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New, Improved Project ENOUGH!!! thread

Discussion in 'Action Alerts and Advocacy' started by awol, Aug 13, 2010.

  1. BEG

    BEG Senior Member

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    Is she cured? How on earth can she stand up to do that? She is conveying the wrong image for her very powerful message.
  2. awol

    awol *****

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    I bet it took a lot out of her. I don't think she is conveying the wrong message at all. First of all, she doesn't look all that healthy to me (no offense Rivka) and second of all, the majority of us with this disease really do LOOK quite functional and that is part of why we have been so easily dismissed.

    If someone wants to help someone who is more visibly disabled to do a public protest that is fine, but they certainly won't be able to do it alone. We would need numbers for that. So how about some people sign up to help with a demonstration?
  3. BEG

    BEG Senior Member

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    And neither do I. I thought her message was brilliant. Perhaps you're right about looking functional but not actually being functional as a good image. Conveying that "not functional" image is a bit difficult though.

    Back to topic . . .
  4. awol

    awol *****

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    indeed! Difficult. :)
  5. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    I would agree with AWOL here, I appear "normal" but if you make me do "enough" physical/mental activity, and you will notice that I slow down mentally also!

    Yes, brilliant message and inspiring, I hope to do what I can once I get more of my ducks in a row!

    PS I thought she seemed to have some cognitive impairment.
  6. awol

    awol *****

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    UPDATE: All the news recently has tired out the teams. The more tired, the more help needed!

    Volunteer to do what you are capable of doing, in a collaborative effort to help yourself!!!!
  7. Dolphin

    Dolphin Senior Member

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    Although don't think anything has been submitted?
  8. Dolphin

    Dolphin Senior Member

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    Hope you can help, Impish. Rigour is always welcome in my book.
  9. awol

    awol *****

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    Small detail! We should put them up on the Wiki.
  10. taniaaust1

    taniaaust1 Senior Member

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    awol.. is the wiki at the other site.. assessable from the wiki here?? or do people need to be members to access it???

    im hoping the wiki's are accessable to anyone even if they arent a member. If the wiki at the other site is accessable to anyone and you put up a few letters people have sent.. i'd like to link them to relevent things on the wiki here. eg a good example of a letter calling for why more funding should be put into XMRV or CFS, may be helpful to those who want to do letters but have no energy to make one up themselves from scratch, if linked to the Australian Advocacy thread at PR.
  11. awol

    awol *****

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    hi Tania,

    the Wiki for the other site is publicly available, to read, however if you want to reuse content from there you have to be a member, and you cannot re-post it here. You would have to link to it here. At least, that is how I understand the rules.
  12. taniaaust1

    taniaaust1 Senior Member

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    That's what i wanted to do with that.. link it to some letter examples at the other site.

    Someone from other site, did tell me she didnt mind me get some stuff out of her stuff thou and visa versa, her and i were discussing this recently.. i guess if that is going to be a rule breach.. i'll have to ask her to see if she minds helping me a little with the wiki at PR on a couple of little things if it comes to that (as far as i understand both her and i want to help the CFS community in general). Being her own stuff put together.. she would be able to post a little of what she's found elsewhere.

    or is what is posted at the other site then OWNED by the other site?? and we then aint allowed to put the info we've done or our own posts elsewhere???
    So are you saying that posting at the other site take away a persons owership of anything they post??? and they cant allow another to copy their stuff??

    ah so one can reuse it if one is a member but post it anywhere but HERE?????

    i dont understand why the other site would not want to help all with CFS and actually make it harder for those with CFS to gain info.

    Why are those who want no part of site wars.. being made to feel like they are being dragged into them....
    **sorry im so touchy, ive had a bad week and was in hospital yesterday and highly stressed, i just feel like the sites should be working to help the whole CFS communities, not jsut thinking about themselves... we are all in this together and as far as i see have some overall goals and aims**

    i spend every ounce of energy i have trying to help those with CFS/ME and on the CFS situation. It extremely frustrates me the walls put up even within our own communities which help stop people getting all the help they could get.

    i dont understand why people have set up a site which is said to want to help the community.. yet on the other hand.. not want to.

    (this is probably my Asperger's coming out.. i dont understand anything except when it's black and white.. and your own site rule now is confusing me esp since ive already talked to the one who's stuff i asked if i could copy and got permission to do so.. i thought it was created to help people and get something done about the ME stuff).
    ...........

    I thought the idea of the other site was encouraging advocacy and other things.. how is it encouraging advocacy when there is a ban on sharing on info??? which even bars people from sharing their own info and creations!!

    (i will try to get my head around this but im right now extremely frustrated and confused about the whole thing.. about a site saying they want to help those with CFS but then doing things which is against this principle and actually STOPPING info).
    .....

    sorry awol.. my post isnt directed at you. I hope those from the other site will help me understand why me and another cant share our info and work as we've spoken about... and of explain how (blocking info to those who have CFS/ME and make it harder to find) this is right.

    .....

    ive not a clue if my post is over the top or not.. if it is can someone please pm me so i can remove it and try posting it another way. Thanks.
  13. awol

    awol *****

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    All members own their own posts and can do what they like with them. The reposting rule applies to other people's posts and to the collaborative content.

    Tania, and everyone. PLEASE stop creating a war over nothing by treating the other site as if it is some kind of pariah. The rule has nothing to do with this site in particular, it has to do with ensuring that people DO, in fact, control their own content better.

    There are reasons, and very good ones, why the project is being coordinated there. This does NOT IN ANY WAY imply that we are not interested in helping the entire CFS community, and as the project coordinator I strongly resent the implication.
  14. taniaaust1

    taniaaust1 Senior Member

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    thank you for trying to clarify.
    so if i got told i could copy something by the one who did post? is that fine as they put the work into it and posted?? i dont want to take someone away from the other site who is doing much work there.. by asking her to post some things for me here.
  15. awol

    awol *****

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    You would have to ask the site adminitrators there as these are their rules. But I am sure that if you give adequate credit, and link directly to the original, and have permission, this is fine. However you would then need to make it clear in your post that it could not be freely reposted elsewhere.
  16. awol

    awol *****

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    I guess what I would like to point out is that the other forum serves as our meeting room. When PANDORA developped their project, did they have full community participation? No. Did they make all of their meeting minutes publicly avaliable? No.

    Their project was introduced on this forum and on facebook as a complete idea, that people could choose to fund or not. And yet at no point were they EVER accused of being uncollaborative. The accusation that somehow we are withholding important information by choosing to have our meetings in more privacy does not stand.
  17. taniaaust1

    taniaaust1 Senior Member

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    it does thou make it harder for people to access and people then miss out on things. its not like the CFS/ME community is a well one and can go everywhere doing research to find the answers for things. im thinking about those who are very sick. Ones much sicker then you are me or can only be online for maybe minutes and need to find their info fast..

    sorry i dont know what uncollaborative means... not coorperative? well it isnt making my task easier on trying to make info easily accessable for all with CFS. this is nothing about me.. its about others who are extremely sick. The group i was once in... i used to only been able to spend MINUTES online (once i was at a point where i could get out of bed)... so figure that things in many places online are better then just one place.. as they are easier for people to stumble upon (one is really "stumbling" when one is that sick).

    ?? i havent accussed anyone of choosing to have meetings in privacy?? sorry i dont understand??

    What i do understand is that one who wants to help others with CFS/ME .. and has already spoken to another about using that persons work... is now being told no i cant as its at your site. So via that.. you are not allowing people to share what they have done or work together.. or help each other at different sites.

    im not talking about stealing minutes from meetings. I wasnt even aware that there were any kind of minutes at the site.
  18. awol

    awol *****

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    I am also sorry if I misread you. I am frustrated by this discussion because there seems to be an effort on your part to have me move the actual project here. That will not happen, because key people will not come here. I myself do not like coming here because I do not like many aspects of how this forum works, and I do not like seeing attacks on Mikovits that endanger good science, and that devalue her incredibly important contribution by burying it under completely unsubstantiated accusations and inuendos. So, you see, I have my reasons, and so does everyone else who chooses to avoid this site.

    As for information being accessible - the news section is fully public, as is the Wiki. The Wiki is in development and promises to soon become a very important resource. This can be linked to directly in discussions on ANY forum. So I really don't understand at all where your frustration comes from. We are not withholding any information. What we are trying to do, is to provide a semi-private and relatively safe, collaborative meeting environment there.
  19. Dolphin

    Dolphin Senior Member

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    If there were letters with references that were delayed (i.e. were suitable for submission but hadn't been yet), for me it would be a small detail.

    But I've not seen anything that is close to being suitable to being submitted e.g. one journal has a 500 word limit and I saw a piece with over 800 words with few if any CFS references. It is better than nothing but what I am really hoping for, as I said in the other thread, are letters that have a reasonable chance of being published. I am willing to help as able. But not on a letter, for example, that is over 800 words long. If it got down to 550, I could see if bits could be shaved off. But I'd prefer something 500 words or less.

    I don't mean to complain about any one attempt but for me, as I say, I'm not just looking for posts that look good on a forum, but have a reasonable chance of getting published even if they need a little work.
  20. awol

    awol *****

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    Absoultely. The goal is always, first and foremost, to have them published.

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