AMMES is helping people with ME/CFS at risk of falling through the cracks.
The AMMES (American Myalgic Encephalomyelitis and
Chronic Fatigue Syndrome Society) fundraiser just seems different.
Many great opportunities to give exist in the ME/CFS universe .AMMES is the only one that’s dedicated, though, to helping people with ME/CFS who are living on the edge: people in substandard living conditions, people unable to get basic care, even people in need of food – people in danger of falling through the cracks. As the holidays approach it’s a particularly brutal time to be alone, hungry, cold, unsafe or unable to get medical help.
That’s why AMMES is only outside fundraiser Health Rising has actively promoted.
From AMMES
BREAKING NEWS: A generous donor has offered a matching donation of five thousand dollars in memory of Heather Colman McGill, a severely ill ME/CFS patient who has recently passed away. She was dear to many people in our community. Her presence will be sorely missed.
You can donate HERE.
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It’s that time of year again. The leaves are falling, and the weather is turning snappy. Soon, families will gather around the table for holiday feasts. We will give thanks that we are together, share the bounty of the harvest, and enjoy the warmth and comfort we feel when those we love surround us.
For people with ME/CFS the holidays present a challenge. Even for those of us who have warm, loving families, it is difficult to rise to the occasion. We are exhausted easily by interactions, no matter how pleasant those may be. We can’t talk with our relatives as much as we would like, sit through long dinners with them, and participate fully in family rituals.
The holidays present even more of a challenge for those who have no family to share the holidays with. This is an especially painful time for people whose families have ostracized them.
Kristy’s Story
AMMES is helping those society has largely abandoned.
“Kristy” is one of the applicants to the AMMES financial crisis fund. She is severely ill, and lives alone. Her father threw her out of the house when she got pregnant and her boyfriend abandoned her. Kristy had the baby, but was too ill to care for it, so she was forced to give up her child for adoption. She keeps trying, unsuccessfully, to make her family understand how sick she is.
“They just don’t believe me,” she told me in a recent conversation. “They say ‘Why don’t you get up and find a job? You’re just lazy.’” Kristy is so weak she can barely brush her hair. It takes her days to recover from going to the corner to buy food. AMMES has sent her money for food, but she has still lost fifteen pounds, and she was thin to begin with.
“I’m scared,” she says. “I don’t think I will survive.”
Abandonment and Rejection
Kristy isn’t the only person who has applied to the AMMES financial crisis fund for help after being abandoned. Another woman, who I will call Laura, was rejected by her family, and worse.
“My brother told me to just kill myself,” she told me. “I really don’t have family that cares or understands or is safe for me to seek help from. I don’t know which is worse anymore, the disease itself and how it hurts me or the hatred and selfish disregard for my life from other people.”
Laura is housebound. She can only leave her home every seven to ten days to shop. In between grocery shopping, she rests to recuperate her strength. Life is a continuous battle for Laura.
What we can do
Laura and Kristy are just two of the people who have reported ostracism, neglect, abandonment, and outright hostility from family members, partners, and friends. All too often they say that I am the only person they can trust. This is heartbreaking. We all need friends and family members we can trust.
Let’s make the holidays joyous for those in our community who have suffered the sting of rejection. Let’s include them in our celebrations. Let’s give them the gift of caring.
Please donate to the AMMES fall fundraiser. So far, we have given people like Kristy and Laura over $75,000 in direct aid to help them pay their rent, utilities, medical expenses, food, and other basic necessities. Every penny that is donated will be spent to serve this neglected population.
- Our Crowdrise Fall Fundraiser is HERE.
Our goal is to raise $10,000. That will see us through the next three months.
- You can donate directly to our financial crisis fund HERE.
AMMES is a 501(c)(3) national nonprofit. Your donations are tax deductible.
Thanks so much for bringing this to our attention Cort. Reading those stories is heartbreaking and makes me so grateful for my extended family. This would be a great organization to consider in one’s will too.
How does someone apply for this assistance?
AAMES is filling a need that has been there for a long time. So glad Erica had this idea and made it happen 🙂
This is good to know Cory. I can certainly see the need for the ME/CFS community. Thank you.
We’ve had a bad year 2019, because our vehicle bit the dust along with our washer and dryer. Having to depend on family is very hard. My roommate can’t get to his doctors appointment because I have no car. We live in a rural community and the drive to the doctor takes about 11/2 hours to get there. No taxi or buses.
Is AAMES only available to people in the USA ?
I have had a few ideas swirling around in my head for a while now.
One is the concept of the ‘deserving’ and ‘undeserving’ poor brought into the official realm by the British Poor Law of 1834. It doesn’t take much to adapt this to include the ‘deserving’ and ‘undeserving’ sick.
It seems that so many people with ME/CFS are incorrectly categorised as being unwilling (consciously or unconsciously) to get themselves ‘better’ – the ‘undeserving’ sick.
Another image that I have in my head is of the 1 million Irish people who starved to death in their beds, beside the roads in ditches and so on, during the famine years of the 1840’s.
There was a potato blight sweeping across Europe but poorer Irish people suffered because they were heavily dependent on the potato. These people were producing food for export for their landlords but didn’t have enough money to buy nutritious food for themselves.
There were people trying to help within Ireland but it wasn’t enough for many individuals, who perished. Ireland was under British rule at the time and for various reasons, the Irish poor were left to starve.
I think in our ‘modern’ times, we like to think these kind of tragedies happen somewhere else or in a previous era. However I believe the peculiar situation ME/CFS sufferer’s (especially the severely ill ones) find themselves in, is a humanitarian crisis happening all around us now.
Thanks to compassionate organisations like AMMES, Health Rising, OMF, Solve ME and others around the world, the experience of people like ‘Kristy’ and ‘Laura’ will be recognised and the memory of Heather will live on.
to me in belgium they simply say o excercice or get psychologist. and I am not the only one. from homephysician I have to clean up my room because that gives stress! such things…
being severelly bedridden fighting to even eat or drink. or fighting to have the strenght in muscles to breath and swollow.
I love this. I’ve had M.E. For 25 years, my entire adult life. I’m fortunate as I am not bed bound. I’m divorced w child and it so hard without support. Now I’m w someone supportive and would like to ask For donations here instead of wedding gifts. However, it would be more effective if it included Canada for many reasons, one so people could get tax receipts. I was going to ask donation to research but this is top priority!!!
Hi, we do very much the same in South Africa. In our country there is no disability benefits for patients. Also with the exchange rate we get almost 15 South African rand from $1……. Cort has done an article about our future plans for communes, but any other exposure of our need for funds will be greatly appreciated. Hats off to Erica and her team, they are doing wonderful work!
Kind regards
Retha Viviers
The ME CFS Foundation South Africa
It’s so heartwarming to see all the individuals putting together these kind of organisations, like Erica and Retha, that may be able to provide some practical assistance to very unwell, vulnerable people, who are in desperate need.
I imagine it’s not easy to encounter the hardships experienced on a daily basis, resulting from this destructive illness and made so much worse by the current attitude of the mainstream medical hierarchy and as a knock on effect – the welfare system.
I think it’s interesting that Dr Alexia van der Velde focusses on compassionate care, amongst other topics, when teaching medical students at the University of Cape Town.
One of my cousin’s works with midwives in South Africa, (I was born in Cape Town) also promoting compassion and I believe there’s a need for more compassion in counselling and psychotherapy.
Where did it go so wrong?
I think too much unaccountable power doesn’t do anybody any good.
Thank you, Cort? for bring this much needed and well deserved organization to the forefront as well as many heartfelt thank you’s to them!
Does this fund help only Americans or Canadians as well? Great initiative either way, and if it doesn’t assist Canadians, I hope there will be something similar set up here eventually.