Beyond Research Advocacy
Raising Awareness Of The Survival Needs Of People With Myalgic Encephalomyelitis
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ME Awareness & Advocacy
This page is part of a much broader goal of helping people with ME. These ME Awareness or ME Advocacy posts and account are important because ME is one of the most neglected and underfunded diseases on earth and people with ME are often dismissed and invalidated.
A constant question by allies is "how can we help." The most common answer is "donate to research."
Research is important and is essential. Without it no amount of privilege or accommodation can fully rid ME patients of our suffering.
But, research is not all that is necessary to help us, and the people who need much more than just research are those least likely to be asked at all. To benefit from research you need the means to survive long enough for it to matter.
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Access To Treatment
The vast majority of people with MECFS are not even receiving the symptom management advice and treatment that we do know works.
80-90% of people with ME are undiagnosed. These patients may either not know or be unable to pace, worsening their condition.
Furthermore, experimental or symptom management treatments like LDN, certain supplements, anti-nausea meds, migraine meds, IV fluids or electrolyte drinks, antihistamines, SNRI and nerve pain medication, CBD /MMJ etc. can all make a massive difference to quality of life even if they are non-curative or not even addressing ME directly. Not to mention mobility aids, access to care, and accomodations.
But most people with ME do not have access to a doctor who will prescribe these meds or may not be able to afford them even if prescribed. Not to mention the tremendous additional challenge to seeing a GP regularly if you are homeless and constantly changing locations.
Emergency rooms are by far the most hostile places for ME patients to attempt to get help. Yet the less financial resources someone has the more likely they are not to seek or be able to access help until they need the ER.
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Pacing Privilege
The only officially recommended treatment for ME is pacing. Pacing is the act of rationing your energy to avoid triggering post-exertional neuroimmune exhaustion (PENE/PEM) in other words doing everything you can to not crash.
But if you need to work to survive, or you have no way of getting food without leaving the house etc. then pacing can become impossible.
Many families do not understand the necessity of pacing and end up doing much more work later to care for family members who could have been much more independent if they had been supported in pacing earlier.
Others have no choice but to not pace, often with the idea that the worst thing that could happen to them is being completely broke. But if the level of exertion necessary to survive is causing deterioration, this mindset can lead to being completely broke and in a completely broken body.
What do you do when pacing is a privilege but not pacing is not an option? There is no good answer.
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The Privilege Of Being Helped By Research
In order to be helped by research, someone with ME has to already have access to an ME literate doctor and the money to pursue new and cutting-edge treatment.
This is something many people cannot access. If someone with ME is homeless and unable to work, their priority is not the development of a cutting-edge treatment they will almost certainly have to wait years to get access to (and that's after years of development). Their priority is surviving the next year through access to food, shelter, mobility, safety and rest.
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Biased Advocate Representation
A lot of posts recently have been tagging accounts to follow for ME advocacy. I was grateful to be included. But looking through the accounts, I realized that almost every single one of them had substantial financial privilege compared to the average ME patient.
These accounts are more likely to advocate for research (as I myself am often drawn to) because it is what we need to get our lives back.
But if someone does not have access to food, shelter and healthcare their advocacy energy is far less likely to be spent on educating others. It needs to be spent on advocating for their own survival and there is often little to none left after that is done.
These patients are also more likely support mutual aid or similar over identifying with ME specifically. Likely because it is more in line with the people advocating for what they need.
While some low income or no income ME patients do produce amazing ME awareness content, the most prevalent ME awareness content in presentation and refinement comes from more privileged patients, patients whose top priority is much more likely to research.
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Fighting For Basic Human Rights
It is essential that we advocate not only for research but for patients' survival. This means easier qualification for and adequate provision of disability benefits. It means getting known symptom management treatments fully covered by government health insurance. It means fighting for mutual aid and donating time, food, and space to those who need it.
In addition to fighting for the needs of people able to self-advocate like those with less disability, family support and generational racial and wealth privilege we must also fight for the unique needs of those homeless or unsupported in nursing homes. For those with abusive families. For those fighting not just for health but for survival.
Abilism denies people their basic human rights. Our goal as people with ME should not just be to find a way out of disability, it should be to ensure the human rights of all people with disability.
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The Importance Of Research
Research does matter. I will always support it. Diagnostic tests can help bring down the 80-90% undiagnosed figure. More thorough support for treatments like LDN and fluids can help get those treatments covered by government insurance. Quality of life and functional studies can be used to help argue for more disability support. If a cure is found it could give millions of people back their lives.
But research is a long-term goal. Not a short-term survival need. It is essential that we do not neglect the survival of the people who are suffering now in favor of only working in the future. I truly hope that there will be a cure for ME in my lifetime. But that isn't 100% under our control. What is under our control as a society is making sure that everyone regardless of their disease's curability has a right to basic human needs and autonomy.
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Balance in Advocacy
There are some parts of ME Advocacy that overlap between advocating for research and advocating for rights, things like raising awareness of our suffering and compassion for the community make people more likely to support both research and direct actions.
But it is also essential that we do not focus just on the impacts of ME as a disease, but also on the societal impacts of being unable to work in a capitalist society. Homelessness, poverty, starvation, these all happen to people directly because of ME and are things we as advocates should care deeply about if we care about people with ME.
Research matters. Survival matters. People with ME matter, our present AND our future. We matter now, even without a cure, even sick and disabled.
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Immediate Actions
Donate to the AMMES Financial Crisis Fund
Follow and Contribute to Mutual Aid Communities like:
@SpoonieUniProject
@MutualAidSavesLives
@YourLeftPocket
As well a personal fundraisers for care and survival outside of formal groups.
Offer assistance to people in Facebook groups or other ME communities in pursuing disability support.
Make a post raising awareness of the immediate survival needs of people with ME.
Help someone with ME with groceries, cleaning, or other necessary tasks they may struggle with.
Follow @mutualaidforME to join a
mutual aid community by and for
people with ME.
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People with Myalgic Encephalomyelitis or ME deserve the research necessary to give us a future. But to have a future you also have to survive the present.
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MECFS is an illness that is severely disabling and horrendously underdiagnosed. Those who are diagnosed are rarely granted and often undergranted disability supports.
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The more marginalized you are, the more likely you are to have less formal recognition of and support for your disease. You are also less likely to have friends and family with the wealth necessary to help support you.
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ME awareness matters. ME research matters. But we must also dedicate focus on the people trying to survive NOW with ME and complex chronic illness.
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This month is ME awareness month, it is also the awareness month for fibromyalgia, EDS, mental health, MS, Behcets, Lupus, Lyme, and others. Research awareness might make it seem like these groups are fighting for funding. But the reality is that patients with all of these illnesses are fighting for survival. For the right to food, shelter, healthcare and safety. For the right to disabled existence in public.
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So this awareness month I urge you to think beyond research and find ways to help pwME survive now.
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Donate to GoFundMe's like for my friend Luca @yr_m.e_friend
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Support mutual aid projects like @SpoonieUniProject @MutualAidSavesLives and @YourLeftPocket.
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Support low income creators like @Access.Ecology and @RareDiseasePatient
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ME affects 1 in 100 likely much more following long covid. Find people in your networks and directly help them with food, rent & caregiving.
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So donate to research, support @OpenMedF and @SolveMECFS. But don't forget the people who can not wait for research. The millions missing who are fighting not only for health but to survive long enough for a shot at it.
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Disabled Lives Matter and they don't just matter cause we might be cured
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If these sorts of direct actions towards helping pwME matter to you follow @mutualaidforme for an upcoming project I am part of.
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