Neglect is embedded in our history. It’s hard to have a conversation without someone mentioning the neglected funding, the doctors who don’t get it, the lack of treatments, the unheeding friends or family; i.e. the things we as a community don’t have – which so many others do
The financial crisis fund is about providing basic needs for those with ME/CFS.
That neglect meant that when someone with ME/CFS fell on really hard times, they were mostly on their own. As you’ll see, that didn’t sit right with Erica Verrillo. She wasn’t sure what to do – but felt she had to do something – and so she did. She created the American ME and CFS Society and its Financial Crisis fund for M.E..
That fund – supported entirely by donors – is about giving people with ME/CFS in need small or big things that can make such a difference: some new clothing, a medical bill paid, the means to keep the heat or phone on, a wheelchair to get around, a security deposit to get into an apartment. As much as the physical help AMMES provides, the recognition that someone cares is probably just as important. The sense of aloneness and isolation that so afflicts people with this disease is lifted.
As Erica and AMMES do their spring fundraiser, I asked Erica about her motivation for starting AMMES and its Financial Crisis Fund. I loved her refreshing honesty. What do the vast majority of us do when facing something that seems too overwhelming to take on? We retreat! And she did! And then, at some point she moved forward and because of that, people with ME/CFS in need are being helped.
What was your motivation for starting AMMES?
Erica Verrillo
The very first email I received when I launched the website for my book seven years ago was from a woman in dire straits. She was severely ill with ME/CFS and had lost her job. And she was about to lose her husband. She ended her email with a plea, “Help me, please help me, dear god, someone please help me.” It was a cry of utter desperation.
I had three choices: 1) Answer the letter with sympathy and understanding; 2) Try to find some help for this woman; 3) Ignore the email.
I chose option number three.
When faced with a crisis, especially someone else’s, for which we feel wholly inadequate, the most common response is to do exactly what I did – namely, nothing. What can we say? What can we do? How many of us are trained in crisis management? I certainly wasn’t.
That email has stuck with me throughout the years. I have repeatedly come back to the thought that perhaps I could have done something, anything, to help her. It turns out there was something I could have done. I couldn’t solve this woman’s problems, but I could have listened and responded. The next incoherent desperate email that came my way (there have been many), I had learned my lesson. I responded with sympathy and understanding. The woman replied, no longer incoherent and rambling, and said, “Thank you for listening.”
It was so simple! All I had to do was listen! But there was another step. People started asking me concrete questions: “Where can I find a doctor?”, “What treatments should I take?”, “Where can I get reliable information?”. So, I began referring people to various helpful sites, and expanding my own site. After a few years, with these requests continually streaming in, I realized that it was time to set up an organization for patients – one that would address their on-the-ground needs.
The American ME and CFS Society (AMMES) was founded as a way to answer some of the questions patients had been asking me through the years. It helped that I had already written a couple of books on the subject, so I was able to adapt a lot of information from what I had already written. My six years of experience as a ProHealth editor also served me well. I uploaded over 3,000 abstracts from the PubMed database, set up interactive databases for doctors and treatments, and wrote 60,000 words to cover all the basics. I designed a logo and a website, and hired (and fired) quite a few graphic artists, web developers, and designers. I worked with lawyers to get nonprofit status. It took two years. When the site was launched in 2016, I thought I was finished!
I wasn’t.
How did you come up with the idea of a financial crisis fund?
I got an email from an advocate in 2018 telling me about a fundraising competition, and asking if I would enter AMMES. Of course! But there was no category for anything we had on the site. I had to think of something practical. So, I posted a clip of an interview I had done with Llewellyn King in which I talked about homelessness among severely ill patients. The next logical step was to design an aid program for destitute patients. Before I fell ill, I’d run a nonprofit for Central American refugees, so I already had a good idea how to form a crisis fund. And that is how the AMMES financial crisis fund was born – like most births, quite by accident, but to a uniquely qualified mother.
A year has gone by since the inauguration of the AMMES financial crisis fund. In the course of a year, we have raised, and spent, $46,490. Most of that money has been dedicated to preventing evictions. In one case, a person who contacted us had already been evicted and was facing a night in his car, which would have killed him. (That is not an exaggeration. He was evicted on December 31st, in Illinois.) AMMES has also paid medical bills, including the co-pay for a wheelchair, food bills, utility bills (usually overdue, and in danger of being cut off). We helped purchase a bed for a patient who was sleeping on a couch, a microwave, and shoes for a patient who only had flip-flops to wear.
In short, we are attending to basic needs, things nobody in this country should go without. Nobody should be homeless, or hungry, or not have adequate clothing. These are the basics of survival.
So why is it so difficult to raise money for this cause?
To put it bluntly, helping sick people stay in their homes is not “sexy.” Nonprofit grants that get funded are for things like playgrounds for inner city kids, music programs, animal shelters, urban gardens. All of these provide a sense of accomplishment for those who donate. There is no feeling that a problem has been solved when people donate to help with an ongoing crisis. In fact, when I asked why something similar to what I was doing had never been done for the ME/CFS community, the answer was: “It would be a bottomless pit.”
The person who made that statement wasn’t wrong. Dealing with poverty is a bottomless pit. As long as there are poor people there will always be a need. But looking at the problem realistically, everything is a bottomless pit. Research into ME/CFS is a bottomless pit. Over the decades, research into ME/CFS has absorbed millions upon millions of dollars. Yet, for all the assurances that there will soon be a cure, that day has not come. More millions are needed. But nobody feels that research is a bottomless pit that does not deserve funding.
The fact that a need is ongoing does not mean it is not worth supporting. If we can save one person’s life – as AMMES has – that alone is cause for celebration. It means that there is one fewer death from ME/CFS. And I am absolutely positive that given the desperation of some of the people who have come to AMMES for help, we have prevented suicides as well.
When it comes to saving lives, there is no number that makes a project not worthwhile. Every life counts.
AMMES is currently running a Crowdrise fundraiser. Please DONATE. We spend every penny on patients in need.
https://www.crowdrise.com/o/en/campaign/american-me-and-cfs-society
What do you envision for AMMES in the future?
For starters, I would like to see every ME/CFS organization in the country make a substantial yearly contribution to the AMMES financial aid project. We all know how devastating this disease is, yet the devastation of poverty-stricken patients gets short shrift. Each organization that even mentions the fate of severely ill patients should earmark funds for ensuring that those patients do not die in the streets, or go hungry, or suffer from lack of heat in winter, or clothing. It doesn’t matter that we cannot help every single one of the patients who find themselves in desperate straits, we have a moral obligation to help as many as we can.
Another project that we are in the process of launching is a Craigslist-type of service, where people can connect online to offer free goods and services, post jobs, rides needed, and sign up to be Buddies. The buddy system is something we badly need as a community. We can make friends on Facebook and connect through other social media, but there is nothing like one-to-one contact. Buddies are people with ME/CFS who correspond with their ME/CFS “pen pals” via email. It’s personal, it’s warm, and it’s the next best thing to having a supportive friend over for tea.
Finally, I would really like to see some healthy relatives and friends of ME/CFS patients step up to the mat and join the AMMES board. So far, I have worked on AMMES alone. I need help, preferably from someone who is a social worker and can provide long-term solutions for our applicants. AMMES could also use a person who can raise funds for us. All nonprofits face a perpetual battle for funding, but in our case, we are forced to turn away sick people who are about to lose their homes when we run out of funds. Which is now.
Melinda Gates, if you are listening, please donate a couple hundred thousand dollars to AMMES. Everybody else, ten bucks will do.
Please DONATE. We spend every penny on patients in need….
Update: A generous donor has offered a matching donation of $1,200. If you donate now, your donation will be doubled.”
___________________________________________________________________
I just added my little bit of support. Go to the AMMES Financial Crisis Crowdrise Fund to add yours.
- Read more about the Financial Crisis Fund here and here.
AMMES saved me. Their much needed help prevented homelessness which may have led to Suicide.
I am not being given the serious medical care needed because the hospitals and doctors have turned me away because of their lack of ME experience. I’ve heard things like “Have you tried Mayo clinic?”
I have insurance but it will not cover out of network care.
I have care medical care now that could be much better if the hospitals and medical schools gave my doctors an ME education.
I implore you all to financially support ME research, education and AMMES.
Just as Ms. Verillo stated, please give what you can. AMMES gives every dollar to patients in dire need and those funds are completely exhausted.
Corporate and group donations are out there.
Please help AMMES.
I am in tears thinking that Ms. Verillo has probably had to turn people away because AMMES has exhausted their funds helping many people.
Many thanks to Mr. Cort Johnson for writing this great article! Hopefully more AMMES news will follow.
Thank you AMMES!!!!
x
The only help I have ever had dealing with the poverty
created from this disease has come from AAMES.org.
With the loss of any family support due to deaths, I have
been left in circumstances where becoming homeless is a
scary and very real possibility. Having support is so crucial
with this disease that only worsens from all stress and activity.
Being without support is devastating and causes constant
hardships which only exacerbates the symptoms. How many of
us are just surviving day to day without any hope or help
from other human beings,including an ignorant and negligent
medical community. There are too many of us that need help
now, and no one is seeing us or hearing us except AAMES.org.
Please care and help AAMES.org help those who are all alone
dealing with this devastating disease. We need it! We appreciate it! We are fighting to survive and have hope to
keep going till working treatments can be found. Anything
you can give AAMES.org can help relieve the pressure and
stress of trying to survive alone with this disease.
So very thankful AAMES exists!!
Thanks for sharing that. It makes me glad that I contributed my little bit! 30 years is a long time to withstand the ravages of this disease.
Cort, any contribution is a “big help” not a little one.
Letting people know that there are too many of
us struggling alone is knowledge for others to
create a much needed “lifeline” that AAMES.org
can provide.
We are so invisible to everyone it creates a battle
every direction to attempt to get even a little help.
There just isn’t anywhere to turn with this disease.
30 years is way too long to live in this disease, don’t
know how I am still here fighting.?! I really wanted
to live my life that was stopped at age 21, and
still want it back three decades later. So I am still
fighting and don’t know how AAMES could have
come into existence just when I lost all other help
and support, so it truly is a “lifeline” and a miracle
it existed just in time for my needing help!!
Erica Verrillo is smart, dedicated and has unmatched tenacity. She deserves our gratitude and support with this truly admirable effort she has embarked on.
I am not rich, but I have given to AMMES a few times already. I know how lucky I am to have shelter, food, clothes. So many in our community do not have these basic things.
AMMES has given me a bed to sleep on, food to eat, a microwave, and assisted with a utility bill. Erica is one of the most wonderful people I have ever spoken with and AMMES is such a wonderful thing. I am truly thankful AMMES exists.
Woo – woo! Money being up to very good use. Glad the ME/CFS community was generous enough to provide that 🙂
I am so very grateful to Erica and AMMES. During a very hard time where I was very sick and could not afford to pay my rent – I received a grant that allowed me to make ends meet.
It is such an amazing feeling being supported. This is especially important for ME/CFS patients as stress heightens all of our symptoms making us sicker.
AMMES is truly there in the hard times for the ones who need it.
I will always be sending lots of love to Erica and all of those who support AMMES and I am excited to pay it forward when I can. ?
Thank you Mr. Johnson for highlighting this need as it can never be done enough. Please if you can highlight AMMES every chance that you get, as every dollar is put to emergency use.
I am one of those in a desperate hole at no fault of my own. I was a corporate salesman selling multi-million dollar broadband satellite service around the world. After 9 years with no income and finally getting the correct diagnosis 7 years ago, I am left with nothing.
You see I was abandoned by everyone in my life including family. And being bedridden over 23 hours per day with M.E. has left me fighting for my survival every day on my own as I keep following through all of the agency and non-profit cracks and donut holes that are supposed to be providing support.
I even got M.E. while serving in the Illinois Army National Guard (almost 27 years ago to this day) during my first of 15 years of service. Since I don’t have Veteran status and was misdiagnosed for 20 years, all VA and Veterans groups are unwilling/unable to help.
I would have frozen to death this past December, had AMMES not stepped in to help hours away from not having a roof over my head. I have fallen through the cracks of housing, DRS and Medicaid as they violate their own by-laws in not providing the support they should.
And because AMMES does not receive enough donations, they haven’t had the funds to help secure the medical attention I need to receive disability.
There is a doctor 2 hours away that can provide the support I need but my funds are exhausted and my non-stop search for assistance finds dead ends every time. Things will look promising and then something always falls apart.
Often times what causes everything to fall apart is the name “Chronic Fatigue Symdrome” as everyone gets an instant medical degree from WebMD on the disease from their keyboard search. People tell me they will help one day after I tell them I have Myalgic Encephalomyelitis and will turn me away the next after their Internet search leads them to say “you just have chronic fatigue syndrome” like the deadly disease is just a bad cold.
The bottom line is that I would be dead right now if it wasn’t for Erica Verrillo and the AMMES organization. People say that they want to prevent more lives from being unnecessarily lost to this disease, well it’s time for them to put their money where their mouth is, because it starts with AMMES.
AMMES is protecting those that are days or in my case hours away from death. Every donation matters and it goes directly to saving lives and not any organizational overhead. If you want your charity donation to instantly make an impact, then please donate to AMMES.
Wow Sully,
Another horrific story. If only more people knew what can happen. When out Lives Interrupted program comes out please participate in it. Your live was certainly interrupted….
A generous donor has just offered a matching donation up to $1200. If you donate NOW your donation will be doubled. Please donate!
Erica Verillo helped me keep my dog. I am too weak to walk my dog and my power wheelchair, purchased used from an ad on Craig’s list, was about to die. My doctor was glad to help me get another one. The problem is, insurance only covers 80% and I did NOT have the other 20%. I did not know how to get it. That is, until I heard about AMMES. I submitted a request for help with the co-pay, and prayed about it. Now I have to say that the Lord heard my prayers, and Erica moved to help. I got my new wheelchair. I don’t know how she does it. I could never do what Erica does. Thank you AMMES, THANK YOU ERICA VERILLO! And THANK YOU JESUS!
I would like to add here that if more research were done, giving the NIH the ability to have a TEST to prove ME, we could get an ICD code. IF I had been diagnosed with MS, or Parkinsons, or some other known disease, I would have a better wheelchair, that is made for outdoors. The one I got is made for indoors only. So we NEED to find that diagnostic marker. Oh, and BTW, I make that chair work for me outdoors. 🙂
OMF has shown us that direct action for funding research works better than begging for crumbs from federal agencies. They have their own agenda, and we ain’t on it.
But patients can’t live on air until real answers are found. I am grateful that Ms Verrillo has stepped up to do this work. It is shocking to think that police will arrest and lock up people on the word of a social worker. Our dear leaders no longer even pretend to follow due process or any of those other highfalutin ideas.
The strategy for sick people (including military veterans) is Delay, Deny, And Hope They Die. Government leaders now brag about making conditions for refugees so bad that they will turn back. We see this truly barbaric strategy play out all through US society.
“Hurrah for the rich and famous! Useless Eaters should kill themselves!” is the message we hear over and over every day.
Obviously we have to fight back anyway we can. I say “NO” to social apoptosis. I can still be grit in the gears of the machine, just by staying alive. I’m also sending a check to AMMES. It should arrive by June 7.
I guess I can’t read a calendar anymore. The check should arrive by May 31.
In early years of my CFS, there have been many occasions that I was desperate to get something done and the task on hand was just insurmountable. I have wished more than I cared to remember that I had someone to help me. So I’ve been thinking about setting up some sort of network, mailing list, text alert or website, for people in need to ask for help and people nearby could spring up to assist. Maybe AMMES could set up such network as well? Just a thought.
Come to think of it, it does not have to be limited to CFS. I’m sure there are other sick or homeless people, or even healthy people who got temporarily marooned, who need help. I wonder if there is VC money that would back that kind of project :-0
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. Since then for the last 2 months Erica and AMMES have sent me $100 of health products that I have chosen from ProHealth!! That is on top of the emergency grant money!!! 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.
Thanks for everything Erica and AMMES!!!! Thank you Cort Johnson for giving Erica Verrillo and AMMES an interview and sharing what a wonderful organization AMMES is.
Ben Hsuborger from MEACTION.COM suggested AMMES when I was recently facing homelessness. I was living in an apartment that I loved, but had recently been sold. The new owners told me they weren’t going to have me resign my lease, and I had 30 days to move.
I have pretty severe myalgic encephalomyolitis and spend 99 percent of the time in my hospital bed. I had to give up my time with my 3 teenage kids because I couldn’t take care of them the way they deserve. I see them on weekends now.
So being asked to leave my apartment and away from my kids and their schools was horribly heart wrenching. I am on ssi, and somehow by the grace of God, my name was up for a wheelchair accessible family housing unit! But, I couldn’t move in until I paid off my current very high and over due utility bills from the current location.
I don’t have friends and family support, that would be able to pay the water bill or energy bill. I was also days away from the power being turned off, and this power company gives you one chance to use health issues to keep power on, and I had used that reason already. It’s wrong, but so is not paying my bills.
I just wasn’t making ends meet, and choosing toilet paper, food and medicine, and I am also dealing with mast cell activation syndrome -so I spend more on fragrance free, dye free, no nitrates, gmo, chemicals etc. In foods as well as anything that I breath or touches my skin.
I also had a high power bill because I can’t open the windows and can’t regulate my body temperature like I said, so my air conditioner was on in March just to get the humidity under control. So I reached out to Ericka from Ammes, and asked for any possible help. I couldn’t believe how quickly she responded! She said such empathetic things and offered to pay my 2 bills, so I could move!! I sobbed with happy, relieved tears!
By the time my slow self got together and sent everything needed, the funds at Ammes were gone. But Ericka sent out a plea for donations, which covered one bill, the other she paid from her own money.
That was way over and above, and very humbling experience for me. Please donate to this cause for the people suffering from this life stealing disease ME/CFS. I promise to somehow, in some small way to pay it forward. Without the kindness of AMMES, I would be homeless and unfortunately I am not an unusual case, and that is why we need corporate donations, or $5 donations.
Thank you.
What a wonderful example of what AAMES can do. Thanks so much for telling your story, Rebecca.
I’ve been sick with ME/CFS since 1985; based on historical information, I now believe my initial infection was linked to the Lake Tahoe outbreak. In all this time, except for the past two years, I’ve been baffled by my health condition and singularly struggling.
In the past 34 years I’ve gone from being 50% functional to not being able to work or manage at home. During this time I’ve been mostly alone since, as a transgender person, my family has not been in my life; friends are far and few between too. The isolation brought on by this illness is compounded by familial rejection. Without family and friends, I didn’t know where to turn as I continued to get sicker until a local ME organization put me in touch with AMMES. I am so grateful that they did!
AMMES offers understanding and peer support, as well as tangible economic assistance that helped me to avoid financial disaster and likely homelessness.
We need more of the crisis intervention work that AMMES provides since so many people with ME have no resources or personal support, a familiar story. Many of us rely on government programs that force us into poverty. AMMES addresses poverty and its consequences through informed, direct services. It helps those of us with no safety net to avert total disaster. I’m certain that AMMES has saved several lives since being homeless, or without utilities and food, would definitely do some of us in.
I hope people realize that just as we need funding for research and treatments, we also need support organizations like AMMES to keep us alive while we wait. Please donate it you can and please spread the word if you cannot send money.
AMMES has thrown me a lifeline when this world has otherwise felt unlivable. I can’t thank this organization, and Erica, enough for all that they do!
Hi. I am bedridden now and lost my job in 1999. Before that I volunteered with many organizations and worked in zoology and leadership to bring climate change actions into all of our lives. I volunteered for many years and learned how to introduce ideas. Large corporations used to fund philanthropy with two years pre planned. So we wrote up project plans at all funding levels for donators to select. It ranged from $50 dollars to a few million. It worked out well.
Your mention of Melinda Gates gave me an idea. I want to do a doctorate including these illnesses and neurology but I am bedridden and am too broke to fund it but doing a combination like this leads to research on meeting peoples basic needs and beyond. I still consult for free on projects I helped set up over 40 years ago.
I live in the UK, I have just donated to AMMES because although I have had ME since at least 1983 and have little contact with my family I have benefits from our DWP system although I go through stressful reviews, where I loose my claim and have to make a Mandatory Reconsideration claim taking 8 weeks or more, I am lucky to have a friend who is dedicated to caring
Just lost all my comments! Can’t do it all again. Live in the UK, Donated. Have benefits and reviews and keep loosing them and gaining back after 8 weeks or more Mandatory Reconsideration, VERY STRESSFUL, affects my live in carer allowances too. At least I have those in the UK. Ill since 1983, too illl to find the words until benefits denied and galvanized into research with help of carer.
We have some community websites in UK for sharing Neighbouhood News and Needs called Nextdoor and for advertising Free stuff and wanted stuff called Freegle people also chat on these, but I mostly cannot cope with them.
Thank You Erica
Thank you Cort Found Your Site and Suzan Jackson’s Learning to Live with CFS at my most desperate when I googled Aphasia! 2017 and didn’t know I had Yuppie Flu.Since 1983
Thanks Janet for donating! (Your other comment went through by the way – it got held up in the moderation queue.)