International Awareness Day, May 12th 2013: Worldwide Protests and Events

May 10, 2013

Mark takes a look at what’s going on around the world this weekend to mark International Awareness Day

Awareness Day RibbonsMay 12th is International Awareness Day for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Awareness Day events also recognize Fibromyalgia (FM), Multiple Chemical Sensitivities (MCS), Gulf War Syndrome (GWS), Lyme Disease, and other chronic neuro-endocrine-immune diseases (NEIDs). Awareness Week runs from May 12th-18th, and the whole of May is Awareness Month. As with many awareness campaigns, ribbons are worn to show support for the campaign – blue for ME/CFS, purple for FM, and green for MCS.

A multitude of Awareness and Fundraising events are taking place this weekend, all across the real and virtual worlds, so I’ve been trawling the web to find out what’s going on. I found an incredible range of events – educational walks and fun runs; a gala fundraising concert in Vancouver, Canada; Sleepathons and Virtual Discos on Facebook; talks featuring Drs Bateman, Kogelnik and Vallings (the Bateman and Kogelnik talks will be webcast)…and just when you thought you’d seen it all, Bob Miller is Skydiving to raise money for Simarron Research, and you can watch live on the internet as the Niagara Falls is illuminated in blue to represent ME and in purple to represent Fibromyalgia!

In the UK, the major event is the ‘All Fall Down for M.E.’ protest outside parliament; there are also over 50 Lyme Disease Awareness Protests in more than 25 countries. I’ve listed all the major events I could find below – if I’ve missed something significant, please add your comments to this article and I’ll add your event to the list.

How to Get Involved

Clark Ellis has written a good article on ProHealth summarising the history of ME Awareness Day (founded by Tom Hennessey in the early 1990s in commemoration of Florence Nightingale’s birthday), and exploring where you can go for information and how to get involved, so I won’t duplicate that here…but I’ll just offer a few general thoughts and ideas to get you started…

  • You don’t have to leave the house to get involved. You can ‘Like’ the pages of ME/CFS and FM organizations, change your profile pictures to the ME/CFS blue ribbon (just search google for ‘ME/CFS blue ribbon’ or check out the ME Awareness Words and Pictures using the link below), upload a video of yourself to YouTube, or simply email your friends asking them to donate to your favourite ME/CFS charity.
  • Don’t forget the ‘real world’! Letters to the local press, or your local and national government representatives, can reach a wider audience who may not stumble across the online campaigns. There are some great ideas from FM/CFS/ME Resources; see the link below.
  • If you’re thinking of organizing an event or demonstration, check out Rivka’s guide first (under Resources below).
  • Whatever you’re doing, don’t forget to ask for money as well. Awareness is all-important, of course, but if you’re talking to the public, make sure you also recommend your favourite charity or non-profit – ideally an organization that funds biomedical research (as well as Phoenix Rising, of course!). Offer people a way to make a positive contribution.
  • Remember that ME Awareness lasts for the whole of May, and you can campaign and fundraise whenever you like: if you’re out of time to do something for the 12th, you can still do it later, when you have time and energy.
  • Above all, make it fun! Whatever you do, it will be more successful if you enjoy it!

 

Resources

ME Awareness MonthME Awareness: Words and Pictures

CFS Nova: Awareness Products

FM/CFS/ME Resources: Awareness and Advocacy Tips

CFIDS Association of America (CAA): Ideas for Support Group Awareness Activities

CFIDS Association of America (CAA): Awareness Day 2012 Information Packet

“How to” guide for ME/CFS demonstrations (by Rivka Solomon)

 

Events Calendars

MECFSFM AwarenessMay 12th Awareness Facebook Page

https://www.facebook.com/may12th.awareness

The May 12th Facebook group encourages you to promote your awareness day activities by sharing on their Facebook page. Over 10,000 Likes, and a great source of information on ME/CFS and FM Awareness events.

MEA Events Calendar

http://www.meassociation.org.uk/?page_id=1358

The ME Association’s calendar lists various Awareness Day events across the UK, including the reMEmber ME Awareness Day Conference in West Sussex on May 11 with Dr Bansal speaking; a day of live music in Maryport, Cumbria; National ‘Wear Your PJs with Pride Day’; and 5 runners in the Sheffield Half Marathon raising money for the MEA.

National Fibromyalgia and Chronic Pain Association: Awareness Day Events

http://www.fmcpaware.org/

The NFMCPA lists Awareness Day events throughout the world, with interactive maps showing events by country and state by state in the US.

 

Protests and Demonstrations

All Fall Down For M.E.

ME a living deathWhere: Opposite Houses of Parliament, London UK

When: 2.30 for 3pm, Sunday May 12th

Web: http://www.me-alivingdeath.org.uk/meawarenessevent.html

Facebook: https://www.facebook.com/events/325645887538120/

 A cross-charity event organized by parents of children with M.E. and London M.E. Support Groups. At 3pm, the participants will all ‘fall down’ and lie silent and still for 2 minutes, ‘to represent the brain/body collapse and pain our loved ones have to suffer day in day out, year in year out, with no end in sight’.

If you want to run a similar event in your local area, send them the exact location and time and they’ll provide a modified version of their promotional flyer: See here for details.

Worldwide Lyme Disease Awareness Protest

Where: Over 50 protests and events in over 25 countries

When: May 10-11

Web: http://worldwidelymeprotestaustralia.weebly.com/index.html

Facebook (Worldwide): www.facebook.com/worldwidelymeprotest?fref=ts_

Facebook (US): https://www.facebook.com/pages/Worldwide-Lyme-Protest-US/111527755675190?fref=ts

International Facebook links: http://worldwidelymeprotestaustralia.weebly.com/countries-involved.htm

 

Webcasts and Speaker Events

ME/FM/MCS International Awareness Day Speaker Event (Webcast)

Where: Calgary, Alberta, Canada

When: May 12

Web: http://eleanorsteinmd.ca/news/

Flyer: http://eleanorsteinmd.ca/wp-content/uploads/downloads/2013/04/May-12th-Poster-Final.docx.pdf

Speaker Information: http://eleanorsteinmd.ca/wp-content/uploads/downloads/2013/04/May-12th-speaker-information.pdf

Dr Eleanor Stein presents a live webcast Speaker Event, featuring Dr. Lucinda Bateman MD, Janet Sperling MSc, and Dr. Andreas Kogelnik MD. To join the webinar use the following link. When the login page comes up, select Guest and then enter your name in the space provided. http://prowebinars.adobeconnect.com/r19eynpq2ys/

You can test your computer’s setup in advance (recommended) by using the following link:
http://prowebinars.adobeconnect.com/common/help/en/support/meeting_test.htm 

Dr. Rosamund Vallings Talks

Where: Limerick, Galway, Carrick-on-Shannon, Dublin, Ireland

When: May 21-25

Web: http://www.irishmecfs.org/events.html

The Irish ME/CFS Association present four talks by Dr. Ros Vallings from New Zealand.

 

Fundraising and Awareness Events

Bob Miller Skydives for ME/CFS Research

jump4meshiryIIWhere: Lodi, California, USA

When: May 12

Web: http://www.cortjohnson.org/blog/2013/05/09/skydiving-for-mecfs-bob-miller-to-jump/

Facebook: https://www.facebook.com/events/450715818354748/

Bob Miller will be “Jump-N-4-ME” to raise awareness for ME/CFS and to raise funds for Simarron Research. Those donating $25 or more will receive a t-shirt to commemorate the event.

Niagara Falls Goes Blue

Where: Niagara Falls, Canada

When: May 12, 9:45 to 10:00 PM EST

Web: http://www.niagaraparks.com/attractions/falls-illumination.html

Live Webcam: http://www.niagarafallslive.com/Niagara_Falls_Webcam.htm

The May 12th ME/FM Facebook page team have arranged to have Niagara Falls lit up with ME/FM colours. The Niagara Parks Commission of Niagara Falls Canada has confirmed that Niagara Falls will be illuminated in blue from 9:45 to 10:00 PM EST representing Myalgic Encephalomyelitis, and illuminated in purple from 10:15 to 10:30PM EST representing Fibromyalgia. The event can be watched live on the falls webcam.

Going Blue for M.E. – ME/CFS Educational Fun Run

Where: Melbourne University, Victoria, Australia

When: May 14

Web: http://www.mecfs-vic.org.au/melbourne-uni-going-blue-me-tuesday-14th-may-115pm-215pm

Flyer: http://www.mecfs-vic.org.au/sites/www.mecfs-vic.org.au/files/ME_CFS%20Fun%20Run%20Flyer%20.pdf

Medical, Physio and Allied Health students and lecturers take part in a fun run/walk around 6 stations learning about ME: Ability/Disability rating scale, Symptoms, Testing maximum heart rate v person with ME/CFS, Observing brain Images with ME, and Learning about diagnostic criteria for ME.

Walk for ME

WalkforMEWhere: Anywhere

When: ME Awareness Week, or any other time

Web: http://walkforme.co.uk/

Details: http://walkforme.co.uk/how.html

The idea of Walk for ME is that friends, family and loved ones of an ME sufferer do a sponsored walk on their behalf to raise funds for biomedical research. The website provides instructions on how to use JustGiving.com to set up your ‘personal challenge’, select your charity, and join the Walk for ME team fundraising target. Walk for ME is raising funds for UK charities ME Research UK and Invest in ME.

Opera Mariposa: “The Singer”

Where: Vancouver, Canada

When: May 12

Web: http://operamariposa.com/schedule

Gala fundraising concert in honour of International Awareness Day for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome & Fibromyalgia, with 100% of ticket sales going to the BC Women’s Hospital Foundation in support of the Complex Chronic Disease Program.

 

Facebook and Internet Events and Campaigns

The Big Sleep for ME

BigSleepTShirtWhere: Facebook

When: May

Facebook: https://www.facebook.com/TheBigSleepForMe

Fundraising and Awareness Event organised in support of Invest in ME’s Centre of Excellence for ME. Featuring a Sleepathon, Virtual Disco (May 11), How many Bears? competition, poems from the Big Sleep Bard, relaxing music, PJ Day, Big Sleep Walk for ME, and more.

Action for M.E.: Speaking up for M.E.

Where: UK

When: By May 22 at the latest

Web: http://www.actionforme.org.uk/get-involved/raise-awareness/speaking-up-for-me.htm

Action for M.E. are inviting patients, carers, friends and family members to speak up about M.E. by contributing a film clip for their M.E Awareness Month film, to be screened online in May and beyond. Film a clip of yourself starting with your name and the phrase “I’m speaking up for M.E. because…”, and email it to Joe at Action for M.E.

Google Doodle 4 May 12th

Google DoodleWhere: Facebook

When: Any time

Facebook: https://www.facebook.com/GoogleDoodle4May12th

Visit the Google 4 Doodle page and click the ‘like’ button: the target is to reach 10,000 likes to ask Google to create a doodle for May 12th, 2014.

May12.org: Neuroimmune & Autoimmune Diseases International Awareness Day

Where: Facebook

When: May 10-12

Web: http://www.may12.org/home.aspx

Facebook: https://www.facebook.com/events/409980979075215/

Facebook Event for all Chronic Immunological and Neurological Diseases. Web page has a good list of ideas on how to promote Awareness Day.

 

 

 

Support Phoenix Rising

Phoenix Rising is a registered 501 c.(3) non profit.  We support ME/CFS and NEID patients through rigorous reporting, reliable information, effective advocacy and the provision of online services which empower patients and help them to cope with their isolation.

There are many ways you can help Phoenix Rising to continue its work. You can even donate significant sums, at no cost to yourself, as you shop online! To find out more, visit Phoenix Rising’s Donate page by clicking the button below.

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21 comments

{ 21 comments… read them below or add one }

snowathlete May 10, 2013 at 5:09 pm

Thanks Mark – really handy to have all those resources listed in one place!

May12th May 10, 2013 at 8:40 pm

The May 12th ME/FM Facebook page team have arranged to have Niagara Falls lit up with ME/FM colours.

The Niagara Parks Commission of Niagara Falls Canada has confirmed that Niagara Falls will be illuminated in blue from 9:45 to 10:00 PM EST representing Myalgic Encephalomyelitis. They have also confirmed that Niagara Falls will be illuminated in purple from 10:15 to 10:30PM EST representing Fibromyalgia. (http://www.niagaraparks.com/attractions/falls-illumination.html )

This event can be watched on the falls webcam at:

http://www.niagarafallslive.com/Niagara_Falls_Webcam.htm

May 12th Facebook Team
http://www.facebook.com/May12th.Awareness

BobM May 10, 2013 at 9:08 pm

Thanks PR for putting these Actions all together for us to see and take part in.

Bob Miller

Simon May 11, 2013 at 3:43 am

Thanks for the comprehensive round-up, Mark.

I had no idea ME Awareness Day was set up on Florence Nightingale's birthday – what a great idea. Love the plan to illuminate the Niagara Falls for ME, and Bob Miller's sky dive too.

Also thanks to my sister, running 10k to raise £500 for the ME Association this month as Jane's Jog: http://www.justgiving.com/JanesJog

Sasha May 11, 2013 at 7:27 am

Nice job rounding this huge amount of info up!

As some people may have seen, we've got a new calendar feature on PR:

http://forums.phoenixrising.me/index.php?threads/calendar-of-me-cfs-events.23091/

that simply consists of a thread that people can use to notify us (me and welcome first volunteer Little Bluestem) of ME/CFS events that we then edit into the first post on that thread.

Low-tech, but effective, I hope!

Must confess this sudden deluge of ME Awareness Week events has caught me short so I'm cheating for now and providing a link to this article rather than each event.

Other interesting events already on there, though. I'm particularly hoping that people will notify us of expected publication dates (even ballpark) of interesting studies. There are some we're all waiting for with bated breath…

Anyway, hijack over – thanks again, Mark, for doing such a good job getting all this stuff together. It looks like it was a lot of work!

Mark May 11, 2013 at 8:29 am

Thanks everyone, glad you like it.

I've added the Niagara Falls event to the article.

Roy S May 11, 2013 at 11:59 am

Twitter CFS/ME List – May 12 ME/CFS Awareness Day
 
http://www.getupandgoguru.com/2013/05/11/twitter-cfsme-people-list-may-12-mecfs-awareness-day/
Twitter search for ME/CFS
https://twitter.com/search?q=#MECFS&src=hash
 
https://twitter.com/SoniaPoulton
Sonia Poulton
@
SoniaPoulton
Journalist. Broadcaster. Social Commentator. Mum. Has an attitude about all injustice – and doesn't care who knows it.
 
https://twitter.com/AcademicAnge
Angela Kennedy
@
AcademicAnge
Sociologist; My book – Authors of our own Misfortune? The Problems with Psychogenic Explanations for Physical Illness; Also Anti-Breed Specific Legislation
 
https://twitter.com/WesselyS
https://twitter.com/clarercgp

 
(no comment)
 
 

GcMAF Australia May 11, 2013 at 4:38 pm

And World Wide Lyme Protest Day
The events in the Lyme sphere are sure to advance things for all.
Sorry I have been so busy
to write more
Many events across Australia, NZ and other countries.
http://worldwidelymeprotestaustralia.weebly.com/index.html

Ember May 12, 2013 at 3:14 pm

Anybody listening?

Dr Eleanor Stein presents a live webcast Speaker Event, featuring Dr. Lucinda Bateman MD, Janet Sperling MSc, and Dr. Andreas Kogelnik MD. To join the webinar use the following link. When the login page comes up, select Guest and then enter your name in the space provided. http://prowebinars.adobeconnect.com/r19eynpq2ys/

Sushi May 12, 2013 at 3:19 pm
Ember

Anybody listening?

I just logged in–thanks!
Sushi

Nielk May 12, 2013 at 4:02 pm

I just logged on at the end of it. Was this recorded?

Ember May 12, 2013 at 4:07 pm
Nielk

I just logged on at the end of it. Was this recorded?

Yes, the talks were recorded. They'll be available later on Dr. Stein's website.

Sushi May 12, 2013 at 4:45 pm

I tried to upload a screen shot of Dr. Bateman's chart but failed! Apparently it has to be a PDF. It is still up if anyone else is able to do it.

Sushi

wdb May 12, 2013 at 4:58 pm
Sushi

I tried to upload a screen shot of Dr. Bateman's chart but failed! Apparently it has to be a PDF. It is still up if anyone else is able to do it.

Sushi

Kina May 12, 2013 at 5:33 pm
Sushi

I tried to upload a screen shot of Dr. Bateman's chart but failed! Apparently it has to be a PDF. It is still up if anyone else is able to do it.

Sushi

Here's a screenshot too.View attachment 5024

Ember May 12, 2013 at 10:07 pm

International ME/CFS & FM Awareness Day – May 12th
By Clark Ellis • ProHealth.com • April 23, 2013

The CDC have a couple of lists of disease observance events that occur throughout the year, and Fibromyalgia is on one of these. ME/CFS is not yet on one of the CDC’s lists. If you want to change that then you can email the CDC here, and politely make them aware of the awareness day and ask them to list it on their site. In time we hope that the CDC will get behind the day and support it more fully, as they do for many other diseases on their list….

Ember May 12, 2013 at 10:38 pm

The scene in Westminster today during the mass collapse for M.E. demo | 12 May 2013

by Tony Britton on May 12, 2013

[​IMG]
The scene at 3pm in Westminster today during the ‘Fall down for M.E.’ demonstration. Photo taken (with thanks) from the Action for ME Twitter feed:

“RT @actionforme 83 people and two dogs – excellent turnout! We’ll have our video of the event online tomorrow. pic.twitter.com/oJFNORi6xC”

Sasha May 13, 2013 at 3:02 pm

Photo of Bob Miller doing his fundraising skydive :aghhh::aghhh::aghhh:

https://www.facebook.com/photo.php?…&set=a.3479018611705.161825.1158453626&type=1

Ember May 13, 2013 at 3:58 pm

Perhaps 83 people and two dogs will skydive next year.;)

oneone687 May 16, 2013 at 4:30 am

great I had put it in the calendar to don't forget about this event and go. I've put it with the right time but wrong date on 15 May… cool.. So how many people managed do be there? From the photo doesn't look like whole London / Will there be something on youtube?

GcMAF Australia May 17, 2013 at 10:32 pm

Heaps of action in Australia – for Lyme
i think it is snowballing
so when somebody now talks about Lyme, people now say yes I have heard of that.

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