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ME/CFS Common Ground – Not What Divides Us

6/12/2012

4 Comments

 
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Our political discourse these days seems to have devolved into a contentious ‘Us and Them’ battle.  Anything, no matter how insignificant, that could possibly make the ‘other guys’ look bad becomes fodder for the media to trump up and exploit for days and weeks.  Meanwhile, nothing is getting done.  No matter what your political view point, this nasty gridlock is frustrating.  I recently read about a ridiculous series of political volleys and it got me thinking about how I sometimes see this same illogic in the ME/CFS medical field.

 As patients struggling with ME/CFS day after week after month after year, we are always hopeful that a significant new medical or research break through will be the answer that liberates us from this cruel disease.  And I can only imagine how hopeful researchers and medical practitioners can be that they are onto a solution or an effective treatment that will be ‘the silver bullet’.  They can seem just as certain that they have the answer and honestly, sometimes severely critical of other ideas being wrong.  With resources and money scarce in this economy, it can start to sound a bit like our political discourse.  But realistically, we all know that ME/CFS is a waste basket diagnosis.  There are many versions of ME/CFS lumped in together.  They could all be onto the key to different diseases that could be culled out of the waste basket.

In the meantime, as patients, we need to focus on our common ground and support each other as we struggle to get well.  Work to understand our own versions of this cruel disease, follow the clues of our patterns and carefully pace, pace and pace.

How do you react to the squabbles among researchers?  Have you found any ‘common ground’ strategies to 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

4 Comments
Bev
6/13/2012 05:33:04 am

Thank you for sharing your thoughts and ideas. As I read your latest comment I thought that although ME/CFS has been made into a wastebasket diagnosis, we who are physically sick must keep ourselves out of that same wastebasket. We deserve better than we are getting!

Reply
Martha
6/13/2012 08:10:38 am

Amen Bev! Thanks

Reply
Tim Boland
6/17/2012 02:47:37 pm

When I read your latest blog Martha, it reminded me of how valuable your book has been to me, when in the beginning I heard some say negative things about recovery, from people who honestly did not know what they were talking about. Your book was a clarion call which says “yes you can”.

When I look at one of your early journal entries, it struck me that you slept and rested a great deal, intermixed with moderate amounts of activity. I was told at one time by a pharmacist’s assistant that walking does not have any effect on CFS, and that people don’t recover. You can imagine how deeply upsetting that was. Walking helps me to maintain tone and is also great for my mood.

As you note, there may well be many different illnesses. Perhaps part of that is each individual’s own unique genetic makeup and emotional temperament and our bodies reacting in different ways. In your blogs I do notice a striking similarity to things I am going through. It does trouble me when people pontificate about my illness, often just going from something they have read or a common misconception. Sleeping and resting make a significant difference for me, as does keeping my stress level low.

Part of keeping it low is avoiding the ‘glass half empty’ personalities, who don’t help a bit!

Reply
Martha
6/18/2012 02:04:32 am

Those 'glass half empty' personalities seem to periodically and reliably show up just to test us. We need to be ready for them. Thanks Tim!

Reply

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    Hello,  I'm
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    After struggling with CFS for four years I am fortunate now to be fully well and making choices about how I want to live my healthy life.  One choice is to be an active part of the CFS community and to offer one voice from the fully recoverd to the dialogue.  I'm glad you're here!   For more about me, here's my Bio.

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