrunk...”
Просмотров 971Год назад
Thank you to Beth for sharing her story, and why she chooses to partner with Open Medicine Foundation. Learn more at www.omf.ngo #longcovid #mecfs #chronicfatiguesyndrome #chronicillness
"My whole life just disappeared…"
Просмотров 1,4 тыс.Год назад
Millie shares her story living with Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a serious, often life-long illness that affects many body systems. Follow Millie on TikTok at @cfs_millie and Instagram @chronicfatigue_millie. #mecfs #chronicfatiguesyndrome #longcovid
Sign up for StudyME for opportunities to participate in ME/CFS research
Просмотров 1 тыс.Год назад
Sign up for OMF’s StudyME, a registry for those interested in participating in research studies of myalgic encephalomyelitis / chronic fatigue syndrome (#mecfs), #longcovid, #fibromyalgia and related diseases 👉 www.OMF.ngo/StudyME. Healthy volunteers needed, too!
Sharing something personal about ME/CFS...
Просмотров 1,9 тыс.Год назад
Repost from Emma (@undercoverautie on Instagram). Learn more about OMF's work to end #mecfs, #longcovid & related diseases 👉 www.omf.ngo #pwme
Beth Reflects on 3 Years of Long COVID
Просмотров 1,3 тыс.Год назад
Beth Reflects on 3 Years of Long COVID
3 things about ME/CFS and Long COVID...
Просмотров 12 тыс.Год назад
3 things about ME/CFS and Long COVID...
Itaconate Shunt Hypothesis Part 2: Interview with Robert Phair and Janet Dafoe
Просмотров 12 тыс.Год назад
Itaconate Shunt Hypothesis Part 2: Interview with Robert Phair and Janet Dafoe
Thank you for making Triple Giving November a success!
Просмотров 716Год назад
Thank you for making Triple Giving November a success!
An Update from Ron Davis and Janet Dafoe: The Neutrophil Study
Просмотров 10 тыс.Год назад
An Update from Ron Davis and Janet Dafoe: The Neutrophil Study
Performer Jacqueline Ko Shares her Story: “I was ten years old, and my health completely collapsed”
Просмотров 1,1 тыс.Год назад
Performer Jacqueline Ko Shares her Story: “I was ten years old, and my health completely collapsed”
Ryan Prior Talks Upcoming Book, "The Long Haul," & His Journey with Chronic Illness
Просмотров 2,1 тыс.Год назад
Ryan Prior Talks Upcoming Book, "The Long Haul," & His Journey with Chronic Illness
2022 Stanford Working Group Meeting on the Molecular Basis of ME/CFS: video update from Ron Davis
Просмотров 7 тыс.Год назад
2022 Stanford Working Group Meeting on the Molecular Basis of ME/CFS: video update from Ron Davis
Ron Davis Research Update: DNA/RNA Tech with Peidong Shen, PhD
Просмотров 9 тыс.2 года назад
Ron Davis Research Update: DNA/RNA Tech with Peidong Shen, PhD
Rob Phair, PhD, Presents on the Itaconate Shunt Hypothesis for ME/CFS
Просмотров 17 тыс.2 года назад
Rob Phair, PhD, Presents on the Itaconate Shunt Hypothesis for ME/CFS
Ron Davis Updates on the Metabolic Trap Hypothesis!
Просмотров 8 тыс.2 года назад
Ron Davis Updates on the Metabolic Trap Hypothesis!
Ron Davis Updates on the Manganese Grant & Study!
Просмотров 8 тыс.2 года назад
Ron Davis Updates on the Manganese Grant & Study!
How is long covid related to ME/CFS specifically?
Is a Part 3 coming? Been over 18 months now, has this been abandoned?
What do you think about the cases that healed or got better from brain retraining? And about LDN?
Thank you so much for encouraging news. Blessings from Norway.
Do ya reckon you can hurry the F up??
Raising hand …..in Oakland
I have avoided crashes for years at a time simply because ME/CFS is so isolating and limiting. Avoiding crashes has never improved or cured my condition. Going on 21 years with ME/CFS.
Dr Ron,you need to do something crazy here,to figure this out!! I got a feelin,it's another 30-40 years away!!
If you're one of those people who gets a chapped red hiney over people "living on hand-outs," here's how you can help. Bring awareness to chronic illnesses like this, and help fund research for a cure! You think people who have to live on disability WANT to be on disability? It's embarrassing enough trying to apply when you're thinking to yourself "how do I convince someone this is even real when it's completely invisible?"
Where can we follow (intermediate) results?
Sorry , where & which countries are doing the clinical trials pls ? Ty
Dear Dr Ronald Davis, I’m commenting for two reasons (at only 9mins into this post)…Firstly, you captivated me with your calm and logical delivery; thank you for illuminating me and clarifying that not all cells follow the usual cycle and confirming the imuno/inflammatory nature of ME/CFS. Secondly, more importantly, I wanted to say that my stomach and heart sank when you mentioned that it was impossible for your son not to crash 😢 …it took me straight back to my memories of pacing with a heart rate monitoring watch. I was on a family vacation in our newly bought caravan (which we bought due to Covid19) which also happened to create the special interest of some Drs in ME/CFS and heart rate monitoring for pacing. The combination of being in a 6m/18 foot caravan and a fresh insight and the watch was key to helping me improve my ME/CFS. It enabled me to be with my family, sleep, go to the bathroom in a really confined but relaxed tiny space. All of those factors helped me to get through a “crash“ and for the first time stay within my own body’s energy boundaries and start to stay within my boundaries to ultimately start a slow but gradual improvement in my body’s energy levels (no progress week by week or month by month - but year by year there is a meaningful and lasting improvement). I do feel impertinent suggesting anything to you, but I’m guessing your son has had some of the best support possible, but if your son is bed bound, as I was, it may feel…isolating, boring, depressing? The tiny home that the caravan was gave me a chance to be “in” my family, a change in scenery. I could sleep, eat and interact with my family from my bed whilst they worked online, went swimming in an outdoor pool, walking the dogs etc and I always had company and rest and a view to the caravan site and all its goings on! I genuinely hope that your son finds a way to avoid “crashing“ so that he can move forward in his life and health. It’s such a shame that ME/CFS sufferers are used to doing and dealing with so much and are then so totally restricted and have to restrain eating, moving and even thinking! All my best wishes and thanks. Angela
Thank you so much for trying to help us!!! It means the world ❤
god speed
You need to listen to your Dr. Myhill in Britain.😊
Wish this video existed 7 yrs ago when I had to resign my job from the unknown/un-named illness (now known as MCAS).
Thank you! 30 years in made.worse.by 2nd vaccine....thank yu
Have you determined toxins (endo, actinomycetes, or mycotoxins) as a root cause for some?
Someone actually taking ME/CFS seriously and not trying to sell the backwards idea that we're just lazy or depressed or attention seeking; it's a legit illness with real triggers and an illness can be at least treated if not cured. The possibility of a cure though is amazing. But first we require more people in the medical community to understand it's a real and legitimate illness. Bless this gentleman and others working on figuring out what this illness is and what to do about it.
Can someone summarize this for me pls
صور الدماغ الشرايين والوعيه بل رنين الملون تلاحض شرايين مسدده واوعيه ضيقه لا يوصل الدم بشكل جيد لنحاء الجسم مما يدي كل هاذهي العراض دكتور بل الا ردن استكشف هاذهي العراض الي اعاني منها متذو سنين
Was this research a dead end?
Thank you so very much! Does this include fibromyalgia?
What about the people with dysautonomia that have severe reactions to medicines. Anything new i tried made me feel worse or my heart rate go crazy.
Just discovering Ron and his work. If I were rich, I would donate money to this cause without hesitation. I don't know if I have full blown ME, but I am exhibiting some pretty severe symptoms ever since I had a horrible norovirus infection last summer. I am in learning mode and just trying to manage my energy usage. Recently got a double vaccination for shingles and tetanus and that along with some intense physical exertion put me into the biggest crash yet. This has been an eye-opener. I simply can't do the stuff I used to do.
I crash after eating.
Update? And why on earth aren't you testing CAD / JAK STAT inhibitors??
can the Drs. or someone on here tell me if fibromyalgia and or ME CFS is recognized by any medical profession as being a neurological disease or syndrome can you refer my to any such literature would be helpful thank you from Canada
Please work in collaboration with Asha therapeutics! They're working on CFS drugs too.
What do you think the motive is for medicine to think it’s psychosomatic? I don’t see why they would lie on purpose?
Is it plausible that a disregulated hpa axis could also be a cause for some patients that have ptsd/cptsd as well as m.e?
Really hope there's something soon for us to take to make this horrible illness better. 😢
Thanks. Very informative. I have long covid with chronic fatigue. I have had adrenal gland deficiency for years. I’m on work short term disability now and it’s looking like I need to go on work long term. It goes through a third party. The stress added… like you said every case is different..
Long covid has destroyed my life. Thank you for this information.
Wake Up! Drugs are not the answer and only make matters worse. The medical cartel does not want a cure for anything so they can keep people buying their potions. As an energy healer with 45 years experience, I have found natural remedies for most of the illnesses that people are facing today, but the naive, brainwashed society is not interested. This is just another sign of the Last Days that we are living in.
I suffered from covid and then long covid. I knew it was CFS but I knew it was not a psychological problem, but still I went for antidepressants. They didi helped me but took a lot of time to come off them. Positive mindset, healthy vegetarian diet, meditation will certaily help .
Thanks for all you folks do . Had ME since a bad case of Mono in 1987. I've recovered over the years but have never been healthy since 1987. Maybe it's just coincidence but my wife was diagnosed with MS 7 years ago.
Also I should add her MS doctor wants to treat her with Copaxone soon as soon as she can taper off prednisone
No coincidence it's rccx gene theory linked to autism.adhd heds.list my mum to severe ms last year father had CFS lot better at 75 than 49 I have CFS fybromyalgia 27 years
I have ME and the worst thing for me is people who think we are weak willed and scared of exercise Ive been unwell 27 years 😢.
Back surgery & bad divorce, ME since around 1996 to now 2024 & fibromyalgia.
Thank you both so much for all you do. I've had me/cfs for more than 60 years.
Do you have heds and do you have much pain with it
I know this is an old comment but could I ask how old you are? I can’t imagine living with this disease for 60 years and I wouldn’t have thought it was possible to live in to old age with it, I certainly don’t feel like my body could take another 5 or 6 decades of it.
So what is the treatment
I think mine all started with having Covid and I never fully recovered. I had a mild dose of it back in 2020 . I never had mono . Thankfully , my condition is not severe like most, but if I don’t pace myself . I can be in bed for days with slurring my speech and word findings . There needs to be more funding . It’s 2024 and I live by a medical school . Majority of them I encounter. Don’t even know what it ME/CFS is . I had to explain it to my physical therapist the other day before we got started with my session .
This is fascinating. I feel ill from certain screens that use PWN (pulse width modulation, I think) to control brightness. Wonder if this is why?
I’ve had CFS after having my second child in 1994 and having Glandular fever. It returned on and off (never as bad as the first), although after an emotional time, it hit me again in 2022. After having COVID jab (I never had COVID) & a stomach bug. Bloods showed my innate immune system was activated. I did what I did last time, which was to eat as healthily as I could, exercise regularly, but not overdo it. CFS just got worse. So went to the doctor again. He confirmed that I was healthy, my oxygen sats were good despite having bronchectsis. However, had high inflammation (CRP & ESR), also had RF, so was diagnosed with Rheumatoid Arthritis. I actually got referred to a CF unit in between, which took a year to get an appointment (NHS in UK), but when they found out about my RA diagnosis, they could not treat my CFS 😮. Ridiculous!
Hi, I'm also in the UK, can I ask how you got referred on the NHS and what they did for CFS. My gp says there's nothing they can do
@@NG-sx9pwNHS CFS London you have to find them yourself they can't be arsed in NHS terrible are you hypermobile
This sounds like Robert Naviaux's Cell Danger Response - with the neighbouring cells being triggered for defense. Has this been researched or compared?
Nice one mate
Even if a cure comes about, will the medical community bury it? Not make the cure available because then theyll make no money from all the friggen doctor's appointments and labs and medications? I don't trust the so-called experts. Not after the plandemic
It feels like it is my list. Many things in common.
Thats crazy right?! They were so obsessed with having us vaccinated and on the lockdown but they have no interest in curing those who got hurt
❤