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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Isolation – Who imposes it?

08/30/2011

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For the last few days, we have been without power courtesy of Hurricane Irene.  At first, we focused on the basics – light and food – thankfully it was August and not a cold January.  Once we had adjusted to the necessary and realized that it would be many days before the power was restored, we started to piece together a bare bones existence.  It was quickly clear to me that my lack of internet access had shut down most of my work.  So I sought out public wifi places only to find them crowded with others in the same situation.  The servers at my library were periodically paralyzed under the load.

The internet has become a world where many of us live a good part of each day.  I was thinking back on when I was sick and feeling so isolated in my home at a time when the internet and its networks were in their infancy.  For those who are sick now, the internet is a lifeline of information, organizations and people – there to support and assist on the long road back to health.

And yet, I talk to many patients who don’t participate in online opportunities to share ideas, strategies, etc.  Yes, some of the websites are more focused on venting frustrations or well meaning empathy.  And that can be just what a patient needs some days.  But a steady stream of it is not helpful.  So you visit a few times and then lose interest.  And then you self impose isolation.

I’m hopeful that this website, now in its infancy, will be a place for active participation and the sharing of approaches to this cruel disease.  A way to take positive advantage of the access you have to other patients, caregivers, providers and graduates of the disease.  We all have wisdom – hard earned.  What have you learned about dealing with ME/CFS?  What can you share?  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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