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Wisdom 4 ME |
ME/CFS News & Advocacy |
Source: The Fear in My Doctor’s Eyes – Anil van der Zee“ME patients are often described as difficult and hateful. We’ve seen social science researchers complain in the media about personal attacks. Now besides the fact that I can imagine it’s not easy to get continuous criticism on your work, we are talking about valid criticism on flawed science and the scientist, not the person.”
‘See ME’ is a cover of the song Chasing Cars by Snow Patrol. The lyrics have been adjusted to reflect the lives of people suffering from ME/CFS. Many have become bed or housebound and live an isolated life between four walls. This song is to commemorate the millions missing who have disappeared from public life because of ME/CFS.
Created by Belgian artist Robin De Man and his son Seppe.
Living with all the pain, the exhaustion and over 200 miserable symptoms 24/7 — 365 days a year, many times we only see our weaknesses. We see what we can’t do and what we’re missing out on. Living with these numerous symptoms could certainly be considered to require superhuman powers.
Source: A Message for Chronic Illness Superheroes – Prohealth
Christina Baltais created some artistic collages for May 12th ME/CFS awareness day. Lives Capsized – “ME/CFS can strike any age, gender (most commonly affects women), and ethnicity (people of colour more likely to be affected). It can take down even the strongest and most robust in our communities. It’s a disease that does not discriminate; overturning the lives of millions and their families worldwide.”
Source: Using Art to Bring Visibility to Myalgic Encephalomyelitis | The Mighty
May is ME/CFS awareness month, be sure to check out the #MillionsMissing hashtag to learn about virtual events in the coming weeks.
Source: #MillionsMissing – Twitter
Belle and Sebastian artfully layers music with lyrics from fans on their thoughts and feelings about being quarantined at home alone to create an inspired song they call Protecting the Hive. The first release from this series is narrated by bandleader and OMF Ambassador Stuart Murdoch and friend Alessandra Lupo, set to an aerial view of Glasgow in its current lockdown state, shot by Kenny MacLeod.
Presented by Solve ME on April 20, 2020, this online education workshop includes a conversation between legal and medical experts in the field as they share their advice on applying, appealing, and documenting your case for disability insurance with ME/CFS. Board Certified Patient Advocate, Sharon Stevenson, DVM, PhD, moderates with roundtable speakers: Lucinda Bateman, MD (Bateman Horne Center), Christopher Snell, PhD (Workwell Foundation) and Moselle C. Leland (Law Offices of Judith S. Leland).
Hillenbrand, who lives in Oregon, discussed her ongoing experience with coronavirus. “Your airways are so dramatically inflamed that your lungs get stiff and they can’t accept much oxygen. And they start basically closing themselves off.” She described it as, “like I was breathing through gauze”
“I’ve had ME/CFS for 13 years and have never said anything about it publicly. Everything that’s happening now made me want to say something about it — and about the people who were housebound long before COVID19” – Sarah Sweet
Source: I’ve been self-isolating (more or less) for 13 years. Here’s some advice | TVO.org
MEAction has put together a great COVID-19 resources page. This curated page is updated as new information becomes available.
Source: Covid-19 – #MEAction