May 12 - International ME/CFS, Lyme, and FM Awareness Day Events

This post first appeared on ProHealth.

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 #may12 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. Big Sleep in the UK is raising money for research to find a cure.

EVENTS

Here are some of the activities scheduled for the week of May 12-18, 2015. (Some events are scheduled for the days prior.)

You can see a full list of events (worldwide) HERE.

You can view an updated roster of events HERE.

INTERNATIONAL

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!” To see all the places that are lighting up May 12th go HERE.

#May12BlogBomb. 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. They’ll ask until Google caves in and does it. Please go to the Facebook page

FIBRO FLARE: “Aunty Acid has agreed to promote International Fibromyalgia Awareness Day on May the 12th!

For anyone who may not be aware of Auntie Acid, visit her page https://www.facebook.com/auntyacid


Please also notice it has 7.1 million likes worldwide.

This is a huge victory for Fibro awareness as it reaches so many people.

They have also been a huge supporter of Autism awareness!

We at the Fibro Team are incredibly excited about this! Thank you Auntie Acid!”

USA

The National FM and Chronic Pain Association lists events in 20 states across the US. Click HERE for a complete list. (Each state has a drop-down menu.)

Haines City, Florida has proclaimed May 12th Fibromyalgia and Chronic Fatigue Syndrome Awareness Day.

Newark, NJ mayor Ras Baraka has proclaimed May 12 “Fibromyalgia Awareness Day.”

New York City. The Caterpillar Walk program is a fundraising campaign designed to raise awareness and support for Fibromyalgia and Chronic Pain. 100% of proceeds raised will support education, advocacy and research efforts. While many walks have taken place across the country to support our work, this is the 1st annual walk in NYC. Our goal is to help bring the Fibromyalgia and Chronic Pain community together. The NYC Caterpillar Walk will take place on Saturday May 9th. Registration: 9:00 am. Where: Hudson River Park (on the river by 23rd Street & West Side Highway). Welcome, Announcements & Awards: 9:45 am. Walk Start: 10:00 am followed by finish line photos, entertainment and an afterparty. Every Walker will receive a T-Shirt and Medal. Due to the generous support of Branded in Brooklyn we can waive the registration for up to 50 walkers. You can find them on facebook or visit their crowd funding page to register HERE.

Danbury, CT. Lyme Conference and Health Fair. Tuesday, May 12, 2015 1:00 pm - 9:30 pm. Location:Western CT State University, West Side Campus Student Center, Danbury, CT. Lyme disease specialist and author Dr. Richard Horowitz is the keynote speaker for our ninth annual Lyme disease patient conference entitled " Lyme Disease: Why Can't We Get Better? From Symptoms to Solutions" This event is free. No registration required.

Ridgefield, CT. 9th Annual Lyme Connection Patient Seminar and Health Fair at WestConn on Tuesday, May 12, 2015. “Lyme Disease: Why Can't We Get Better? From Symptoms to Solutions.” Free and open to the public, the event includes an afternoon integrative medicine workshop from 1 to 4 p.m. with Dr. William Lee Cowden and Eva Sapi, PhD; a Lyme-focused health fair beginning at 6 p.m. and an evening presentation spotlighting the work of Lyme-treating physician and bestselling author Dr. Richard Horowitz at 7 p.m. Lyme Disease Association president Pat Smith will receive the first “Courage in Advocacy Award." The program concludes at 9:30 with questions and answers.

AUSTRALIA

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.


CANADA

Nanaima, BC has proclaimed May 12th Fibromyalgia and Chronic Fatigue Syndrome Awareness Day.

Send an email to your MP. A template can be found here.

Charlottetown, Prince Edward Island City Hall will be lit with all three colors on May 12th.

ME/FM Society of BC. In collaboration with the National ME/FM Action Network and the BC Complex Chronic Diseases Program ME/FM Society of BC will present talks by Dr. Daniel Peterson and Staci Stevens. When: Sunday May 24th, 2015 1:00 pm - 5:00 pm. Doors Open 12:30 pm. Where: Paetzold Lecture Theatre, Jim Pattison Pavillion, Vancouver General Hospital, 799 West 12th Ave, Vancouver. Entry for Members: $10 / Non-Members: $20. Memberships ($25) are available at the door. Space is limited, so please RSVP: 604-878-7707/1-888-353-6322. Please leave a message with your name, phone number and # of tickets.

Langevan Bridge in Calgary, Alberta will light up on May 12th. along with many other places, buildings and spots like the Niagara Falls (will light up blue on May 12th at 10pm It can be watched on either of these 2 webcams HERE or HERE) and the city halls of Mississauga, Ontario; Brampton, Ontario; Ottawa, Ontario; Halifax, Nova Scotia and Toronto, Ontario. The Montreal Olympic Stadium in Quebec will be lit with all colours and the Ontario’s CN Tower in Toronto will be lit with all 3 colours (blue for ME, green for Lyme and purple for fibromyalgia).

Vancouver. Opera Mariposa is bringing audiences a night of musical theatre showstoppers in support of chronic neuro-immune disease awareness. On Saturday, May 16th, sopranos Jacqueline Ko and Robin Eder-Warren, baritenor Kyle Preston Oliver and pianist Chris Feige will present 'Tour de Force,' a Broadway benefit show at Marpole United Church. The performance will honour the International Awareness Week for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Fibromyalgia (ME/CFS & FM), and a portion of every ticket sale will go to the National ME/FM Action Network. Tickets start at $15 and are available at operamariposa.com or from Brown Paper Tickets at 1-800-838-3006.

GERMANY

Join Germany’s May 12 Thunderclap.

HOLLAND

ME/cvs Vereniging is making an appeal to all readers of its facebook and site. Which song or poem or book or film helps you somewhat in hard times? You may explain in a few words why, but it’s not obligated. Sending the link to it suffices. If you are on twitter, please send them a DM, but you can also respond by email: contact@me-cvsvereniging.nl. On May 12 they will publish all tweets using ?#‎12MEi and your first name. They do hope a lot of people will join them again so that they will create a lot of attention for ME!

IRELAND

Newlands Cross. On May 12, at Bewleys’ Hotel, Newlands Cross from 10 AM-12PM, and 1PM-2PM at Leinster House, there will be coffee with guest speakers.

The Irish ME/CFS Association is pleased to announce the following two talks as part of its ME Awareness Month activities in May by Dr. Abhijit Chaudhuri from the UK. The talks will include questions-and-answers sessions. Admission is E5, on the door, to help towards the costs of organising these two meetings, and Dr. Chaudhuri's trip.

• Saturday, May 30: 2:45 pm, Connacht Hotel (formerly Carlton Hotel), Dublin Road, Renmore, Galway City. Hotel tel: 091 381 200. http://theconnacht.ie/ Free parking.

• Sunday, May 31: 11 am, Carlton Hotel Dublin Airport, Old Airport Road,Cloghran (Santry), Dublin Airport, Co. Dublin. Hotel tel: (01) 8667500. E-mail: info.dublin@carlton.ie . Free parking.

Celbridge Co Kildare. From Trisha in Ireland: For International awareness Day May 12th I am having a Tea/Coffee Morning From 9.30 to 12.30 at my home in Celbridge Co Kildare with the kind help of Fionnuala Kelly Monahan. It will be a pop in at a time that suits you feel free bring a cake or buns there will be a cover charge of €5 all money will go directly awareness fund. Everyone will be asked to wear something purple as we will be taking lots of photos.You will be given a Raffle ticket on arrival as my son’s girlfriend Rebecca has kindly Donated a Pandora Jewellery Box as prize to be raffled at 12.30. Please bring a friend neighbour your mum daughter all will be so welcome let's make it the best we can. I will be adding extra boxes of tea and coffee to my shop over next few weeks to make sure everything on the day donated goes to our cause as every cent will make a difference. Why don't you try do the same in your area?

ITALY

AISF ONLUS (the Italian Association for Fibro and CFS) is organizing an event on the 10th of May in Verona.

JAPAN

Thunderclap from Japan

SWEDEN

In Sweden, wear something blue on May 12.

RME's different Facebook pages and groups will be observing 12th May by using a Remember ME header from the 10th of May to the 13th. For more information click HERE.

UK

Walk for ME UK is arranging an international Walk for ME. The idea behind Walk for ME is that friends and family of an ME sufferer do a sponsored walk, run or swim on their behalf, hence the name Walk for ME or Walk for me. Walk for ME has had walkers, runners and swimmers across England, Scotland, Wales, Ireland, the Isle of Man as well as in Spain, New Zealand and both coasts of America and in total has raised over £28,000 including gift aid. Wherever you are, we hope you'll become involved this year! It is hoped that as many friends and loved ones as possible will do a sponsored walk or other sponsored event during ME Awareness week which runs from 11th May to 17th May 2015. See event details HERE.

Afternoon Tea: An afternoon tea will be held in the Tyme Trust's home county of Essex. The event takes place in ME Awareness Week, in the Summer Parlour at Ingatestone Hall, on Monday 11th May, from 2.30-4.30pm. Ingatestone Hall is the ancestral home of Lord Petre, Lord Lieutenant of Essex, who will be addressing our guests. We will be presenting our new ME Awareness publication. You can find out all about the Hall at www.ingatestonehall.com If you would like to attend, please email us as soon as possible on the Contact Us form at www.tymestrust.org. There will be an opportunity to meet our Trustees and volunteers.

Big Sleep for ME: Raising funds for a cure.

May 12th, 2014 - Reports from the San Francisco and Washington, DC Demos

San Francisco, CA - Federal Building/McKesson Plaza

May 12th was an unusually hot day. But that did not deter seventeen demonstrators - patients, friends, and supporters -  from gathering in front of the Federal Building on Seventh Street in San Francisco, where the regional HHS office is headquartered. 

The demonstration was scheduled to begin at noon, and within a few minutes of arriving, the group had set up six wheelchairs, erected banners, held up signs, arranged flowers, and displayed the photos of 11 people whose lives had been taken by ME. Susan Kreutzer passed out blue ribbons that she had made herself, and we pinned them to our clothing.

Nobody needed to be told what to do. The entire group acted in concert, with a smooth efficiency that belied the fact that most of us were strangers to one another.

After a short introductory speech, six of the demonstrators lined up behind the wheelchairs and read aloud the obituaries of those whose portraits were displayed.

While the obituaries were being read, the group stood quietly, listening in silence as the too short lives of these brave individuals were read. The youngest was David, age 17. The oldest was Tom Hennessy, 49, founder of May 12 International ME/CFS Awareness Day and a fierce advocate for patient rights. Tom's picture was displayed in the first wheelchair by itself. Also shown were photos of Allison Hunter (19), Lynn Gilderdale (31), Patrick Kelly (42), Casey Fero (23), Eric Moore (46), Amberlin Wu (29), Sophia Mirza (32), Emily Rose Collingridge (30), and Tracey Ash (26).

Afterwards, I entered the Federal Building with Jane Pannell to deliver two petitions demanding the cancellation of the IOM contract and the immediate adoption of the Canadian Consensus Criteria for ME. The petitions, totaling nearly 10,000 signatures, were given to HHS and to Nancy Pelosi's office, where I spoke with her long-time aide.

• I explained why the IOM contract should be canceled, and gave her the experts' letter as well as a fact sheet with important information about ME/CFS, a request for legislative action to increase funding for scientific research, and a request that the misleading name “chronic fatigue syndrome” be replaced with Myalgic Encephalomyelitis.

Then we packed up, and repeated the demonstration a few blocks away at McKesson Plaza, where Senator Dianne Feinstein's office is located. One quick-thinking member of the group went into the building to fetch Senator Feinstein's aide, who came down to watch the demonstration. We spoke with him about the gravity of the illness, and delivered the two petitions, the experts' letter to Secretary Sebelius calling for the cancellation of the IOM contract, and a 55-page list of people who had died of ME. I handed him a copy of the obituaries the group had read.

Our message was loud and clear: "There are a million of us. We are dying of this disease. We've had 30 years of neglect from HHS, we are citizens, and we vote. It's time our representatives did their jobs and represented us!" 

What was most impressive about the demonstration was the degree to which people were willing to step up to the mat. When I asked, "Who wants to come with me to Nancy Pelosi's office and HHS?" every person there stepped forward. (The guards would only let two people in, unfortunately.) There was no question that if we had been allowed, all 17 of us would have marched into the Federal Building that day.

This may not have been the largest, but it was one of the most inspiring political events I have ever attended.

I want to give my profound thanks to everyone who came, as well as to all those who couldn't attend but expressed their support through donations, or by simply cheering us on. It buoyed us to know that you were all there in spirit.

____________________

Washington, DC - Capitol Building

The Banner of Hope

On the other side of the country, Mary Dimmock was busy setting up a May 12 demonstration at the Capitol Building. This year marks the 30-year anniversary of the Incline Village outbreak that saddled our community with the name "chronic fatigue syndrome"; the theme of the demonstration was "30 Years of Neglect."

Mary and two supporters, Marty Shore and Jim Mills, each of whom has a family member ill with ME/CFS, spread the Banner of Hope on the lawn. The Banner of Hope is a 65-foot long assembly of pillow case tops, each one of which has the name and dates of illness of a person bedridden with ME/CFS.

The Banner provides a moving testament to the toll this disease takes on the people it strikes. The demonstrators also displayed a banner with the portraits and obituaries of people who have died of ME/CFS.Two reporters, one from Televisa's Washington office and one from Medill News Service, came by to cover the event, and to arrange an interview with Mary. As Mary said, "Two leads is a very good thing."

Mary speaks with a reporter

Of the demonstration, Mary said, "There were mostly tourists there that day, but one person took a handout and said, 'I think this is the disease my daughter-in-law has!'

Giving even one person such a valuable piece of information was worth it."

What I Want for My Birthday

It's been a long, hard winter, but May is finally here, and soon I will be a year older. As it happens, this year I am sharing my birthday weekend with mothers  - and with Florence Nightingale.

Normally, I don't ask for anything for my birthday. The older I get, the less I need.

But this year there is something I want.

You.

On the morning of Monday, May 12th I will be heading to the regional HHS headquarters in San Francisco to join a group of fellow demonstrators. We will set up a line of empty wheelchairs in front of the Federal Building at 90 Seventh Street, and we will place photos of people who have died of ME in those chairs. We will pin blue ribbons to our clothing, and hold up banners. Some of us will bring flowers and candles, and others will bring signs. We will deliver petitions to our representatives and to HHS.

At the same time, on the other side of the country, Mary Dimmock will be spreading the Banner of Hope on the lawn across from the Capitol Building in Washington, DC. The Banner is a 65-foot collection of pillow cases, each one made by someone with ME, bearing their name, dates of illness and artistic touches. It is a tribute to all those who have been bedridden by this disease.

If you are in the Bay Area, please join us in San Francisco. Contact: everrillo@yahoo.com

If you are near Washington, join Mary at the Capitol. Contact: mecfsaction@yahoo.com

Watch, Share, Tweet

Most of you who are reading this won't be able to be with us physically. But you can cheer us on, even from a distance. The San Francisco event will be live-streamed and posted on Youtube. You can watch it, and share it. You can tweet about both events.

You can help spread the word by liking the post about this event on my Facebook page. You can reprint this blog post. You can let the world know that Mary, and Susan, and Johannes, and Bobbi, and Erica, and all our friends will be standing there, representing a million people who can't.

Write 

You can write your Senators and Congressmen to let them know that you are ill, that your needs are not being served, and that you vote. Click HERE.

Say something like this:

I am a constituent who is ill with myalgic encephalomyelitis, also known as chronic fatigue syndrome. In spite of affecting over a million people in the US, this is a disease which has gotten very little funding over the past three decades. ME is not a benign disease. It has disabled hundreds of thousands of people in the US, and, in some of the more severe cases, has been fatal. The economic loss is calculated to be $17-23 billion dollars annually. Please ask NIH to allocate more funds to study this illness, and to help find a cure.

You can write a letter to the editor of your local newspaper. Tell them it is May 12th, and explain why this day is important to you.

Join 

You can join these Thunderclaps, and amplify our voices a hundred thousand times over.

Stop the IOM, Adopt the CCC

May 12th International Awareness Day

Tell the world! Today is May 12th International Awareness Day for ME/CFS & FM

Light

You can light a candle, and remember that you are not alone.
_____________________

That is what I want for my birthday.