Do you want to stay CFS for all your life? - there is only one way how to change it

[Tuha]

Please take a bit time to read this thread even if you will think after some sentences that its not interesting. It will be also great if you will also write your opinion - where do you think that the problem is to help us to improve the things.

I think in our big cfs community is already for a long time one big problem and it is the biggest reason why after decades we didnt move too much. I think our problem has one name - PASIVITY. I know that now half of you will say- what is he talking this stupid guy with his bad english to us !?! We are so tired and we cannot do any activism but even after this answer I will stand behind my opinion.

I also know what is to lay almost one year only in bed. but you now to do some activism or better to say to support some cfs activities it means in the most of the time just maybe 5 minutes a day a small "work" on internet like signing some petitions, voting in a competition,...Ok, I know that there are also some people who are even not able to do this and i can completly understand that they will not join cfs actions. but if i remembred my worst time when I could just sit behind my computer maximum 1 hour a day - I could still do these small activities.....
Once more I am not talking about the sickesst who cannot do anything and even if they are able to spend maybe some minutes behind computer (or even not) - its normal that they will spend it with emailing with friends or to read some articles which are interesting for them. I can competely understand it and they have all respect from me because I can imagine how horrible their life is. But we do this activism also for them and even if they cannot help us we are with them (we are one community) and later when they will feel better they can join us.

You know if we are for example able to talk and speculate the hours about xmrv and to write very long emails about our xmrv opinions we have and we should be able to spend 5 minutes a day by cfs activism. Sometimes I have impression that the researchers do more activism and the patients do more research and it should be different. When the researchers have to do a lot of activism then they dont have time for research.

The people like Mikovitc, Sylverman,...are doing a lot for us but they need our help. I think they were already a bit critic to us becouse of our small activity and they are maybe the only people who understand how tired we are. and I think they are right. We have to do more if we dont want to spend our life in beds. we have to understand that none else will do this activism. the healthy people have other problems. We, the cfs patients have to do it. If we will not help the people like dr. Mikovitc they will also get tired after years and they will give up. and this will be our end. i think we already lost a lot of great people because they were frustraiting how the things are going. we cannot lose next people.

I checked some last cfs support activities and the results were - i am not afraid to say very bad. lets check it:
- there was this CHase Community giving - well, on the end we were able to get Pandora to the top 200 and so they will get the grant 20 000 dollars what is great because its their yearly budget but on the other side they got only 1500 votes. with this 1500 votes you have also to see that in average each patients brought other 5 votes from friends so maybe only 300 patients voted. There was such a big campaign in all over the world on cfs internet sites, facebook sites, mailingslists,... at least thousands of cfs patients had to see this appel.....
- then there were 4-5 petitions also with quit big campaign and the highest support is maybe only little bit more than 1000 votes - sometimes after some months - how is it possible

So I think the situation is really bad. Sometimes, if the internet site has this technical possibility, you can see that an articel with an appel red thousands people and there are such a small support.
If we will not change it - none will help us - even not the new discover of dr. Mikovitc. If it will turn out that she is right - it depends on us how long will it take to have some benefits from it. With little bit activism from many patients maybe some years. With small or no activism some decades or never.

So you can chose alone what you want to chose - passivity or activity. But I ask you if its only a bit possible - chose ACTIVITY - we need each hand.

I didnt want to critic I wanted maybe more explain this bad situation and to find why its like this.
So please, write what you think about, why you are not activ, what should we improve, where are the reason of being passiv, why you dont vote....with your even negativ answer we can change the situation the next time - so let us understand.

so it will be great if you write your opinion - i think the topic like this wasnt yet here.
So on the end enjoy to talk the hours about XMRV and other things (I know that sometimes its the only interesting thing in our life) but find also some minutes a day to join cfs activism!!!!!!!!

thanks for your time

 

[taniaaust1]

I also know what is to lay almost one year only in bed.

,..but if i remembred my worst time when I could just sit behind my computer maximum 1 hour a day - I could still do these small activities.....

Tuha. It may sound like im making an excuse of a large group with CFS but for MANY.. sitting behind a computer for 1 hr a day is there very best day or just a dream they wish for.

For YEARS i couldnt even sit behind a computer for one hr!!. To me that isnt even what i call bedridden if you can sit behind a computer for an hr a day. Bedridden to me is when i truely cant get out of bed. I spent 9 mths in that state and then years on top of that where i was lucky to be even able to use computer for 5-10 mins. (and in that 5-10 mins.. that was the only life i had.. the only time i had for contact with others etc, to live in anyway, the only 5-10 mins of my day in which i did something for happiness.. my understanding of things was shot too.. so to be trying to sign up to new sites and stuff was a nightmare and much of the time i couldnt manage it due to my brain fog)

Im not trying to pick on you but you dont sound like you understand just how sick so many of the community is.
I remember when i was very sick.. and couldnt do anything. The guilt i felt when others were on about "You should be helping" you should be doing this or that. i wanted to so much.. many just cant and to even try, may make their situations so so much worst. (by that i mean possibly worst for YEARS).

There has always been a gap in understanding between the very sick with CFS.. to the ones who are not so sick with it.

Those who are not so sick.. need to understand that much of community isnt to where they are at. Also be aware posts like this make some of the very sick who cant do things.. feel very bad.

(im not saying not post.. im just trying to bring those who arent so sick closer to those who are in understanding).

I personally think that those not so sick need to be prepared to do extra to make up for those who are .. and understand that this is just an unfortunate fact of this illness. Its not that people are mostly passive (or lazy).. it's just cause they are so sick.

 

[Tuha]

Hi tania

to answer your post and also for the others because they can be a misunderstanding. My article was not a critic I just wanted to understand the reasons of our passivity and how could we improve it. I also didnt talk about the patients who are very sick. I know how horrible my life was during my worst periode and so i can imagine a bit (maybe not everything but still a bit) how horrible the life of the sickesst pacients is and they have all my respect and I would be never able to critic them - so please note this. in another thread you wrote that maybe 25 % of us are so sick - I really have no clou - do someone know % of very sick patients? but even with this number there is still huge community of us who are able to do small things.

I was talking about a lot of us who are spending the hours by writing long emails about for example xmrv and I wanted to say if you are able to do this I think you are also able to spend 5-10 minutes to support a cfs activity. this is only my opinion and its also not for attacking the others. if you have another opinion i would like to know it and we can discuss about and maybe to improve the situation.

so please take this thread like a opportunity how we can improve our cfs activism and not like a critic

 

[jspotila]

I was talking about a lot of us who are spending the hours by writing long emails about for example xmrv and I wanted to say if you are able to do this I think you are also able to spend 5-10 minutes to support a cfs activity. this is only my opinion and its also not for attacking the others. if you have another opinion i would like to know it and we can discuss about and maybe to improve the situation.

Tuha, it is true that some members here on the forum invest substantial time and energy in researching and posting about XMRV and other issues. But the amount of time someone spends on this forum, reading or posting, doesn't tell us anything about how much time the person spends on activism and advocacy. I know many members who spend a great deal of time and energy advocating for more research funding, better medical care, etc. while also spending time on the forum. These are not mutually exclusive activities, and there is no way to know how much time someone is spending on either activity unless they say so.

I understand you to be asking for all of us to be as involved as possible in advocacy, even if it is 5 minutes to send an email. I suspect everyone here would agree with that goal, and people have to judge for themselves what they are capable of doing on any particular day.

 

[BEG]

So you can chose alone what you want to chose - passivity or activity. But I ask you if its only a bit possible - chose ACTIVITY - we need each hand.I didnt want to critic I wanted maybe more explain this bad situation and to find why its like this.
So please, write what you think about, why you are not activ, what should we improve, where are the reason of being passiv, why you dont vote....with your even negativ answer we can change the situation the next time - so let us understand. . . . but find also some minutes a day to join cfs activism!!!!!!!!thanks for your time

Tuha, Your level of frustration must be very high. We hear you in regards to activism. However, do remember the people who have been ill 10, 20, and more years. They are still confined to beds, recliners, and their homes despite the e-mails and letters they've sent over the years. Yes, lives still remain in ruination. Don't you think a certain amount of disenchantment may creep in as the decades pass?

BTW, To advocate with a push of the button (and add a bit of your story, too), check out The CAA's Grassroots Action Center. But more than anything, I believe money talks and donations of whatever amount to research will really make an impact.

 

[judderwocky]

Tuha, Your level of frustration must be very high. We hear you in regards to activism. However, do remember the people who have been ill 10, 20, and more years. They are still confined to beds, recliners, and their homes despite the e-mails and letters they've sent over the years. Yes, lives still remain in ruination. Don't you think a certain amount of disenchantment may creep in as the decades pass?

BTW, To advocate with a push of the button (and add a bit of your story, too), check out The CAA's Grassroots Action Center. But more than anything, I believe money talks and donations of whatever amount to research will really make an impact.

IMHO the CAA is not doing the kind of grass roots activism that is going to change things. I hate to be blunt, but i've had some limited experience in community organizing and i can tell you they are going no where. If you want click of a button activism... that is why I created my action site... it just went live over the last few days. I wanted to make a site that would help people who were very sick make a blog, or sign/send petitions out easily, and did not have the energy to do it themselves. It has features to share and send information... right now you can make a twitter integrated blog simply by signing up. I'm going to be adding more themes in so that user's can customize their blogs and i'm adding in funnctionality (soon) for facebook and google connect. My hope is that it will provide a simple, easy structure, for people to quickly disseminate press releases, news, and petitions... ...

about six months ago i was barely able to sit behind the computer screen for more than an hour... ive been in that place... i've been lucky the past few months to get a small amount of my energy back... if i dont do anything else i can sit behind a computer screen... but i have to limit my physical activity to the basics the rest of the day... no stairs... no lifting garbage.... no going outside in the garden.... i'm hoping that with a small investment of energy i can make a site that will help people get their voices out.... as i get more energy i expect to add more to it and i'm crossing my fingers that facebook republishes a working version of their php client libraries so that I can start using their >EXPLICITIVE< login again.

 

[bakercape]

I have to agree wholeheartedly with everthing

Tuha is saying here. We can say were to sick to be on the computer 5 minutes a day and spend limited energy on advocacy. I totally get that.
But what about our friends and family. Maybe it's up to them also and for us to ask them for help in advocacy not just caretaking. I would bet that many of us have at least one person or more who is there to help us deal with our illness. Let's ask them for help in advocacy efforts!
I also know there are a number of people with CFS who are writing books or who run blogs who have like 500 friends on face book. Not to judge to harshly but if these individuals have the energy to find friends on facebook to promote blogs and books then why can't they ask 500 people to vote in a chase contest? I guess because it's not about them or there book/blog.
I have been asked by several of these people to be friends on facebook only to figure out they were really just promoting there book or blog. But none of these same people asked me to vote for PANDORA.
There is a range of disablity in CFS. SAy 25% are completely disabled. Which is the figure most groups come up with. That still leaves an enormous amount of people with CFIDS/ME worldwide to do a minimal- moderate amount of advocacy. This is a huge amount of people! Plus family, significant others and friends.
We can't as a community be satisfied with our advocay efforts because if we do we probably will get stuck without progress. There is only so much the WPI's nd Judy Mikovitz of the world can do.
Of course the people reading this thread aren't the problem here they are part of what's going right. But how do we get the millions out there that need to be doing more and there families get more involved?

 

[Tuha]

Tuha, it is true that some members here on the forum invest substantial time and energy in researching and posting about XMRV and other issues. But the amount of time someone spends on this forum, reading or posting, doesn't tell us anything about how much time the person spends on activism and advocacy. I know many members who spend a great deal of time and energy advocating for more research funding, better medical care, etc. while also spending time on the forum. These are not mutually exclusive activities, and there is no way to know how much time someone is spending on either activity unless they say so.

I understand you to be asking for all of us to be as involved as possible in advocacy, even if it is 5 minutes to send an email. I suspect everyone here would agree with that goal, and people have to judge for themselves what they are capable of doing on any particular day.

jspotila, you are right i cannot know about the other activities of the others but what is quit visible when you check some actions you can see a lot. How I already wrote voting for Pandora, some other petitions - we never got more than 2000 votes and we have also to see that some petitions took some months. If we take for example Pandora voting I know that some patients brought 20 or even 30 votes. So if we will say that in average everyone brought 5 votes then there were only 300 patients participated and with other votings and petitions it was the same. so I think this says everything about our activism we are always taking about the millions of CFS. I asked myself why its like this and if its possible I would like to change it. thats why I started this thread

 

[judderwocky]

well, for my family, its come down to a matter of educating them... ive had to show them studies and press releases and things... so for me it just like people needed to have better access to that stuf... i find your comment insightful bakercape.... and i think the answer might actually have something to do with how much peole actually know about cfs that have it....
what i mean is... i encountered a lot of people when i was sending out links to the petition that hadn't even heard of cfs and were posting about their symptoms... i honestly wonder how much people actually understand about their condition.... i think as word of xmrv gets out its changing this though... its definitely making people curious

to be honest i never would have even thought i had cfs if my mother, who is a nurse hadn't mentioned the disorder to me... she told me i should look into it... i still remember looking at her and saying "No but i'm really sick" ... obviously i know more about it now....

 

[bakercape]

I know

It is really hard to get people to understand this illness isn't it. Thanks for doing so much judderwocky. I too am hoping if XMRV is the cause or a cause that people will get a retrovirus as they all are aware that HIV is a retrovirus. It's something that will saound a heck of a lot more serious then Chronic Fatigue Syndrome. The dumnest name for an illness ever invented.

well, for my family, its come down to a matter of educating them... ive had to show them studies and press releases and things... so for me it just like people needed to have better access to that stuf... i find your comment insightful bakercape.... and i think the answer might actually have something to do with how much peole actually know about cfs that have it....
what i mean is... i encountered a lot of people when i was sending out links to the petition that hadn't even heard of cfs and were posting about their symptoms... i honestly wonder how much people actually understand about their condition.... i think as word of xmrv gets out its changing this though... its definitely making people curious

to be honest i never would have even thought i had cfs if my mother, who is a nurse hadn't mentioned the disorder to me... she told me i should look into it... i still remember looking at her and saying "No but i'm really sick" ... obviously i know more about it now....

 

[Tuha]

Tuha, Your level of frustration must be very high. We hear you in regards to activism. However, do remember the people who have been ill 10, 20, and more years. They are still confined to beds, recliners, and their homes despite the e-mails and letters they've sent over the years. Yes, lives still remain in ruination. Don't you think a certain amount of disenchantment may creep in as the decades pass?

BTW, To advocate with a push of the button (and add a bit of your story, too), check out The CAA's Grassroots Action Center. But more than anything, I believe money talks and donations of whatever amount to research will really make an impact.

No I am not frustrated. I dont try to do a small advocacy for a long time and actually i am not someone who give up easily. I am just thinking how to improve the situation and I am not afraid to ask someone about a help, advice and little bit effort because I am convinced that this is our only chance to maybe get our life back.

I am sick already for 10 years. 8 years were quit good and with the advice of doctors I tryied to ignore it and to do a lot of things. i think if I would take 1 year of rest on the begining maybe I had a big chance to get helthy. then after 8 years I was so tired that I had to stay one year almost only in bed. now i recover slowly during one year. I think I can understand the frustrations of the people who are in the bed already for a lot of years because I will remember forever how horrible it was for me just that one year in bed and how horrible it has to be when you live like this some years. but i ask those people who are frustrated and have only a bit power to participate about their help (i dont talk about the patients who are so sick that they cannot do anything). I dont force them - I just ask them about their help and they can decide. i dont ask them because of frustration i ask them because of our last chance

 

[Tuha]

talking

bakercape - i think the only chance how to get the millions is simply started to talk about that we need them. this is our possibility - I think on the beggining it can be hard but there will be more and more people who will join us. just we cannot stop because then the people who did something they will leave easily.

judderwocky - your work is great, like this we can get also the patient with low energy if they will be interested in.

 

[bakercape]

The CFS oganization

IMHO the CAA is not doing the kind of grass roots activism that is going to change things. I hate to be blunt, but i've had some limited experience in community organizing and i can tell you they are going no where. If you want click of a button activism... that is why I created my action site... it just went live over the last few days. I wanted to make a site that would help people who were very sick make a blog, or sign/send petitions out easily, and did not have the energy to do it themselves. It has features to share and send information... right now you can make a twitter integrated blog simply by signing up. I'm going to be adding more themes in so that user's can customize their blogs and i'm adding in funnctionality (soon) for facebook and google connect. My hope is that it will provide a simple, easy structure, for people to quickly disseminate press releases, news, and petitions... ...


Is anything but grassroots. With a membership of only around 3000 and a CEO that makes 177,000 dollars a years it is the epitome of a long standing buerocracy which is not about change.
Real grassroot is from the bottom up not the topdown. I totally agree with your view.
They do have a good research program I do believe. But I could be wrong that they eliminated the designation for a persons donation going to research. There used to be a place you could check off a designation for research, advocacy and I believe adminstrative costs. Now they just seem to want general donations which could be going to pay longstanding enchrenched personel big salaries with no accountablity for results.. Not really a formula for change.

 

[Stone]

Your point is well taken Tuha, and I respect your courage in expressing your opinion on this sensitive issue to this group. I do understand completely that you are not trying to further grind down those who are incapable of advocacy due to their health status, but are attempting to encourage more activism on the part of those who can participate but simply do not for whatever reason. It's been a long roller-coaster ride and so many of us are simply run down emotionally from all the of the ups and downs and delays and the inappropriate (and dare I say immoral) political bovine excrement heaped atop this important and serious public health issue. It's frustrating and disheartening at times and we've all had a belly full of that already dealing with doctors, family, employers and the general public perception of us. I think it should go without saying that those who really can't upgrade their level of activism already know who they are and should NOT feel in any way criticized, but by the same token, those who actually can do more to participate also know who they are and should heed the call to action as far as their condition permits. Your words are timely and your intent to be constructive is evident. I'm glad you said what you felt you had to say and I hope it does encourage more action from those who simply need some exhortation and encouragement in the face of this emotionally wrenching period in CFS history. Obviously, those who can't do more shouldn't; those who can should keep up their efforts, and as I said, they already know who they are.

 

[bakercape]

I must correct part of wht I said

I went on the CAA web site and they do ahve a marking for choosing research for your donation. At one point a fellow PWC told me they had made it so you could not do that last year. They either changed it back or that person was wrong.

 

[jspotila]

I went on the CAA web site and they do ahve a marking for choosing research for your donation. At one point a fellow PWC told me they had made it so you could not do that last year. They either changed it back or that person was wrong.

I'm afraid your friend was misinformed, bakercape. The Association has always allowed donors to restrict their gifts, and fulfilled those restrictions. If a restriction cannot be fulfilled, the Association returns the money. Unrestricted donations are also encouraged to support not only the research and public policy programs, but communications (like the webinars, etc) and overhead (which keeps the lights on, etc). More information about structure and funding can be found here: http://cfids.org/cfidslink/2010/010607.asp

 

[ixchelkali]

Tuha, I think you are right, but I also think that it is not the people on this forum who need to hear this message. I believe that most of the people on this forum are doing just as you suggest already. They are writing letters to people in power and doing all they can with their limited energy and resources. I'll bet a lot of those votes for PANDORA in the Chase giving program came from the people on this forum. I think most of the people on this forum are already advocating for ME/CFS.

But you are right that if we don't do it, no one will.

There are many different kinds of activism. Some people are better at one thing than another. Some people do political lobbying, some people do fund-raising, some people talk one-to-one with neighbors, friends, and doctors, some people design and sell mugs, some people make socks for Sock It 2 ME/CFS, some people write to newspapers, some people write blogs to inform new patients, some people work through patient organizations. It all helps. I think it's important not to judge the way people make their contributions.

I also think that the time people spend on message boards like this doesn't take away from the time they spend in activism. Making connections with other patients is part of that process. It helps us to keep informed, to focus our efforts, helps us not to get discouraged or to feel helpless or hopeless. This is where we recharge our psychic batteries to keep up the fight. Other groups doing activism can hold meetings, seminars, and rallies, but many of our people are too ill to attend things like that, so this is the next best thing.

One of the questions we face is how to connect to the people who have this and haven't found their way to patient groups? People who may be dealing with this in isolation, or people who are just trying to get through the business of living? The only thing I can think of is through the media, but the coverage in the media isn't always helpful.

 

[judderwocky]

Tuha, I think you are right, but I also think that it is not the people on this forum who need to hear this message. I believe that most of the people on this forum are doing just as you suggest already. They are writing letters to people in power and doing all they can with their limited energy and resources. I'll bet a lot of those votes for PANDORA in the Chase giving program came from the people on this forum. I think most of the people on this forum are already advocating for ME/CFS.

But you are right that if we don't do it, no one will.

There are many different kinds of activism. Some people are better at one thing than another. Some people do political lobbying, some people do fund-raising, some people talk one-to-one with neighbors, friends, and doctors, some people design and sell mugs, some people make socks for Sock It 2 ME/CFS, some people write to newspapers, some people write blogs to inform new patients, some people work through patient organizations. It all helps. I think it's important not to judge the way people make their contributions.

I also think that the time people spend on message boards like this doesn't take away from the time they spend in activism. Making connections with other patients is part of that process. It helps us to keep informed, to focus our efforts, helps us not to get discouraged or to feel helpless or hopeless. This is where we recharge our psychic batteries to keep up the fight. Other groups doing activism can hold meetings, seminars, and rallies, but many of our people are too ill to attend things like that, so this is the next best thing.

One of the questions we face is how to connect to the people who have this and haven't found their way to patient groups? People who may be dealing with this in isolation, or people who are just trying to get through the business of living? The only thing I can think of is through the media, but the coverage in the media isn't always helpful.

its my impression there are a lot of people in the social networks... were just going to have to go in and ferret them out one by one... draw them in and equip them to do advocacy....

 

[bakercape]

While it may be true that

I'm afraid your friend was misinformed, bakercape. The Association has always allowed donors to restrict their gifts, and fulfilled those restrictions. If a restriction cannot be fulfilled, the Association returns the money. Unrestricted donations are also encouraged to support not only the research and public policy programs, but communications (like the webinars, etc) and overhead (which keeps the lights on, etc). More information about structure and funding can be found here: http://cfids.org/cfidslink/2010/010607.asp

they have allways allowed designation of funds to research they used to make that fact much better known to people they ask for support. I just got a request to donate in the mail and no where on the request is there any box you can check or information explaining you can designate or earmark where you want the money to go to. It just says please except my gift of 100, 50, 30 , 10 or other with boxes and methods of payment.
Also it's already set up on the website that your donation will be a general donation unless you drag down to an out of site category labeled research. You have to do some detective work to figure out you can designate and most people with CFS are not going to be able to take the time or notice this.

 

[judderwocky]

they have allways allowed designation of funds to research they used to make that fact much better known to people they ask for support. I just got a request to donate in the mail and no where on the request is there any box you can check or information explaining you can designate or earmark where you want the money to go to. It just says please except my gift of 100, 50, 30 , 10 or other with boxes and methods of payment.
Also it's already set up on the website that your donation will be a general donation unless you drag down to an out of site category labeled research. You have to do some detective work to figure out you can designate and most people with CFS are not going to be able to take the time or notice this.

why not just give money directly to the wpi. or any of the labs doing the research.