Thursday, May 12, 2016

This Is It! May 12th International ME/CFS Awareness Day!

A version of this post first appeared on ProHealth.

By Erica Verrillo

International ME/CFS Awareness Day was originated by Tom Hennessy, an ME patient and staunch advocate who testified at numerous national and international ME/CFS conferences and meetings. Tom chose May 12th as ME/CFS Awareness Day to commemorate the birth of the famous nurse, Florence Nightingale, who suffered from an ME/CFS-like illness. May 12 is also International Nurses Day.

Over the years May 12 has been expanded to include other neuro-immune illnesses that share many of the features of ME/CFS. At present May 12 includes Fibromyalgia (FM), Lyme disease, and Multiple Chemical Sensitivity (MCS). All of these illnesses employ May 12 as an opportunity to raise public awareness, to contact representatives for more research, and to promote fund-raising activities.

Although it is not formally recognized in the US, International ME/CFS and FM Awareness Day is observed worldwide.

Simple things you can do:
  • Wear a blue ribbon for ME/CFS, a purple ribbon for FM, or a green ribbon for Lyme disease and MCS.
  • Tweet on May 12. Add #may12th to your tweet.
  • If you have a blog or a Facebook page, post something. It can be as simple as an awareness image.
  • If you have some spare cash, donate to research efforts. Open Medicine Foundation is raising money for their End ME/CFS Project.


Light Up the Night Challenge. “The challenge is to get as many buildings as possible in your country to light up with one of the 3 colours used on May 12th – blue (ME/CFS), purple (FM) or green (Lyme and MCS). We want public buildings/places like City Halls, Niagara Falls and we want individual homes lit up too!” See the Facebook page HERE.

#May12BlogBomb is back! May 12th is Awareness Day for ME, Fibromyalgia, Lyme Disease, Chronic Fatigue Syndrome and Multiple Chemical Sensitivity. Every year bloggers use this opportunity to express their views and to raise the profile of these much misunderstood and often maligned conditions. Blog bomb information is HERE.

Google – Create a Doodle. Every year the doodlers ask Google to create a doodle. This year they are also supporting other events and activities. Please go to their Facebook page HERE.

One week about ME on social media This is where people with ME are asked to share one picture a day about their ME during ME awareness week. Each day has a specific photo topic: smile for ME, your favourite low level activity, something which makes you feel better, get creative with spoons, something you're preparing for, a hand written message to fellow spoonies, you on a good day. There are also a topic to write about each day alongside your photo for example "I wish people without ME would..." The photos are to be shared on social media using the hashtag #1weekaboutME.


#Millionsmissing Virtual Protest – May 25

The #Millionsmissing protest is being organized by ME Action to draw attention to the plight of millions of people with ME/CFS. There are several things you can do to participate in #Milllionsmissing that do not require leaving your home.

1. You can send your shoes to Washington DC.

ME Action is asking patients who are unable to make it to the physical protest locations to please donate one pair of shoes. They will display them at the Washington, DC protest. You can send a pair of old shoes or if it’s difficult to get to the post office, order shoes on Amazon or Ebay and have them shipped directly. During the protest, images of these shoes will be posted to #MEAction’s social media account using the #MillionsMissing hashtag, so patients can see that they are being represented during the demonstration. Shoes cannot be returned. After the protest, they will be donated to a local charity or kept for a future installation.

Fill out this form and and then mail your shoes to: Paige Maxon, P.O. Box 26051, Winston Salem, NC 27114. All shoes must be postmarked by May 10th, 2016!

Send your shoes to London

You can also send shoes to the London protest. Fill out this UK form and mail to: LA Cooper, 25 Grassmead, Thatcham, Berkshire, RG19 4FP (UK)

Better yet – send to BOTH locations  

2. You can also put a pair of shoes at the end of your driveway or your doorstep.

On May 25th, take a pair of shoes (or several) and put them on your doorstep, lawn, or driveway. Take a photo and post it on social media #MillionsMissing. Anyone can participate. You might pair the shoes with a sign that expresses what the empty shoes mean to you. Some examples: “I cannot walk to the end of my driveway” or “My brother should be here.”

3. Use social media

On May 25th, post selfies on social media (Twitter, Facebook, Instagram, etc) – in your bed, home, wheelchair, at work, wherever you live – to help us show online the millions who are missing from the protest. Use the hashtag: #MillionsMissing so that we can aggregate all the photos. You can use #MEAction #mecfs #pwme to help identify your post.

You can hold your own #Missingmillions protest sign with a slogan in your photo. Here are a few examples to get started:
  • Missing my life for 22 years because of ME
  • Missing sufficient research
  • Missing adequate medical care
  • Missing a doctor who believes me
  • Missing college / Missing my family / Missing running in the park
4. Promote #Missingmillions

Promote the hashtag and shoe installation on your social media accounts. Email patients, friends, families, allies who are in the vicinity of the satellite protests

5. If you are in the US, send an informational packet to your representatives

Send this Forgotten Plague Congressional Pack to your congressmen/women and state representatives before the protest.

Find your congressional representative here:

Find your Senator here:

Detroit, Michigan

New organization FIND (Foundation for Immunological and Neurological Diseases) will be hosting an
ME/CFS Awareness Walk 2016 - May 14, in Troy, Michigan (Detroit area), contact Frank Plizga -

The walk is from noon to 1 pm. So there are 5 confirmed walkers and 5 conditional. There will be balloons, signs and passouts.


Undies on the Outside Challenge

Help raise funds for OMF's End ME/CFS Project! WHY UNDIES ON THE OUTSIDE? Because superheroes wear their undies on the outside, and you have to be a superhero to live with this disease! Wearing underwear on the outside symbolizes bringing an invisible illness, which is usually hidden away, out into the open.


The Do Something for ME project is designed to raise awareness in the general community about ME/CFS and to raise funds to support Emerge Australia to continue its work advocating for, educating about and providing information on the condition.


Walk for ME is a 5 km Charity Walk to raise Awareness and Funding for biomedical research into M.E. (Myalgic Encephalomyelitis) at the beautiful Belevedere House & Gardens. All proceeds going directly to the charity "Invest In ME" for biomedical research into M.E. “We're not strict on people finishing the full 5 km, if they're not able. A person can undertake any amount of distance.” For more information go HERE.

The Irish ME/CFS Association is pleased to announce that it has arranged for four free screenings of the documentary on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Forgotten Plague, in various venues around Ireland during May, ME/CFS Awareness Month: 

- Limerick: South Court Hotel. Thurs, May 5. 11:30 AM. 

- Galway: Maldron Hotel, Headford Road. Thurs, May 12. 7.30pm 

- Dundalk: An Táin Theatre, Crowe Street. Tues, May 17. 2 PM. 

- Dublin: Crowne Plaza Dublin Blanchardstown. Sunday, May 29. 3 PM. 

These are the first public screenings of the documentary in Ireland. 

All are welcome. Further details are available on the Association’s website


Please come support our #MillionsMissing UK Protest in London!

When: Wed. May 25th, 2016 12 PM – 2PM

Where: Department of Health Richmond House

79 Whitehall, London SW1A 2NS, United Kingdom

Be a part of the #MillionsMissing international day of protest, by attending #MillionsMissing UK, either physically or virtually. Come stand for the millions of severely ill patients living with this ME/CFS who are missing out on every day life. Whether you’re a patient, healthy ally or someone just learning of this disease, everyone is welcome to join in the fight for more funding for research and education.

To be at the protest in London, we suggest you bring a blanket, pillow, mobility scooter, or wheelchair to be as comfortable as possible. Consider wearing duct tape, with #MillionsMissing written across to represent this silent epidemic.

To particiapte virtually, please send shoes to the #MillionsMissing DC Protest or the #MillionsMissing UK Protest. To send shoes to the UK Protest, please mail to: 25 Grassmead, Thatcham, Berkshire, RG19 4FP (UK) 

Email L.A. Cooper with any questions at


Blue Sunday

When: May 15

Where: UK

Blue Sunday is an event which has been going on for several years. Anna, the organiser invites you to have a coffee morning with your friends and family in aid of the ME Association. Guests are asked to bring the amount of money they would normally expect to pay for tea and cake as a donation. You can also take part in the national movement online, by joining in virtually! Here is a link to a blog post where Anna talks about the event in more detail, and here is a link to the online event, for those who are unable to attend an event or host their own. Here is a fundraising page, where you can join the team, or donate to a member of the team! You can read about the history of the event here.


Go blue for ME

This is organized by the ME Association, as blue is the color for ME awareness the public are encouraged to dress up in blue, or do something related to the color blue for ME awareness day which is the 12th of may, or for ME awareness week which is the 9th-15th of May. Share your blue antics on social media using the hashtags #GoBLUEME, #MEawareness or #MEawarenessweek! See the image below for more details.

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