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Open Medicine Foundation

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Nonprofit Overview

Causes: Health, Medical Disciplines Research

Mission: Our Mission Supports collaborative medical research to find effective treatments and diagnostic markers for ME/CFS and related illnesses. Keeps the community informed by disseminating information on current research projects and results. Brings together thought leaders from around the world to brainstorm and participate in targeted initiatives. Encourages and engages the patient community to take an active role in research.

Results: Funded Research projects and new Research projects are underway.

Target demographics: Find diagnostic tests, effective treatments and a cure for ME/CFS and related illnesses

Direct beneficiaries per year: Medical Research for ME/CFS

Geographic areas served: Collaborative Research and Fundraising for ME/CFS and related illnesses.

Programs: Collaborative Medical Research

Community Stories

218 Stories from Volunteers, Donors & Supporters

Donor

Rating: 5

I am a mother from Germany who has a sick grownup daughter.
I donate to OMF per maecenata, because in Germany there is nearly no research on Me/ Cfs! We trust in Prof Ron Davis, he is the only hope for the ME/CFS community, in my country and worldwide, that there might be a cure someday!

General Member of the Public

Rating: 5

After 5 years as an ME patient, I feel so grateful to OMF for their ambitious & tireless work on this underfunded & poorly understood disease. Thank you, thank you, THANK YOU!

Professional with expertise in this field

Rating: 5

This organization has done considerably more than all others when it comes to fundraising and advancing research. They have extraordinary researchers around the world working together to solve this terrible disease. They truly are game changers.

Professional with expertise in this field

Rating: 5

I have been working with nonprofits in the healthcare field for a decade now, and OMF is truly one of a kind. Their dedication and sense of urgency is admirable, and the work they do in the scientific community to advocate for patients is rare. Happy to recommend this exceptional nonprofit seeking to dismantle barriers to care for this community.

Emily M.17

Donor

Rating: 5

We have two children with ME/CFS (along with other diagnoses). We support OMF financially because they are on the frontline of research and give us hope for better treatments and (someday) a cure.

Schaapskooi G.

Donor

Rating: 5

OMF is the organisation that brings hope for so many people :), in the first place for those suffering from ME, but also for their partners and family.

Donor

Rating: 5

As a person with ME/CFS I believe this organization is vital to the advancement of diagnosis, treatment, and hopefully one day a cure. I have faith this organization will do everything it can if properly supported financially to make these goals a reality for the millions of us with this condition, as well as the other chronic illnesses they research. At any time these conditions could become someone’s reality. Support is needed now so you or a loved one will have options available right away.

1 Kerstin H.

Donor

Rating: 5

We need hope based on research. That's what OMF gives.

General Member of the Public

Rating: 5

My daughter has had ME/CFS for 7 years. OMF is consistently giving our family hope that one day soon treatments or a cure will be found for her. Nobody else seems to be doing the research, so we are thankful that the OMF has stepped in.

2

General Member of the Public

Rating: 5

I got Long COVID in early 2021 and OMF’s research is one of the only things giving me hope. The OMF researchers really know what they’re doing. Thank you, OMF!

Erik J.

Advisor

Rating: 1

I am an Incline Village survivor and original prototype for Holmes 1988 Chronic Fatigue Syndrome.
I made multiple trips to Stanford and the Open Medicine Foundation to explain that clues were overlooked, and that the incident "CFS" was coined for has never been investigated.
In other words, the OMF is speaking out of ignorance and is not representing CFS accurately.
To my surprise, my evidence was regarded with disdain and disinterest. They said "CFS has moved on since then". Indicating that they have no intention of ever looking into CFS.
For this reason, they are disqualified to speak about Chronic Fatigue Syndrome.
Their methods are unscientific and antithetical to common sense and logic.

1 Helene E.

Donor

Rating: 5

Giving hope to ME-patients all over the world.
OMF is supporting the work and research that most countries' governments are neglecting. Thank you so much. Where would we be without you.....

1

Donor

Rating: 5

So extremly importent research! I have ME and hoping for help in the future.

1

Volunteer

Rating: 5

The Open Medicine Foundation gives hope to millions suffering w ME/CFS and other debilitating long term chronic illness. They are cutting edge and a single source of hope. I have been ill with ME/CFS for 20 years. Without the OMF I might have given up the fight trying to survive day to day.

1

Donor

Rating: 5

Happy to recommend the Open Medicine Foundation who are one of the few trying to help people with ME.
As a patient I look forward to progress in this field and donate when possible. However, I feel that OMF should not have to rely on donations and hope that this is remedied in the near future, to save any more pain and heartache among so many seriously ill, ignored and disregarded people.

1

Client Served

Rating: 5

OMF is clearly the leading institution when it comes to research on ME/CFS and related illnesses (Long COVID, Fibromyalgia and Lyme).
It is made up by the very best research centres (Stanford, Harvard, University of Uppsala, University of Montréal + hospital, Melbourne), which work in close cooperation, and truly prominent, brilliant researchers in their fields, who are highly motivated. A prominent figure among these researchers is Dr. Ronald Davis, who was the first to physically map the genome of any organism (1968). All the top reserachers in ME/CFS are actively involved in OMF (Ron Davis, R. Naviaux, Jonas Bergquist, Alain Moreau, Norway's Fluge and Mella, Ronald Tompkins RIP, etc.), including two Nobel laureates (!). Even Dr David Systrom is conducting crucial research within the OMF.
They are making huge advances in understanding ME/CFS and they are not lost in the theoretical world - they have a very practical approach too, trying to find treatments that will help patients as soon as possible (and not in 20 years!).
The research OMF is conducting will help not only ME/CFS but also the millions in the world who develop Long COVID, and people with fibromyalgia, as well as Lyme.
OMF has the highest chance of success in deciphering the illness that is ME/CFS (and related illnesses), as well as coming up with treatments that work in a short period of time.
It is definitely a unique research gem and an exception, and it is clear that with sufficient funding, they will crack ME/CFS and identify suitable treatments.

1

Client Served

Rating: 5

What a team. The genius brains of Ron Davis and the amazing people who work with him have given us hope. They work collaboratively and share their latest findings with patients so that we can keep hoping and praying that one day there will be a cure for this awful life limiting condition they call ME/CFS. Please support them. We need funding so they can give us our lives back.

2

Client Served

Rating: 5

It is with great pleasure that I write in support of the incredible work that OMF has done for us, the ME patient community. I have had ME/CFS since 1995. When I mentioned to Mrs. Tannenbaum that we here in Canada had no ME dedicated research organizations, or even any ME groups specifically that were scientific or research oriented groups or even any ME specialist Doctors she heard me loud and clear and then acknowledged this crucial overlooked gap by opening up a Canadian OMF Branch here in Canada where it is so desperately needed. I feel so good supporting this NGO because it is global and so scientifically laser focused. We will get results and answers of that I now have no doubt. With the legendary genius Dr. Ron Davis and so many other esteemed and dedicated internationally recognized scientists and medical researchers onboard with us now we are now finally on the right path forward. OMF has indeed become in just a few short years the top global independent ME NGO leader. I very much look forward to what medical advances and scientific discoveries our team will soon make. I am so very proud to support and be a member of the OMF family. Here is a photo used in some of OMF’s newsletters of myself modelling our official OMF bracelets for a recent fundraiser. Thank you Mrs. Tannenbaum, the mighty power of One. Sincerely, Susanne Engel

1 Erica71

General Member of the Public

Rating: 5

Open Medicine Foundation is the most impressive non-profit organization I’ve ever encountered. It is supporting cutting edge research and relationships among researchers that will help millions of people. As someone who is bedbound with ME, OMF is like a lighthouse in a dark storm. Thank you, OMF, for bringing hope to so many people.

1

General Member of the Public

Rating: 5

So hopeful for all the research that they do. They need all the support they can get. They are doing great research with limited resources. Perhaps they will also be able to help Long Covid which has become a big issue lately. We are all depending on finding answers and are thankful for the people who believe and support us such as this organization.

2

Client Served

Rating: 5

The Open Medicine Foundation and the research they do sometimes feels like it it the only hiope we patients with ME have to get a cure

2 Joanne C.7

Client Served

Rating: 5

I’ve had ME/CFS since 1980. Nothing is more discouraging than having doctors tell you they can’t find anything wrong with you and suggest that you see a psychiatrist, when you know that you have a profound health issue that’s ruining your life, and in my case, the life of my young daughter. I was a single professional Mom, trying to stay awake in meetings and having not an ounce of energy to give my daughter when I got home from work. Thank god someone finally took this horrible sickness seriously! The amazing work these researchers are doing is beginning to reveal the full range of biological and neurological systems that are affected by ME/CFS. Their collaboration with each other and with those of us who suffer this disease is amazing! We’re finally taken seriously. I just wish this had begun 40 years ago. I might have been able to lead an entirely different, more productive life, and surely would have been far more able to give my child the attention she deserved. I encourage those who can to donate to furthering this long neglected and much needed research. They’ve been operating on a shoestring budget and their work can progress much more rapidly with additional resources. Find out more about their great work on YouTube.

2

Client Served

Rating: 5

With OMF, I receive frequent, clear, scientific updates presented in a respectful and non-condescending manner. I am happy to support them with my humble donations and spread messages. I tune in to their various open houses and lectures (though let's be honest I don't really understand most of it :)) just to know that there are brilliant scientists working for this cause, when feel confident that when "something" breaks through, they'll be the first one to tell me, honestly and respectfully. Note: Dealing with MECFS, I went down way too many "rabbit holes" with different "science" organizations or advocacy groups but found nothing bad regurgitated (frankly) nonsense, anger, and false hope. I am grateful for OMF.

2

General Member of the Public

Rating: 5

I am from India and am suffering from ME/CFS for the past 2 years. Awareness about this disease is so low here, I had to run around for months before getting diagnosed. Open Medicine Foundation is the last hope for me. I visit their website everyday to see if there are any updates in their research.

2

General Member of the Public

Rating: 5

My best friend is losing use of her legs, her speech, and her faculties because of M.E. and related chronic, complex diseases. We are frustrated and angry that there is so little federal interest in researching M.E. OMF gives us hope that she will not be killed by this disease and that there will be answers soon.

2 froya

General Member of the Public

Rating: 5

Delivers hope and support pioneer-research. An important organisation for ME-patients and their families/network

Previous Stories
3

Professional with expertise in this field

Rating: 5

Provides hope and science for a population of patients that has a long history of stigma and neglect.
Opening up for medical progress, connecting medical professors from all the world to solve a devestating desease keeping kids (and adults) from participating in their own lives.

Read more
2

Donor

Rating: 5

OFM is the nonprofit I chose to support. I wish I had more to offer but given how limited my resources are, I felt OFM makes the most effort to maximize them and turn into tangible, palpable science-driven solutions to the most debilitating illnesses abandoned by NIH and CDC for several decades.

3 Sandra C.5

General Member of the Public

Rating: 5

Open Medicine Foundation is doing great work, leading the field in the research of Myalgic Encephalomyelitis that for decades has been ignored or misdiagnosed as a purely psychological condition. This has now been disproven but we desperately need diagnostic tests and treatments, if not a cure. I have suffered for decades from this condition and so have 100’s of thousands of others around the globe, including my father and grandmother, and with the help of OMF we now have very real hope that a cure will be found.

3 Bettina M.

General Member of the Public

Rating: 5

I'm a long-years sufferer from ME/CFS being the most neglected disease of our time and the last 70 years. There is way too less scientific research done in this field. Open Medicine Foundation is one of the few non-profit organisations dedicated to solving the mysteries of this horrible disease and finding a biomarker as well as treatment options with the help of the worlds most renowned scientists. If it wasn't for their precious work, i would already have lost all hope of getting my life back one day. They are worth every penny of the donations given to them!

3

Client Served

Rating: 5

OMF is an important voice and agent of change in the search for understanding of and treatments for ME patients. As part of this neglected and maligned group, I am grateful for their advocacy and the hope they offer for the future.

2

Donor

Rating: 5

My daughter has ME/CFS, and this organization gives us both hope.

3

Donor

Rating: 5

Open medicine foundation is giving me hope of getting my life back. They are my heroes!

3

General Member of the Public

Rating: 5

Thank goodness for the Open Medicine Foundation. They are giving me and millions of sufferers and their families hope that one day there will be treatments for ME/CFS and maybe a cure. This disease has been ignored by doctors, governments and society for far too long. We the sufferers have felt abandoned as we endure one of the most disabling diseases there is.
I’ve had ME/CFS for 26 years. I’ve been bedbound for the past 18 months. I’m 62. Time is running out. I want to live my life.
OMF are giving this disease the recognition it deserves. Their team of amazing researchers are working around the clock for answers.
Thank you !!

3

Donor

Rating: 5

Open Med is one of the most important nonprofits. The information is immensely helpful for those suffering and working through fatigue issues in their body. I will continue to support this foundation and their ever expanding work for years .

4

Client Served

Rating: 5

An amazing organisation giving hope to millions who have been left behind. All my fundraising and donations go to them.

4 Michelle Phillips C.

General Member of the Public

Rating: 5

Open Medicine Foundation is an amazing nonprofit organization! I am an identical twin and I have ME/CFS, but my twin is healthy. We are participating in studies that OMF are supporting. One of the GREAT things about OMF is that all research is shared on a data base with all of their researchers. This type of collaboration is allowing them to make great strides in their research. They have some of the most brilliant research minds in the Scientific community. I was a Professional Ski Patroller when I became ill with ME/CFS. Doctors where of no help! With my limited abilities due to the illness I had to do my own research. Thankfully I came across Whitney Dafoe's video's that his family had placed online and was able the get my diagnosis. What this organization has done in the past 4 years is extraordinary! Their dedication to this illness and the support of the patient community (that are so disabled) is remarkable!!!

3 Max N.

Donor

Rating: 5

I'm a monthly donor to OMF and I truly believe in their success in curing ME/CFS. There are dozens of legends working in OMF collaboration teams!

3

General Member of the Public

Rating: 5

This organization has given me hope for the possibility of recovery for both myself and others. I have been dealing with ME/CFS for over a decade and it brings tears to my eyes to see the great work Open Medicine Foundation is doing for so many who continue to suffer invisibly. Research is key. Understanding this illness is key. They are doing ingenious work with covid-19 long haulers and I hope they continue to do so to unlock the mystery that is MECFS.

5

Donor

Rating: 5

The OMF are literally keeping me and millions like me alive. They are my only hope of ever getting even some of life back. I’ve been completely suicidal depressed due to this disease but knowing that 0MF work so bloody hard round-the-clock trying to find answers and treatments for us, always brings me back from the brink. They are the most amazing people on this planet and care so much about helping us when everyone else neglected and stigmatised and left us to rot for decades without any hope whatsoever. Many patients have committed suicide in the past. Thanks to OMF we now have hope that things will get better. That we will live again. I cannot praise OMF highly enough. They are saving my life. They are saving of millions of people‘s lives.

3

General Member of the Public

Rating: 5

Thank heavens for OMF!! For those of us with ME, it often feels like the entire scientific community is ignoring us. OMF changed that by bringing together a passionate, brilliant group of scientists and helping them secure funding for their incredibly important research.

2 Amy S.16

Client Served

Rating: 5

M.E. is a desperately underfunded condition given the extent of suffering caused by the condition. The OMF is giving millions of sufferers hope where there was none.

1

Donor

Rating: 5

The best hope for ME sufferers globally. OMF tirelessly does great work and deserves more recognition and funding.

2

Client Served

Rating: 5

OMF is leading the way in ME/CFS research. They bring hope to the millions of us worldwide trying to survive this debilitating illness. It takes everything from you. People with severe ME are some of the sickest people in the world. We need more research, we need treatment or a cure, and OMF will be the ones to crack it. They are a dedicated team, some with the first-hand experience of loved one's fighting ME/CFS. They work tirelessly. I honestly can't think of another research team as dedicated as they are.
OMF give us hope that there is a better future out there. A chance to get our lives back.

2

Donor

Rating: 5

This is one of the only organizations trying to help fight for people with ME/CFS. I really appreciate all that they do. I have had the disease for 5 years and they give me hope.

2 Jerry W.3

Volunteer

Rating: 5

continuously researching ME/CFS and giving patients hope!

2

General Member of the Public

Rating: 5

OMF have given me and my partner (who has ME) the most hope. We could be years off a cure yet, but to see the work they are putting in, and to trust they are giving it everything they have means the world to us. We are in our late 20s, everyday we wish with all our heart that a cure will come soon, so we can still enjoy being young together and start thinking about having a family of our own one day.

2

Volunteer

Rating: 5

COLLABORATION. A powerful way to achieve results, when researching a disease so complex such as ME/CFS - and collaboration is in the core of the work at OMF. This NGO has already achieved groundbreaking discoveries and will continue to do so, aiming at finding treatment for the symptoms and hopefully a cure. My son and millions of other patients follow OMF’s work, which they share with their community on a weekly basis. I am part of their translator’s team, who help them reach patients, caregivers and the public in general in many countries around the world.

2

General Member of the Public

Rating: 5

In the 24 years I have had ME/CFS OMF has given us the most hope. They share their research openly, use their funds as well as they can to maximise the value they get from them, have people involved who have a personal interest in seeing a diagnostic test and cure for this devastating disease. They are working for their loved ones as well as all of us. They work tirelessly, take every opportunity to raise awareness and bring help to a substantial number of people who have had lives devastated by this horrible illness. My daughter is 30 and has had the illness since 13. All her dreams on hold. We are both house and bedbound. To know that OMF are tireless and dedicated to helping us gives us more hope than we've ever had. Thank you OMF.

2

General Member of the Public

Rating: 5

I am a mother of two small children- a preschooler and a baby. This disease has devastated my health, some days I can barely walk. I now need help caring for my precious children. I was young, fit, and very healthy when I got this disease. It can happen to anyone! Yet there is a horrific lack of understanding and no treatments available. Suicide is 8x higher for us. We need help! Our lives are passing us by. OMF is the only organization that I know of that is dedicated to a cure. Forget politics, forget who gets “credit”- OMF cares solely about a cure because the people that run the organization both have severely ill children. The organization is “open” meaning anyone can see their data and help solve this disease. Their recently published study brings us closer to a bio marker. The research coming out of this organization is some of the most important of our time.

1 Ingrid S.1

Volunteer

Rating: 5

Open Medicine Foundation are taking my health seriously with their excellent hard working projects, while others goes in circles and arguing about old missfeild arguments.
They listen to the patients experience, where other doctors choose to not listen. And from that OMF find importante emperi and ideas for there work and goals.

1 Sylvia R.2

General Member of the Public

Rating: 5

OMF have great scientists that are willing to fast track research with their open data policy. They give me hope there will be a cure for ME during my lifetime, even though I'm 48 and ME patients have a 13 year shorter lifespan. I've had ME since early childhood and want to experience a life where walking, eating, breathing and sleeping aren't as exhausting and painful.

2

General Member of the Public

Rating: 5

I am a 32 year old male with ME/CFS. I can barely walk much during the day, I push myself to work some small part-time jobs where I can sit and work, which still tires me out. This itself is difficult due to the cognitive dysfunction cfs causes patients, such as in my case.

Every day is like climbing a mountain, as soon as I wake up the morning stiffness is so severe my body almost can’t keep up with the pain.

The researchers investigating, finding, and presenting bio-markers that have validated CFS are all directly affiliated with the Open medicine foundation.

Their published scientific research and articles demonstrate the hard work and innovation they are bringing to the table to deal with this difficult challenge.

They are also actively looking for a cure, sympathetic to the needs of the CFS patient community.

In a way for many, OMF serves as a beacon of hope, or even our last bastion.

They have taken blood samples from me (and even my healthy relatives) many times and have run tests on them for their comparative studies, so I can personally say they are actively working on a day to day basis for the needs of the CFS community.

Please donate generously. Hopefully your funds can lead to a break through in one of the most devastating and debilitating sicknesses a person can deal with.

Thank you.

2 Hanna C.2

Donor

Rating: 5

OMF is the organisation that brings hope for so many people :)

2

Donor

Rating: 5

This organisation is conducting much needed biomedical research into ME/CFS. the work that they're doing gives hope to be and millions of other sufferers that I've day there maybe be treatment or even a cure.

1

General Member of the Public

Rating: 5

I am a mother of two young children struggling with this very debilitating and devastating disease, OMF brings real hope and understanding to my life. Thank you, thank you OMF.

1 Kathy B.6

General Member of the Public

Rating: 5

After 37 years of this illness, we finally have an advocate with power. Thank you, OMF, for bringing hope to this forgotten population.

2

Donor

Rating: 5

The Open Medicine Foundation is comprised of the best and most dedicated scientists, bringing hope to millions of people.

2

General Member of the Public

Rating: 5

I was 28 when I got this horrible disease ME/CFS. That is now 2 years ago. I can´t work and live the life I want to have. OMF is the onliest Organisation who has the power and knowledge to help us. But they need more funding!!!!

2

Donor

Rating: 5

My wife has been sick with ME for about 5 years. Like most people with ME, she cannot work and has had to give up most things from her previous life. There is no diagnostic test, no cure and no FDA-approved treatments. Government funding for ME is next to nothing. OMF does top quality and groundbreaking research and is the leading the way and is the standard-bearer for ME research. They are by far the best hope for the millions of people who have had their lives trashed by ME/CFS.

2 Anton K.

General Member of the Public

Rating: 5

My brother is tortured by this terrible disease. OMF are giving a little hope to him and his close ones, by their research. Their scientists seem really great, both competent and having an honest desire to solve the mystery of ME/CFS.

3

Volunteer

Rating: 5

I Will Tell You This
About Myalgic Encephalomyelitis:

When the pain is unbearable and my muscles cannot take anymore I am too exhausted. I need to lay down away from sounds, light or any distress. Seeking comfort and try to relax. Hoping for better days and results from OMF biomedic research...
Because there is no cure yet!

WE WANT TO LIVE! So please join in for more biomedical research in M.E.!

Petra

2 Joanne S.2

General Member of the Public

Rating: 5

I have suffered from ME for 28 years. Due to this illness I have lost a career, the chance to get married and have a family. I spend most of my time housebound, and alone. This is not the life I envisaged in my twenties. My life effectively came to an abrupt stop at the age of 27.
During the last 28 years there has been very little research into ME/CFS, particularly biomedical research. The Open Medicine Foundation are one of the few groups of researchers working in this field. Research gives ME patients hope, the OMF gives us hope.
Please let's not loose yet another generation to this dreadful illness because of lack of research. Support the OMF.

2

Client Served

Rating: 5

The OMF is dedicated to rigorous biomedical research into the much neglected illness ME/CFS. It does this very ethically, sharing data and reaching out to a wide range of disciplines. Most of all it giveaways HOPE

2

Professional with expertise in this field

Rating: 5

The Open Medicine Foundation funds top scientists to study one of the most neglected diseases of our time.

Myalgic Encephalomyelitis (ME) is often called chronic fatigue syndrome (CFS) even though it is recognized by the World Health Organization as a debilitating neurological condition. Research has shown that ME/CFS is more disabling than MS, congestive heart failure and end-stage renal disease. It is estimated that more than 1 million Americans have the disease and several millions worldwide. There is currently no FDA-approved treatment for ME/CFS and little is known about the illness.

The Open Medicine Foundation is dedicated to change that. It engages with the ME community and brings patients and researchers together in their quest for knowledge and answers. Most importantly: it brings high quality science to the field of medicine that needs it the most. I myself have been ill because of ME/CFS for more than 10 years. It has left me disabled, uneducated and homebound. There are millions like me suffering. Please support the Open Medicine Foundation and help find a cure for ME/CFS.