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67 Reviews
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October 21, 2014

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Review from Guidestar
October 21, 2014

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
October 19, 2014

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Review from Guidestar
October 19, 2014

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.

Ways to make it better...

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

give it a bigger budget.

More feedback...

How would you describe the help you got from this organization?

A lot

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2014

August 9, 2014
7 people found this review helpful

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Review from Guidestar
1 previous review
December 14, 2012

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 execut... more

August 9, 2014
7 people found this review helpful

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.

Ways to make it better...

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

Dissolve it and replace it with an organization which acts for the benefits of real patients rather than selling out their interests for the organization's benefit. You ask below how much impact I think this organization has. I think it has far too much impact--negative impact. It would be best if they dissolved or at least stopped telling government agencies, media and medical professionals that they speak on behalf of M.E. patients. They do not. They speak only on their own behalf.

More feedback...

Will you volunteer or donate to this organization?

No

How much of an impact do you think this organization has?

Some

When was your last experience with this nonprofit?

2014

December 14, 2012
4 people found this review helpful

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.

More feedback...

How would you describe the help you got from this organization?

None

How likely are you to recommend this organization to a friend?

No

How do you feel you were treated by this organization?

Badly

When was your last experience with this nonprofit?

2012

November 12, 2012
2 people found this review helpful

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1 previous review
June 10, 2011

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... more

November 12, 2012
2 people found this review helpful

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.

More feedback...

How would you describe the help you got from this organization?

A lot

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Quite well

When was your last experience with this nonprofit?

2012

June 10, 2011

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.

The Great!

I've personally experienced the results of this organization in...

I receive daily updates of all CFS research, have been alerted to actions in Washington DC, and have learned from educational Webinars.

Ways to make it better...

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

The only change that I would have made would be to concentrate efforts on just one area. And CFIDS Association has recently done exactly this by changing its focus to just research. I'm hoping our current knowledge will now take a huge leap forward this year and the next.

November 11, 2012
1 person found this review helpful

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November 11, 2012
1 person found this review helpful

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!

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How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

July 13, 2012
2 people found this review helpful

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July 13, 2012
2 people found this review helpful

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.

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

June 25, 2012
3 people found this review helpful

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June 25, 2012
3 people found this review helpful

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.

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

June 23, 2012
1 person found this review helpful

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June 23, 2012
1 person found this review helpful

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!

More feedback...

How would you describe the help you got from this organization?

A lot

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

June 18, 2012
2 people found this review helpful

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June 18, 2012
2 people found this review helpful

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.

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

October 5, 2011
4 people found this review helpful

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Review from Guidestar
October 5, 2011
4 people found this review helpful

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.

The Great!

I've personally experienced the results of this organization in...

When at the NIH State of the Knowledge Workshop last April, 2011. I happened to sit next to CEO Kim McCleary that day. In making light conversation during a break,she was dismissive and arrogant. I knew, she wasn't interested in any feedback I could offer of the presentations we had just heard. I felt I was not the person she was representing as CEO of a Patient Advocacy Group. When she gave her presentation, it was clear who she is working for by the comments she made pandering to those who send her $$$.

Ways to make it better...

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

1)Get the name right, its ME, as in Myalgic Encephalomyelitis! For an advocacy group you are 30 years behind. 2)Reorganize with more funding directed to Patient Needs than CEO Salaries and marketing to discredit their perceived competitors, those researchers "who are trying" to discover the real medical findings to get us back to work. 3)if you are going to stroke the CDC , at least show that you have made a difference in actual progress toward more than having an insider seat & a voice at a meeting.

More feedback...

How would you describe the help you got from this organization?

A little

How likely are you to recommend this organization to a friend?

No

How do you feel you were treated by this organization?

Badly

How did you find this group?

Disgraceful, demeaning and oppositional.

What, if any, change in your life has this group encouraged?

Increased confusion, worse health status and discouragement knowing that they are behind the attacks on the organizations who need funding to make a difference. They are simply selfish.

When was your last experience with this nonprofit?

2011

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