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October 16, 2014
1 person found this review helpful

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Review from Guidestar
October 16, 2014
1 person found this review helpful

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.
October 16, 2014
1 person found this review helpful

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Review from Guidestar
October 16, 2014
1 person found this review helpful

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.

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When was your last experience with this nonprofit?

2014

October 16, 2014
1 person found this review helpful

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Review from Guidestar
October 16, 2014
1 person found this review helpful

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.
October 16, 2014
2 people found this review helpful

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Review from Guidestar
October 16, 2014
2 people found this review helpful

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.
October 16, 2014
1 person found this review helpful

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Review from Guidestar
October 16, 2014
1 person found this review helpful

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!
October 16, 2014
1 person found this review helpful

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October 16, 2014
1 person found this review helpful

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.

Ways to make it better...

If I had to make changes to this organization, I would...

Give them enough resources to do even more!

More feedback...

Was your donation impactful?

Definitely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Definitely

When was your last experience with this nonprofit?

2014

October 16, 2014
1 person found this review helpful

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October 16, 2014
1 person found this review helpful

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.
October 16, 2014
4 people found this review helpful

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Review from Guidestar
October 16, 2014
4 people found this review helpful

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.
October 16, 2014
1 person found this review helpful

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October 16, 2014
1 person found this review helpful

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.

Ways to make it better...

If I had to make changes to this organization, I would...

Increase funding ten-fold.

More feedback...

When was your last experience with this nonprofit?

2014

October 11, 2014
1 person found this review helpful

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Review from Guidestar
October 11, 2014
1 person found this review helpful

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.
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