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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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14 thoughts on “#MEAction Seniors Release their Bill of Rights”
The statement seems to promote euthanasia in a cryptically worded sentence. For this reason (euthanasia plus bad/unclear wording) I cannot endorse the statement. Sounds weird!
” . . . and desires to end the struggle of day-to-day living with ME” is mentioned after a senior’s ability to REFUSE TREATMENT for any condition that may aggravate symptoms.
It is not talking about taking your own life.
Cancer treatment, for example, can make one feel awful-er,
even if it is only for a few months.
After decades of struggling to feel less awful every hour of every day, some (including me) may not want to accept treatments that will only prolong our struggle.
I appreciate your bringing this up for discussion,
as we are not advocating suicide.
But it is important for the public to understand just how draining living with ME for MANY DECADES can be.
thank you for the human rights recognition.
i like the pie chart. may i suggest stratifying it by severity or location to see if anything pops out? medical care for homebound is critical for many — some countries do not normally do house calls.
thus, many pwme do not have any doctor or nurse at all, while being sicker than most of the most serious diseases. i was bedridden with no doctor for many years and i am vulnerable to that again, and i will not likely survive without a doctor. that’s a human rights issue.
You make good points – these basic rights SHOULD be available to PwME worldwide!
The MEAction Seniors Connect group includes over 1100 members worldwide.
The average duration of our time living with ME is almost 30 years – that’s 30,000 combined years of experience living with ME!
Severity does vary within our group, but a majority are finding aging is making it worse.
Since all PwME are, at this point, unlikely to be cured, this is relevant to everyone here.
I think that this is a powerful document and with one adjustment feel comfortable with wide distribution. I am concerned however that circulated under the banner of MEAction that there would be a perception of the suicide stance that I do not believe had been approved by the group. I am not proposing a debate about suicide here but rather wondering if that paragraph can be amended to avoid the topic of suicide.
I think that this is a powerful document and with one adjustment feel comfortable with wide distribution. I am concerned however that circulated under the banner of MEAction that there would be a perception of the suicide stance that I do not believe had been approved by the group. I am not proposing a debate about suicide here but rather wondering if that paragraph can be amended to avoid the topic of suicide. Instead of “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 end the struggle of day-to-day living with ME.” Maybe it should just say, Refuse treatment if it is likely to aggravate current conditions.”
Sadly, I’ve had ME since 1987. You’d think after 31 years, something in the system would have improved or changed for the better. Back then, one of the biggest problems was the CFS name and today, it’s not much better. Every year I hope to hear that there’s a definitive test so the non-believers, especially in the medical field would give us validation. It would be nice to know that a cure is on the way, but at 61 years of age, I probably won’t see that happen in my lifetime. I did not think this would be a lifelong struggle and as the years pass, many of us get worse as we get older. The biggest problems right now are awareness and research dollars which are practically non-existent. I feel for the young one’s who have ME and may be in a similar position as me decades later. We really need to take a stand because right now we are our own advocates and we deserve to be treated with the same respect as people with other chronic illnesses.
Thanks, Sue; you are one of those for whom we are advocating.
It is true that we need to take a stand right now,
not only for our own sakes,
but for the sake of those younger folks with ME who will be following in our footsteps.
My experience of being elderly with ME is we don’t have any rights. Even my rights as an elderly person are disappearing fast as Austerity bites. Many people with ME are treated badly by the medical profession and if aging, becoming isolated, unable perhaps to cook fresh meals, and a host of other things that become impossible to do, affect us we may lack the self-esteem to be dealt with as we would want. Isolation for one is a killer; research has identified that. I don’t think this article was suggesting suicide or euthenasia as some commenters have said, but we are more vulnerable to death than seems to be recognised. That surely needs addressing.
So true Bluebell
Thank you writers! I am grateful for this document. The Bill of Rights for Seniors with ME is heartening and boldly stated!
Many seniors, including myself, have lived with this illness for decades. As we age, there are the inevitable other aches, pains, diminished acuity and life threatening illnesses.
The reality of life as a senior with ME/CFS can be harsh. We have not been able to continue our careers, and may be in dire financial straits without family to care for us. We may have lived with the isolation of this chronic invisible illness for much of our lives. This alone takes an enormous toll.
Persisting in this condition takes enormous strength, courage and determination — but it also takes support. Medical awareness of our unique needs as a population is non existent. We have no one identifying our particular treatment issues.
This is call for Research we hope gets heard.
As the chart indicates, many of us are getting worse as we age and do not have the resources to rely on to provide for our own care.
This is nothing less than a public health emergency.
We are in urgent need of research, treatment, housing, in home support or quality affordable institutional care that takes account of our cohort’s unique medical needs.
We need the support of the ME Action group to help advocate for us as part of the larger mission. Eventually, you will be us.
Lastly, I read the concerns about the right to our own agency in determining length of life and death with dignity, if quality of life has become too diminished, as naive. The almost unimaginable difficulty of living with ME/CFS for 30+ years is not to be dismissed. I do not believe these writers are endorsing suicide, but rather proposing that the same consideration be extended to these patients as exists for other incurable, terminal illnesses. The right to die with dignity is a basic human right.
Many thanks to these writers for the time and careful thought that went into crafting this valuable document.
Amazing article! Very well done. We deal with so much as we age with this horrendous illness. I’m not seeing what other commenters are about euthanasia or suicide. Just because people don’t want to suffer any more does not mean they are thinking of those things. The pie chart seems right on. I too worry about my symptoms getting worse and how I would get by financially if I lost my husband. Thank you for organizing this piece into an easy to read format.
It is evident that a great deal of thought and care went into this document. I believe it describes our circumstances and needs quite well. I would change nothing . Thank you!
The sentence in question has been amended to reflect the original intent. Thank you for your comments!
Comments are closed.