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Solve Me Cfs Initiative Inc

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Nonprofit Overview

Causes: Health, Specifically Named Diseases, Voluntary Health Associations & Medical Disciplines

Mission: The mission of the cfids association of america is for me/cfs to be widely understood, diagnosable and treatable by: identifying safe and effective treatments for me/cfs; strengthening the me/cfs community by empowering patients and engaging greater numbers in our cause; and aggressively expanding funding for research that will lead to approved treatments and cures for me/cfs.

Results: Since 1987, the Association has invested more than $30 million in programs to end the pain, disability and suffering caused by CFS.

Programs: Research - the cfids association has worked over the past 5 years to invest our constituents' donations in our research institute without walls (riww). Our innovative riww continues to provide early funding to the most promising researchers, using our solvecfs biobank to put patients at the center of that research; pairing patient samples and clinical information with the brightest investigators from the best medical institutions in the world. The research institute without walls focuses on: identifying disease subtypes and biomarkers (45%), developing disease-modifying treatments (25%), defining me/cfs (20%) and software tools (10%). Identifying disease subtypes and biomarkers - me/cfs is a multifaceted and complex disease. To discover the cause and effective treatments we must break down the complexity and identify groups of patients that are similar to one another. How is that done? With blood and clinical information. Blood is a 'molecular biopsy' that can provide clues to biology from all parts of the body. The solvecfs biobank harnesses the power of patient information and patient samples. The biobank has attracted some of the brightest investigators from the best medical institutions including harvard, columbia, johns hopkins, university of alberta, nyu langone medical center and university of toronto. Developing disease-modifying treatment - while funding cutting edge research to identify a cause, we are also identifying treatments that can help restore function and alleviate symptoms of me/cfs. While we work towards a cure we must develop disease-modifying treatments. Defining me/cfs - diseases must be clearly and unambiguously defined so that causes, and the cures can be discovered. We partnered with lenny jason of depaul university to use the data from the solvecfs biobank to help refine how me/cfs is defined. This research will help identify the "core signs and symptoms" of me/cfs so that the disease can be measured the same way by all investigators. The cfids association of america is working on a partnership with a real-time online platform where people can connect with fellow patients and expand our capacity for patient centered outcomes research through their shared data. The data can help researchers better understand the nature of the illness, detect patterns, and develop more effective therapies. Partnering, combining,g and growing our community, we will create a big data set of "well-defined and reliable" patient-reported outcome measures to provide evidence of treatment benefit. Managing, understanding and using this kind of big me/cfs data will be key to innovating the effective treatment for me/cfs patients. Software tools - we have partnered with a biotech company to build a digital library - one centralized knowledge base - of all the me/cfs medical literature and all open source biological data sets. This digital library brings the information to one place and translates it into a standard form. Software is under development to integrate this knowledge in order to generate theories that can lead to therapies.

communications and engagement - the association knows that we can't achieve our goals without an informed and connected patient population. Patients are a key ingredient to making me/cfs understood, diagnosable and treatable. To that end, we are working to empower patients with more information through our catalyst cafés, e-newsletters, the solvecfs chronicle publication and online. More than a quarter of a million people visited the cfids association website last year, most searching for answers, looking for hope. The association holds the most extensive library of patient information and resources, reports on the latest updates and research opportunities and helps patients feel less alone. In an effort to make this information easier to find, readily share-able and more deeply engaging we launched a new web presence which replaces the solvecfs biobank micro-site, cfids. Org and the research1st blog with one synthesized online presence. The synergy achieved through www. Solvecfs. Org will reach more patients, engage more in the research process, and better involve all me/cfs stakeholders in the important work of the association. Early numbers tell us that people are staying on the site more than twice as long as they did on the old website - a key indicator that visitors are finding what they need in a more welcoming format. We continue to hold catalyst café events across the us. Meeting in homes and offices, restaurants and community rooms, association staff members are bringing details about our research program and its impact to people who are most affected by me/cfs.

Community Stories

81 Stories from Volunteers, Donors & Supporters

2 Mark2END-MECFS

Donor

Rating: 5

Carol Head of Solve and Journalist Llewllyn King came to our home in San Ramon CA and filmed two segments about M.E., Myalgic Encephalomyelitis.

ME can be a severe illness, that has taken my healthy straight A Stanford student son, a 19 year old sophomore in Jan 2014, and converted him to a semicomatose bedridden 23 year old, unable to move, except fingers, cannot talk or eat, so on a feeding tube, cannot open eyes, tolerate any light or sounds. What were you doing at 23 years old. Solve and the CFS Chronicles help give hope, and seeking funding for R&D moneys to fund R&D to Cure M.E., and advocate for fair Federal funding of NIH $250M/yr for this illness, that is now at epidemic levels in US, more common than Zika, Ebola, West Nile, + Polio combined, yet grossly neglected at NIH for decades, and by the CDC that does not track this major illness affecting >1 million in US, 25% or which are severe = bedbound or housebond. See you tube about ME at: https://www.youtube.com/watch?v=7Ck9oWJilP0
Feel free to share widely.
Consider watching also Jen Brea's excellent 17 minute TED talk at:
https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose
Or seeing her new film Unrest in Theatres, then PBS in Jan 2018
https://www.unrest.film/

5

Volunteer

Rating: 5

I've been working with this organization for decades, and have nothing but positive things to say about it. They are ethical, superbly informed, and a marvelous resource for patients. They've been fighting for research, understanding and recognition for this disease, and the decisions they have made are brilliant.

Review from Guidestar

6

Client Served

Rating: 5

There is no cure for ME/CFS and no treatment available within the medical system, a fact that can make the future seem bleak at times. However, I am able to have hope for my future because of the knowledge that the people at the CFIDS Association (CAA) are working tirelessly to solve ME/CFS. Because of the CAA I have hope that there will one day be a cure for ME/CFS. As well, I receive frequent updates on current research funded by the CAA, reminding me that that work is being done each day to help me. This gives me validation and support in my struggle. The CAA also compiles knowledge and treatment information from top experts around the world, and this information has prompted me to make changes that have improved my quality of life.

Review from Guidestar

7

Donor

Rating: 5

We are family members of someone with ME/CFS and are impressed with the Research Without Walls program that we had the opportunity to learn about recently in Washington DC. The effort and expertise of those involved are moving toward answers for this mystifying and debilitating condition.

Review from Guidestar

4

General Member of the Public

Rating: 5

We are very impressed with this organization's wise use of funds that are donated to them. Their actions support a resolve to use the money in the smartest way possible to understand ME/CFS and contribute to medical advances that we can hope will one day lead to a cure.

Chronic Fatigue can be a devastating illness for patient's and their families. The Solve ME/CFS Initiative has offered real hope that lives can restored.

3

Donor

Rating: 5

Chronic Fatigue is a serious problem with many people today. The research that SMCI is doing is helping people have normal lives again. The more information we have the faster this can be solved. My family has directly benefited from the assistance and will support SMCI.

Review from Guidestar

5

Client Served

Rating: 5

I am very excited about the research they are startimg. The best part is they aren't locked into any one theory on why this is happening.

Can't wait to see the results

Review from Guidestar

5 Joe_60

Client Served

Rating: 5

I have been a patient advocate in this area since 2009, and have already seen many groups and individuals rise and fall in a brutal field for a brutal illness, Myalgic Encephalomyelitis aka Chronic Fatigue Syndrome. SolveCFS remains through all the turmoil of scientific disagreement, bureaucratic malfeasance, clinical disdain, scandal and scientific retraction. They have a demonstrable record not only of survival, but of parlaying small research studies into definitive findings and larger follow-on studies, maximizing limited research budgets. They make the effort to show up and meet patients at most related Federal and non-profit conferences on the illness. I only wish more outside researchers would realize the contribution they are making.

Review from Guidestar

5

Donor

Rating: 5

As a psychologist, I have experienced clinical research funding and clinical trials with patients. What impresses me about the research approach of the Solve ME/CFS Initiative is the wise use of contributions and funding sources in cost effective ways to get the most value and use in developing research projects from the funds available to them. To re-purpose the use of existing drugs that might be helpful in treating those with CFS has been a fairly novel, cost savings and common sense approach in the search for cures for ME/CFS. This is an important model for drug testing that can hopefully pinpoint more accurately and quickly drugs of potential benefit for symptom relief to a suffering population that is surely in need of symptom relief and return to normal living. Witnessing the struggles of families with a loved one stricken with ME/CFS demonstrates the courage, fortitude, and quiet perseverance of those who face each day with great effort and determination. Because symptoms are often invisible to the casual observer, the debilitating effects of this ailment are often overlooked or unfairly minimized. It is my belief that the ME/CFS Initiative offers real hope through effective research to a population much in need of relief. I am proud to give financial support the efforts of this organization.

Review from Guidestar

4

Board Member

Rating: 5

I'm committed to this organization because it is our best hope for solving this devastating illness. The staff are committed professionals and the board are highly capable and knowledgeable. I fully support their work.

4

Client Served

Rating: 5

I could write a soliloquy for this review...

Simply put.. They give me hope.


-DJ

Review from Guidestar

3

Board Member

Rating: 5

After my sister was diagnosed with ME/CFS, i went looking for organizations that were working to solve the mystery that is this disease. I was surprised at how little awareness there was of the disease, but was very excited to find the Solve ME/CFS initiative (CAA at the time) and to see that they were working hard to meet their mission of making ME/CFS understood, diagnosable, and treatable. What really sets SMCI apart from other organizations i've worked with is the laser focus SMCI has on leveraging patient centered research to find a cure. I'm honored to serve on the board of this amazing organization working to make my sister's and a million other people in North America's lives better.

2 Haley7

General Member of the Public

Rating: 5

This is an amazing organization with a smart, caring board. I feel like this organization gives so much hope to the people they serve.

Review from Guidestar

1

General Member of the Public

Rating: 5

I strongly support the Solve ME/CFS Initiative (SMCI) -- their mission -- their advocacy, their research, but most importantly the help and hope they continue to provide to countless patients and their families. This is what a good good non-profit organization has to do. They have to with great purpose and meaning educate the general public; help establish a sufficient level of quality research; and be a strong voice for those patients and children who struggle each and every day with a misunderstood and often poorly treated medical condition. My family personally knows a family that has found support, resources and a sense of community from Solve ME/CFS Initiative (SMCI). We have seen first-hand the difference that this advocacy organization has made in their lives. Generous donations are critical to the success of this outstanding organization so make one today! Duchy Trachtenberg, MSW

Review from Guidestar

2

Client Served

Rating: 5

Solve Me/CFS (aka, CFIDS Association) is a lean green fighting machine. Fighting to get the answers that will bring treatment or even cure for people like me. I have been very ill for 30+ years and still there has been no research done to explain the cause of ME/CFS.
Medical research is usually funded by the government and then picked up by drug companies. However the government has refused to adequately fund ME/CFS research in all my 30+ years.
So now Solve ME/CFS is ingenuously funding researchers via patient donations.
In just three short years this research has already yielded staggering information on the probable cause(s) of ME/CFS and even pointed to possible treatment by drugs already approved by the FDA.
Every penny Solve ME/CFS receives generates many dollars worth of results for understanding and hopefully treating the disease.
And those results are immediately available to researchers in other fields who may benefit too.

Review from Guidestar

2

Donor

Rating: 5

For more than 25 years we have witnessed the daughter of friends cope with the debilitating effects of CFS. Distressingly, a cure seems beyond the horizon. Lacking significant support from the government or pharma, research is neither wide-spread nor adequately funded. Therefore, it falls to the hands of those outside the system to stimulate the research effort. Through our friends we have become familiar with the Solve ME/CFS Initiative and its efforts to attract and sponsor scientists interested in finding a cure. We’ve been impressed with the well thought out plans of the organization and its efficacy in translating them into action. We’ve become supporters of SCMI. It clearly deserves the support of others, as well.

Review from Guidestar

2

Client Served

Rating: 5

I am the mother of a 28 year old young man who was diagnosed with CFS at the age of 20 after becoming acutely ill at 19. In hindsight, it seems clear that David's struggle began many years before leaving for college, maybe even 15 years ago. It was apparent to us that something was not right, but all the labs always returned normal. Unfortunately, he was unable to complete more than 2 years of college. How he was able to do that is due to heroic efforts on his part and desperately wanting a normal college life. A very bad case of mono blew things out of the water and David's body seems to reactivate this virus ongoing. David's immune system does not function properly, he has developed food allergies, as though his body sees food he has eaten for years without issue as an invader. Stomach issues have been some of the worst symptoms for him to tolerate. He is unable to eat outside our home and has lost over 20 pounds, when he was already too thin. I noticed in high school that as David's friends gained muscle mass and became manly, David seemed to be losing muscle mass.

David was diagnosed with CFS by Dr. Peter Rowe at Hopkins, due to his allergy & immune issues as well as orthostatic intolerance. Peter was the first to tell us that CFS patients are unable to digest milk protein, even though the allergy tests always return as negative for milk allergy. For years we thought it was only lactose intolerance, we were poisoning his already compromised immune system. There were many other untreated infections throughout David's medical history, several doctors believe that David has serious & complex infectious disease issues, no one knows how to treat them.

It is our belief as David's parents that research to identify bio markers and treatment options is the best hope for improving the lives of patients. David suffers physically & emotionally everyday, he is too disabled to work, have a girlfriend, raise a family, or do anything that defines a life. These patients have been ignored and mistreated for far too long. The best resource for good information and assistance throughout David's journey and ours as his caretakers, has been the CFIDS Association, now the Solve ME/CFS Initiative. They are well managed, well organized and very scientific in their approach. They deserve to be well funded as their mission is focused on research, as it should be.
Diane & John

Review from Guidestar

1

Volunteer

Rating: 5

The CFIDS Association is run by smart, caring, dedicated people determined to improve the lives of people suffering with ME/CFS. The organization is the best hope of patients and their friends and families for getting a cure and stopping the suffering.

Review from Guidestar

1

Donor

Rating: 5

I learned about SCMI (formerly the CFIDS Assoc. of America) in 2011 when I got back in touch with a good friend from college and learned that she was (and is now again) a member of its board of directors and that her daughter has suffered from ME/CFI for many years. This personal connection led me to take a closer look at this disease and to appreciate how debilitating it can be and how much needs to be done to be able to treat it effectively. I am very impressed by the cost-effective and focused strategy that SCMI is taking to fund research to find a cure for ME/CFI and for this reason I have been making significant donations to them over the past four years.

Review from Guidestar

2

Professional with expertise in this field

Rating: 5

After coming down with CFS two years ago, finding the web site for CFIDS Association of America (now Solve ME/CFS Initiative) was a godsend. It has been the best clearing house of reliable information. The organization continuously posts abstracts of recently published research articles. It raises money to provide seed money for new research initiatives, many of which have gone on to land more substantial grants from government funding agencies. This fall, some of these funded researchers have been giving webinars on their work, webinars organized by the Solve ME/CFS Initiative. The non-profit maintains a "Biobank" of frozen blood and cells from CFS sufferers as well as controls that researchers can apply to use, simplifying their search for samples for their research. It also keeps us informed of relevant conferences and meetings held by the FDA and the IOM so that we can tune in via the web. As a PhD in biology with years of research and teaching under my belt, I greatly appreciate what this organization does, value the quality of information it provides, and hope that its interaction with government agencies results in increased funding for research on this mysterious and debilitating syndrome. I, as well as members of my extended family, eagerly donate to help their efforts.

Review from Guidestar