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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 … 

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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!
http://www.meadvocacy.org/may_12_2017_international_awareness_day_25th_anniversary

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

May12th Awareness Ideas
http://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.
http://mefmaction.com/index.php?option=com_content&view=article&id=215&Itemid=125

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

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

International ME/CFS and Fibromyalgia Awareness Day May 12
http://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

ME/CFS Awareness Month Activities (May 2017)
http://www.irishmecfs.org/events.html

M.E. Support Information, Advice & Support
https://www.mesupport.co.uk/index.php?page=national-international-overseas

EUROPE GEARS UP FOR ITS THIRD #MILLIONSMISSING DAY OF ACTION
http://www.meaction.net/2017/03/15/europe-gears-up-for-its-third-millionsmissing-day-of-action

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

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{ 13 comments… add one }

  • AndyPR May 9, 2017, 6:12 am
    slysaint

    Very concerned that this coincides with 'Mental Health Awareness Week' in the UK.
    This could backfire badly.

    Just replied to a slightly different post here, http://forums.phoenixrising.me/inde…ing-day-of-action-may-2017.49990/#post-847191, that expresses a similar sentiment with this

    From a quick Google, no, it doesn't seem to be new. The organisation behind it dates back to 1949, https://en.wikipedia.org/wiki/Mental_Health_Foundation, and Wikipedia lists themes for the awareness week going back to 1995. Here, https://www.awarenessdays.com/uk/awareness-days-calendar/mental-health-awareness-week-2017-2/, claims "The Mental Health Foundation has hosted Mental Health Awareness Week in the second week of May since 2000."

    So it would seem the two have been coinciding for quite a while.

  • slysaint May 9, 2017, 10:33 am
    AndyPR

    Just replied to a slightly different post here, http://forums.phoenixrising.me/inde…ing-day-of-action-may-2017.49990/#post-847191, that expresses a similar sentiment with this

    So it would seem the two have been coinciding for quite a while.

    The difference is that this year mainstream media are actively promoting it (the Mental Health Awareness) and covering it a lot.
    Interesting about the origin of ME Awareness Week/day :
    "May 12th has been designated as International Awareness Day for Chronic Immunological and Neurological Diseases (CIND) since 1992. The CIND illnesses include Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS), Fibromyalgia (FM), Gulf War Syndrome (GWS) and Multiple Chemical Sensitivity (MCS)."

    http://www.may12th.org/

    eta: as the Mental Health Awareness is getting so much media coverage maybe a message of
    ME is NOT a Mental Illness might be appropriate?

  • MEMum May 9, 2017, 3:45 pm

    See MillionsMissing London Facebook event page.
    Can't get it to copy and paste can anyone more competent help @AndyPR ?

  • concepcion May 9, 2017, 8:02 pm

    The ME/FM Society of BC has sponsored two screenings of "Unrest" at DOXA Documentary Film Festival in Vancouver on 12 & 13 May. The Friday screening is sold out!

    Also for May Awareness, the Society is holding a World Café: Patient Engagement Event in collaboration with the BC Women’s Hospital’s Complex Chronic Diseases Program on 27 May. There will be an online component to allow those unable to come to the event to participate.

    For more details on May Awareness events in Vancouver: http://mefm.bc.ca/may-awareness-celebrated-all-month-long/

  • Vonjones May 10, 2017, 12:11 am

    You can download ME awareness leaflets for the general public, (in larger print with bold and boxes so easy to read), plus the brilliant comic strip showing effects of PEM, so that those going to demos or events could take some to distribute.
    http://Www.mechat.co.uk/db/tips.htm
    I have printed a lot of the above and been giving them to all my carers, delivery people, friends relations, and anyone else I can think of. No-one escapes without! Several have taken not just one of each but a few to distribute, putting in libraries, waiting rooms, shops, churches (where some are having prayers said for Pwme), work or shop notice boards etc.

  • AndyPR May 10, 2017, 2:59 am
    MEMum

    See MillionsMissing London Facebook event page.
    Can't get it to copy and paste can anyone more competent help @AndyPR ?

    Well, as nobody competent has replied then I'll try and help. 😉

    Not totally sure what you are trying to do but anything to do with Facebook doesn't work quite as well with the forum software as, say, YouTube or Twitter, where you can simply use the link to the video or tweet in a post and it will automatically insert the desired material.

    With a Facebook post or event, all you can do is copy and paste any text you want to display here, or taking a screenshot is the other alternative to that. Facebook also doesn't make it easy to share the link to a particular post outside of Facebook itself.

  • MEMum May 10, 2017, 10:12 am

    Hi @AndyPR and everyone else. Thank you, I was just trying to post the link to the London event page.
    https://www.facebook.com/events/414…_plan_mall_activity&notif_id=1494409064420405
    Hopefully I've now done this! Probably too late for brain to operate last night……

  • MEMum May 11, 2017, 7:35 am

    Back OK today, so fingers crossed I'll get there. May even have friend to assist with carrying stuff, as well as my walker which can carry a pretty large load.

    Flyer finished. IOM disease definition and summary of recent biomedical research on one side.
    Other side Summary of Errors on PACE with ref to Virology blog, should prob add link re articles/letters in J Health Psych.

    Large red A3 poster, which may become a wall of bricks:, with some of Pat Js suggestions, plus space for others to add.
    A2 sketch pad to flip over messages every few mins.
    Roll of white paper, just about to transfer your rap onto that….

    Also have a few spare shoes in bag: flip-flops, work- male or female,trainers, so if anyone wants to have their name and message and what they are missing most please msg me or post on here.

    Please pray or whatever, that back survives

  • MEMum May 11, 2017, 10:20 am

    Also have red tinsel wig!

  • dangermouse May 11, 2017, 1:38 pm
    MEMum

    Back OK today, so fingers crossed I'll get there. May even have friend to assist with carrying stuff, as well as my walker which can carry a pretty large load.

    Flyer finished. IOM disease definition and summary of recent biomedical research on one side.
    Other side Summary of Errors on PACE with ref to Virology blog, should prob add link re articles/letters in J Health Psych.

    Large red A3 poster, which may become a wall of bricks:, with some of Pat Js suggestions, plus space for others to add.
    A2 sketch pad to flip over messages every few mins.
    Roll of white paper, just about to transfer your rap onto that….

    Also have a few spare shoes in bag: flip-flops, work- male or female,trainers, so if anyone wants to have their name and message and what they are missing most please msg me or post on here.

    Please pray or whatever, that back survives

    Good luck, big thanks and I hope you're back survives.

  • Maggie21 May 12, 2017, 3:26 am
    MEMum

    Back OK today, so fingers crossed I'll get there. May even have friend to assist with carrying stuff, as well as my walker which can carry a pretty large load.

    Flyer finished. IOM disease definition and summary of recent biomedical research on one side.
    Other side Summary of Errors on PACE with ref to Virology blog, should prob add link re articles/letters in J Health Psych.

    Large red A3 poster, which may become a wall of bricks:, with some of Pat Js suggestions, plus space for others to add.
    A2 sketch pad to flip over messages every few mins.
    Roll of white paper, just about to transfer your rap onto that….

    Also have a few spare shoes in bag: flip-flops, work- male or female,trainers, so if anyone wants to have their name and message and what they are missing most please msg me or post on here.

    Please pray or whatever, that back survives

    Good luck @MEMum, hope back is ok and the day goes well for you.
    Bless you and thank you for giving it a go (even if you don't make it).xx

  • MEMum May 13, 2017, 3:55 am

    Hi, yes it did go well. There are some pictures and video up on the ME Action UK Facebook page. When my daughter is up I will try and put some on here.

    My back survived well, which is pretty amazing. Victoria to Whitehall was like a car park. Birdcage Walk was closed.

    There was a main group with people sitting and standing with excellent banners and surrounded by shoes and posters.
    It definitely got people's attention. I rolled out Pat Js rap and the shoes etc I had taken, then felt it was best to be on the pavement handing out info.

    Most people were happy to look, take info and walk on. Those who wanted to talk more, were interested in US definition, nature of the illness etc. One of the MM people said she was chatting to a guy who really wanted to know more, but as she started to explain about PACE, his eyes began to glaze over…..However he did get the extra info sheet, so hopefully he read that and then could Google for more info.
    The talks provided more information.

    The only person I talked to re the Crawley smear campaign was another Mum, with a son with ME, now teenage.

  • dangermouse May 13, 2017, 3:57 am

    @MEMum :hug: You are a star, thank you so much for doing that.