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HOMELESS: How AMMES is Keeping People with ME in their Homes

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Erica Verrillo is President of the American ME and CFS Society (AMMES) | Photo by ALACHUA COUNTY /Flickr CC BY 2.0

Years ago, Dr. Bell made the observation that many people currently living in cars most likely had chronic fatigue syndrome (CFS). (The acronym myalgic encephalomyelitis (ME/CFS) was not used at that time.) Under any circumstances, the threat of homelessness causes despair, but among people with ME/CFS the prospect of losing a home is terrifying. Seriously ill people cannot survive on the street. With all the restrictions the disease imposes on them – insomnia, food and environmental sensitivities, compounded by pain, profound loss of energy, cognitive impairments, and a dozen other symptoms – people with ME/CFS can’t even survive in a shelter.

So what happens to severely ill people when they lose their income? What happens when they are on their own with no support from family or friends? What happens when homelessness is right around the corner? Where do they go for help?

AMMES to the Rescue

The American ME and CFS Society (AMMES) was not originally intended to be an eviction defense organization. Our mission was very much in keeping with other 501(c)(3) nonprofits; that is to say, it was broadly defined. We aimed to provide support, advocacy and education, and to assist patients and their families with practical needs, such as locating a doctor and finding effective treatments. However, it soon became apparent that the most pressing needs faced by disabled patients were not covered by our mission statement.

A few months after launching AMMES, we held a fundraiser to gather resources for our newly formed financial crisis fund. The fund was intended to help severely ill patients pay for a single necessary expense, such as medicine, food, or housing. We viewed the fund as an adjunct to other social services, a stop-gap measure. At the time we did not fully grasp how dire the circumstances were for these people with ME/CFS.

Since forming the fund, we have helped to provide copays, as well as money for clothing, food, and medicine, but by far the single greatest need has been housing. Those who apply to the financial crisis fund are often on the verge of eviction. In one case, we received an email with the subject line “URGENT” from someone being evicted that very day. This patient was facing a night in his car when the temperatures were well below freezing. He was not exaggerating when he said his need was urgent, and that he might die that very night.

The anxiety generated by not knowing from one month to the next if there will be a roof over their heads has an immediate deleterious effect on the health of these patients. It is well known that the release of stress hormones has consequences for anyone with a chronic illness, but in the case of ME/CFS the release of stress hormones over an extended period of time can result in a relapse. Even short-term stress can cause an exacerbation of the disease.

Testimonials

In all cases, the people we have helped have come to AMMES as a last resort. They have applied for assistance from government sources and other nonprofits, only to be turned down, or offered amounts that were inadequate. Usually, patients who are severely ill cannot even navigate the system. They don’t have the energy to jump through the hoops required to get assistance.

“I didn’t know from month-to-month whether I’d be evicted from my apartment because I couldn’t pay the rent. Utilities, medications, transportation, food, or paying for any other bills just wasn’t possible when I barely had the strength to get out of bed. My family refused to help – they simply did not understand how sick I was.

 Often, it would take days and sometimes a couple of weeks to complete all the paperwork and be told whether I qualified for assistance or not. During this time, I had no energy or time left to do anything else. Afterwards, I was so exhausted, all I could do was sleep. Many required that I provide proof of full-time work, which I could not do. All of the above did not understand the severity of the condition, or the devastating impact it was having in my life.

 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

You Can Help

The truth is that nobody in this country should be without a home, but certainly nobody with ME/CFS should be forced into homelessness. The plight of ME/CFS patients who regularly undergo housing insecurity has been going on for long enough. It’s time we did something about it. You can help by donating to the AMMES financial crisis fund here:

Donate to AMMES Crisis Fund

And if there are any social workers out there who would like to help, AMMES would be grateful for a volunteer to guide patients through the process of applying for long-term assistance.

Learn more about AMMES Financial Crisis Fund.

Categories: Advocacy, All News, Community, Featured news, Uncategorized, United States

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10 comments on “HOMELESS: How AMMES is Keeping People with ME in their Homes
  1. Katharine Keeling Spann says:

    I have been living with severe M.E. for almost 25 years. Due to the fact that I am 56 and my husband is 70; he is now on Medicare (after forced retirement at age 70). We are living on his Social Security and a small pension. However I cannot get Disability or SSI, therefore I do not have health insurance! The monthly cost of high risk private insurance is exactly the amount of my husband’s social security check.
    I would like to have AMMES place the time & energy that I am sorely missing into bringing to light these kinds of issues to the govt agencies that could help people like me. Or at least help people like us navigate a tricky system where only ‘those in the know’ can actually get disability or SSI. Help people like us find local and State agencies who could help us with private insurance, etc.
    My biggest fear right now is to be placed in a State nursing facility where I am forced to sit in a wheelchair most of the day-rather that being able to lie down and rest. Thanks. #AMMES

    1. MS says:

      Hi, Kathleen,

      I am sorry to hear of your troubles. There is an excellent website called How to Get On that provides a lot of practical information about daily life/ poverty with ME/CFS and also advice about obtaining SSI or SSDI.

      https://howtogeton.wordpress.com/about-the-artist/social-security-disability/

      Also check out the Nolo law website for information. Nolo SSI/ SSDI books can often be check out at libraries and are written for lay people navigating the law. (They’re so good that some law students use them to understand concepts.) Ask around and get the names of SSDI lawyers who might be able to help you. Call up 3 and talk to them: sometimes people don’t know SSDI lawyers work on contingency: no money up front.

      Also, read up the SSDI ruling on ME/CFS so you understand how SSDI decides. Have your husband, relatives, friends, former boss/ co-worker, pastor, etc. and not just your doctor write testimonials about how ME/CFS affects your life now compared to when you were healthy. My former boss wrote them a note about how much I loved my job. It was not something I would give up if there was any way of continuing to do it. My relative wrote about how he had to help me with getting to appointments, grocery shopping, cooking, etc. My childhood friend who had known me for decades testified to my character. Most people don’t know SSDI accepts testimonials

      https://www.ssa.gov/OP_Home/rulings/di/01/SSR2014-01-di-01.html

      The process is not easy — in fact, applying takes a lot of time/ effort — but don’t give up. My mom encouraged me to do bits and pieces here and there over time. I was the type of person that was deemed the least likely to qualify for SSDI — based on age, education, background, etc. — and it took me 2.5 years. Went through the whole process to court and got a favorable result. I believe you can also re-apply again even if you have been rejected in years past. The fact you remained sick or have become sicker may work ironically in your favor.

      Good luck.

  2. Ben S. says:

    I just went through what Katherine is going through and I understand the difficulty of the disability application process; it’s a throughly abelist system. Having a national organization to coordinate resources, or to help people apply for SSI/SSDI, is an excellent idea.

    This is called direct services in public health worlds; programs designed to support individual’s immediate needs while other entities focus on advocacy for research and treatment. Having been a part of other social justice movements, I know that political advocacy for long-term change and immediate, direct service support (for survival) are equally necessary.

    Losing housing is probably the #1 destabilizer of the health of people with ME. It can cost us our lives. My understanding is that the AMMES crisis fund is explicitly to keep people alive while long-term advocacy begins to change our world. That said, it takes money and and staff to be able to provide direct services and life-saving resources.

    I have heard resentment amongst our communities about giving money for direct support of individuals in crisis. I hope those people realize that supporting a crisis fund takes nothing away from the advocacy side of things. We need both.

  3. Pam Lutey says:

    Have you ever thought of raising the money to purchase a home for people with ME? It could be a home for 4-6 people depending on the home and the number of bathrooms. Then have people apply to be in the home. We have so many that are almost homeless and not sure what to do. What money they do get would be used to cover costs of a cook, housekeeper, etc. Perhaps a caregiver that works full time to do these things. Renting would not work because you never know when a landlord might sell. This might be dumb idea but would love to know what you think.

    1. Jaime S says:

      I (Jaime) have personally thought of doing just this. I did set out some budgets as well. I should chat with AMMES and let them know everything I found out/ researched.

      1. You can spend $600,000 (minimum) to buy a six-bedroom home for six people with ME and support them, or you can give $600,000 to AMMES and we will keep 100 people in their homes and pay all their expenses. Which one sounds like a better use of funds?

        1. Pam Lutey says:

          How long do you provide the money for all of their expenses? Many will be in this situation forever.

          1. We can provide support for as long as it’s needed, but it depends entirely on how much money we have. We have supported people for several months while they apply for disability. And we have seen people through while government assistance was pending (Section 8, food stamps, etc). We also help with longer term solutions, by researching available assistance in their area, which many of them are not able to do. This is work that is badly needed. Anybody who wants to help us do it will be more than welcome.

          2. Pam Lutey says:

            Dear Erica,Thanks for the response.  I have been working with a gal in NJ. We have tried all of the agencies and most have been of little help.  People have to be poor in order to get services.  If you are just over the limit, very little is available,  People hardly have money for rent, food, etc. but can’t get governmenthelp.  With ME/CFS most can do very little and so little chores, like keeping the house clean, cooking meals, even the basics like bathing and brushing their teeth is very hard.  They don’t have the extra money tohire anyone to do these chores but are over the limit for help.  Would love to hear what government agenciesor organizations have help for these people.  I love what you are doing and it is so necessary but what dowe do for those that fall between the cracks?  I will put together a list of agencies that we have tried.Yes, I would be willing to help.Sincerely,Pam

  4. Katharine Keeling Spann says:

    Ben S. ~ Thank you for your post. I have just today been able to read the responses to my post. The ‘list’ of things first suggested to me: read, call, go to library..etc. is just so overwhelming! I just really want to brush my teeth; but the fatigue keeps me from such a task. Don’t even ask about bathing.
    We lost our home 7 years ago and had to give it back to the bank due to all the med bills. We have been living in a little house since then-but the landlord has sold it and we have to be out by April 30. Don’t know where we are going-or how. But 25 years of chasing a cure for a poorly understood illness was a waste of money and energy.
    This was not the future we imagined. How many more ME/CFS patients are in the same predicament?
    Thanks for your insight and understanding!
    Grace & Mercy ➰Katharine

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