"We are what we believe we are."
C.S. Lewis

Thursday, February 1, 2018

Unrest

Yesterday morning while exchanging some emails with my Fun Book Club ladies, Maggie (one of our most vivacious members) suggested in the thread that we watch a new documentary on Netflix all about her disease.

I've known that Maggie suffered from something that I didn't understand, she is sometimes able to attend book club, and sometimes not.  When she does attend her spirit is high but physically she's tired, and not just normal tired, bone-tired.  She told us that she suffers from ME, or Myalgic Encephalomyelitis (formerly referred to most commonly as Chronic Fatigue Syndrome), but I didn't really know what that meant in any meaningful way.

So I watched Unrest yesterday afternoon and what an eye-opener it was.  What did I know about Chronic Fatigue Syndrome except that it was a disease that was ridiculed, do you remember the jokes about it?  The term ME much more aptly describes this disease, it is not just about fatigue, it affects the body on a deeply cellular level.  It is basically cellular collapse of the entire body, and there is no cure and really no treatment for it.  In fact it is very difficult for scientists to even get funding to do research into the cause, the treatment or the cure.  This is a disease that needs more awareness... pronto!

I encourage you to watch it even though it will break your heart.  How much do you know about ME?  Do you know anyone who suffers from it?
xoxDani



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10 comments:

  1. Hi Dani, I will look out for that movie. One of my husband's cousins suffered from Chronic Fatigue Syndrome many years ago, but in the last few years I believe he has made a complete recovery. I don't know exactly what his treatment was, if any, I just know that nowadays he is travelling on vacation whereas before he could barely get out of his bed. So perhaps there is some hope for your friend.

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    1. Patricia that is amazing, how was he able to get to this point? If you find out any details about his treatment/recovery maybe you could share them with me? He must be ecstatic to be able to travel after suffering through this illness. Thank you Patricia xx

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  2. Have it. Ironically, too tired to get to the local screening. Thank you (and Maggie) for mentioning it.

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    1. Erika so sorry you have this disease. I'm wishing you health and happiness and I'm hoping that this film will raise awareness so that some research can be done towards treatment and a cure. Thank you for commenting and I send you my very best. xx

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    2. Thank you - there's significant research happening around the world WRT how ME/CFS behaves - which will ultimately help guide research that leads to effective treatment. But we're still a long way from having useful treatment that works fairly consistently. Raising awareness is always a challenge, as so many of us who have this illness do not have the energy to do much (or brain fog stops us from even contemplating possibilities).

      Pacing, good quality foods and supplements are keeping me working part-time (as is a supportive GP - what is scary is how unusual that is), but I'm hanging out for retirement, when I hope to have some sort of life again.

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  3. Hi Dani, my aunt has Chronic Fatigue. Over the course of 25 years she has learnt how to manage it with the help of a very dedicated and switched on GP but it has been tough. She is excellent at putting on a ‘front’ but the exhaustion in her eyes is heartbreaking. Thank you for mentioning this - I am so sad to hear about the lack of research $, which only leaves sufferers vulnerable to the latest quackery rather than a real treatment. Sam

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    1. Sam very well said and I'm afraid that's probably true. So very sad for your Aunt and she sounds very brave too, 25 years is a very long time to suffer with this. Thank you for your comment. xx

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  4. I need to watch this. I had a relative with it. Thanks for letting us know about it. Xx

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    1. Jen it's very well done but it is heartbreaking, you'll need your tissue box! xx

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  5. Thanks for raising awareness! The more people who see this film the better. I've suffered from ME for the last 4 years, many people around me don't even know because I'm pretty good at putting on a front too, and it's such a difficult thing to explain and for other people to understand. Now I can just tell people and say "if you're interested, watch this film", knowing that if they do (I'm never pushy about it) there's a good chance that they'll "get it".

    Keep spreading the word (a lot of people with ME are too ill to advocate for themselves, and their carers are too busy) and thanks again,

    Sam (another one)

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