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

[bakercape]

personally

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

Thats what I have done this year. But I do think the CAA has a real nice research program going on which was set in motion before the XMRV discovery. I'm hoping there next go round they will fund an XMRV study.
I just have not allways agreed with there advocacy methods. That's why when I give to them again I want to make sure I can earmark it to research which obvously you can still do.

 

[Tuha]

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.

Stone, thanks for your post - it always give more courage the emails like this. I know that this subjet is really sensitiv and thats way i was prepared for a lot of bad emails but except 2-3 I got only possitiv answers even from the sickesst - actually I wouldnt care about bad emails because i know that my thread was written in constructiv way and I didnt want to attack someone. End even if i would get thousands negativ emails and there would be some people who would change their opinion about activism - I would say even after personal attacks it was usefull.

actually your short email says better about the problematic like my long one. in my reactions on the first emails I didnt exprime me good. Of course it would be great if also the sickesst patients could join us but if its not possible its 100 % ok but how you say its much more about the people who are able to do this kind of small activism and they dont do.

its a bit pity that untill now there was no reaction from these people. i think their reason are quit clear but they should exprime theirself. I understand that maybe their are frustrated from the bad situation which take already for a long time but I think we have to try it again and again.

 

[Tuha]

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.

I am not sure that a lot of people from this forum voted. i will take a small number analys. Pandora got 15OO votes. I think that each patient brought at least 5 votes in average and I think it was even more but lets be a bit optimistic. So we can say that 300 patients voted. The campaign was really huge - a lot of cfs forums even in a lot of foreign countries, facebook sites, mailing, slist,....ok, lets be again optimistic so maybe 150 patients were from this forum. I checked and on this forum are aroud 800 activ members and 2200 members (actually what is the different?), one Franks thread about Pandora voting red around 4 700 people (here I have one more question - if the same thread read one person more times - does it count only once or more times? So I think even on our forum there are really big reservse.

I agree that the people do also other activism like writing letters, fundraising,...and its great and not everyone can do these activities but then there are activities like voting, signing petition,... and almost everyone (expect the sickesst) can do it but the results show something else. so i didnt say that the people who are not supporting some activities that they dont do anything - i wanted to say that we have to try to support the most activities possible if we want to move.

I also agree that its helpfull and also funny to talk for the hours about cfs topics. we need to spend our times somehow and its great if we are able to manage a bit fun in our life. But what i would say - just stop sometimes to discuss for 10 minutes and join a cfs action if there is one for a moment and then you can again discuss for the hours.

 

[Tuha]

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....

I also thing that there has to be a lot of people in the social networks. when you have to spend the most of the time at home - the things like internet is sometimes the only way how to have a bit fun. So I think almost all cfs people expect maybe the people with big financial problems have internet. So this is the easiest way how to communicate. The problem is that there are so many different forums,...and so the people are divided to different forums. Then it always take forever to informe all the people about an action. I think the best way would be to join the most people possible in this mailingslist which exists already:
http://action.aboutmecfs.org/

there are already 330 people - not too much but already a good beginning. it would be then so easy just write one email and thousands people whould know about an action. Also I think maybe not everyone check a forum or facebook page every day but emails you check the most regullary. So if you can just make a publicity of this mailingslist everywhere.

Also maybe a good possibility would be to cooperate with cfs doctors. for example they could make a small announce about the mailings list, this forum,....in the waiting room and so like this we could informe about these activities also the people who doesnt know about. I am visiting prog. de Meirleir and I think I red that he has between 3000 -4000 patients visite a year.

and we have to talk and talk and talk to the others and try to get them for the support. i know that it makes you sometimes tired andit can be even annoying but its necessary

 

[citybug]

. 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. My hope is that it will provide a simple, easy structure, for people to quickly disseminate press releases, news, and petitions... ...

I think this is great. I just wrote about what h p alliance did in thread about pandora win with twitter (tired now please check there). and contacting all local groups.

Can you add the petition to change cdc definition, next to other one? and there's a third one in the CDC petition thread for europe.

bakercape - i think the only chance how to get the millions is simply started to talk about that we need them.
judderwocky - your work is great, like this we can get also the patient with low energy if they will be interested in.

I think it is going to grow gradually. there weren't advocacy sites that i knew about before. mostly treatment oriented. we need to keep branching out. i am mostly interested in funding wpi until others fund xmrv. still we can post the caa letter writing link.

A lot of people have been writing letters the past couple weeks. This is great action. We just have to keep linking with more groups and having clear things people can do. a sticky with petitions and letter samples. also we don't see everything here. there are people not on computer writing congress or calling cdc right now. We definitely need a lot more! but I think it will be catching.

 

[taniaaust1]

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....

I liked judderwocky's post

Educating others is a huge key for us and that is where i spend my time as till everyone world wide understands more about this illness (my whole life basically revolves around three sites, here and 2 others, anymore than that and i'd would be too much for me). we will not get the support the CFS community needs.

Many dont have anyone to help them as far as the CFS goes (i myself dont) so they cant even get themselves helped when needed, let alone get another to advocate for them. Its all about education. Many cant get helped or dont help as they dont believe in CFS.

There is so much work needed in all kinds of area around CFS. (Ive also given my time over the years to CFS studies..and gone to great efforts to partake in them even thou that made me crash).

 

[taniaaust1]

. 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.

the statistics are 25% of us are extremely sick (i didnt make the number up)...but yeah there is a lot of others who may not be so. Of those things like "burn out" as another said (but she put it differently) is an issue. One cant "fight" all ones life... so many of us have been ill for a very long time (in my own case 13 years) and we fought and fought when we were able.. only to get no where. Its very disheartening and only the very strong emotionally can keep on doing it.

Those who have had CFS for a LONG time.. have already seen so many battles lost.
..................

i felt critized by you (not sure where that post is now or maybe i took post more harshly then it was) that i didnt vote as i have a thing about facebook. I'll try to explain it further.

If i got on facebook even using a false name, i then would of ended up getting into a shit with my family and others as they wouldnt understand why i refuse to have a facebook account (even a false name one) when i refuse to keep in any contact with them via facebook as they are always begging me to make an account and do. Im already having a hard time with my own family pressuring me to have a facebook account. (Im cutting off my own family to preserve my energy and to give me the energy i do have).

For me to do that.. Due to then the expectations that then would be placed on me due to those i know not understanding CFS/ME, that would end up injuring my health (and when i crash i really crash.. I could end up in hospital!! ive had to be ambulanced there before due to the CFS and when i crash.. i sometimes take 2-3 years to recover). I protect my health, my energy by limiting my contact with people... and that is extremely important to maintain the amount of health ive gained back.

So try not to judge those who cant do things like you do. (the fact i did encourage some to vote from elsewhere.. maybe of been how we ended up getting that money which could end up going into CFS research).

(it's taken me days to reply to that comment to me... as i was struggling just to do a couple of sentences and today is the first day in several days where im able to think easily).

im moving on now.. no hard feelings.