Our Community will Not Suffer Stigma and Distortion

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Last week was a difficult time for the ME community as we watched a few journalists deride and dismiss the medical concerns of an entire patient population: us, our friends, our families. Reuters is responsible for gaslighting millions of suffering people around the world.  

#MEAction has emailed a version of this letter to every journalist and editor who published an article stigmatizing people with ME. We encourage the community to reach out to journalists and editors as well, focusing on the narrative outlined in our letter. It goes without saying that we also urge our community to remain calm and factual in responses, and to avoid ad hominem language.

We have encouraged the community not to engage this toxic narrative online, which would give this false, damaging narrative oxygen and attention by sharing it across social media. This strategy was proposed after conversation over several weeks with staff and a team of volunteers from #MEAction UK as we knew that a negative article about the ME community was imminent. At the same time, we encouraged people to comment below the articles drawing on points from our letter.

We are also encouraging the community to share on social media the many projects of scientists and people with ME, including research focused on epidemiology, etiology, and treatment at Harvard, Stanford, Cornell and Columbia with all-star scientific teams. Share information and stories about the UK Biobank so that people can see the good work being done in the UK. Share stories about the NIH’s new Collaborative Centers for research. Share good articles about PACE’s flaws, but also about the very real progress we’re making in understanding the science of myalgic encephalomyelitis. Watch and share tweets about the Emerge Australia Conference going on right now. And use the hashtag #ShareGoodScience so that others can find what you recommend.  Read more about ME research here.

Logic and compassion will ultimately win the day, but our lives and the lives of those we love are being affected right now. This is not the first time poorly-designed science has caused major damage: it took the Lancet 12 years to retract the paper supporting a link between autism and the MMR vaccine.

The fight is far from over, but the desperation of this latest attack is a sign that good science is winning. These articles were released just as Denmark’s Parliament unanimously voted to place ME firmly into the neurological category.

As we’ve seen from the UK Parliament and Denmark Parliament in the past few months, we are moving away from the false and damaging view that ME can be reversed by forcing patients to exercise or to think differently.

#MEAction will continue to fight for recognition of ME as a multi-systemic disease that requires rigorous biomedical research.

We encourage everyone in the community to take good care of yourself during this difficult time, and know that you are not alone in this fight. Keep in mind that other people with ME have all had a challenging week. Let’s do our best to support each other, now and always.

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