See ME – Awareness Day Music Video

‘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.

Using Art to Bring Visibility to ME/CFS

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

How to Navigate Disability Insurance with ME/CFS

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).

Solve ME Advocacy Week 2020 Congressional Education Video

Solve ME announced: “In our new digital format, we’ve created a video to replace our printed congressional educational materials. Share this video with your Representatives to inform them of important ME/CFS needs.”

Share this video with your local state representatives this week and help make a difference!

Little Known Rules Make Disability Claims in Japan a Challenge.

Until three or four years ago conditions like ME/CFS or Fibromyalgia were not recognized by the rules governing disability in Japan. It is a little known fact that the date of the first doctors visit can be the onset date, even if there was not a clear diagnosis for the disability. Even though the disability rules have changed in Japan, people with an ME/CFS diagnosis are still at a disadvantage. Like in the US, being aware of the nuances of the rules is the only way to even the odds.

Source: 【FP解説】年金の「知らないと損!」 病名の確定診断日が初診日?(ファイナンシャルフィールド) – Yahoo!ニュース

People with ME/CFS Share What it’s Really Like

ME/CFS patients in the UK share their stories. A survey in the UK carried out by the ME Association in 2016 found that 46% of patients thought that the care provided by their GP for CFS was “poor” or “dreadful.” Some 18% had no contact with their GP at all as they found they made their illness worse by not taking them seriously.

Source: People with Chronic Fatigue Syndrome/ME share what it’s really like – Insider