May 7, 2007
Mother Saves Newsletters
I am the mother of a daughter with Chronic Fatigue Syndrome. We faithfully read and save each newsletter so that we can go back to review an earlier issue for a topic that might be of interest to us now but wasn't at the time of publishing. Keep up the good work. – Nancy
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Error in Article
Regarding [the article] (“Pharmacotherapy for CFS”) - Nefazadone is not an MAO inhibitor and the PhD who wrote this article should know this. It's an SNRI. Just an FYI for you. – Nospam
Note: Thank you for pointing out the error. While we cannot rewrite the published work of an author, we did insert a notation in brackets that nefazodone is an SNRI. As the article explains, MAO inhibitors and SNRIs are two different types of antidepressants that “act in different ways and may affect individual patients differently.”
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CFS and Oprah
I just read a reader's comment that Oprah should do a show on Chronic Fatigue Syndrome. She really should. There are too many doctors and people who misunderstand, misdiagnose, and ignore this disabling condition, which can totally shatter a person’s life. It is so frustrating to even begin to explain to a normal person the debilitation, the pain, the exhaustion, and the heaviness. I think all ProHealth readers should e-mail Oprah and tell her to watch the documentary film [about CFS] “I remember Me.”
… Seriously, just think if hundreds of ProHealth subscribers wrote OPRAH.com for the purpose of raising compassionate awareness - it would get her attention! – D
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“I Remember Me” for UK
Pity the new DVD about CFS “I Remember Me” is encoded for Region 1. I think it would probably be useful in the UK as well. – MH
Note: Good news! The DVD “I Remember Me” is available in an international version. Both versions are listed in the ImmuneSupport.com store under books.
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A Story of Hope – For Those Still in a Bad Place
The reason I am writing is that, as I read the last e-mail from your company covering how much we suffer as a group, I am overwhelmed with happiness for where I am today. I was diagnosed with FMS about five years ago and CFS about three years ago. Like many of us, I was to the point of giving up.
I was sick and in extreme pain constantly. I was unable to lead anything close to a productive life. It affected my family too much - especially my little girl. I could not even play with her. It was awful and not a life I wanted to lead. I had to leave my career as a pilot and also my sideline career and passion as a horse trainer because of these diseases. I did not think I would be able to be active ever again.
Well, it’s certainly been a long, long journey with many hurdles, but as I sit here today I have a wonderful life as an artist. And I am riding six to eight horses a week as well as riding in a show next week. I have also accepted a position as a part time trainer in a jumper barn. (The owner knows about my health and will work with my bad times.)
I wanted to write this in case any of it can be used to give hope to those still in a bad place. We all need to remember that nothing stays the same. We will have better days. I still have bad episodes and setbacks. I am in constant pain, which is mostly managed, but I have breakthrough pain daily. I still get sick frequently and have a battery of doctors. I have more medicines than all of our grandparents combined! I have machines to help my muscles and I go to physical therapy.
But I'm just so proud of my body to do anything at all anymore, and that’s something it took a long time to understand. I'd like to encourage everyone not to throw in the towel. Keep working with all those you have around you - doctors, family, friends, therapists, pain management specialists, etc. - to get a system and maintenance that works for you. Don't stop trying.
I'll never be able to fly again and there are lots of other things still wrong with my body - some things that will probably never be figured out - but I am so very proud of my body for doing its very best under the circumstances. And I look forward to a day ahead, which I could not do for so very long. We should keep the faith. There is hope for us all. – Wendy
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