ME/CFS Actions – Sign The Petition

05/01/2012

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When I was bedridden with ME/CFS, I was struggling just to do what I could to help myself.  The amount of energy I had to reach out to other ME/CFS patients was limited.  And at the time, the internet was in it’s infancy in terms of organizational communication.  For ME/CFS sufferers today, the World Wide Web is a blessing.  Even if you’re house bound, there is a wide selection of organizations working to solve the puzzle of ME/CFS and to support patients and their caregivers.

Someone recently sent me a link to a petition hosted on Change.org which sends a message to the CDC to reevaluate their ME/CFS research and to step up their efforts.  It is supported by many regional ME/CFS groups as well as individual researchers.  Please check it out and sign it today.  And send the link along to your other ME/CFS groups as well as friends and family.  This is something we can all DO.

Will a petition change anything?  There are no guarantees.  But we’ve all witnessed what can happen when people combine their efforts for a cause.  Do you know of other petitions or ME/CFS efforts that we can lend our support to?  Please COMMENT or Send in your thoughts and I’ll post them.  You can use the Contact Form or send an email to Martha at DefeatCFS dot net.

Look for a weekly posting on Tuesdays.  And consider being part of the conversation.

Be Well Again,

Martha
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ME/CFS Contributing – Because I Can

04/17/2012

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© 2012 TSM
In August of 2000, I was able to celebrate my full return to health by summiting Mt. Kilimanjaro in Tanzania Africa.  It was a personal moment.  When I returned home, I decided that I wanted to show my gratitude by giving back.  The next Spring, I joined the annual Walk for Hunger sponsored by Project Bread.  On the first Sunday of each May, we walk 20 miles to raise money for all the food pantries, food kitchens and food programs throughout the New England region.  This year will be my 12th walk.
 
And each year, with every step, I remember my ME/CFS days when I couldn’t walk across a room without collapsing in a chair.  I remember the darkest bed ridden days.  I remember my anger at the medical profession – which I admittedly still harbor.  I remember the frustration with my snails pace recovery.  But mostly I remember that I am blessed to be well and that there are so many who are still struggling with this cruel disease.

I set up my donation webpage this morning and it is an honor – yes truly – to be able to contribute because now I can.  And I encourage everyone to be a positive influence on those around you and especially on yourself despite your struggle – or a loved ones struggle – with ME/CFS.

Are you able to contribute in any way?  Please COMMENT or Send in your thoughts and I’ll post them.  You can use the Contact Form or send an email to Martha at DefeatCFS dot net.

Look for a weekly posting on Tuesdays.  And consider being part of the conversation.

Be Well Again,

Martha

If you wish to make a donation, here’s a link to my webpage.
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Welcome to the Conversation – A Beginning

07/19/2011

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© 2011 TSM
I have held the intention to start this CFS (or fill in your preferred name) conversation for a while.  But life has been full of growth, transitions and holding patterns for many of my loved ones so I have been fully present for them.  And consequently, not so present for myself.

With the departure this coming Fall of my youngest off to college, I am feeling some of the usual sadness of the so called “empty nester” but honestly, not so much.  I am celebrating the culmination of this phase of my parenting and I am so proud of both of my kids and the mature young adults they have become.  They have much potential and a solid foundation upon which to build their futures.  I am most proud of the caring people they have become and their capacity to be part of the solution.
I appreciate the way some things seem to come around full circle.  The child born from the nightmare CFS pregnancy so many years ago is my youngest whose departure now provides the time and the energy on a daily basis to return to the CFS community.  Somehow that seems fitting.

Most importantly, and mercifully for the readers, this blog is not intended to be about me.  Although I am a writer and am quite capable of generating a stream of endless self-centered babble, my hope is that this space will house a conversation about CFS and its many aspects which affect our health and our lives.

There is much hard earned wisdom in our community and we should share it.  No one has the market on THE secret to defeating CFS.  It is at best a shadowy disease (more about that in my next blog) and a lot of what we actually know about it comes from those who have had it or those who are still struggling with it.  We also are fortunate enough to have many health care providers, family and friends who know us well and who recognize that CFS is a real physical disease.  They have wisdom to share as well.

So please consider becoming a part of the conversation by commenting, asking questions, suggesting topics or guest blogging.  Think about joining the community by sending a short thumbnail about your CFS story with a bit of your acquired wisdom and attach a pic of yourself or an image which appeals to you.  You can use the Contact Form or send an email to Martha at DefeatCFS dot net.

Look for a weekly posting on Tuesdays.  And consider being part of the conversation.

Be Well Again,

Martha
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