M.E. Advocacy, What You Can Do

If I can ask one thing of you, it's to become an advocate. People with M.E. do their best to advocate for themselves, but it can be difficult with limited energy. So if you want to help, here are some things you can do.

Continue to learn about Myalgic Encephalomyelitis as well as Long COVID. That will help you to discuss it with others. Share the knowledge.

Believe friends and family who tell you their experiences with M.E. I've heard so many stories of people who don't have support. Sick people shouldn't have to fight to be believed. I'm so lucky that my husband believes, trusts, and supports me. People who have M.E. will know the most about it due to lived experience. In many cases we know more about it than doctors because medical schools just don't teach med students about M.E.

If you happen to be a medical professional, please learn about M.E. If you know medical professionals, encourage them to learn about it. Encourage them to look up the latest information about it, and not assume that it's a psychological illness just because it's an invisible illness. My own GP didn't know anything about M.E. before I was diagnosed, and she's learned a lot about it in the meantime.

Encourage politicians to push for more funding for research. Nearly every country has an M.E. advocacy organisation, support them if you can. Currently M.E. is diagnosed if you fit certain criteria. If it could be tested for instead, that would go a long way toward getting additional funding and finding a cure.

Finally, if you become chronically ill, don't give up. It can take years to find the right doctor with the right expertise to make a diagnosis. You might hit a lot of dead ends. If the first 9 doctors don't believe you, push to see the 10th. Trust yourself more than those doctors. You know your body better than anyone, you are the expert.

Advocacy doesn't need to be a full time job, even though it can be. Just raising awareness can help. If people with 5-50% of your energy can do it, I hope you can too.