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.

Continue reading

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Absence Makes The Heart Grow Fonder?

Hi Folks,

I apologize for my continued absence. You might remember I spoke about having some eye problems the end of last year, which the doctor thought was a passing virus. Unfortunately, after a brief respite where I could see properly, the problem returned. I’ve been plagued with eye pain, fuzzy vision, and headaches ever since. My time on the computer has been very limited, due to the fact I can’t see. I don’t know if this is related to any of my other illnesses, or not.

Luckily, I learned touch typing way back in high school, so this message should be typed out mostly correct. I see the Ophthalmologist this afternoon, so maybe she can start figuring out what’s gone wrong with my eyes. In the meantime, I’ll try to keep reblogging interesting articles other people have written. The old “Let me entertain you,” schtick.

So, my apologies for disappearing. I hope you all stick around, because I will be back online.

Thank you,

Linda Williams Stirling

Issue #2 is out!

Come check out a new online literary magazine featuring art, poetry, stories, and more! I think you’ll be glad you did.

Take care,
Linda Williams Stirling

Do Fictional Characters Evolve or Is It the Writer?

Here are some very good thoughts on the evolution of written characters. Who is changing along the way….the character or the writer? This is a valid question to consider. James J. Murray at Prescription for Murder gives us some things to think about for character development in our stories. Enjoy.

Take care,
Linda Williams Stirling

Prescription For Murder

MH900448464 When developing a fictional character, there are several methods that writers can use. The first thing that usually happens, however, is that writers picture a person in their minds and that first impression of a character often sticks with them throughout the story.

But this first impression is a one-dimensional view. It’s the equivalent of a cardboard cutout of a cartoon character. Layers of personality and history must be added to a character, even before starting to write the story, in order to properly develop how the character acts and moves within the written scenes.

In general, there are five aspects of a character, besides appearance, that a writer must think about before introducing a major character into a storyline.

The first is to consider personal details of the character. These include the finer aspects of the character’s appearance. The writer might imagine an older man as a protagonist…

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Inspiration For Writers

Some excellent inspiring quotes. Although geared towards writers, they apply to many life situations. I have to say, the one from Christopher Reeve still chokes me up a little. He will always be a “Superman” to me. If you’ve never read his autobiography “Still Me,” give it a try. Talk about inspiring….and heartbreaking. For today, enjoy these great quotes put together by Jennifer Owenby at Jen’s Thoughts.
Take Care,
Linda Williams Stirling

Jens Thoughts

soarI wanted to share some uplifting words for you today:

“I’ve got a folder full of rejection slips that I keep. Know why? Because those same editors are now calling my agent hoping I’ll write a book or novella for them. Things change. A rejection slip today might mean a frantic call to your agent in six months.”

MaryJanice Davidson

“Believe in yourself and in your own voice, because there will be
times in this business when you will be the only one who does. Take
heart from the knowledge that an author with a strong voice will
often have trouble at the start of his or her career because strong,
distinctive voices sometimes make editors nervous. But in the end,
only the strong survive.”

Jayne Ann Krentz

“This is for writers yet to be published who think the uphill climb will never end. Keep believing. This is…

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Check Out The Next Blog From The Hop!

why i write

Hi there! A friendly reminder to take the next Hop on our Blog tour. I shared my writing process 0n Monday, February 17,  here, and the Monday before Joseph D. Stirling shared his process at JDSFiction.

Also, on Monday, February 24, Bianca at B.G.Bowers and Carrie Wilson at Magic and Marvels answered their four questions about their own writing processes. Today, Monday, March 10, go on over to visit with Diane Kratz at Profiles of Murder. I guarantee there will be some interesting reading ahead!

Take care,

Linda Williams Stirling

Is ME fatal? A different perspective.

If you or a loved one has ever been touched by a life-threatening illness, you understand the fear, the grief, the hope, and finally the acceptance that goes along with it. But what if you had a disease that doctors and studies and articles claimed was NOT life-threatening, and yet you are dying from it? The truth is, ME ( Myalgic Encephalomyelitis), often referred to by the innocuous name of CFS, is very hard on the body and many people do die from it. We need more and better research, plus actual treatments, not denial. This blog post, from a woman I greatly respect, provides an honest look at this issue. She can speak with authority on the subject as she is a woman with end-stage ME. We need to pay attention.
Thank you and Take Care,
Linda Williams Stirling

Documenting M.E.

As someone currently receiving hospice care due solely to the effects of ME, it irks me when people claim ME is not a fatal disease. Many, many ME-related deaths have shown that, at the very least, this disease can be fatal. I’ve seen people throw around a statistic which claims the death rate for this disease is 3%. What they don’t realize is most ME experts agree this number is grossly underestimated. Let me explain why.

ME is most similar in nature to another neurological illness, Multiple Sclerosis. Like MS, most ME experts agree there are certain subtypes which exist within the same illness name. The most commonly suggested categories (and those I personally see) are stable (illness remains the same or improves slightly with careful energy planning), relapsing/remitting (illness cycles through better and worse phases), and progressive/deteriorating (illness consistently deteriorates over time, regardless of planning and treatment). Of these…

View original post 566 more words