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A small frustration of mine

Discussion in 'Action Alerts and Advocacy' started by Frank, Jan 25, 2010.

  1. Dolphin

    Dolphin Senior Member

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    Thanks Koan. Make it easy for others, remind them again and again and again, and never give up are good points, IMHO.
  2. Koan

    Koan Be the change.

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    Tom,
    While we're on the topic of good points, so was my point about not assuming that people have seen something just because it's prominent in a sub-forum. You have to make sure it keeps bouncing up on the page of new posts.
  3. Dolphin

    Dolphin Senior Member

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    Yes, makes sense. Using one's signature to highlight things can also be useful. And one can always alter your signature from time to time (I might do that myself now).
  4. Koan

    Koan Be the change.

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    Yeah, I make sure to read people's sig.s because they are using them to such good effect. Small things can have a big effect.
  5. dipic

    dipic Senior Member

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    Koan, others: I didn't mean to insinuate that anyone here is lazy. I apologize for that. I was probably being a little less thoughtful and sensible than I should have been. To be honest though, when I was typing that, I was not just thinking about the ME/CFS community but people in general. Take the presidential election in the states for example: voter turnout is about 55% on average. Not as high as it should be in my mind.

    It's just disappointing and a bit confounding when, as others have noted, opportunities to help ourselves arise are not taken advantage of.

    You and others have brought up good points, many of which I can totally empathize with. That said, I can't help but feel disheartened when I hear that so few people have participated in something that takes the most minimal amount of effort and time. If you can post here frequently, surely you can click a link and a couple buttons to help out a cause.
  6. Kati

    Kati Patient in training

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    Koan :hug: :hug: :hug: :hug: You are Great. Take good care of yourself.

    Personally, I tried Igive for a little while. The search engine is terrible- and didn't lead me to the information I needed and so I gave up- I need to be efficient at what I do- as much as I can, so Igive was taxing my memory, my concentration and it wasn't worth the 2 cents, sorry to say (I contributed differently to research and support to our major organizations)

    I agree with the member that said it you want to organize some advocacy action, make it easy for people to participate in. Write a formatted letter where people just have to add their name, and perhaps a phrase or 2 about their personal experience. Some people are unable to compose 2 paragraphs. Make it easy for them. Also provide links with your posts- It prevents people to search for information- and helps them cutting the corners.

    Facebook can be good at sending out information to a large group of people. Especially if it goes straight to your mailbox. Yahoo group can be good but only if you can navigate through it and I have heard from many well people having difficulty finding your way- so if you are somehow cognitively impaired, people won't be able to sign up and use the group efficiently and will get them disconnected fairly quickly.

    I totally agree that we need to work together, and it is time right now to pass on to action, whether it may be locally or as a nation or a large community of PWC. This forum is one of the best place to share info and find out what's going on.
  7. Koan

    Koan Be the change.

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    Hi Dip,

    I totally hear you. It can be very dispiriting. I struggle with the same frustrations you do. Thank you for voicing them.

    It was not my intent to chastise you but, rather, to encourage you to just keep going because all evidence to the contrary, you really are making a difference and you really are not alone.

    :hug:
  8. Koan

    Koan Be the change.

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    Thanks for expressing this so well, Kati. It's really hard to know what taxes someone else beyond what is reasonable.

    :hug:
  9. Victoria

    Victoria Senior Member

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    I agree with you on this point, Rachel.

    It only takes one significant voice in the RIGHT ear, at the RIGHT time to make a difference. But sorry to say, I'm no Bob Geldof.
  10. Dolphin

    Dolphin Senior Member

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    I was thinking after I posted that if one wants immediate action, we should encourage people to sign up that they get the messages by E-mail. A yahoogroup is both an E-mail list and a bulletin board-type forum. But people who go "no mail", to read messages online like a bulletin board, will probably not get messages as quickly and if it is a low volume list, might not check it much. One can give people a direct link to sign up. The one thing people do most frequently is check their E-mail. So something that goes into their inbox is probably the best way if, for example, prompt action of some sort is required.

    ETA: But if we wanted to keep it to aboutmecfs.org, we could ask people to subscribe to a certain thread where an E-mail goes to their account. The thread could be said that only certain individuals could post to it. And that might be away to do it.
    You could even have separate thread's perhaps e.g. Frank's alerts, Kati's alerts, etc and only the named person could post a message to that thread. If people thought they posted good stuff, they could subscribe to that thread. Just brainstorming ...
  11. Frickly

    Frickly Senior Member

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    Parvofighter, islandfinn and I have a face book page and cause (see below) and we want to hear about any opportunities to help further research with regard to XMRV. If we can get organized here then we can also post action items on our facebook cause. We are also working on a website but it is going slow due to the problems that many listed above. However, we will just keep doing what we can. Please feel free to contact me if you see an opportunity to further research in this regard.

    Take care,
  12. Robin

    Robin Guest

    Yeah, it is a pretty bad search engine. I just run a few searches here as a habit; I don't use it to really find what I need. It's like click to give - purely manual! I don't get upset if I miss my search quota and I even took a few weeks off while I was stupefied with a sinus infection! It's a great way to fundraise for those who can't afford to contribute financially out of pocket. That being said, as you point out people need to find the way that is the most comfortable for them to participate for our cause! And because many people are too sick to help out at all, those of us with a little energy to spare will do what we can. :)

    The CAA has a cool little wizard which send letters to Congress and others, here. You just click and fill in your information, and a there's a space to add personal comments inside the form letter.

    I wrote up a Q and A for Igive to help people who may have questions. I sticked it on the top of this forum.
  13. Wayne

    Wayne Senior Member

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    Advocacy Difficulties

    Hi Koan, Hi All,

    Thank you Koan for mentioning many of the above scenarios. I myself, as someone who went through 20 years of "gradual onset CFS", followed by a 1984 experience of "sudden onset", have gone through all of the above except for taking care of children.

    My own experience has taught me to never assume what might be easy for another person with ME/CFS. I could easily have made assumptions during my gradual onset phase as to what "easy" things I would "always" be able to do. Then my sudden onset hit so hard, and everything changed.

    I don't even know what a sticky or sub-forum is. I suspect others here don't know either. I've still not come close to understanding and competently navigating this board. And this is easy (used to be a corporate database administrator) compared to the way I feel when I find myself having to follow directions or getting less familiar things organized in my mind.

    When I read Frank's first post, and started to think about what kind of effort it might take to delve into some of the things he mentioned, I could feel it starting to bring me to tears as well. And I'm a man, I'm not supposed to have that happen!:Retro smile:

    Most "simple" things can easily become overwhelming for me. So I prioritize. My relationships, my spiritual practices, etc., are my highest priority (and they sometimes get short drift).

    I see easily see how very worthwhile it would be to do more advocacy, but I simply don't have the wherewithall at this time. I do appreciate this post however. I will try to keep some of the things mentioned here in mind as I go forward. Perhaps I can plug in better some day.

    Thanks for your post Koan. You made other good points as well. And I always appreciate your presence on this board.

    :hug:

    Hugs, Wayne

    ETA I thought my post was going to be right after Frickly's. Just saw that Robin sneaked in ahead of me, over 30 minutes ago! I can't believe I worked on my post for over 30 minutes!
  14. Frank

    Frank Senior Member

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    Great feedback everybody!

    To extract the important things:

    -We need a worldwide mailing list, this could be an add-on action page right here at phoenix rising (I would be willing to set that up).
    -This page could be in the same way as the XMRV global action group page on facebook, but i think contact via mailing could be even more direct.
    -Subscribing to that page should be very easy and straightforward
    -Moderators of that page should communicate very clear about what steps to take to support some cause (voting, mailing, searching)

    Any thoughts missing..?
  15. Frickly

    Frickly Senior Member

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    Frank, I think this is an excellent idea. When I create an action on facebook I have the option to send that action to all our members within facebook or to email them directly. If something simular could be set up here then XMRV global action could just be an extension of this in order to reach more people.

    Wayne, don't feel bad. Islandfinn and I knew almost nothing about facebook in the beginning of December. We learned quickly but it does take a toll physically.
  16. sproggle

    sproggle Jan

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    :victory::victory::victory: I second that Rachel 100% very well said:victory::victory::victory:
  17. _Kim_

    _Kim_ Guest

  18. Koan

    Koan Be the change.

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    I second Sproggle seconding Rachel! (Or, maybe I'm thirding Rachel :tongue:)

    We should not underestimate the impact of an intelligent, reasonable, public (as this is) dialogue about ME on those who doubt our reason.

    What Rachel said!
  19. Dolphin

    Dolphin Senior Member

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    Not donating to the cause is the norm, not the exception, for people with ME/CFS

    One frustration I have is that many people never do anything.
    I know this from Ireland.
    Apologies I have said this in a few places and forget where.

    Over the last 13 years, I have sent a sample newsletter to in the region of 5000 former enquirers and former members of the group I help run (which is all-volunteer) asking if they would like to join or if not, would they consider donating to the group or specifically to research.
    Approx 400 have joined and many/most of them will have gone on and helped the cause in some way e.g. donating, fundraising, awareness-raising, reply to some negative media coverage, volunteering within the group.

    Of the others, only three donated, all mothers. Quite a few of these people (hundreds) got two letters.
    And for most of this time, there were no other ME groups looking for money from them in Ireland and donating to other countries was difficulty (and talking to say ME Research UK, they weren't getting any random donations from outside the UK). (I accept in the last few years there might have been the odd donation abroad).

    Looking at what is raised in other countries, I have seen little evidence that it is any different in other countries.

    So I can well accept that there are people not in a position to donate.
    But there is a definite trend, most people don't donate.

    And also it seems, one can't depend on people to donate when they might improve and get back to work and their finances have improved as was undoubtedly the case with some of these people. (The majority of these were written to 4-12 months after they first contacted the group but we also went back on old records and then at one stage didn't write to people for years so many (1000+) got letters 2-10 years after they first contacted, when we know some of these will have gone back to work etc).

    So the conclusion I came to is that money needs to be raised from the people who are currently struggling either through they or their families donating and/or they and/or their families trying to fundraise.

    I also feel asking people to give 1% of what they spend on treatments is not unreasonable. It adjusts for the different disposable expenditure people have and also for the importance the illness has in their lives. I give my reasoning at: http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0411D&L=CO-CURE&P=R3124 "How much should one give to ME/CFS research? - what about a target of 1% of what one spends on trying to get better?"
    I think the Pocket Money Fund page has some interesting points on the issue: http://www.pocketmoneyfund.org/
  20. Good idea Frank, also a simple way would be to get some central charity organsation to maybe a make a video and have a suggestion that ME CFS patients around the world give $10 each for 1 day a year.

    Part of the problem is, people are broke and also they want to believe their money is going to a 'true' cause into helping them get better.

    The WPI do this, but they could be a little more vocal maybe? It's hard as they don't want to sound greedy or scare people way.

    Posisbly the way for the WPI to make further money is to push more and more they are a non profit organisation?

    As you said, the key is getting an organise group, and in my view - a centralised group that is well know and can be trusted by patients.

    Just think how much money could be raise for research, if each person on this forum saved up $100 each, and paid that per year by Direct Debit etc.

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