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Discussion Starter · #1 ·
tk posted this earlier in the month, but I was only able to watch it today. I found it so moving, I felt like it needed to have its own thread, and I wanted to call everyone's attention to it again. To refresh everyone's memory, here is the original post, made by tk:
quote: Just saw this elsewhere. Even though it is done in the UK, I think a lot of people will find it moving.----------------------------------------------Not sure if you have seen this. In 11 years of being ill it is the bestthing I have ever seen on TV about M.E. It is well worth the download and takes about 10 - 15 mins to watch it .. I almost cried to finally seeM.E. dealt with so accurately. Here's to the cure!!http://www.investinme.org/Mediatelevision.htm
I had one brief comment I wanted to make after watching it. They mention that the one thing that seems to have actually made a difference for Suzy (a small difference mind you, but at the same time, a BIG difference for us ME patients) was extending her activity level by seconds on a daily basis. Little by little, but extending it just a few seconds at a time, she was finally able to be wheeled in a wheel chair around her house - as opposed to being bed bound 24/7. I just had to comment that this same technique has helped me as well. Most doctors don't think of it, or don't know about it, I think it's one of those "necesity is the mother of invention" things, that patients figure out on their own. Over the past year and a half, I started a VERY light exercise program, and I am now able to have 1 day a week of more activity. I exercise 5 times a week - for 6 minutes 3 times a week, and 10 minutes 2 times a week, so I'm not talking real, normal people exercise, and it's taken me a year and a half to get to this point, but it has helped me!Has anybody else done anything like that, on their own that has made a difference?Oh, and on a personal note - tk, thanks for posting this!!
 

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I haven't had a chance yet to watch the video...but I wanted to add that the biggest and by far most important factor in helping me get back to some kind of physical normality (well as normal as it can get with ME
)was slowly slowly increasing my activity little by little. It took me four years to get from having to lie down for a whole afternoon after walking one flight of stairs to being able to walk upto 8-9 miles a day which I do in my job. The biggest thanks though for me goes to my ex-boyfriend's gorgeous black labrador who nagged me every day to take him out...if it hadn't been for him I would have stuck in bed and wallowed in self-pity. so heres to our furry friends!
 

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Discussion Starter · #4 ·
Clair,Well, it looks as though that is a fairly reliable method to increase our functionality (if that's a word), at least just a little bit. Isn't that interesting? I wish I knew all the whys and hows.Joolie,I'm doing ok enough, though I'm not sure who Marilyn is? Maybe thinking of a different member?
 

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Thanks for this link! I already posted it on "healthboards" and "immunesupport".I'm a bit sceptical of the cure part but am glad to see that an accurate diagnostic test is on its way.
 

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Discussion Starter · #6 ·
quote:I'm a bit sceptical of the cure part
Yeah, me too, definitely. You get skeptical really quick in this arena, don't you? It'd be really nice though...At least it's getting more public attention.The main reason I liked it was the interviews. I thought it really painted a beautiful picture of people who live with very severe CFIDS.I'm glad you were able to share it on other forums. I think this is a great link to share with everybody - patients and caretakers alike!
 

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When I posted it on healthboards, I inadvertenly had said I learned about the movie from this site. For mentioning "ibsgroup.org" on their blessed site, I'm now banned and all of my previous posts are destroyed. This makes Robert mad. If you want to post the link on heatlhboards, I'm sure the members would appreciate it.
 

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Discussion Starter · #8 ·
Ah yes, most websites and online communities have VERY strict rules about that kind of stuff. I think we get spoiled being here, because this BB lets everyone pretty much do what they want. And, if you mess up here, you get a LOT more chances!Sorry that happened to you Rob, especially when you were just trying to share something encouraging!!
 
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