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Written by Nancy K Wood / Edited by Eileen Rosenbloom and Marcie Atkinson
December 10th will mark the 70th annual Human Rights Day, the anniversary of the adoption of the Universal Declaration. The theme for this decadal celebration is Promote, Engage and Reflect.
We in the #MEAction Seniors Connect Facebook group hereby Promote awareness of our plight, Engage in spreading the word, and Reflect on ways our experiences can help others.
Too many seniors have exhausted all their resources while living with myalgic encephalomyelitis (ME) for decades, leaving them without even basic essentials. As you can see from the graphic based on a poll in our #MEAction Seniors Connect group, after years of hanging on by our fingernails, we have many pressing needs basic to survival without a cure in sight.
ME Seniors Bill of Rights
Whereas basic human rights to health, housing and the pursuit of happiness are, in varying degrees, not available to Seniors with ME, we demand that Seniors living with ME be afforded:
1. Recognition among the medical community, as well as the community at large that:
- ME is a disease that can affect the lives of those who live with it as seriously as MS, AIDS or Cancer, and the loss of understanding friends and family over decades causes severe isolation.
- Seniors with ME have unique needs due to additional symptoms of aging, including but not limited to, diagnosis of causes for symptoms that take both aging and ME into consideration.
- Seniors with ME, having overcome challenges, adjusted, made tremendous changes to their lives, and learned from living with ME, deserve not only Respect, but also to be valued for what they can contribute to the ME community and to their family, friends and neighbors.
2. Provision for the same kinds of assistance that other people with serious, life-threatening, or chronic illnesses and/or aging are afforded:
- Safe, affordable, allergen-free housing, including, but not limited to, assisted living and nursing home levels of care.
- Help with daily needs such as bathing, food preparation, transportation, shopping, housekeeping, yard work, dealing with important paperwork, applying for benefits, knowing what we are entitled to, etc., as required.
- Since Persons With ME (PwME) will likely have to live out many more years with this disease, PwMEs need to build up financial resources and require accommodations that will allow them to:
- Work part-time during hours that are flexible enough to allow for pacing.
- Be afforded workplace considerations (such as the need to sit or take breaks as needed).
- Return to their careers when they have a remission. (As veterans do after return from deployment).
- When no longer able to work at all, have consideration of the severity of ME to generate faster approval for disability insurance or government programs.
- Afford medications, alternative treatments, and self-directed assistance that help them (whether or not they are an “approved” treatment) on limited income.
- Refuse treatment if it is likely to aggravate current conditions, or if the PWME feels they have exhausted all options for getting well and desires to let nature take its course.
3. Protection from abuse (including physical, psychological, social, financial, verbal, or simply being ignored) by the medical community, family, friends and neighbors.
4. Inclusion in research and clinical trials, and in the curricula of medical schools.
5. Funding for additional research on ME and aging.
6. Respect and consideration of ways both ME and aging can affect PwME’s treatment, such as ability to access or complete diagnostic testing, pain management, anesthesia during surgical procedures, etc.
7. Access to ME-literate doctors, hospitals, group practices, nursing homes, home health agencies, hospice, insurance companies, agencies on aging and other service and volunteer agencies.
8. Accommodation for diminished capacity (either physical or mental) and lack of access to, or limited ability to use, technological advances and social media. (They can’t always just “Google it.”)
Thank you for helping us spread awareness of our plight!
#MEAction would like your input on their Values and Policies announcement and poll. Perhaps the words in bold above will give you a framework as you give your input.
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If you are a senior (over age 55) with ME, please consider joining our #MEAction Seniors Connect Facebook group. #MEAction Seniors
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