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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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It’s Valentine’s Day.  One of those loosely historical, made up days to sell stuff.
OK that was cynical.  But we seem to have developed an entire year of these almost monthly events which push us to do or buy something.  Or feel out of it if we don’t.

For me, today is an exception.  When I was struggling with ME/CFS, I wasn’t very good at recognizing all the kind and thoughtful things people did for me - family, friends and strangers too.  Unfortunately, for a good part of my struggle, I was seeing everything through a veil of angst – anxiety about my situation tinged with hope for resolution.  This sometimes kept me from seeing the people around me who cared and wanted to support me.  I often forgot, caught up in my own wrestling match of emotions and physical malfunctions, that those around me were feeling some of the same helplessness – not sure of what to say, what to do or when to just be present for me.

For some reason, on the first Valentine’s Day after I was beginning to feel strong again, I felt the desire to express my ‘love’ and appreciation to those who were supporting me.  It started a tradition that I still follow.  Today has become a reminder day for me to stop for a moment and make sure that I let the people in my life know how much they mean to me and how much I appreciate them.  Yes, that’s hokey.  But I prefer it to cynicism.

Are you making time to let people know how much you appreciate them?  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