From ME Awareness to ME Action What Can I Do?
This Millions Missing Campaign I wanted to go beyond awareness and focus on actions. In particular, empowering allies to participate in our activism directly during the next few months.
The covid pandemic and massive influx of long covid patients into the ME community has pushed governments into acknowledging ME in a way not seen in decades. This is a moment with potential for change. But what we do with it is essential. Here are some concrete actions you can take to support people with MECFS.
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Support research efforts like Open Medicine Foundation.
Personal fundraisers or donations are the most straightforward path.
Facebook fundraisers are easy to create and share.
Bake sales, walkathons, or community events are an amazing way to raise money WHILE also increasing awareness. Research shows that when people physically participate in an event they are more likely to provide ongoing support to a cause.
Finally remember that while personal fundraising efforts are important and raise awareness, the large-scale increase in research we need requires government support. Emailing your senators & representatives as well as participating in petitions and political action is a crucial part of advancing research.
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Physically or Virtually Attend ME Actions Protests
There will be a virtual global Millions Missing event on May 12th. 1 week from now. Check out ME Actions website and sign up to participate.
There will be an in-person protest event in September of 2022. If you are able to leave the house sign up to receive updates.
Regardless of if you think you will be able to participate in actions, sign up to ME Actions mailing list so you can keep up to date with future plans.
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Work With Local Press
Do you have a campus or local newspaper, youtube channel, or newsletter?
Telling our stories in local journalism is a great way to reach people in our communities.
While national news can be difficult to contact (by all means do so if you can!) Local papers and journalists are often happy to tell the stories of those in their communities.
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Support Local Organizations
Many states, cities, and countries have their own smaller branches or community organizations to support people with MECFS, fibro, POTS, EDS and related diseases. While these small groups may not have the international scope of ME Action or Open Medicine Foundation they often have local initiatives and focus that you may be able to have a larger impact on. Things to look for are organizations that work on
-Harm reduction by eliminating GET and CBT
-Patient advocacy
-Funding for research
-Legislative efforts / contacting politicians
-Helping patients receive disability payments
-Physician education & doctor-patient connections
-Peer support groups
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Direct action
Whether through a local group or independently seek out direct community actions that provide assistance to pwME especially severe individuals who may be bedbound or housebound.
This includes
-Mentally & physically supporting friends with ME however you can
-Starting a peer support group
-Providing or organizing meal delivery to a severe patient nearby
-Helping pwME in your area access mobility aids
-Helping persons with ME self advocate, especially in cases of domestic or medical abuse
-Working with local councils to provide more in home services like vaccinations, appointment transport, and GP visits
-Starting a local ME advocacy organization if none exists in your area
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For persons with ME: Self care reminder
One of the reasons ME advocacy is so difficult is that by definition people with ME are disabled and have limited energy. It must be remembered that the most important act of resistance we do each day is continuing to support ourselves and our existence. For many of us, this may leave little if any room for advocacy work.
Mental health is a serious challenge for chronically ill people who deal with severe pain, fatigue, and symptoms on a daily basis. You should not feel guilty if it is necessary for you to dedicate what little free time you have to a hobby that supports your mental health. Regardless of what outside use that hobby may have.
Finally, while this post stresses the value or physical world actions, all advocacy is valuable and often for pwME directly this means focusing on the advocacy most accessible to us: digital awareness. This is a crucial area that pwME are best equipped for and is one reason why I encourage our healthy allies to focus on the part we often cannot: physical actions.
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For our healthy allies: We need you
If you are able-bodied and have come to awareness about ME we need you. Because pwME and their caregivers are faced by our society by such a massive financial burden of care and support for a severely ill individual, it is essential that our movement include those who have the time and energy to fight for us.
If you are an aunt, uncle, cousin, or friend to someone with ME you are truly our best hope of change. Please do not feel afraid to step up and take action to tell our governments and communities about the massive need faced by ME patients worldwide.
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Summary
In short, while global coordination and research is essential, taking direct actions using your community supports is one of the best ways you can get directly involved beyond ME awareness and into ME Action.
Through a physical fundraiser, local peer support group, direct visits and support to severe patients or working with local councils and government to support housebound and bedbound people in your community there are many ways for our able-bodied allies to move beyond the digital world and help us bring our movement into physical space.
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Happy ME Awareness Day 2022.
Today is the day that people all over the world are raising awareness for Myalgic Encephalomyelitis aka ME or MECFS.
MECFS is a severe post-viral neuroimmune Chronic Illness with no FDA-approved treatments and no cure. Only 5% of persons with ME recover.
Severe ME is often described as living death and yet patients are often medically neglected due to their inability to travel to a doctor.
Research is extremely underfunded and necessary to improve long-term outcomes for patient with ME.
With such a bleak situation this day can often feel depressing. So I wanted to highlight some Direct Action you can do to get involved in ME Activism.
While political action is essential and necessary to make long-term change in this disease and I highly recommend signing petitions or participating in letter-writing campaigns, this post focuses on smaller local actions that you can do right now and that will have an immediate effect on the people around you.
A large part of this is bringing local community care to patients. Even so called Mild ME is a severe illness and severe ME can be life-threatening. Just as we treat severe diseases like cancer as a massive burden and one we have a responsibility to care for the patients of, we must also adopt this mindset with ME. This means creating local peer support groups, offering to deliver meals or help with housework, telling our stories in local media, and supporting small local organizations that can work directly with the local medical community.
I also stress that these actions are needed not just in this month, but on an ongoing basis. I encourage our healthy allies to focus on a small action they can do repeatedly, like offering to drive a patient to their GP, or bringing over a simple meal with plenty of leftovers once a month. Work with your social network and neighbors to build resilient support networks. Avoid burning yourself out or doing more than you are able.
Direct action is all about doing what you can right now. Millions Missing with ME have lived in the shadows for years or decades, now there are Millions More with LongCovid. Please help shine a light on us.
