May 12, 2017, Is International ME/CFS and FM Awareness Day

International ME/CFS and FM Awareness Day is May 12th, 2017. Jody Smith shares some information about upcoming events and ways you can be heard …

Can you believe it’s been 25 years since Thomas Hennessy, Jr., chose May 12th to be our international awareness day? He was influenced by the fact that May 12th was also Florence Nightingale’s birthday. This famous English army nurse played a role in the creation of the Red Cross and originated the first school of nursing in the world.

She also had a debilitating, unnamed chronic illness which left her bedridden for the last 50 years of her life. We can relate to her. Tom had all this in mind when he picked that date for us.

Outside of our own community, we are largely ignored. The media, the medical community, with few exceptions act as if we don’t exist. That leaves it up to us to raise our voices in an ongoing attempt to get some attention here. This awareness day belongs to several other illnesses as well but my focus will be solely on ME/CFS, because we just don’t get the press.

Historically, it has been pretty much up to us, the patients, to raise awareness about our disease. I started writing about this illness eight years ago, and this lack of coverage that we experience now isn’t new. It’s been this way all along.

I’ve been sick for 25 years this past March. Yet I know I am one of the lucky ones. I am able to function as a dull-normal in my daily life. To the casual observer I would seem like someone who is moderately intelligent with low motivation. In reality I am living with a chronic condition that routinely saps my energy and dulls my cognitive powers.

This is so much better than the lives of many of our sick brothers and sisters. Many of them are trapped in their homes, some unable to get out of their beds. And then there are the people who have no home anymore.

Nobody knows how many of these desperately ill people are out there. They are not seen. They are not heard. They’ve disappeared from their communities, and many of them have been forgotten by the people who used to be part of their lives.

#MillionsMissing began with a protest in Washington D.C. in May 2016. Activists in eleven other cities around the world joined in. In the fall of 2016, 25 cities in 14 countries held rallies and protests to raise awareness. People at home set out empty shoes and shared photos of them online. The hashtag #millionsmissing made its mark on social media.

The people who participate in May 12th events will often pay a stiff price afterward. Many of them will be in pain, bedridden and exhausted. They know going into this that they may crash good and hard later. But it’s worth it to them. In order to raise awareness about this scourge, they are willing to pay. They are heroes.

We need to be heard. People need to remember that we exist and that we are suffering. There are some things we can do to raise public awareness.

Australia

Join the Thunderclap.

Participate in Australia’s virtual #MillionsMissing campaign. You can #putoutyourshoes to represent the millions of patients around the world who are missing from their lives.

Click here for the Australian #MillionsMissing thunderclap.

Check out these #MillionsMissing events:
Sydney
Brisbane
Virtual

May12th.org.au and its Facebook page are offering information on ME/CFS and May12th. Read up on ways to take part online. These buildings around Australia will be lit blue for Light Up the Night this year.

This Australian May 12th website has details of more events around the country and photos of the Light Up the Night buildings.

Canada

Niagara Falls will light up blue for five minutes on May 12th, 2017 at 10 p.m. See it on this webcam. Check out the illumination schedule here.

Brechin, Ontario will have awareness ribbons dressing up their main street. The Ramara libraries will also be decorated with ribbons.

Opera Mariposa will hold a musical theater concert on Saturday, May 13th.

Edmonton, Alberta will turn the blue lights up on the High-Level Bridge at dusk on May 12, 2017. The M.E. Society of Edmonton will be honoring Awareness Day on Saturday, May 13, 2017. A 17-minute video “What happens when you have a disease doctors can’t diagnose,” by Jennifer Brea will be shown.

Mississauga City Hall, Ontario will light up the night on May 12th.

The Civic Centre clock tower in Mississauga will be lit purple from 8 p.m. on May 12th.

A May 12th event will be hosted by Dr. Eleanor Stein in June 2017. The webcast will be on the topic “Disability Support: Eligibility and how to apply.”

Dr. Patrick McGowan will be presenting his recently released paper on “Epigenitics and ME/CFSAction.” CIND is will be hosting a webinar for it. Dr. McGowan will talk about Epigenetics in ME and FM and will answer people’s questions. Register here.

Ireland

Dr. Rosamund Vallings will be coming from New Zealand to to give three talks about ME/CFS. She has 50 years experience with ME/CFS.

She will be speaking in Galway on Wednesday, May 24, 2017 at 7:30 p.m. This will be at the Maldron Hotel on Sandy Road. Telephone: 091 513200. There will be free parking.

Dr. Vallings will also speak in Limerick on Friday, May 26, 2017 at 11:30 a.m. This will be at the Great National South Court Hotel, Raheen Roundabout. Telephone: 061 487487. There are 400 free car parking spaces

She will appear in Dublin on Sunday, May 28, 2017 at 2:30 p.m. This will be at the Maldron Hotel Dublin Airport. Telephone: 01 808 0500. You can park for €5. Gget your ticket ratified at reception.

CEO and President of the Open Medicine Foundation Linda Tannenbaum will also be speaking at the Dublin meeting.

U.S.A.

There will be a #Millions Missing protest at Houston City Hall from May 11-13, 2017. The building will be lit up with blue for ME/CFS, purple for fibromyalgia and yellow for Gulf War illnesses.

If you live in the United States, here are some things you can do:

Those in the United States can contact their congressional reps.

Find your representatives here.

Support lobbying efforts and the protest scheduled for the U.S. Department of Justice by TruthCures in Washington, D.C. from June 5-9, 2017. Learn more here.

Anywhere Around the World

Make a request for a proclamation of local or state officials, or both.

Post free events in your local newspaper’s calendar.

Call television and radio stations to promote awareness.

Ask local venues to “light up the night” or the month of May. You can light up your own home with blue for ME/CFS, purple for fibromyalgia or green for multiple chemical sensitivies or Lyme disease. Send a picture of it by May 31st to LightUpTheNight@may12th.org if you light up your own home.

Anyone who has internet access and the ability to type can write blogs, or share blogs written by others who are sick.

Add a profile overlay to your social media profiles.

Make T-shirts with a May 12 logo. Click on this link to find out how.

I’m sure I have missed some events around the world. Please add anything you know about in the Comments section below.

May 12th is almost here. But don’t worry, raising awareness can be done all year round. We can all be advocates, for ourselves and others who are ill. We’ve been calling out for years now and it can seem like nothing has changed. Nevertheless we will persist. The world is going to have to hear our voices.

Further Reading:

May 12, 2017 International Awareness Day- 25th Anniversary!
https://www.meadvocacy.org/may_12_2017_international_awareness_day_25th_anniversary

Join Us on May 12th!
https://www.may12th.org

May12th Awareness Ideas
https://www.may12th.org/pdf/May12th-Awareness-Ideas.pdf

May12th ME/CFS Awareness AU
https://www.thunderclap.it/en/projects/56741-may12th-me-cfs-awareness-au

May 12 ME/CFS FM Awareness Day Celebrates 25 Years
https://www.york-me-community.org/may-12-mecfs-fm-awareness-day-celebrates-25-years

Canadian consensus document or the shorter Overview versions.
https://mefmaction.com/index.php?option=com_content&view=article&id=215&Itemid=125

Myalgic Encephalomyelitis
https://www.may12th.org/illnesses/me

International CFS/ME Awareness Day 2017
https://www.whathealth.com/awareness/event/internationalcfsmeawarenessday.html

International ME/CFS and Fibromyalgia Awareness Day May 12
https://solvecfs.org/international-mecfs-and-fibromyalgia-awareness-day-may-12

Light Up the Night Challenge
https://www.facebook.com/events/1091121300980705

May 12th Awareness Events in 2017
https://docs.google.com/document/d/18_89C2UgsdbxepWto61VnpVS2pW9gL0dZhF0rgFe3Kk/edit