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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.
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:
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.