International Awareness Day Coming For ME/CFS, Fibromyalgia, MCS

May 12th! This Is Your Day!

By Erica Verrillo • www.ProHealth.com • April 20, 2014

This year marks the 30th anniversary of the Incline Village outbreak, making this a special May 12th for people with ME/CFS.May 12th! This Is Your Day!
For those who are not familiar with the history of May 12th International ME/CFS and FM Awareness Day, it was started in 1992 by Tom Hennessy to promote awareness of chronic neuro-immune diseases, including ME/CFS, FM, MCS and GWI.  Tom chose May 12th as ME/CFS Awareness Day to commemorate the life of Florence Nightingale, who suffered from an illness much like ME/CFS (probably brucellosis). May 12th is her birthday.
Tragically, Tom died in September 2013 after a 25-year battle with ME. He was 59 years old.
Why hold an awareness day?

International awareness days are intended to draw attention to specific medical or ethical problems. They are particularly important for diseases that are poorly understood by the general public, such as ME/CFS, Gulf War Illness, and fibromyalgia. Awareness events that draw media attention are good opportunities to present the facts about the illness, and to correct misconceptions.

In the case of ME/CFS, most physicians, as well as the general public, believe that the disease is not particularly serious, or that it’s psychological. The only way to challenge those beliefs is to hold an event that will increase their understanding of how the illness affects people. This is called raising awareness, and it’s a necessary step, not just for educating the public, but for gaining acceptance in the medical community.

An international awareness day not only helps educate the public, it provides fundraising opportunities for charities and for organizations that advocate for the patient community. Usually, these organizations are small and any funds that can be garnered through a May 12th event, will go a long way to furthering their mission to aid the community.

Having an awareness day allows many local groups to plan simultaneous events. These combined efforts go a long way toward promoting the interests of those who are ill and disabled. Even if you can only send an email or a tweet, you are part of a much larger global effort.  With thousands of individual actions, however small, we can raise a mighty voice. This is your chance to support the courageous individuals and organizations trying to make life better for those with ME and CFS.

How you can participate

There are many events, worldwide, to commemorate May 12th, not all of which involve travel, or even an expenditure of energy. There are email campaigns (this is a good time to contact your representative!), twitter campaigns and thunderclaps, as well as online fundraisers. Every act of participation during this week, no matter how seemingly small, amplifies the efforts of everyone one else.

Contact your representative

For US citizens, it is very easy to contact your representatives.

Simply go to Contacting Congress. Click HERE.

Type in your zip code. Your representatives will pop up, along with contact links. Fill out the form. (You only have to do this the first time. It will fill automatically in the future.)

Paste your message into the box and click Send!

Are you at a loss for what to say? These are some key points that you may want to mention:

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 in the U.S. 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.

UK citizens, find your MPs here.
Currently it is estimated that some 250,000 people in Britain are affected by this illness. A report by Sheffield Hallam University’s Survey and Statistical Research Centre estimated M.E.s cost to the UK at 6.4 billion pounds per year. 

Australians, find your MP here.
150,000 Australians are estimated to have ME/CFS. In 1992,  Lloyd and Pender estimated that ME/CFS cost the Australian government in excess of $25 million and cost the Australian community approximately AU $59 million. Imagine what the economic losses must be today.

Canadians, find your MP here.
341,000 Canadians have been diagnosed with ME/CFS.
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Thunderclaps

A Thunderclap is a crowd-speaking platform that helps people be heard by saying something together. If the supporter goal is reached, Thunderclap will blast out a timed Twitter, Facebook, or Tumblr post from all your supporters, creating a wave of attention. The beauty of Thunderclaps is that they are absolutely effortless. All you have to do is click.

There are three thunderclaps planned for May:

May 12th International Awareness Day

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

Stop the IOM, Adopt the CCC

If you write a blog, Just ME has scheduled a blog bomb for May 12. What’s a blog bomb? It’s a timed release of blogs about a single topic. In this case, blogs about ME/CFS, FM, or chronic Lyme disease  would all be posted on May 12, and then shared via twitter and Facebook. Read more about it here.
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US Activities for May 12th Awareness Day

San Francisco, CA

On Monday, May 12 from noon – 1PM, there will be a gathering in front of the regional HHS headquarters at the Federal Building, located at 90 7th Street.

This will be a peaceful event. (A permit has been obtained.) The theme for this gathering is “30 Years of Neglect,” a message which will be displayed prominently on a banner.

Portraits of people who have died of ME/CFS will be placed in empty wheelchairs, in order to draw attention to the fact that ME/CFS is not a benign disease, and that it not only disables but can be fatal. After the gathering, those who wish to send a message to our representatives can join us in McKesson Plaza (five blocks away) in front of Senator Feinstein’s office. A bathroom is available in the café next to the Federal Building, as is food. If you are in the Bay Area, please join us!

For more information contact: Erica Verrillo : everrillo@yahoo.com
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Washington, DC

There will be a demonstration at the Capitol Building on Monday, May 12, from noon to 1:30 PM. Our representatives need to be aware that ME/CFS is a serious disease. We are their constituents, and we vote!

The federal government needs to see that we carePlease join us in Washington!

Please contact Mary Dimmock at MECFSAction@yahoo.com for more details.

Please let Mary know if you would like to attend so she can finalize plans for the event.
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Worldwide activities for May 12 Awareness Day

May 12th Facebook page: This is a great resource for finding out what is going on  – and where.

May 12 Neuroimmune Diseases International Awareness Day: This site has links to events all over the world. The list is updated, so check often to see if there is an event in your area.

FM/CFS/ME Resources: Provides good tips for how to get involved without expending a lot of energy.

Please Create a Doodle: This is a Facebook page with all sorts of events, fundraisers, and other ways to increase awareness.
The ME Association: (UK) A long list of various events (in the UK) is posted here.
Walk for ME: This group sponsors public walkathons in the UK to help draw attention to ME/CFS.

MEFM Action Network Facebook page features May 12 events all around Canada.

ME/CFS Australia is hosting a high tea and other events for May 12th awareness.

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Fear Of Giving In

An amazingly honest and open post about living and slowly losing the battle with ME. My heart goes out to Brooke, but I have great admiration for her desire to document her life with ME, so others can learn from her. Blessings to you, Brooke.
Take care,
Linda Williams Stirling

Documenting M.E.

As someone who struggles with severe, progressive ME, one of the issues I struggle with most is giving in to new lows as the illness progresses. Over the years, I’ve learned this illness is relentless. It will continue to worsen no matter what I do. Sure, I can speed up or slow down the progression some depending on how much I push myself beyond my limits, but in the end, the illness will be worse this month than last month, and next month than this month. That’s just how it is.

So why do I fight it so hard? For the past several weeks I have become aware that my body is pushing for a noticeably new low. I already spend all of my time in bed (when not using the bedside commode) in a dark, quiet room. I already limit my in person interactions with people as much as…

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ME – A “Controversial” Illness…..We’ve Had Enough!

I am invisible2Hi everyone. Still under the weather, so I’m sharing a couple of good stories focusing on Myalgic Encephalomyelitis (ME). I hope you find these informative and interesting.

Take care,

Linda Williams Stirling

ME – A “Controversial” Illness!

Sally Burch, re-blogged from “Just ME
When I tell people that I have ME, I am sometimes told that it is a “controversial” illness – as if I perhaps had a choice in succumbing to it! The controversy is largely due to name Chronic Fatigue Syndrome now favoured in both UK and USA, and which many patients (myself included) believe belittles the true nature of ME. Continue reading

Canary in a Coal Mine – Our big push to the finish line

From Jen (who has ME) and Kiran, makers of the upcoming feature length film about those living with the invisible illness ME/CFS: Canary in a Coal Mine:

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Daily we are moved by the support and embrace of this film, by all the messages, words of support and the stories you’ve shared.

Thanks to that support, we’ve raised a tremendous fraction of our budget through the power of the crowd, far more than we ever imagined. At $159,417, and with one week left, we are in striking distance of our goal!

We just wanted to answer some questions about our budget. Even when we were aiming for our first $50,000, some wondered why we needed even that much to make a feature-length film. Why are we now shooting for four times that goal?
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Devastating Disease Doctors Have Never Heard Of

invisible women2Today for your enjoyment, I’m re-posting an article that appeared on the ABC News page. It is a good read and very informative. The focus is on a woman named Jennifer Brea, an ME patient, and a Kickstarter campaign she has started in order to fund a Documentary about the disease Myalgic Encephalomyelitis. Her campaign, called Canary in a Coal Mine,  is doing very well. That site provides a lot more interesting information and is worth a read. Check it out here. This Documentary, and all the work Jennifer is doing, sounds like a very worthwhile project,. I humbly ask that anyone with the capability, to please support it. Even if it’s only $1. Also, please pass this Kickstarter information on to your friends. There’s only a couple weeks left, and they’re hoping to get as close to $200,000 as possible. Thank you very much. Please enjoy the article below.

Take care,

Linda Williams Stirlingevery second2

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