Solve Me Cfs Initiative Inc

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

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.

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.

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.

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.

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.

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

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.

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.

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.

I could write a soliloquy for this review...

Simply put.. They give me hope.


-DJ

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.

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

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

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.

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.

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

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.

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.

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.

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

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.

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.

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.

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

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.

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.

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.

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.

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.

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

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.

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.

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.

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.

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.

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.

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!

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.

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.

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.

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.

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.

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.

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.

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.

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!

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.

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.

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.

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.

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.

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!

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.

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!

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.

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.

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.

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.

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.

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

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.

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.

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!

cfids association is for me the best because they are doing great research and give objective information! They are a source off hope for me because I live in Belgium and here they force cfs patients to do exercise and follow cognitive behavior therapy to heal... I have CFS for 17 years now, am most off the time bedridden and can sit now a little bit in a wheelchear. My dearest father, the only person that was there for me all the years in my illness and who took care off me (bringing my meals at my bed, ...) died off cancer last year. Now there is nobody anymore...

I am a person who's been suffering with the disease originally known as Myalgic Encephalomyelitis then Chronic Fatigue and Immune Dysfunction Syndrome and now ME/CFS for 26 year. I am embarrassed to say that I have been donating to this association for years through payroll deduction at work.

CFIDS stands for Chronic Fatigue and Immune Dysfunction Syndrome. It is a complex nuero-immune disease that is poorly understood and trivialized by the CDC by their horrible name: Chronic Fatigue Syndrome . This name has condemned the 1 to 4 million Americans suffering with it to a life of mistreatment and disrespect by friends, family, employers, co-workers AND the medical community.

Among all the dis-services done by the CAA, this organization was responsible for this name to remain as when it was to be changed by a Congressional Order back to Myalgic Encephalomyelitis, they stated that changing the name would make it more difficult for sufferers.

The CFIDS Association, Inc, also known as the CFIDS Association of America (CAA) is the puppet of the CDC and DOES NOT represent the needs of people suffering from Myalgic Encephalomyelitis. They exist to support the high salaries of their officers.

I am dismayed by the nitpicking I see in the ratings here. This is the major patient support organization in this country and has been for a very long time. And efforts to change leadership, like efforts to change the name (to what? - this has been hashed and rehashed with the conclusion that we need to wait) are in my mind a step backwards. We don't have that kind of time, nor should we weaken the association as it struggles to get the national support we need to take on this terrible illness. I've had cfs since 1977, before there was a name. This association has been a major factor in the fight. Other cfs organizations over the decades have come and gone. And still others have joined in the fight. They have all worked and/or continue to work towards the goal of defeating cfs in their own ways. If you don't like the association, join the others. Build. But don't tear down what has taken decades to create. They shifted from an emphasis only on research to advocacy because there was no way we could produce the resources on our own, especially since most pwcs can't earn. We need government resources. Only on that scale can we tackle the research, and the education of the medical profession. And still the association works at research on its own too. I have mostly appreciated the evolution of the association as things have changed over time. And will continue to support it even if I may disagree with some aspects. I won't cut off my nose to spite my face. For those writing with such emotion, I understand the pain of lives decimated. But look within and direct our pain more productively. There are no answers.............yet.

The CFIDS Association of America has been making a difference in the lives of people with CFS for well over two decades. Through their efforts in educating patients, caregivers and health care professionals, their commitment to extensive national research initiatives, and the more recent establishment of a patient biobank, the Association has made a meaningful impact on CFS and has laid the foundation for future progress. I appreciate the commitment to good solid science in all aspects of carrying out their mission, and I'm optimistic that the Association will continue to play a primary role in solving CFS. The bulk of my charitable giving goes to this outstanding organization, and I'm confident that the CFIDS Association of America is making the most of my investment.

Doing good research but they have a terrible history on advocacy, seem very confused about who it is that they are attempting to advocate for (all people diagnosed with "CFS" using any diagnostic criteria or a focus on those who are sickest ME patients and who, ironically would never be allowed into a CDC study - or the CAA's own Biobank - as they are "too sick").

This issue of focus is critical and it has been neglected for over a decade by CEO, Kim McCleary. She is wildly overpaid for someone who is repeatedly having to apologize to the patient community for her confusing public statements (the CAA can write a decent letter of explanation after having pondered a topic for a few weeks but their statements to the media about "breaking research"(eg. the Pace trial) have been both disastrous (creating a situation where CFS is actually less well understood by patients, friends, family, clinicians and researchers) and illuminating with regards to the failure of leadership and a clear mission at the CAA ).

Supposedly the CAA is now no longer a patient advocacy group but they will still need to deal with the question of who they are trying to represent. This is crucial in order to focus their research efforts on a well defined patient cohort. I'm very skeptical the present leadership of the CAA has the skills to accomplish this or the insight to admit this critical short coming. I guess we'll see.

I am a client well served by the CFIDS Association. I am a 27+ year, disabled sufferer of the illness. I really appreciate their very kind, professional staff who have always been there for me. It is frustrating to have an illness that is so new and has no PROVEN treatments yet but I believe the Association is doing their very best to address this difficult situation. Patience is hard with such great suffering but I believe many of the advances in terms research and advocacy have come as a result of this invaluable organization and their valiant fight for us! I

My affiliation with The CFIDS Association of America began shortly after my diagnosis with CFS in 2005, when I quickly realized that they were, and continue to, be the largest and most active charitable organization dedicated to chronic fatigue syndrome (CFS). Since 1987, the Association has invested more than $29.5 million in initiatives to make CFS widely understood, diagnosable, curable and preventable. Over the past 6 years I've have made The CFIDS Association of America my charity of choice, as well as my source for accurate, up-to-date reporting of scientific data on CFS.

I strongly believe that their focus on research will most efficiently help us all reach our collective end goal; to understand the cause of this illness, and develop safe, affordable treatments and preventatives.

The CFIDS Association of America (CAA) does not fight for the patients. The organization needs to make clear and consistent statements about:
(1) the harm that exercise can do to severe patients
(2) the need for an accurate case definition, such as the Canadian Consensus Criteria
(3) the harm the CAA and government policies are doing to children
(4) the quickly approaching government plan to reclassify CFS as a mental disorder
(5) the unqualified, inappropriately educated people the NIH and CDC use to award research grants, and
(6) the miniscule amount of money set aside by the government to study this sometimes life-threatening disease.

I say that I am a "client served" because the CAA purports to speak for me, a person with the serious neuroimmune disease now referred to as ME/CFS. They do not speak for me. They have refused to involve themselves in some of the most significant issues regarding this illness that would affect how it is viewed and treated, such as ICD coding used by insurance companies and proposed changes to the DSM. The CEO in an interview with CNN failed to point out known negative medical consequences for the most seriously ill patients of a therapy being discussed and even seemed to unquestioningly endorse it. The CAA does not act or speak in the interest of patients.

The CAA has been underperforming and poorly representing patients as an advocacy and educational organization for many years. Much of the donated money goes towards paying an overinflated salary for the CEO at the expence of advocay and research initiatives. The CEO also is not well qualified eduactionally ( bachelors degree) to be leading this non-profit.
In summary it is a poorly functioning org which has no measurements in place for sucess and an overpaid CEO.

The CFIDS Association of America has been working against the interests of those it pretends to represent. Many patients now think we would be better off without them "advocating" for an illness that they obviously do not understand.

The CAA has been a colossal failure to those of us who suffer from nuero immune illnesses. They fail to put the proper resources into the most promising areas needing to be researched. Their CEO, Kim Mcluess consistantly manages to set new lows except in her pay. This orginization needs to be disbanded.

This charity purports to represent patients suffering from CFS/ME yet demonstrates time and time again that it is not up to the task. Their "advocacy" has been so poor one is tempted to come to the conclusion that they are actively working against patients' interests. Given the vast wage demands by those in charge this is, in my opinion, disgraceful.

ME/CFIDS is a devastating neuro-immune disease. ME is a disease that desperately needs funding more than almost any other. Unfortunately CAA, one of the two largest ME orgs in the US, has failed patients and thus is not the org to which one should donate.



PLEASE DO DONATE TO AN EFFECTIVE ME ORG! I strongly suggest the Whittemore Peterson Institute for Neuro-Immune Disease
wpinstitute.org
or PANDORA
pandoranet.info
both of which enjoy very strong support from patients.



CDC, NIH and the UK govt have waged a quarter century war on ME science and patients and CAA has done much too little to bring this to the public's, lawmakers', or even pwMEs' attention, thus indirectly contributing to our persecution.



CEO Kim McCleary receives exorbitant compensation.



There is heavy criticism of CAA by patients. For example, see comments to the following blog post on patient forum Phoenix Rising:
http://forums.aboutmecfs.org/content.php?348-CFIDS-Association-Interview-with-Jennifer-Spotila-cfs-me-cfs-phoenix-rising