Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data
The Microbe Discovery Project outlines an ambitious new study by top researchers that has collected patient samples, but needs desperately funds to complete the work.
Discuss the article on the Forums.

Turn ME into WE - Join the New Emergency Action List

Discussion in 'Action Alerts and Advocacy' started by Frank, Feb 13, 2010.

  1. Frank

    Frank Senior Member

    Messages:
    848
    Likes:
    10
    Europe
  2. blackbird

    blackbird caged.

    Messages:
    100
    Likes:
    1
    UK
    Nice.

    I've been away a while, still catching up on everything here.
    When I was last about there were a few advocacy ideas, and I was trying to get 'US' to work.

    ....and all the time what I really needed was WE.
     
  3. sproggle

    sproggle Jan

    Messages:
    235
    Likes:
    45
    Teesside, England UK
    Great idea, I'd thought we needed something like this myself and was thinking of how we could best connect all the members of the larger ME community. We are scattered across different forums and support groups (as well as the world) but I think there is also a lot of overlap and potential for intercommunication and joint action.

    We need to make advocacy as ME friendly as possible. The idea that came to my mind was to creat a 'network' For example I emailed a link to my friend with ME in Norfolk and she has multiple friends who live locally who also have friends &family etc. In my example she was very grateful for the quick link I sent her &was able to contribute where otherwise she would not have done. Also, of course this also led to multiple other people receiving the email and taking action.

    This made me think such alerts which could be easily forwarded would be a fantastic idea -I'm so pleased you have made this a reality!!

    I also think there will be a lot more people who would want to recieve such alerts via text message as logging onto a computer is not something they manage regularly, this and the fact I was unsure exactly how you would go about creating a 'network' and knowing the reach and scope of it were two stumbling blocks to my idea.

    We definitely need to channel the already frequently online community better but to get anywhere near the loud voice we need for change I believe we also need to harness the less active sufferers and their friends and families. A text message saying there is an opportunity to take action by supporting a letter or signing a petition would be an excellent way to include the wider ME community.

    Again I have no idea how to set something like this up, costs involved etc. But couldn't we have a system where those who signed up agreed to pay the 10p (of their equivalent) for the text message thus negating the need for funding of such a scheme? It would be on the understanding that they would only recieve a select number of messages and only when important opportunities were presented etc...

    Jan xx
     
  4. Advocate

    Advocate Senior Member

    Messages:
    515
    Likes:
    71
    U.S.A.
    How could anyone resist such a gorgeous logo?
     
  5. Nina

    Nina Senior Member

    Messages:
    221
    Likes:
    17
    Great idea, Frank. I have subscribed and will use this to forward important info to the national groups I belong to (Germany). Thanks!!
     
  6. Frank

    Frank Senior Member

    Messages:
    848
    Likes:
    10
    Europe
    @ Jan: Good feedback. But i don't quite understand your last paragraph. Do you mean that ppl should donate to become a member ? This project has no intention of collecting money out of the pockets of the patients.

    Nina: There's a possibility of making subgroups for people who speak different languages. In the future this could be worked out and as time passes by i'm sure we'll make it more Global.

    There's much work to be done, but in the meanwhile we'll start collecting adressess, so tell a friend ;)
     
  7. Jenny

    Jenny Senior Member

    Messages:
    1,359
    Likes:
    496
    London
    Good idea Frank.

    Just a small thing - would it be possible to correct the typo in line 5 - opportunity's x opportunities?

    Sorry to be pedantic, but it's important to make sure nothing marrs our professionalism!

    Jenny
     
  8. Frank

    Frank Senior Member

    Messages:
    848
    Likes:
    10
    Europe
    Ok Jenny, the layout needs some adjustments too, but we'll get there.
     
  9. Dolphin

    Dolphin Senior Member

    Messages:
    10,671
    Likes:
    28,172
    Well done on making this happen, Frank.

    In Ireland, mobile phone companies give 250-300 free webtexts per month. To the receiver, there is no difference. You send them through a website.

    Lots of people never use them so I use theirs for ME purposes.
    It can only be used for texts within the country.

    Some other places give smaller amount of texts e.g. 10 free texts a day (which is 300 a month but not so good if you want to do bulk tests all at once). Maybe such facilities are in other countries?
     
  10. anna louise

    anna louise

    Messages:
    1
    Likes:
    0
    "A small group of thoughtful people could change the world. Indeed, it's the only thing that ever has." Margaret Mead

    I read this quote some time ago and there is sooo much truth to it!

    I am joining

    Anna Louise
     
  11. Frank

    Frank Senior Member

    Messages:
    848
    Likes:
    10
    Europe
    Congratulations all ! The ME/CFS emergency action list (new name) reached 100 members after two weeks. And this without making this mailing list public besided on this forum. This however is going to change and we will go for a 4 digit number! So 1000 members by the end of 2010 is the goal.

    Also thankyou all for your feedback, i made the nescessary adjustments.
     
  12. Frank

    Frank Senior Member

    Messages:
    848
    Likes:
    10
    Europe
    /////////////////////////

    For public release:

    Do you want to know how to support biomedical research for CFS/ME/FM FREE of charge
    and with little effort on your behalf? Learn more at: http://action.phoenix-cfs.org/
    [​IMG]

    ////////////////////


    If possible the words FREE and little effort in bold and a link with the image.
     
  13. Anika

    Anika Senior Member

    Messages:
    148
    Likes:
    28
    U.S.
    I had it on my list to sign up, and finally made it!

    My only thought, is that we sometimes need "critical" not just "emergency" emails. Probably more critical than emergency, in my experience. So, I hope the action list won't be limited to emergency or life support actions.
     
  14. Frank

    Frank Senior Member

    Messages:
    848
    Likes:
    10
    Europe
    thanks anika critical seems like a better word
     
  15. Frank

    Frank Senior Member

    Messages:
    848
    Likes:
    10
    Europe
    I wanted to spread the word about the action list trough co-cure, here's the response i got from a moderator:
     
  16. Frank

    Frank Senior Member

    Messages:
    848
    Likes:
    10
    Europe
    weird because the co-cure website itself mentions "Co-cure ME/CFS & fibromyalgia"
     
  17. Dolphin

    Dolphin Senior Member

    Messages:
    10,671
    Likes:
    28,172
    LK Woodruff isn't a moderator. This was just an individual replying directly to Frank. This didn't go out to the 1000s of people on the Co-Cure. She has sent me quite a few messages in my time.

    I think Co-Cure is a very good list. Messages are pre-moderated. It is a low volume list so it is possible to keep up to date with what is happening. Messages are often forwarded to other places.

    LKW has no power as such to stop you posting again to Co-Cure - people can keep posting.
     
  18. Cort

    Cort Phoenix Rising Founder

    LK will hound you on that for ever if you let her. That is her thing....Unless you have the energy for it I suggest not to get engaged.
     
  19. michal

    michal

    Messages:
    23
    Likes:
    0
    Cau

    I think this emergency action group could be really usefull. If there is an action, you write just an email to all members and they can react fast - its so easy. I just checked how many members has this group - the number is 172 personnes and the aim for 2011 is 1000 members. I ask myself if its a lot. I think there is around 17 mil. of CFS patients and we are able to collect only 172 personnes for some months!!! I think its nothing. How do we want to react to something important?! We miss a lot of possibilities because of our passivity. Yeasterday, there was an action on iGive for 5000 dollars. I dont want to say now - lets go to make a big group and to "steal" all money possible for each action because I think also other organisations needs money for their activities as well but for examples yeasterday 5000 dollars wasnt spent - so just a pitty. I also checked the petition for funding NeuroEndocrineImmune (NEI) Center in U.S. Till now, there are 495 signatures. Their aim was 100 000 signatures but I think that they changed it to 10 000. Everything goes so slowly. Maybe someone will say that I am too impatient but I think we have to do more for publicity of this group to get the most members possible. Then we dont have to make a big publicity for each new action, petition,.. - we just write about the action to all members and they can decide if they support it or not.
    Now I am also speaking with the people from European Society for ME (ESME) - www.esme-eu.com
    There are a lot of renowned CFS researchers like de Meirler,...
    They would like to increase the CFS research and to do more informations about CFS. Now, they are trying to get money for XMRV research in Europe. So I just asked them if we would try to do a petition to help them to get some money from some grants. I am a bit working in this area and in Europe are a lot of grants. ESME liked my idea and they would like to organise it somehow. Maybe I will need a bit your help - I will let you know when I will get more informations from ESME about their imagination.
    So if the emergency action group will have a lot of members - also the future actions like petitions would be much easier - or do we want to lose more time? - its not the same if we need for getting 10 000 signatures one month or half a year. We already lost a lot of time. So lets go to make some publicity to emergency action group on facebook or I think there is in fast each country a CFS group with a webside - so because of language a personne from each country could contact the CFS group and to make a publicity for the emergency action group. Or some other ideas? Ok, I am going to make it now in my country.
     
  20. Frank

    Frank Senior Member

    Messages:
    848
    Likes:
    10
    Europe
    Michal,

    I respect your points of view. The list was made to separate the more active ME/CFS patients from the passive. I think we'll grow, but slow. We'll do more campaigning in the comming months. Know that some patients, don't have internet, don't have the ability to use internet or just have no earthly idea we exist. Maybe we'll expand the list to the all neuro-endocrine disorders, if sience goes in that direction, we'll see. We got to get the word out; altough people don't have a lot, they still can help in some way.

    This iniative is still at a rather amateur level, but we'll keep working on it. If you have any suggestions so that the list can be more appealing to a lot of people, feel free to share them.
     

See more popular forum discussions.

Share This Page