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 Advocacy for CFS and FMS 
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Post Advocacy for CFS and FMS
I copied this from News and Updates" and wanted to put it here where it really belongs:

I really want to help. It greatly upsets me that I'm doing so horribly all the time. I have so many things I would love to be able to do. I am in incredible pain almost all the time. I am on weird sleep hours that are always changing. I can barely keep myself fed and make it to the doctors. i am so sick all the time. i mean every day and night. I also have cognitive dysfunction so for the most part I am good for nothing.

I always get upset around May 12 because I want to help get the word out but I can't do much. I also feel that i must spend as much energy advocating for CFS as well as FMS since I've suffered from CFS for over 2 decades now and I think CFS is debilitating me the most.

I fantasize about creating brochures that we could mail to people like doctors etc.. and give to people who yell at me for parking in the Disabled section. I would like them to include the kind of info you almost never see about CFS/FMS unless you have it and do extra research. We need to explain that CFS/FMS can be mild to extremely severe, that cognitive dysfunction is common in both illnesses, that many of us are intolerant to drugs, that seizures happen with CFS, that some folks are so bedridden they can never get up and are tube fed, that FMS is so crippling it can make you have to crawl on the floor (which hurts too) or use a wheelchair. Like i've had to do many times. That some of us have burning skin all the time and cannot wear closed shoes or be touched.

That the sx fluctuate so much even in one person, they could go dancing and then suddenly not be able to walk.
(This one's really hard to explain, even I can dance still sometimes.) That many of us feel like we are dying much of the time. That GET and CBT not only don't help but make things worse for a lot of us. That early treatment that the CFSAA says will help people won't! That CFS does not just last a few years and then go away for most of us. That CFS/FMS can be progressive. That children suffer from CFS/FMS and some are so severe they cannot attend school or do anything. That some folks are so severe they "sleep" around the clock and can't leave their darkened bedrooms because they're too sensitive to light. They also Need to be educated that uncontrollable crying is one of the symptoms of CFS.

That those with mild to moderate CFS/FMS can lead what look like normal lives to outsiders but they are still suffering and modifying many things they do. It needs to be emphasized that most of us look healthy and that our tests are usually negative.

That many of us are constantly suffering and our symptoms cycle and change completely every min. That the pain can be of all different kinds and moves around our bodies. That the pain can be so severe it's common for people to visit EMs thinking they're dying.

These are the kinds of things I don't see when I look at brochures or websites that explain CFS/FMS. We need to get the word out to doctors, Emergency Rooms, churches, temples, schools, govt. and other CFS/FMS organizations so that we at least have the same information. The CFSAA is doing a great job at minimizing CFS and making our illness seem treatable for instance.


I also don't want to advocate only for FMS as I see most on this site doing. I realize now that one of the reasons I never got involved in advocacy here is because it's been about FMS, which I have but I feel that my CFS is just as if not more debilitating and I've had it much longer. I thought that it was great people were advocating for FMS but wondered why they weren't even mentioning CFS here. Then I looked again at the title of this board and realized that this is primarily for Fibro. So I figured fine, that's what they want to focus on. I have sent letters to my congress people in the past and tv shows etc... advocating for CFS and i can't recall but maybe I mentioned FMS.

I have stated in other threads here how I feel about May 12 being only designated for FMS. I'm interested in hearing feedback on this after people have given it some thought and have read about it some more.

Here's more about May 12 and CFS: http://www.cfids.org/advocacy/awareness-day07.pdf



kris


Last edited by KRIS on Mon May 07, 2007 8:39 pm, edited 2 times in total.

Mon May 07, 2007 7:52 pm
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I totally support you in your efforts to advocate for both Kris, I cant speak for the rest of the site, but as for myself I am only diagnosed with FMS, not both, so I can only say from the heart what FMS feels like, which is why I advocate for it.

I also advocate for un/under insured ppl, because thats another cause I feel strongly about, and I would be happy to contribute to your efforts to advocating for CFS, i just dont know what it feels like PERSONALLY to have it which is why my video was about FMS awareness, because i DO know what the dat to day struggles of a fibro patient are like.

Let me know how I can help and I would be happy to!
Jo

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Mon May 07, 2007 8:35 pm
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Post hi there...>>>>>>>>>>>>&
Hi there kris,
I think if you look at the top of the board, it does indeed say FMS/CFS...

I myself think the 2 are one of the same..(imho.)& they go hand in hand......

some folk with DX fibro also have the extreme fatigue, (plus the extreme pain).......if you read some of the many posts on here about the pain/fatigue...I think you would agree....

I myself always put the 2, ...'FMS/CFS'... as I feel strongly they are 'both' one of the same.....
take care,
luv Wendy oz xxx


Tue May 08, 2007 4:52 am
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I too have both CFS and Fibromyalgia. Honestly, I flip-flop on which is worse. Most of the time I think the fatigue is worse until I get thrown in a pain flare. I have moderate to severe symptoms but have to keep going. While every single one of my doctors are FMS/CFS believers, they will not say that I'm disabled. I have to find ways to cope with the symptoms. Some days it's not easy.

I do find that my pain and fatigue improve when I keep a good outlook and take care of myself emotionally and spiritually.

I think employers, etc... are missing out on some good workers by not 'working around' how the 'patient' is able to function and perform. Hopefully the Awareness of these two debilitating illnesses come to the forefront and show people that it isn't a 'laziness' illness.

TC


Tue May 08, 2007 7:21 am
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I'm glad to be getting feedback on this. I went back just now and reread FT's mission statement and found this:

Future Goals

The FT Community is dedicated to enriching the lives of its membership by providing its members a safe haven from the judgments and prejudice of the outside world. This goal will always be paramount. However, in the future, we hope to launch more Advocacy and Awareness programs throughout the world. These programs would be aimed at educating the global medical community, governments, and policy makers about the hardships endured by fibromyalgia and chronic fatigue sufferers. Our Advocacy Group interacts with media centres and high-profile entertainers with the goal of ultimately raising the profile of this often misunderstood illness.

Maybe the intention was to advocate for both CFS and FMS but treat them as the same illness. I think I'm ok with that because we don't have to prove they're separate since many of us here have both and the symptoms overlap so much. In fact, I'm not sure that the Canadian Definition is completely correct about them being so separate. For instance, those that say that they're separate diseases say that cognitive dysfunction is only a symptom of CFS not FMS and I've been around the boards enough to know that people with primary FMS also complain of cognitive dysfunction. I think you can find this happening with most of the symptoms. We on the boards know things that the researchers often don't about our dds.

Jo- thank you for your reply and offer to help. The Fibro Awareness Day Video that you made explains exactly what it is like to have CFS. Especially because you emphasized how disoriented we become and how we feel constant flu symptoms. In fact it was one of the best CFS vids i've seen even though it wasn't intended to be. In fact, i thought you also had CFS and couldn't understand why you didn't mention it.

I also completely agree on advocating for the uninsured and even the insured who are being told that they cannot receive their benefits from their LTDs that they paid into all the time they worked which is still happening today.

kris


Tue May 08, 2007 2:21 pm
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hi kris

i'm going to try this again, because just before i finished my other one it took off into cyber space. heavens only know where or if it will turn up. lol

i was dxed with CFM way back when it was called CIFIDS, but i know i've had it a lot longer than that. i also have FMS, and lupus, as well as many other diseases and syndromes that go back all the way to my childhood. i learned this through my research. i have had many drs. shake their heads because they couldn't find out what was wrong with me way back when, but now i know. my most favorite dr. of all time used to laugh and say "brenda, you're just wierd" he was a family friend as well as a neighbor, and didn't mean it to sound mean, he was just that way. i wish i could find another dr. like him, it was so sad when he retired. But since he's a friend and neighbor, i still consult with him sometimes. (now how did i get off on that subject?)

it seems as if all of them have to do with the auto-immune system, so surely they all have to be related in some way. all most everything i have causes the pain and fatigue, so i seem to be in pain 24/7, even though i have my pain pills, etc. and yes, it's hard when you don't have insurance, all my extra money (and not so extra money) seems to go for that purpose. it's hard to settle for not so good medical advice, so i do my research and take it to my drs., to try to keep them informed as to what is going on with me. by doing that, and by telling everyone i know who has theseDDs and who have friends with them, i so my small bit for advocacy. i know it's not much, but i never know from hour to hour how i am going to feel, and not having money to really get out and advocate like i should holds me back. i would love to be on the team, but feel that i can't because of these limitations. since i live in NC, it really makes me feel bad that i can't do more. i'm glad that you understand how ppl like me feel for not doing more.

sorry i'm rambling on, i hope i'm making sense, the fog and the lulu's are bad today, and i can't seem to concentrate on what i'm trying to get across. also, i'm having to fight with this keyboard, it doesn't seem to want to cooperate with me today. so before i really make a fool of myself, i'm going to shut up, and try again another day when i can concentrate, because i've totally forgotten most of the things i wanted to post here today.

pax
leit

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pax
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Wed May 09, 2007 8:57 pm
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Hi Kris,

You definitely have good ideas, in fact some of what you say you want to do has been discussed by the team.

Some of what you mention about FM/CFS is so touchy it does get down right frustrating. There are some articles I've seen that say these diseases are one and the same, others say their different. My opinion is all the different arguments that go on by the medical community will continue until they can pinpoint where these illnesses begin. This is where I feel advocacy by all of us suffering with FM/CFS and other illnesses that we have is very important. To get down to brass tacks, it is hard for many who have gone to college and work in medicine to accept what we tell them; call it ego or stubborness - anyone who has studied medicine has a hard time accepting what we tell them. Heck we're only the ones suffering with these problems what do we know. So we have to word ourselves carefully to make them realize that by listening to us who suffer from these malady's they can get some fresh ideas of medicines that will help us and what parts of the body are being destroyed from these illnesses.

Leit you are doing wonderful advocacy by talking to anyone willing to listen to what we go thru. Hun this is advocacy, so you and any member here are advocates - some of us have not got the time to be on the team which is fine. Sharing what you have learned helps you gain control over your problems - this is advocacy/awareness. So keep posting and know the A-team is getting the projects from the information all of the FT family shares on the boards.

Bonnie ;)


Wed May 09, 2007 9:44 pm
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Great Bonnie,

Thanks for your response. We're all definitely on the same page. It's true that we are medical anomalies but there are millions of us and counting!! I feel much better about doing some advocacy than not. It's energizing just thinking about it. We need to show these fools where it's at!

I agree with careful wording. I'm glad we have Soul, the lawyer :) and many other smart people here. We can do this. Go team!!! *4* *4* *4*

kris


Thu May 10, 2007 4:43 pm
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Leit,

You a fool? No way, never, ain't buyin' it! I know how frusrtrating it is to lose your posts. It happens to me too. When I can I try to remember to right click in the text, Select All and Copy so that if it disappears I can Paste what I had so far and this has come in handy many times. I usually do it every other paragraph or so.

I hear you on the suffering you go through and I'm sorry you have such a hard road to tow. Bonnie is right, you are advocating. We all do every time we explain our symptoms to others whether they get it or not.

Your post is not rambling at all. It's also fine to post as often as you want each time you think of something to say. Please do!

kris


Thu May 10, 2007 4:58 pm
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