2019 Top-Rated Nonprofit

American Myalgic Encephalomyelitis & Chronic Fatigue Syndrome Society

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Community Stories

19 Stories from Volunteers, Donors & Supporters

RebeccaMuia Client Served

Rating: 5

06/13/2024

AMMES is truly an amazing, one-of-a-kind organization, serving the ME/CFS community who have few places to turn for financial support/services, reliable research-based education & advocacy.

In the face of what sometimes feels like insurmountable challenges, AMMES is a beacon of hope and assurance.

AMMES meets people where they are and offers tangible and meaningful help/solutions with compassion, understanding and empathy.

As a former fundraiser, I’ve never seen such an effective meaningful way to immediately address urgent needs with dignity, respect and understanding.

Erica Verillo and AMMES are an incredible resource for needs that help reduce stress and provide affirmation that a community understands and cares about the day-to-day realities of people with ME/CFS.

Thank you again for being such an understanding, caring & pro-active advocate & resource, making patients with ME/CFS lives better in an easy and accessible way.

ME-CFIDS.EcoWarrior Client Served

Rating: 5

06/09/2024

As a passionate formerly 75-hour/week non-profit devotee and exec. manager in environmental/wilderness small government, myself, I learned a good bit about how we can best serve and uplift our stakeholders. Never in my wildest/worst imagination did I envision that I would become the needy or dependent one a non-profit might serve. In fact, to be honest, I would likely have judged someone with an invisible disability (like me now) as a Negative Nelly or malingerer or possibly thought I was faking--as this illness is so uneven and systemic, and devastatingly hard to understand. Never would I have imagined being alone: that family would pass away, and, after a decade+ of being ill and without the former financial capability or in ongoing social and economic isolation, I would be the one to reach out in desperation to a non-profit I'd just read about. Never would I have imagined that a fully-insured person holding policies of every type would be cheated by her insurer, her disability attorneys selling her out illegally, private judges and sitting judges complicit, and living in fear despite being the ethical party. At a time I felt most afraid and alone and stressed, AAMES saved me from becoming homeless. Equally important was the uplifting way in which Erica interacted with me, with compassion, affording me dignity I had nearly forgotten, and inspiring me with chats about our shared passions. Her communiques reached into my dark isolated room to share personal passions, from wilderness and food gardens and chemical free eco-housing. AAMES funds not only alleviated the killer daily stress of facing homelessness (which is 100x more stressful than doing my productive work in the world, which I've yet to figure out how now to do at reduced capacity). AAMES direct funding and Ericas communiques were exactly what this ME/CFIDS survivor needed. The AAMES process found a way to simplify red tape and respect security concerns, while authenticating my genuine diagnosis and need. AAMES gave me the confidence I can survive another month, living another day toward forming my own non-profit, and all I have yet to do in real life out there! THANK YOU from my heart blooming with gratitude and joy that there are people like Erica and AAMES!

JN112526 Client Served

Rating: 5

06/09/2024

My name is Mike. I was a successful IT executive for many years. I really enjoyed my job and the people I worked with. Things were going well for me and my family, and I looked forward to at least another decade of work before retirement. Then, I got sick and could no longer work. After almost a year and seeing a whole host of doctors, I was diagnosed with ME/CFS.

The disease is devastating. You want to work, you need to work, and you can’t work. You’ve supported your family all these years, through tragedy and triumph, and now you can’t. You were the provider, now you’re the patient. Other people have to step up and work so you can pay your bills. Others have to cook, clean, and do a hundred other things so the family can continue. Through the years, we were blessed to be able to help people. Not anymore. That change, from ‘having’ to ‘needing’, and the knowledge that the change is permanent with no chance of recovery, is the worst part of the disease. You feel awful all the time, you can’t work, the bills pile up, and you realize you can’t do it on your own. You need help.

Someone told us about AMMES. We needed help and reached out. They were wonderful. They helped us pay our bills during a really hard time. I honestly don’t know what we would have done without the kind people at AMMES. We needed help, desperately, and they stepped in. The young lady we worked with, Erica, was especially nice. She was courteous, warm, and efficient. AMMES was there for us when we needed them. I would recommend them to anyone suffering from this terrible disease.

Nancy K W. Donor

Rating: 5

03/20/2020

Too many seniors have exhausted all their resources while living with ME for decades, leaving them without even basic essentials. As you can see from the graphic based on a poll in our #MEAction Seniors Connect group (of 1200 PwME), after years of hanging on by our fingernails, we have many pressing needs basic to survival without a cure in sight.

I feel lucky to be in a better situation now than I was for the first 2 decades of having ME; I married a man whom I met at our local support group, so our financial situation is better AND I have an understanding partner.

Thanks to AMMES, the only group I could find providing needed support to people with ME in need of actual help, I've felt good about being able to pay my good fortune forward!

1

canary Client Served

Rating: 5

12/25/2019

I have survived 2019 because of AMMES. It's as simple as that...

When I was .first diagnosed with a disabling case of ME/CFS, I never imagined that my recovery would be so hard and so long that I would run out of money. When I searched for solutions I was surprised that all the ME/CFS charities I found were focused on finding a cure in the future. Nobody was helping the patients who are struggling right now. I resolved to do something about this once I was strong enough.

And then, just as it seemed like it might soon be lights out for me, somebody sent me a link to AMMES. I applied and was able to get the help I needed to stay housed.

My journey to recovery continues. And when I am strong enough I hope I can meet my goal of helping other patients who are struggling now by partnering with AMMES. Thank you, thank you, thank you.

jawss72 General Member of the Public

Rating: 5

03/13/2019

Kudos and gratitude to Erica Verillo for creating an organization that not only provides an amazing amount of HELPFUL information aboutME/CFS, but also provides direct help to those who suffer from this debilitating disease.
Jane

1

Fred General Member of the Public

Rating: 5

03/06/2019

I am an ME patient and receive the AMMES newsletter.

I am so glad there is finally an organization which is dedicated to helping ME and CFS patients financially for emergency situations, such as homelessness. This has been needed for decades.

AMMES also has a comprehensive website, covering all aspects of the disease, how to apply for disability, find a doctor, etc., as well as the aforementioned newsletter to keep you up to date on research, advocacy and more.

I haven't made a donation yet, due to limited income, but would definitely consider doing so in the future.

RivkaRivka Donor

Rating: 5

03/06/2019

AMMES is a one-of-a-kind and fantastic organization.

There is no other organization dedicated to helping people with ME and CFS who are about to lose their home or can’t afford to buy food. Because of this, I have donated twice to AMMES and will again, even though I am not rich.

If there is an angel out there with money who wants a good organization to donate to, an organization that will then turn around and give that very same money back to patients who desperately need it, AMMES is an excellent choice.

Also, their website is an exceptional resource.

We have needed this organization for about 30 years, and we finally have it. It’s time we support it, so that it can, in turn, support our often beleaguered and neglected community that has so many needs.

(I do not have any official affiliation with this organization except that I am a big fan of both it and the woman who runs it, Erica Verrillo.)

3

Amanda M.12 Client Served

Rating: 5

03/05/2019

The American ME/CFS Society (ammes.org), saved my life. They are the first organization I found, who did more than just give a few links with informational articles, support groups, and how to find help; they actually help people suffering the most, NOW!
They paid, in full, my rent so I did not become homeless, again.
This, along with providing all the the current research, accurately organized, and explained in such a way, I could finally understand this allusive disease, which had segregated me from the rest of the world, and ruled my life, for over 12 years.
I finally found answers and for the first time in years, I did not feel alone in the battle for my life.
I cannot say how grateful I am for this organization, but they are the Real Deal. They are what I always thought charitable organizations should be like; truly saving and helping the lives, of the sufferers they claim to help, on the frontlines of the battles they fight. -Amanda McClure

2

annpoof Client Served

Rating: 5

03/04/2019

Working with this charity was extremely quick and pain free. The people I spoke with we're incredibly kind and understanding. They truly made a difference in my life.

2

34Years2Life Client Served

Rating: 5

03/04/2019

I’ve been sick with ME/CFS since 1985. In the past 34 years I’ve gone from being 50% functional to not being able to work or manage at home. Throughout this time I’ve been mostly alone since, as a transgender person, my family has not been in my life; the isolation brought by this illness is compounded by familial rejection. Without family and friends, I didn’t know where to turn until a local ME group put me in touch with AMMES. I am grateful that they did.

AMMES offered me understanding and peer support, as well as tangible economic assistance that helped to avoid financial disaster and likely homelessness.

We need more of the crisis intervention that AMMES provides since so many people with ME have no resources or personal support. Many rely on government programs that force us into poverty. AMMES addresses poverty and its consequences through informed, direct services.

Above all, AMMES has given me a lifeline when this world has otherwise felt unlivable. I can't rate this organization highly enough!

3

sharinghope Client Served

Rating: 5

03/03/2019

AMMES is a an outstanding foundation that is making a profound impact supporting the lives of those disabled by the devastating illness MECFS.
AMMES has directly funded the medical needs and CRITICAL needs of those suffering most at the hands of MECFS, for which I could not be more grateful.
Thanks to Ms. Verrillo and the board, I was able to stay in my home when I faced losing shelter.
AMMES has become a caretaker for those facing the pains of this illness alone.
The foundations generosity of spirit to give funding to save so many of us is truly a blessing.
With no where else to turn for help, AMMES is filling a very much needed role in the community and patients lives.

I was a financial banking agent before MECFS took my life away.
After 42 months of various MECFS hospitalizations, inability to work and not having a familial support system in place, I faced homelessness.

Despite being on bedrest over 95% of my life ,suffering with pain and ME related illnesses, disability income was wrongly denied to me like many others.

The AMMES board took swift action to evaluate my case and promptly provided the much needed assistance for which I will be forever thankful.
Thank you AMMES!!

3

Evelyn Zaida Y. Client Served

Rating: 5

02/26/2019


I am SO thankful to Erica Verrillo and the American Myalgic
Encephalomyelitis and Chronic Fatigue Syndrome Society (AMMES). I
have had severe and chronic CFIDS/ME/CFS for approximately 24 years. Previously I had some financial help from my family but due to a
family crisis I was left needing to quickly move to an apartment. For
the first time in my life I requested financial help from people other
than my immediate family. A woman in a FaceBook group referred me to
AMMES and gave me the website. The application for the emergency
grant money is simple, which is so great since part of our illness is
mental fog and such exhaustion that menial tasks can be quite
complicated. I completed and mailed the application and I quickly
received the grant money for my rent and electric bill that month! I
am SO grateful for AMMES! What a huge blessing this has been
especially right before the holiday season. AMMES is a much needed
resource for the CFIDS/ME/CFS community and as more exposure to our illness is happening. I recommend that people donate to this wonderful
organization to help more chronically ill people who have emergency
financial needs. Thank you AMMES!!!”
Thanks for everything Erica and AMMES

3

rachel100639 Client Served

Rating: 5

02/25/2019

I feel extremely fortunate that I found The American ME and CFS Society (AMMES) when I did. Due to an exacerbation of my CFS this past year, I’ve been unable to work. I have faced eviction more than a few times and without the rental assistance AMMES provided, I would have likely wound up living in my car. As sick as I have been, I wouldn’t have survived such an ordeal. AMMES has also helped with other crucial bills such as utilities, car insurance, phone, and much more.
 
This much-needed, targeted financial aid is extended to those of us with ME/CFS who are living in the United States (U.S.). In fact, AMMES is the only nonprofit organization in the entire country that offers financial help specifically for people with ME/CFS!
 
My guess is that like me, most people with ME/CFS find the application process of most nonprofits to be frustratingly daunting, exhausting, and humiliating. Often, it can be a day’s, or even weeks-long, energy-sapping nightmare. And because they are unable to understand the symptoms of ME/CFS, especially the devastating impact it has on our ability to remain financially independent, most nonprofits require that all applicants are actively looking for, or have already secured a job, before any aid is provided.
 
In contrast, AMMES made the application process fast and easy. The staff at AMMES clearly understood - and more importantly - believed me when I said that CFS was the direct cause of my physical, emotional, and financial turmoil. They’re not only incredibly knowledgeable about the disease from a medical and scientific perspective, they know the detrimental impact it has on every area of one’s life.
 
Additionally, everyone at AMMES has tremendous empathy for ME/CFS sufferers. Even over the phone, their empathy is unmistakable and genuine. Given the lack of understanding from both the public and the medical community for people with ME/CFS, I found their emotional support to be a welcome relief.
 
Furthermore, it’s obvious that everyone at AMMES has a great passion for helping others with this condition. It’s not only financial aid AMMES provides, but also education, resources, and a variety of other support services. AMMES.org has a ton of excellent information about ME/CFS, and I find the monthly email newsletter to be interesting and personally useful.
 
Back to my rent and eviction scenario.
 
Because I was going to receive an eviction notice the next day for nonpayment of rent, AMMES sent me a check overnight for not just one, but two months’ amount in rent. I didn’t need to jump through a bunch of time and energy-consuming hoops to receive help.
 
I am forever grateful that AMMES has been there for me during some very frightening situations! Thinking about what could have happened to me if this help had not been available still causes a certain amount of fear. However, for the most part, the gratitude I feel far outweigh the feelings of fear I periodically experience.
 
Thank you, AMMES!

Sincerely,

Rachel Kelley

4 Sully14

Sully14 Client Served

Rating: 5

02/24/2019

I must start with the fact that there is a zero percent chance that I would be alive today if not for AMMES stepping in with little notice to save my life. This organization truly serves those that it states they assist.

I volunteered for a previous non-profit in another industry that I ended up finding out did not operate honestly. AMMES has been a forthright class act throughout.

I also started working with a different M.E. organization, prior to AMMES, whom I had a horrendous experience with. They lied to me and were hypocritical in their actions.

It’s tough to find a non-profit that truly operates on a shoestring budget that’s sole purpose is to serve those that it declares they represent and assist like AMMES. They claim to have a fully volunteer staff, and I honestly believe it from my personal experience.

If you’re looking for a non-profit of the highest integrity to donate to, then look no further than AMMES. They will put every ounce of your money to work to save the lives of those that have had it ripped apart from this highly debilitating disease (ME/CFS).

Sadly there are too many people that need help due to this disease and this is the one and only organization that truly helps those of us who are in a desperate need and thus have fallen through the donut holes and cracks of our nation’s support systems.

In 2015 a study compared the most common of the most physically debilitating diseases, it found ME/CFS to be the most debilitating of all of them when measured by quality of life.

If you open up and send a large donation to AMMES, I promise you that it will help many, many lives that are hanging on by a desperate thread.

Thank you for reading about my personal experience as I will sing to the rooftops about AMMES forever.
-Sully

3

Ezeid137 Client Served

Rating: 5

02/24/2019

Ammes has helped me tremendously. So many with chronic illnesses face poverty and need nonprofit organizations such as ammes in order to prevent homelessness and keep quality of life.

3

Lynnette G.1 Client Served

Rating: 5

02/23/2019

My name is Lynnette Greene i have been suffering from myalgic encephalomyelitis since 2012 i am bed bound and very weak and no doctors o came in contact wirh know nothing about this miserable rare life debilitating illness because there not educated on this illness is rare and not enough reach to know a treatment or cure i have 4 kids and due to my abuser breaking in while I'm sleeping even with protection order against him i wake up he's in house trashed all 4 levels and imstuck for days well when i met Erica president of (AMMES) that was a true blessing from God in heavens above she paid my caregiver $1000 that i was at risk off losing due to no money to pay for my care for me and my kids and she paid off my security deposit over $1000 and has been paying all utilities and even helped us get clothing by sending money when abuser trashed my house if i didn't get blessed with this beautiful kind hearted lady (Erica president of AMMES) I would of lost my life my mind and my house and kids i only get 80p a month for me and 4 kids and very weak at times i can't move lims or even speak to avacate for my self and Erica she even goes as far as speaking for me she coaches me through terrifying dangerous situations when i call her on phone pannic and she sends me vitamins monthly and she still pays my trash water and BGE and she also wrote me a check to fix my back door that was busted in leaving us unsafe and nobody not even my landlord she even reached out to was willing to fix she paid over $200 for my 14 year old to have food and gifts and cake etc with out her helping i would of not been able to even buy a balloon she is amazing and helped me be able to breath in and out and relax by saving me everytime I'm in need even if it's just listening to me and she definitely give feed back and it's always amazing and right on time she is definitely one of my favorite best blessings yet and one of my favorite angels semt from heavens above and she is still making sure me and my family stay warm and have running water and everything we need to live and be comfortablel

2

MEsince1989 Client Served

Rating: 5

02/23/2019

AAMES.org is the only nonprofit that has ever existed for Myalgic Encephalomyelitis to aide patients who are under very difficult financial
hardship due to the complex disease that was named Chronic Fatigue Syndrome
so many years ago by the CDC. Unfortunately this name created a false idea
that this is a trivial disease,when in fact it is a devastating disease millions of people worldwide suffer from, and even die. AAMES.org needs support to help
so many people going without proper medical care, and disability benefits, and even housing. Without family there to help, many people like myself are
going without a support system to keep us safe from living on the street.
The very nature of how severe the disease can be needs to be met,because
life on the street, or living in a shelter or a car, just worsens the symptoms
to unbearable levels. For those who are ill it can be a tortuous existence being
unable to relieve the complex and often cruel neuroimmune symptoms. We need help so badly and no organization has been there before to help meet
the needs of the humanitarian crisis that Myalgic Encephalomyelitis
actually is, not just in the U.S.,but worldwide. Please help AAMES.org to increase funding for people with M.E. that have been hurting and neglected by
governments, the medical community, society, and even their own families
for so many decades of isolated and invisible suffering in silence. Please
don't allow Myalgic Encephalomyelitis to remain an orphaned disease any
longer and support AAMES.org in their efforts to provide much needed
and overdue financial support for those in need with such a limiting and
devastating life altering disease. Help AAMES.org now they are the only
organization that has helped me in the 30 years I have been ill.

3

Jeannie Hardesty M. Client Served

Rating: 5

02/23/2019

This Non-profit Society has given me something no one else could: the co-pay for my new power wheelchair. I cannot express how grateful I am for this gift, or grant, you call it. It is a GIFT to me, AND NOW SUPPLEMENTS TO BOOT! The cost of the supplements was getting so high, that I was having to skip months without them. Thank you so much Erica, and AMMES! You truly have been an answer to prayer!

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