This is the second in a series of articles celebrating visionaries in the ME/CFS/FM community who have taken the actions to make their visions real …
AMMES is stepping in to help those who are in crisis.
Sometimes we overlook the obvious. We know studies indicate that chronic fatigue syndrome (ME/CFS) is probably the most functionally disabling disease known and we know what that means. People are out of work. If you have significant assets when you get sick, or you have a family member to support you, hopefully you can make it.
But what if you don’t? What if your spouse is gone? Or family won’t or can’t help out. Or you don’t have a nest egg to dip into?
You’re not working, you didn’t get disability (or if you did, it’s not enough) and money needed – just for the basic necessities – is not coming in.
The hits start coming. You drop your meds in order to pay for food, your heat is about to be turned off, your refrigerator breaks down, a wheelchair to keep you at least somewhat mobile is impossible, your clothes are wearing out, etc.
AMMES Financial Crisis Fund for ME/CFS
Enter Erica Verillo and the AMMES Financial Crisis Fund for ME/CFS. Talk about filling basic needs. Talk about putting a vision into action. Nobody had tried to help the truly needy among us before – it was untried territory – but Erica stepped forward and declared that she would be responsible for taking care of the people in our community in need and launched the Financial Crisis Fund.
The ME/CFS community responded. Over the past nine months over $24,000 has gone to support people with ME/CFS living on the edge – worried not just about ME/CFS – that’s more than enough – but how they are going to keep their roof over their head, their lights turned on, their appliances working, etc., through the next day, the next week, the next month.
One recipient of the fund reported:
“Through the financial help from AMMES I’ve been given the invaluable gift of time. Now that I’m not constantly experiencing fear and anxiety about being able to maintain a roof over my head, keep the lights on, or have any food to eat, I have some time to put any energy I do have towards healing. Thank you Erica, AMMES, and all its generous donors. Your gifts have enabled me to begin changing my mental outlook from despair to one of hope.” R in Colorado
The AMMES Financial Crisis Fund has paid for
- clothing
- medical bills
- phone bills
- home care
- a bed for a patient who had been sleeping on a couch
- a co-pay for a wheelchair
- shoes for a patient who had only flip-flops after an abusive ex had destroyed all her clothing
- repairs for a back door after a house was broken into
- security deposits on apartments.
The truth is there are lots of needs in ME/CFS: there’s the urgent need to support research and effective advocacy. Health Rising needs resources to do its work.
I assert that we can do it all – we can support the research, support advocacy and help the sickest among us…
It seems like there are almost too many needs but I assert that we can do it all. We can support the research, keep a strong advocacy movement, support small organizations like Health Rising, and we can support those most in need.
On Christmas Day, I am celebrating Erica Verillo and AMMES and the work it’s doing and I urge you to do the same. I just put in my small contribution – a small Christmas gift from me to those most in need.
AMMES is a registered 501 3 (C) non-profit. Your contributions are tax deductible.
(Don’t miss an inspiring holiday message from Llewellyn King)
What a great idea and cause to donate to Cort – thanks for letting us know about this. Wouldn’t it be great if a billionaire would build complexes ( apts) in various areas of the country for those with CFS – specialists on hand, pool, sauna – all the things that might help people feel better to say nothing of the social support.
Btw quite a 99 yard TD run yesterday…:)
Yes, indeed – helpful that would be….how much distress would be relieved!
(and yes – sorry about that run Betsy!. I loved it!)
Organizations to support research into ME/CFS could very much benefit from the efforts of other organizations to help fund research for debilitating and/or fatal diseases. Alas, the SolveCFS organization seems unwilling to entertain ideas it hasn’t already come up with. I am distressed and trying to figure out how to connect with others to make more of an impact. Cort’s newsletter is a gift. But we could be raising much much more money for ME/cfs research than is being done in the current paradigm. Help! Whom to connect with?
yes, I ask myself the same question? millions worldwide and if everybody would give as they can, even if it is just 5usd the outcome for non profit research must have been much larger. I give what I can, again and again and here in Belgium there is even no research, just CBT and GET; So I even turn my gifts to the US because a total lack off intrest here from the goverment.
I am severely ill, 99% bedriden, can otherwise than donate and sign a petition not do anything.
But here, the minister of health, I wished her the worst cfs, the worst FM, the worst everything.
@Konijn:
Yesterday Kathy Bungard posted a post on an IMO excellent Belgian research paper in https://www.healthrising.org/forums/threads/the-link-between-idiopathic-intracranial-hypertension-fibromyalgia-and-chronic-fatigue-syndrome.6101/#post-34642
The paper itself is a Belgian University of Leuven paper https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6292399/pdf/jpr-11-3129.pdf.
So if this kind of quality output starts to come from one of the more rabid CBT/GET countries then there may be hope this Christmas ;-).
Hang on Konijn, spring may be coming.
Isn’t that something! When we get papers like that one and the one from Visser from these countries – that is really good news!
You know the Netherlands said we need more ME/CFS research and less CBT/GET 🙂
https://www.healthrising.org/blog/2018/03/22/dutch-cbt-chronic-fatigue-syndrome-cbt-get/
Let’s get in touch.
Health Rising is going to do a lot over the next year. I would love to hear your ideas 🙂
Betsy, that is an awesome idea. Where can we get one of those??? That is what we need!
This is the first time I’ve heard about this AMMES fund. Please make a big effort to let people know that help is available and how to apply. I’m blessed to have a wonderful husband to support me but I know many don’t have that kind of help.
A great reminder to donate to another very important cause — thank you. Following your example, I just donated as well.
People who are bravely managing to hold on under such incredibly difficult circumstances deserve any help we can give.
Yes, indeed….
I am in Australia. I fear the day that my “nest egg” will run out, and I won’t be able to
pay rent……. it is so encouraging and wonderful to hear that this kind of recognition
and organisation has come into being. Christmas, instead of being a joy, has become
a very difficult time. I’d rather be donating, but all I can donate is my appreciation
that others think of this. I’m busy trying to be brave enough to tell friends I can’t
join in Christmas celebrations, as I am very weak and depressed. Ho hum.
Blessings.
Hi Billie, yes Christmas time is awfully difficult I haven’t left the house but my husband is good about it. I am lucky to have support but having had family members at home for 2 days only, I now feel very ill and no one can possibly understand. It’s lovely to see them but at the same time I dread it, 4 more days of visitors to get through in a few days, oh dear. Best wishes Billie and love from Aus. Also love to konijin.
Thanks Peach Blossom, it helps to share…. lucky you have a lovely
husband….. no, no one can possible understand, it’s the truth of
it all. I wish you some form of recovery in the coming year, and me
too. Love to you.
Be brave Billie – just tell them the truth. It’s hard – but it works and then you can get his issue resolved and move on.
I hope an ME/CFS Financial Crisis fund shows up in Australia! Anybody up for that?
Thanks Cort, how right you are, the truth, whether they understand or not.
I have an understanding family, but distance a problem. Do you know how I can get Erica Verrillo’s book “Chronic Fatigue Syndrome – A Treatment
Guide – 2nd Edition, in Paperback, not an eBook. Answer not needed
quickly as it is just past Christmas. I often am called Brave Billie, thanks
Sort for all you do. 20 years of this is a long time.
Erica Verrillo has provided us with THE single most comprehensive ME/CFS treatment guide out there (I can’t imagine the years of arduous work that went into this) and now she is helping those who struggle with the most urgent and fundamental needs! Great idea on your part to draw attention to her work and AMMES, Cort!
Hi Christian!
That book is not only incredibly comprehensive but Erica (not surprisingly) has made it available for a great price. Just 3.99 in the U.S. – https://amzn.to/2SnmVoQ
Everyone should have one.
I’m very happy that you said ‘Christmas Day’ and not the madness ‘Holiday’.
Ha, ha – thanks for the laugh!
This is wonderful. Thank you for letting us know about it. I have my loving supportive husband to care for me but am so aware of what an awful situation many others are in.
Thanks for letting us know about this, Cort. I just made a donation.
🙂
I want to personally thank Erica and AMMES, for providing me with the co-pay I needed for my power wheelchair. Thank you Erica, for all you do, and whoever works with you. Merry Christmas and Happy New Year to you all!
Isn’t that great! That is great!
That made my day.
Enjoy the wheelchair. 🙂
Enter Erica Verillo and the AMMES Financial Crisis Fund for ME/CFS. Erica is my hero. We need all the hero’s we can get.
Cory et al—This financial assistance initiative is news I’ve been dying (it feels that way) to hear. Did i miss the info on how to apply for help? I do feel conflicted— as if every penny raised for CFS/ME should go to research and advocacy. But for me and so many others, I’m sure, the Sisyphysian tasks of trying to get benefits, at the poverty line, coping without spouse or family help, trying to zen away the financial panic, and scrambling (futilely) to meet basic medical and care needs —these use up most of my precious energy. I dream of having even a teaspoon of energy to devote TO the cause! And I know the likes of me are many of those we lose to despair. So I hope that helping us would help us all. Even to connect in conversation with others in my Poverty+ThisIllness situation would be wonderful. I got sick in 2013. One topic for me: helping me and my now-23-year-old daughter cope with how our steep financial losses (our home, almost all savings, my income) and my sudden erasure as a very active (single) Mom has turned her life upside down—not to mention slammed her into the lonely role as sole caregiver —at an age when we both want her to be free to explore and expand her world, not shrink it down to fit mine. I haven’ t yet found resources for teenage and 20-something caregivers in this situation . …One other question for discussion by this group: strategic and marketing advice for how to do a GoFundMe for us (me and my daughter; others like us) , given the not-simple story of our illness (OR the financial plummet that has come with it). All comments welcome!
I was self employed, divorced, and living in my dream house when I became ill with ME CFS and had to stop working. Because I was self employed there was no disability or unemployment insurance for me. So I had to sell my dream house in order to support myself. It has been two years without any income. And as you are painfully aware most of the treatments and specialists for ME CFS are not covered by insurance. I am grateful that the state (Penn) I moved to offers assistance for me while I await my SSDI hearing as my former state would not have done so (heating, SNAP, Medicaid, Phone — and even more help if I had less than $7k resources). I am grateful that I was able to buy my parents’ home fairly inexpensively and that it is filled with their love. I am grateful that I have a small nest egg to fall back on. I am extremely grateful that my former husband came back to be my caregiver… is he not a saint? I am grateful for these blessings as I know others have it much harder. So thank you for creating a fund to help those people.
Well I didn’t know much about AMMES and I didn’t know about what they did for ME/CFS patients. I nearly lost my life the other day because I had nowhere to live and Erica stepped in and saved my life. I can honestly say that I was less than 24 hours away from having no place to live and losing my life, if someone like Erica hadn’t stepped in immediately when she did.
My story is extremely long and I will give you the quick version. My family threw me away because I and my entire family was gaslighted and/or brainwashed by my fortune 200 VP sister who has convinced all friends and family that I’m just a “depressed maligner”. I have ME and was originally diagnosed by Dr. Benjamin Natelson back in 2012.
Last year my father became gravely ill and my mom has major mental health issues since having a stroke and losing her left temporal lobe. So that’s when the opportunity arose for my sister to take power of attorney over my family’s assets and the first thing she did was act on her 5 year threat to have me thrown in the street with nowhere to live.
Like many with ME I don’t have anyone locally and Dr Natelson didn’t live up to his original promise to me to conduct our appointments over Skype so I could get on disability, after Dr. Natelson’s attorneys stepped in (I even showed Dr Natelson the statute in my home state of Illinois where it was legal to conduct the Skype appointements, but he didn’t want to show it to his attorneys even though he agreed with me that it was clearly legal.)
So here I am 7 years later and still not on disability because my Medicaid provider is violating the bylaws of Illinois by not getting me to an out of network provider to treat my ME, since they don’t have anyone in network and there is nobody known in the St Louis area.
My whole story is so much longer and so much sadder than this. I’m so grateful for AMMES for saving my life became I had the exact opposite experience with MEAction, as they would have had a hand in me losing my life had AMMES not stepped in. I’m not here to talk about that now, but I just started talking about some of it on my Twitter feed @pwME_Sully and will keep updating as needed.
It’s always unclear on which organization is representing the most bang for your buck. I can only speak for the 2 organizations that I have dealt with and by far AMMES is first class and my few days of dealing with them and my instincts are all in on AAMES being an A+ organization. Trust me that grade is really tough to find in the non-profit world. I volunteered for one that I discovered operated in a shady manner years ago.
So please click on the links above to immediately support AMMES so people like myself don’t lose their life. This organization is legitimately caring, and aggressively those of us whose lives are in great peril.
Unfortunately, AMMES doesn’t have the current funding to help me for longer than 30 days. I understand that and they have made that clear. So if you or anyone you know can help me out with finding a place to live for the next 6 months, please contact me on Twitter. I’m still a long way from being out of the woods and near the end of this month if I don’t have a place to lay my head, I will lose my life. I’m so disabled that my DON Determination of Need score was a 39 with baseline for nursing home placement being a 29+. This underscores the importance of donating to this particular organization, AMMES. If they had more funding then people like myself could be secured, as AMMES is doing the toughest work…fighting the battles on the front lines for the most desperately ignored. These are the tough jobs that most organizations pretend to be doing but so few fully engage in the fight for the most vulnerable and maligned.
I’m an open book so please do not hesitate to reach out to me directly. Thanks for reading and sorry my post was so long, but I feel what I had to say was extremely important and must be said.
Donate to AMMES and say a prayer for me please!
Oh my gosh Sully. So sorry about your sister! Like they say we can’t choose our family members. Thanks for posting this comment in support of AAMES. So grateful they are there to help out – and now you need a place to stay!
I don’t know how I missed this article! Oh yes I do. I’d forgotten how sick I’ve been for over a month now. I’d honestly never heard of this and I’m so happy to know that this program has been created and is helping people in dire need that are suffering from this disease! There have been so many needs over the past 13 years and no where to get help. Yes my community offers food boxes but you have to come and get it yourself. There are discounts for the disabled on your electric bill but you must come wait in line over the short time span it’s being offered, and be able to provide a lot of paperwork to prove you truly need help. I can’t wait in a line so I’ve never been able to access that discount. Also, nobody else can do it for me. I slept on a couch until about a year ago because when hospital beds were covered by Medicaid my doctor didn’t believe this illness was real and refused to prescribe one. It was absolute agony and I had to be on a couch so I could push myself off onto the floor with my feet as I could not get to a sitting position from a prone position. And lying on my side flared the bursitis in my hips 2 horrible levels of pain that were impossible to sleep through. I also began experiencing acid reflux for the first time in my life and burned my esophagus while laying flat several times. That is excruciating while you wait for it to heal. Fortunately a year ago I got somebody to co-sign for me so I could get an adjustable bed with just the right kind of mattress for my fibromyalgia that I also suffer from. I could afford the payments because I finally got into HUD housing! This bed feels like living a life of luxury! I wish I could do this for everybody out there who is sleeping on their couch or air mattresses. I know what that’s like and it is not good. it’s frightening when you can’t get up. I’ve been able to pay extra every single month so that the bed will be paid off in full before the interest would be applied. I feel extremely blessed and I feel so happy to know that others are getting some help with these things that matter so much to our healing. I know that there’s never enough to take care of everybody’s need, but by golly this is an amazing thing! it definitely was needed in this community. What a wonderful thing!