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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

82 Stories from Volunteers, Donors & Supporters

3 Mark2END-MECFS

Donor

Rating: 5

My 24 year old son was straight A college student, perfect health, became ill in 2014, now very severely ill. Very little organized advocacy and non-profit R&D has occurred for ME-CFS, but Carol Head, Emily Taylor and others have done a very successful job of advocacy, including in front of congress, and fundraising to do starter research grants. SMCI, aka SolveCFS.org has done a stellar job of helping the #MillionsMissing with this #ForgottenPlague called ME (CFS). Hope you might donate to help those who have had little hope, since most never fully recover from ME/CFS. We donate annually and this is having an international impact for M.E. (Myalgic Encephalomyelitis)/CFS

Previous Stories
4

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/

7

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

8

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

9

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

6

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.

4

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

6

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

6 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

5

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

3 Abby E.

General Member of the Public

Rating: 5

My sister has struggled with CFIDS for more years than I can count and has flown all over the United States trying to get the optimum treatment. I have watched how this disease has impacted her. She talks about this organization and all that it has done for her in finding information so that she can understand what is going on with her and help to find ways to make her family understand as well.

Keep up the good work!

Abby Eibel, MA.Ed, LPC/MHSP

Review from Guidestar

1

Client Served

Rating: 5

I have ME/CFS and have found the organization to be very impressive...and helpful. It has been an incredible reference for me to learn about the disease and to find out what is happening in research/government, etc. I also really appreciate that the organization travels around to hold roundtables around the country - for so many of us, it's the first time we've been both able to talk to experts and to get support. (And I"m impressed and appreciative that these roundtables are focused on our needs and not asking for donations, however important that is.) And while I"m fortunate not to be housebound, holding "webinars" to let us know what's going on is fantastic. The staff (and board members I've met) are so committed.

I also value the organization's recent turn to emphasize leading/funding research. While I value everything it's done historically, the paucity of funding and research into ME/CFD makes the organization's efforts in this area critical if we are to make headway in understanding and treating the disease.

In sum, when I see/read all that Solve ME/CFS does (and has done), I'm amazed that so many things have been accomplished by such a small organization.

Review from Guidestar

1

General Member of the Public

Rating: 5

I am extremely grateful for SMCI and the work they are doing to help solve the heartwrenching disease called CFS. My daughter has suffered for over 6 years with CFS. Knowing that excellent, trustworthy research is being funded and supported by SMCI gives us hope that a treatment will be found. This organization is doing essential work for ME/CFS sufferers around the world.

1

Volunteer

Rating: 5

The researchers this organization funds are world class. I have seen several of them present their findings and the progress they are making is very exciting. The leadership is tireless and focused yet willing to pursue any approach that will cure this disease.

Review from Guidestar

1 Barbara190

Donor

Rating: 5

This is an excellent, well-run organization, with fine leadership. Its mission to support much needed research for this misunderstood condition deserves support.

beverley31

General Member of the Public

Rating: 5

The CFIDS Association of America has provided me with invaluable information over the years. Without the guidance of the research done, the research collected and the reasearch shared we would have been like a ship without a rudder.

Review from Guidestar

1

General Member of the Public

Rating: 5

I have a very close friend who has depended on your organization for years. She has often told me how helpful it has been for information and support. Struggling with this illness is stressful and sadly, often unrelenting.

I am hopeful that the work you do will continue.

Review from Guidestar

2

General Member of the Public

Rating: 5


CFIDS is a huge problem that needs our attention , affects many and ruins lives. This org. Does the necessary work that no one else is doing. Smart dedicated people trying to efficiently solve big problems. I am pleased to give review and make donations when I can.

Review from Guidestar

2 Terry60

Donor

Rating: 5

Shortly after I was diagnosed with ME/CFS I discovered this organization and frankly it saved my sanity. I had no idea what the illness was and neither my doctor not I knew how to treat it. The organization gave me information and support and the knowledge I was not alone . Just the stories of others and their experiences with the illness gave me confidence. It also serves as a repository for research information but does an excellent job of screening studies for quality and is careful not to
jump on the latest bandwagon.
Over the years the organization has varied its focus , at the urging of patients, from expanding public awareness of the illness to serving as a catalyst for research. Its efforts have enabled researchers to collect pilot data that could then serve as the basis of successful large scale grant requests. I am now a simple member and donor to the organization but have previously served on the Board and used my research skills to review applications for pilot study funds. I have watched as the organization created a Biobank data set of persons diagnosed with CFS and controls to enable researchers to have access to a credible pool of persons willing to participate in research. This dramatically shortens the time needed for studies and ensures quality in the population studied. In return the Association retains access to the research results. It is one of the most creative research structures I have ever seen and promises to dramatically speed up progress. I know my funds donated are well spent and can see the results in Webinars held by the researchers during the year to summarize their findings.

Review from Guidestar

2

Professional with expertise in this field

Rating: 5

Solve ME/CFS Initiative is an important leader in the effort to find the cause of ME/CFS while simulataneously trying to make it easier to live with this serious disease. They lead with choosing and funding research projects, lobbying our government health agencies to support interest in and research of ME/CFS and educate patients and health care providers. They also started a BioBank of appropriate blood samples from patients which researchers use.

Solve ME/CFS Initiative is pursuing exciting ideas to help people with ME/CFS.

Review from Guidestar

1

Donor

Rating: 5

So impressed by the work and accomplishments of this organization. It is a smart nonprofit, doing great and much-needed work! Highly recommended.

Review from Guidestar

1

General Member of the Public

Rating: 5

Our family knows firsthand the debilitation of CFIDS, now better known as ME/CFS, as both my husband and oldest daughter suffered from it for years and still battle lingering effects and occasional relapses. Too little is known about the disease and especially about ways to cure people so we have been deeply impressed by the decision to devote far more attention to research and less to patient advocacy. Of particular interest is the idea of a research institute without walls, that is, funding focused, useful research at different institutions under the coordination of a scientific director. This approach seems excellent value for money and offers the promise that research by different scientists in different locations can be tapped to finally provide insights into solving and curing people of this debilitating disease.

Review from Guidestar

2 Cort

General Member of the Public

Rating: 5

I have been following the CAA ((Solve ME/CFS) for decades. I can rely on SolveME/CFS to take a rigorous approach to the issues facing the ME/CFS community and produce thoughtful analyses of them.

I have been impressed throughout with their dedication to producing innovative research projejcts Their research program has supported several pilot projects which have opened up vital areas of ME/CFS research. One was their early support of using exercise testing to highlight abnormalities - an approach that is used throughout the field now. From their Biovista to their Logosomix to their recent exercise-cognition-fMRI study, Solve ME/CFS is on the cutting edge of innovative research in this field.

Review from Guidestar

2

General Member of the Public

Rating: 5

CFIDS Association, now Solve ME/CFS Initiative, does an amazing job in terms of advocating for research support for CFS research. No one else is so singularly focused on research and does so much on a tight budget. It has supported so many talented researchers who otherwise would never have been interested in studying CFS.

Review from Guidestar

2 Lo D.

Donor

Rating: 5

I have followed the work over many years of close friends' fight to help their daughter. How they have turned over every stone to find a way forward and increase the prospect of effective treatment. The focus of SMCI's is to provide research support that better can help to understand the illness and its possible cure by instituting a BioBank that is "research ready", supplying grants to researchers, and connecting researchers in an "institute without walls". I am most impressed by the persistence, profound knowledge and drive of the people involved in the SMCI.

Review from Guidestar

2

General Member of the Public

Rating: 5

My friend has a daughter who has been diagnosed with ME/CFS and she has shared how the organization has supported her daughter and their family. I have sent the organization's resources to a cousin who is living with ME/CFS and she is grateful for the information. The research that is being conducted by the distinguished scientists, affiliated with the organization, and the promising findings they have discovered, provides hope for the patients of ME/CFS. Members of the Board of Directors are dedicated and committed to helping patients and finding a cure for ME/CFS, and I believe that this is an excellent organization that should have my support and the support of others.

Review from Guidestar

3

General Member of the Public

Rating: 5

I have two family members who face the enormous challenges of ME/CFS. I have seen first hand the debilitating impact of this disease and know how helpful this organization has been to them. Thank you for the support you provide to those who suffer with CFS.

Review from Guidestar

2

Volunteer

Rating: 5

One of my best friends has received tremendous support from CFIDS and its predecessor organization for nearly three decades. It has been a lifeline of information and assistance to her in dealing with ME/CFS. I hope your organization continues to perform research, provide information and help to those with this incredibly debilitating disease. Keep up the great work!

Review from Guidestar

2

Donor

Rating: 5

I became ill with ME/CFS in 1986 when SMCI (formerly CFIDS) was nearly my only source of information about the disease, treatment and my experience as a patient. Their educational materials and communications helped me understand what was happening to me and gave me a way to explain it to my family, friends and doctors through many tough and baffling years. SCMI was, and remains, a primary source of hope and encouragement in my life and a means to connect and share my experience with other patients, now friends.

I regularly attend the research roundtables and webinars and I am thrilled and excited with the direction of the organization, particularly since Suzanne Vernon came on board. Under her brilliant leadership SMCI will continue to advance the science and I believe ultimately fulfill its mission to make ME/CFS understandable, diagnosable and treatable. I recently met Carol Head and I have a lot of confidence in her ability, along with a strong board of directors led by Vicki Boies, to move the organization forward in support of their new research agenda. The seed money they have provided to new researchers has already had a huge impact both in terms of new discoveries and its ability to generate additional government and private dollars. The biobank will attract new researchers and allow them to share knowledge and discoveries in ways that are unprecedented in this field.

Unfortunately, the ME/CFS community is a fractured one that has not yet found a singular, coherent agenda. Because we don't always agree, and sometimes voice our controversy in non-productive ways, SCMI has over the years sometimes found itself in the eye of the storm. I am deeply appreciative that SCMI (then under Kim McCleary's leadership) continued to remain a strong and unwavering advocate for people with ME/CFS in spite of, at times, some pretty tough criticism.

For all of these reasons, I feel extremely grateful to this organization. I know that every dollar I donate is an investment in the future of the millions of people worldwide who suffer the losses that come with this disease. I only wish that I could give more.

1

Donor

Rating: 5

We are certain that this organization is doing everything possible to find a cure and give assistance and hope to the families who are affected.

5

Board Member

Rating: 5

My family first found this organization 25 years ago when we needed information for our family member who was diagnosed with ME/CFS. We were greatly encouraged by the organization's 2008 decision to focus on funding cutting-edge research to be able to diagnose, treat and cure this illness. We believe that the organization's funding of the best scientists, along with creating infrastructure like their biobank which makes it possible for more researchers to study ME/CFS, offers the very best hope for patients and their families. Since 2010 I have served on the Board of Directors and have continued to be impressed by the board's and staff's dedication to the mission of solving this terrible illness. This is an effective, well-run organization that deserves support.

Review from Guidestar

2 Pam_83

Board Member

Rating: 5

In 1993 I became ill with a flu I could not shake. The then CFIDS Assoc of America was a beacon of hope and the only source of reliable information I could find. Over the years, I contributed and continued to rely on the Chronicle and SolveCFS.org for objective information. Then last decade, approved wholeheartedly as the organization crystallized it's commitment to "a world free of ME/CFS." Since then, a strategy of using seed grants to young and/or "new to ME/CFS" researchers has accelerated the pace of research. Recent results include groundbreaking work in epigenetic changes, the characterization of PEM, and the immune signatures, to name a few. A phenomenally high proportion of the Solve ME/CFS Initiative's seeded researchers receive major follow-on funding grants. This success comes from infrastructure and talent this organization has strategically and cost efficiently built, and tools to allow for more efficient and effective research. I was so impressed, I began volunteering for the organization in 2011 and joined the board in 2013.

2

Donor

Rating: 5

Our lovely daughter developed ME/CFS when she was 15, in 1998. In a matter of months she went from being a normal healthy teenager -- an honor student and athlete -- to being totally disabled, which she remains today. The Solve ME/CFS Initiative (SMCI), formerly known as The CFIDS Assn. of America, has been a lifeline for our family from the beginning of her illness. In the early days it provided the most comprehensive diagnosis and treatment information for patients and their families; all diagnoses and treatments were and still are symptom-based. The organization advocated for increased funding, and generally worked to raise awareness about the devastation of the illness with the medical profession, Congress, and the general public, including with schools and employers. But since switching its focus to research in 2007-08, the organization has put its limited resources where my heart is: scientifically understanding and then treating this horrible disease. In its initial two grant cycles, the organization selected and provided seed funding for innovative research specifically targeting the biological systems known to be affected by ME/CFS, which led to millions of dollars in follow-on government research money. In 2009 it was the only patient-affiliated ME/CFS organization to call for scientific validation of the claimed retrovirus XMRV cause of ME/CFS instead of rushing to promote the potentially dangerous use of anti-retroviral drugs. My wife has twice served on the board, including currently, because this is the organization we trust to be straight with patients and remain focused like a laser-beam on solving, and then resolving, the medical mystery of ME/CFS -- for our daughter and other patients like her.

Review from Guidestar

2

Board Member

Rating: 5

I have depended upon Solve ME/CFS (formerly CFIDS) for objective information since I chaired the NIH ME/CFS Working Group. However, their focus on biomedical research for ME/CFS is why I've continued to rely on their news and joined their Board. Solve ME/CFS brings new scientific talent to the field and helps them get started. New, exciting initiatives are in the pipeline too. We need organizations like Solve ME/CFS to help connect patients/advocates/general public with the research communities. They leverage their strengths by working with other ME/CFS organizations to make each donation stretch farther and have increased impact on curing this disease. This organization is well worth my time and effort.

Review from Guidestar

7 Wildaisy

General Member of the Public

Rating: 1

This organizations says it represents the interests of people with "CFIDS." Maybe it does. CFIDS is a wastebasket diagnosis that includes people who are simply tired or depressed. However, the disease from which I suffer is Myalgic Encephalomyelitis (M.E.) which is a much more complex illness, with both physical and cognitive symptoms. The symptom of overwhelming fatigue is only one symptom in many. M.E. is defined by the International Consensus Criteria. (http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/abstract ).

Most recently, on August 8, 2014, the day set aside by M.E. patients to recognize the existe.ce and needs of patients with Severe ME--Severe ME Awareness Day--this SMCI chose to publicize an article about vacationing while ill. This is a ridiculous slap in the face of every real ME patient. I would like to have made my comment directly to the CAA/SMCI, but they have blocked me from posting there.

If CAA/SMCI actually represented real patients in the past, it does not do so now. Now it is only interested in maintaining the extraordinarily high salaries and benefits of some of its employees and perpetuating the existence of the organization.

These people should be ashamed to be pretending to represent this neglected patient group. They could at least be honest and rename their organization to something which reflects the fact that they really represent tired and depressed people, not people who actually suffer from the all-too-real illness of Myalgic Encephalomyelitis.

Review from Guidestar

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4

Client Served

Rating: 1

I have been suffering from Myalgic Encephalomyelitis (also called Chronic Fatigue Syndrome) for 30 years. For the last ten years, the CFIDS Assn. of America has served its own interests (large executive salaries and special benefits) rather than the needs of people who suffer from M.E. They continue to misrepresent the serious and life-destroying nature of the illness as merely annoying. They spend the available research money on psychological research rather than researching the physical cause of this very real illness. They are now advocating Cognitive Behavior Therapy and Graded Exercise Therapy for the physical illness which has disabled me and now keeps me bedbound. Further, they refuse to answer questions from M.E. patients about where they get their funding and how they spend it. They are much worse than unhelpful to M.E. patients; they are actively harming us.

2 hope4us

Client Served

Rating: 5

The CFIDS Association proactively encourages ME/CFS researchers with seed grant money. They are fill a niche for small researchers to prove their hypothoses and then to obtain much bigger grants from the NIH.

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1

Donor

Rating: 5

I have had CFS for 5 years and have went from working in excess of 40 hours per week when healthy, to part-time and last year to totally disabled. I have a lot of time to lie down and think each day and I believe that my best chance of getting well is to support the CFIDS Association.

This organization has and continues to provide funds for innovative research projects that would likely not be done otherwise. One of the projects is even coming close to finding the first biomarkers for this disease!

Biomarkers would help doctors, for the first time, to recognize this illness in their patients. And biomarkers would justify more research grants, especially from the government. But mostly, this horrible illness will come a big step closer to being understood, treated, and possibly cured one day. I am betting my life on the CFIDS Association.

1 frenchtulip

Client Served

Rating: 5

For nearly twenty years, The CFIDS Association has provided me with invaluable information on ME/CFS and the latest research. They have engaged in advocacy which has greatly advanced our cause. Recently, they established an innovative "Research Institute Without Walls" to facilitate a scientific understanding of the illness. This is a superb nonprofit with a highly professional staff. I am enormously grateful for all they have done to help me and the countless other patients in this country and around the world!

2

Client Served

Rating: 5

I became sick in 2003, diagnosed in 2004 with CFS, Chronic Fatigue Syndrome, and I've been disabled by it since. From the beginning, I wanted to learn everything I could about the illness to help both myself and my doctors to find the leading voices in research and treatments for the condition was obscure at best and even maligned and disbelieved. Early on I was glad to discover the CFIDS Association of America on-line--and that there was a better name for what I have: Chronic Fatigue Immune Deficiency Syndrome. "Chronic fatigue"--which without the capital letters is a symptom of many different illnesses that are not the same disabling and complex disease as CFS. "CFIDS" was coined at a time when another Immune Deficiency Syndrome was being taken very seriously by the medical community and government research funders, and comes closer to capturing the severity of this illness. Things like the name of an illness may seem like splitting hairs to someone outside of the patient community, but it has mattered greatly for generating funding as well as basic empathy, and the CFIDS Assoc. has headed the charge for patient advocacy since long before I became sick. Their advocacy resources were really helpful for defining the illness, the history of it and the case definition, info to share with family and friends as well as doctors, how to manage daily living--things that people disabled by illness need. Over time I came to appreciate the difficult task they had of trying to push government institutions and drug companies to respond to this health crisis; what they couldn't describe in their materials was that they were as frustrated and disillusioned with the system for funding research as the patient community was. Us PWC's ("People With CFS") began to dig more deeply into the science of the illness trying to figure out ourselves what our medical leaders weren't, and in the first few years of my illness the CFIDS Assoc. wasn't so strong in the detailed scientific studies that many of us wanted. However, in the last few years they've made a huge shift in that direction, funding research themselves and connecting researchers and their studies for exponential good. It's palpably exciting. The webinars the CFIDS Assoc. present lead by the scientist and clinicians they've funded have been the best medicine I've received. Suffering through the first years of an illness so misunderstood and understudied was an insult on top of the injury of the illness itself, but listening to the researchers shows that our suffering has not gone unnoticed; smart and kind people are on the trail, help is on the way. We can focus on rest and healing and not having to prove that we're sick. Through no fault of the CFIDS Assoc., disappointment naturally will follow the hopefulness the webinars elicit, for while the research validates and corroborates the symptoms we feel it's clear that the science has a long way to go before causal agents are pin-pointed or the resulting multi-systemic syndrome is unraveled enough for treatment interventions. Still, this validation--for the scientific world out there as well as the inner psychological landscape of us PWC's--is technically and organizationally the right start. On a practical level, printing out graphs and diagrams from the webinars gives me something to show not just friends and family but also my doctors the bio-physiological differences between tired healthy people and PWC's. Earlier this year I was thankfully able to get to a CFIDS Assoc.-sponsored gathering in my city called a "Catalyst Cafe," where Pres. Kim McCleary and Scientific Director Suzanne Vernon rolled out their new initiative/organizing principles for a Research Institute Without Walls. Along with others in the broader medical community, they realized that the paradigm of one-off studies performed with widely divergent criteria in isolated bursts of interest from a variety of institutions have lead to "apples and oranges" results in the medical literature and few gains that actually help patients. Creating a new paradigm of patient-centered research, they outlined how recent CFIDS Assoc. grantees' studies (the ones that have been so validating for me in webinars) lead to additional and greater funding from outside for further studies--real momentum rather than the stagnant efforts of government groups! They also outlined how the current and future grantees will collaborate and communicate while utilizing a BioBank of samples so that they and the medical literature will soon talk "apples and apples." My husband and I have just volunteered to be part of that BioBank, to do what we can to help the CFIDS Assoc. studies and advocacy for this group is now way ahead of anything I hear coming out of other sources, including the NIH and CDC. Through their website and newsletter, I keep abreast of these big picture developments, but also find meaningful connection with others with this illness through their links to some of the best CFS blogs. This illness is isolating, but these resources help me to feel a community.

3

General Member of the Public

Rating: 5

The CFIDS Association of America's research program is extremely important to the entire ME/CFS community. I also really appreciate their webinars, for example there is one on post-exertional relapse in July.

3

General Member of the Public

Rating: 5

When I was diagnosed with CFS eleven years ago, I researched where to turn for hope and help, and I found the CFIDS Association of America to be one of the most important places to turn to (the nonprofit Phoenix Rising is another). I had quickly realized that awareness of ME/CFS in the medical community is low and that ME/CFS research is hugely underfunded - and that until reasonable funding is directed towards biomedical research, I will remain severely ill and isolated from life. I needed to turn to people and organizations who could make things change. We need a dedicated and tireless effort to foster biomedical research, and right now it's up to us patients and our nonprofits. Without actors in the field like the CAA and Phoenix Rising I don't know where I'd be.

4

Client Served

Rating: 5

I have been a strong supporter of the CFIDS Association of America for over 20 years. I was privileged to serve on its board of directors for several years until my illness became too severe for me to continue. I first became aware of the CFIDS Association as I searched for information about chronic fatigue syndrome after being diagnosed with this devastating, poorly understood illness. The information I received from this fine organization was always the most reliable and scientifically sound information available. The CAA was always a beacon of hope for me, particularly when my teenaged daughter was diagnosed with the same illness. When the CAA learned that I was willing to speak publicly about my illness, they provided me with many opportunities to do so, from the National Institutes of Health to the US Congress, from small radio and TV stations to Oprah. When I became a member of the board of directors, I worked with other volunteers, most of whom were living with CFS, who were willing to devote their very limited resources to this fine organization. The staff has always been completely dedicated to the goal of understanding, treating, and curing this disease.

In recent years, the CAA has turned its efforts toward creating a research environment in which these advances can be made. They have funded and coordinated a group of dedicated researchers, the “Research Institute Without Walls”. As a former scientist, I have been very excited to see this kind of research effort blossom and I am more optimistic than I have ever been about CFS research. The CAA shares information about this research and other CFS research through its Research 1st website, its newsletters, and a wonderfully informative series of webinars. The dedication, professionalism, and vision of the CAA is always inspiring and encouraging to me and I am proud to be a supporter of this great organization.

2 Emma3

General Member of the Public

Rating: 5

For me, as an ME/CFS patient, the CFIDS Association of America represents hope. In the ME/CFS community, we have very little to feel hopeful about. The public institutes are spending pocket money on ME/CFS research and are doing very little in the area of education and awareness (sometimes rather messing things up than clearing them up). While we need to keep advocating for change in the public bodies, at this point in time we need to rely on other actors such as the CAA. In the past decade I have seen the CAA fund some of the most important biomedical ME/CFS research, such as the Stevens Protocol of exercise testing for ME/CFS and the research on gene expressions after exercise (Alan Light and Kathleen Light). Many of the projects they fund go on to recieve - the very hard to come by - public funding. I think the CAA is helping us move forward in a really difficult terrain.

2

Client Served

Rating: 4

The CFIDS Association's Research Institute Without Walls is facilitating research into ME/CFS that traditional sources like NIH, CDC, etc haven't been funding as they ought to. The Association works hard to dispel myths about ME/CFS and to educate people about this horrid, disabling illness. Research and education provide hope. Thank you CFIDS Association of America!

3

Client Served

Rating: 5

After my diagnoses in 2005 I turned to The CFIDS Association (CAA) in order to educate myself about CFS and search for healthcare providers. Although I also have Fibromyalgia I never felt as connected to the resources available for that illness as I did with The CAA. The professional and personal dedication of the handful of people that make up The CAA to finding biomarkers, treatment and possibly a cure for CFS has never wavered, and I appreciate their focus on collaboration and hard science as a vehicle. I have benefited from their information sharing, (free webinars, Research1st page, CFIDS page, CFIDS on FB & Twitter), their support and representation at the government level (CFSAC meeting, etc), research grants (several solid ongoing research projects they support), and I believe their collective years of experience and passion for this cause are demonstrated through their work. This is why I support them with donations, but I also organize charity events and donate a portion from sales of my art work. The CAA understands that creating an environment of collaboration among scientist, biopharmaceutical companies, the government and The BioBank will hasten the Race to SolveCFS.

3

Donor

Rating: 5

I have been ill with ME/CFS for 26 years. During that time, the CFIDS Association has always been there for me - first with information I needed to cope and now, doing innovative research and linking researchers. I am so impressed with how they have developed and so hopeful as a result of the current research approach. Thank you CFIDS Association!

3

Donor

Rating: 5

The CFIDS Association is the leading non-profit research group working on ME/CFS. It has funded more ME/CFS biomedical research than any entity besides the federal government. It's last round of grants secured a 7 to 1 return on donations in federal grant money. It has funded most major research groups and many of the breakthroughs in biomedical research on this illness. The staff has knowledge and experience, and is now leading the way in research innovation.

1

General Member of the Public

Rating: 5

The CFIDS Association of America (CAA) is, without a doubt, the leading advocate for ME/CFS research in the world, and the folks who work for the Association work tirelessly at fighting for patients, campaigning for research projects, and providing helpful treatment and management tips for patients. It is the longest-serving advocacy group for CFS patients, and its track record is undeniable. The Association's leadership is unmatched, and I challenge anyone who disagrees to try to build the rock-solid foundation upon which the CAA stands. The Association has been successful in funding important and dynamic research projects which will undoubtedly lead someday to a complete public understanding of CFS and at least a reliable treatment plan. Its commitment to research is one of its best qualities, and the CAA has done very well to reach out to some of the best medical and scientific minds working on the ME/CFS case. It is also a poverty that so many reviewers feel that they have been brushed aside by the Association. They are the leading advocate for CFS patients, and the CEO works 50-60 hour weeks to make sure progress is made on all fronts in the fight against CFS. With countless newsletters and sources of information for those who are interested in or suffering from CFS, the CAA has done an outstanding job of keeping its supporters filled in on where donations are going and informing them about what the medical community is saying about the disease. It is understandable that so many people are upset that their lives have been turned upside-down by ME/CFS, but with the Association’s mission to use science and research as the main weapons against the disease, there will be progress. Libels and slanders against the Association does nothing except weaken the cause for which the CAA fights, and it’s the same cause that everyone who has experienced the quiet destruction of chronic fatigue fights for: eliminating CFS.

4

Client Served

Rating: 1

I began 5 years ago with this debilitating illness looking for help to understand what I was experiencing. No physician will help or even acknowledge the Name of my demise. CAA was front and center with information on their website, I began to follow. Over the 5 years, my health is worse, I can no longer work, and I can see that this organization is more about gaining funding to keep their jobs, and be the beloved puppy for the CDC & CFSAC Committee. CAA is more about carrying out the mission of denial, disgrace & destruction toward those who are out in the field trying to find the bio-markers, diagnostic tests & any hope of medication or treatment. I seriously don't see they are interested in advocating for the needs of people with this debilitating illness. They don't even have enough respect to change their name to acknowledge Myalgic Encephalomyelitis (ME) which is the real deal here. They seem to be more of an attack dog for the CDC to sabotage progress. My intuition is rarely wrong, and I have been unable to accept any information that comes from the CFSIDS Assoc. as legitimate progressive support for a growing, yet rapidly tragic future of recovery.

Review from Guidestar

5 Rod Powell

Client Served

Rating: 1

another client not served--the CFIDS assn of America has been doing disservice to the people it says it represents for 20 years now, since it was taken over from its founder by Kim McCleary. They say they are no longer a "patient organization," and now they are a "donor organization." They did this when the number of their members was dropping like a stone. I think they did it because they do not want to have to make public how few people with CFIDS actually support them. They have joined with the US Govt Center for Disease Control to make the plight of sufferers even worse, by publishing materials for doctors which tells doctors the disease is all in patients' heads and what they need is behavioral therapy and exercise, which have actually been proven not to help and exercise frequently causes worsening of the disease. This organization should be closed down.

Review from Guidestar

5

Client Served

Rating: 1

Really, I am a CLIENT NOT SERVED. The CFIDS Assn of America, Inc. exists for the purpose of paying large salaries to its CEO, Kim McCleary, and its Research Director, Suzanne Vernon. They are in the business of keeping their salaries. They have proven again and again that they do not care about the people suffering with the illness. They should just disappear and stop torturing patients.

2

Client Served

Rating: 1

There is no role category for 'client not served' so the role indicated here is misleading. The CAA were originally a patient-led organisation. That all changed a decade or more ago. Now, it's more of a gravy train for the CEO and scientific advisor. They fail to publicise important developments or get behind others in the field that are doing useful work. Their sole raison d'etre appears to be to keep themselves in business, with an ever growing constituency of sick people to milk.

It appears that members of the CAA have been reviewing themselves on these pages - their underserved client base would not write reviews such as I see published here, with five star ratings. See the patient poll here: http://forums.phoenixrising.me/showthread.php?10169-Caa-poll

Previous Stories
2

Client Served

Rating: 1

The CAA really don't do what they were set up to do.. Many CFIDS/CFS/ME (all the same illness - silly ain't it) patients are upset and disappointed with their poor track record. One patient forum has a poll up on this here http://forums.aboutmecfs.org/showthread.php?10169-Caa-poll where you can see there is an overwhelming need for the CAA to change both leadership and direction.

For the patients, the Whittemore Peterson Institute (also part of this competition for funds) have done more in a few short years for them than the CAA has ever done.

4

Client Served

Rating: 1

I would refer to myself as a "Client Unserved" by CAA. I have had viral CFS for over 20 years, and my disease is still referred to as "Chronic Fatigue Syndrome", there is still no FDA-approved treatment for the disease, and the CDC has been able to change the definition of the disease twice since I was diagnosed, and has changed it to a watered-down definition that no longer represents the original illness. As far as I am concerned, CAA has accomplished absolutely nothing. We have gone backwards. In fact, I suspect that they are receiving funding from those who hope to continue the obfuscation surrounding this disease. Their scientific director was employed by the CDC and contributed to 3rd revision of the disease definition, which cannot distinguish between CFS and depression. Their CEO seems to have had no work experience other than with CAA. There is something very wrong with this picture.

Review from Guidestar

1

Client Served

Rating: 5

In 1986 I was a healthy, energetic student working on my Ph.D. when I found myself suddenly bedbound with a mysterious illness that even my doctors didn’t understand. It was a frightening time during a period when there was incredibly little known about ME/CFS and like most sufferers I felt isolated and alone. The resources that the CFIDS Association of America (CAA) provided were a lifeline giving me a way to understand a complex and baffling array of symptoms when I might have otherwise questioned my own sanity, information and a language with which to educate doctors and friends alike, and the feeling that there in my dark bedroom I was still part of a larger community.

In the intervening years under Kim McCleary’s leadership and with the support of wonderful staff and board members, CAA has continued to be a trusted resource and tireless advocate. Suzanne Vernon has been a brilliant addition to the team and I am hopeful that focusing more resources directly on research will bring us all closer to treatment and cure. CAA has my infinite gratitude.

2

Client Served

Rating: 5

For over two decades, The CFIDS Association of America has led the way in public policy, research, and education to advance the cause of over one million Americans suffering with CFIDS (also know as ME/CFS). They have worked diligently to educate the public, the health care community, legislators and other public officials about the debilitating nature of this illness and urged increased congressional funding for research. In the late 1990’s, this nonprofit worked closely with the Social Security Administration, which resulted in a ruling making it easier for disabled CFIDS patients to get federal disability. During that same time period, they also played a key role in uncovering the diversion of CFIDS funds to other health issues at the Centers for Disease Control. A federal investigation resulted in a restoration of $12.9 million to CFIDS research. The CFIDS Association has funded millions of dollars of research. Some of their research projects have been picked up by the National Institutes of Health and fully funded. The organization’s current focus is research. They are working to find cause(s), diagnostic biomarkers, treatments, and hopefully a cure. Promising studies are selected based on strict scientific criteria. Their research efforts have an impact for the 17 million CFIDS patients around the world. This organization has an extremely dedicated staff and is respected by researchers and clinicians internationally. The CFIDS Association has been a lifeline for thousands of us who are affected by this illness. I have been a member for the past 17 years and am extremely grateful for all they have done to help the CFIDS community!