Oops! You must enter a search term greater than 3 characters.

Invite reviews

Invite friends and colleagues to share their experiences with this nonprofit
80 Reviews
1234.08755
Write A Review
November 30, 2014

more

Review from Guidestar
November 30, 2014

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.
November 3, 2014

more

Review from Guidestar
November 3, 2014

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
October 31, 2014

more

Review from Guidestar
October 31, 2014

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.
October 27, 2014

more

Review from Guidestar
October 27, 2014

I could write a soliloquy for this review...

Simply put.. They give me hope.


-DJ

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?

2014

October 24, 2014

more

Review from Guidestar
October 24, 2014

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.
October 21, 2014

more

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

more

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

more

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

more


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

more

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!

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

Write A Review

Filter by reviewer role:

Support This Nonprofit

Help this nonprofit get more reviews

5 tips for getting reviews

5 tips for getting reviews...

  1. Sending an email to clients, volunteers, donors, board members, and other partners with a link to your profile page.
  2. Putting a link on your Web site
  3. Including a link in your email newsletter
  4. Putting a link in the signature of your email
    Putting a link on your facebook page and status updates
  5. Tweeting out a link to your twitter followers