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A central mailing list for petitions?

Discussion in 'Action Alerts and Advocacy' started by cigana, Jan 23, 2011.

  1. cigana

    cigana Senior Member

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    Hi,

    Does anybody know if this exists? If not I will consider learning how to set this up myself (any suggestions appreciated).

    It seems silly that we rely on various people to advertise ME/CFS petitions on various forums, when ideally we should be able to add each petition to a central list which gets emailed out to all patients/advocates every week (say). This could play to our only strength - there are many of us!

    Thanks,

    Mark
     
  2. Marty

    Marty Senior Member

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    Cigana, I think you have the kernel of a great advocacy idea; thank you! We must find a way to keep our issues alive, and our (only) strength is numbers. I would add that we must stop writing letters; we need petitions where someone writes a brief and cogent and targeted idea that we can vote on easily and send to the targeted person. That person would receive one email that says "100 people disagree with you." A weekly email of choices on which to vote would allow any individual or group to formulate a targeted idea and people could choose what ones for which they want to vote. The one thing we don't want is for people to keep writing long letters. Many people have not yet learned that writing long letters to CDC does nothing for the cause, and it can put a patient out of commission for days. Just look at where 20+ years of letters has gotten us. We are actually worse off than we were at the beginning 20 years ago; now the CDC is actively publishing psychobabble journal articles about us.

    A weekly email of simple advocacy actions sounds fabulous to me. You are right, cigana; it uses our strength of numbers without straining us. With one caveat: it must be short, efficient, and simple. We must be able to send a message without exhausting or confusing ourselves. A petition is the way to do it, and a Geeky patient who still has their cognitive ability could organize the technology and a couple of others could edit the petitions. They must be simple and short and targeted.

    I will send your idea to Medfeb, who is a healthy mom on another thread (http://forums.aboutmecfs.org/showth...se-to-Unger-s-appointment&p=152113#post152113 )who is looking for ways to help. I think an organized weekly petition vote keeps topics alive, unlike most of our other actions which have been one time shots. For instance, campaigns against Dr. Unger's appointment, Dr. Jones inclusion on the committee, the CDC's inclusion of British shrinks in US policy making, etc., flair and then die. Dr. Unger, now in January, is continuing in relative peace and was appointed in spite of even the doctors' opposition and their letter writing campaign.

    The weekly email might contain several options, any or all of which a patient could easily vote on a targeted petition. The votes could be tallied and reported to the email subscribers when they are sent to the target of the petition. Another strength that this uses is our variety of groups; no one has to agree with everyone else, yet the advocacy will still happen and on a regular and sustaining basis.

    I don't see this as the only advocacy that we need, though. It does not fulfill the criteria of causing a consequence to the targeted person. They are not elected officials; they don't have to respond to the wishes of their constituents. We would only be sending an opinion, but in a short and polite way that "The M.E. Patients" object or support a singular action. It's not one group with all their infighting; it is a simple point from "The M.E. Patients from Around the World". It is a small effort with a small effect, but it is better than nothing, constant, and is something all the patients who subscribe can do. We still need the war battles, like the lie-ins, the protests, the media exposes, and publicity about the blood bank exclusions, and the name change demands. But I'm excited about this idea, if someone can carry it out.
     
  3. cigana

    cigana Senior Member

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    Hi Marty, thanks for your reply.

    I too have started to wonder about the efficacy of writing letters. If we've been doing that for two decades and nothing ever happened, why do we expect it to work now? I think new techniques are in order (that is not to say I don't deeply appreciate everyone's efforts).

    I definitely see your point that this won't cause the targetted person to actually do anything. And that is really frustrating. The AIDS movement had a lot of healthy homosexual men who were prepared to march, we don't have the luxury of being able to do anything physical. But nevertheless, it is a way of quickly and easily increasing the number of people on signed petitions.

    I had in mind a simple email with a list of links to petitions, of the sort you find posted on this forum - did you have something slightly different to that in mind?

    What always puzzles me is why we can't get millions of signatures on these things! There are a million Americans ill with ME/CFS - if they and two members of their family signed each petition, that would be 3 million. Why doesn't that happen? Some are ill, most are probably too lazy (?) and others don't even realise there's a battle to be fighting (they think there is nothing that can be done for ME/CFS). Then again perhaps they are all active but through so many fragmented channels (local groups and charities) that their voice isn't heard collectively. Not sure, I would love to have some insight into exactly why we don't seem to raise big numbers. 1million Americans at $1 each is (you got it) $1million and that goes a hell of a long way.

    We need to work on cooperation most of all. We need to organise the fight.
     
  4. muffin

    muffin Senior Member

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    USA!
    The MCWPA.Org group will have a robust list of contacts

    The MCWPA folks just finished a very robust list of contacts and information on how to fax for free from your computer. Please look for this robust list on this site and on the www.mcwpa.org site.

    We think informing the new Congress people is a good idea and so those names will be provided.

    There is also another list of the Agency heads floating around here on PR as we have placed it out here many times. I will look again - but the email addresses for several of the contacts have changed - so unless someone has the most current for Dr. Collins (NIH), Dr. Frieden (CDC), and the assistant to Kathleen Sebelius (HHS, where the money comes from to NIH, CDC, private researchers, etc), please post.
     
  5. Marty

    Marty Senior Member

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    Hi Cigana,

    You really got me thinking - at first it was the one source for addresses (and updates to them), but then I thought about one source for voting for petitions. I think that is a hot idea! It addresses the fragmentation issue and should greatly increase participation by making it so easy. It provides a cheap and easy communication service to everyone.

    I don't know about you, but I've spent way too much time searching different sites - and then I'm too tired to participate. Once a week everyone, worldwide and for free, gets an email where they could send "no confidence" votes to people like Wessley, CDC, etc. Any person or group could format a specific timely statement, like to the Welcome Trust for the December non-replication papers; people could click the box in front of that statement and return it to the techie within 2 days, who collects the votes and sends the statement to the Welcome Trust with 100 votes of agreement (or whatever the tally is). It is so easy that I'd bet the numbers would grow as people got used to it. It could also be used to send "thank you" votes.

    If someone doesn't see an issue they care about, they can write their own statement for distribution the next week. The statement can include references for people who want to research it before voting (but keep it short). If something very timely comes up, people could submit their statement, and emails could go to everyone with a click immediately.

    The statements would have to be edited for accuracy and appropriateness by a couple of knowledgeable people who are good at English. The number of statements to vote on would vary every week, and by submitting to one source, duplicate efforts would be eliminated.

    This service enables every group and individual worldwide to communicate with the newsmakers immediately with just a click and for free. The only people doing any work would be the couple of editors and the techie; the work of originating the statements would be spread over everybody worldwide. It doesn't have any effect on any group or website or blog; it just provides a communication service.

    What do you think?

    Marty
     
  6. cigana

    cigana Senior Member

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    Hi Marty,

    I have thought along similar lines, but it is problematic. Firstly, what you are describing is a lot more work than an email list! I wouldn't know where to begin writing such a website/application (but if anybody knows please get in touch). Secondly there is the question of independence. The petition sites we use at the moment are independently run and are guaranteed to be this way, so that the recipient knows that the votes have really been cast and properly counted. The CDC/Wessely might simply ignore anything that comes from a biased source....

    Mark
     
  7. Marty

    Marty Senior Member

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    Hi Mark,

    Lots of sites run polls. Maybe the weekly email sends you to a site. I know there are folks who know how to do it, even sickos. My programming days are too long ago to be of use today.

    I should have mentioned that the statement/petition retains the name of the originator for validity and because people know whom they can trust. It doesn't change any person or group's activities at all; it's just a neutral service that offers to handle the voting and makes several issues from different groups a week available to recipients in one email. The communication service is just a facilitator for the "paperwork" ("e-work"?) for as many groups/individuals who chose to use it. 99% of the advocates only have to vote; the ease of that should greatly increase the numbers of patients providing feedback to the targets.

    I just think others besides myself would like to get an email (so they don't have to initiate anything) with an issue(s) of the day that they could join with others in expressing their opinion to the decision makers who matter, rather than rambling to the choir on the forum. There are such good comments on the forums, but the decision makers (CDC, etc.) never hear them.

    Are there techies out there who can make some suggestions here?
     
  8. SpecialK82

    SpecialK82 Senior Member

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    These are great, great ideas! It would help up all to be unified, emails would get the word out quickly, and if techies can make this easy for us to vote, we would get so many more signatures. The patients would vote more but also the family and friends, if we make it super easy, we could see a difference.

    I agree that finding the petitions, understanding them, and then figuring out the voting mechanism can be draining. Also, sometimes I can't even remember if I voted on a particular issue because they all blend together for me - if there would be some sort of check that won't let you vote twice that would be helpful as well.

    Working together to write a petition is ideal. So if I have an idea for a petition, I can put that out there, and then someone else may be able to write it, etc. Working as a team and being highly organized will give us more power!
     
  9. Marty

    Marty Senior Member

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    I share your excitement, SpecialK82. It is 3 PM and I haven't done a darn thing yet, not even eat breakfast, because it takes so much time to check out the news on the forums. In fact, that's a new idea; we need a one-page News Sheet. Are you listening, medfeb? Maybe that is something you would like to either coordinate or staff yourself. I would love to receive a daily email of the news that day, with links if I wanted to read further. I don't want to spend what time I have left searching the internet, but I'm certainly glad I didn't miss all the excitement in December with the anti-retroviral papers, too. So many of us only have an hour a day, if we are lucky, to do something. We are all spending hours searching the internet; what if one person did it and sent the highlights to everybody else? Fantastic?
     
  10. Marty

    Marty Senior Member

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  11. usedtobeperkytina

    usedtobeperkytina Senior Member

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  12. cigana

    cigana Senior Member

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    Thanks for the link usedtobeeperky. What we need is a site like that, which lets you start a list of petitions, rather than just one.

    I've come across another problem - sometimes we have to go to specific sites, for example to petition the UK Prime Minister you have to use this government site: http://petitions.number10.gov.uk/list

    If we can find a site that allows us to start lists of petitions and have control over that list, that would be great. We could then send out an email each week linking to that list (everyone need only get one account). The email could include further links to sites like No.10 (the link I just gave). We'd then alert all charities worldwide to the need to use that one site.
     
  13. muffin

    muffin Senior Member

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    USA!
    Sign the Petition! Tell CDC to Change their ME/CFS Research - See Change Link within

    http://health.change.org/petitions/view/tell_cdc_to_change_their_mecfs_research

    191 sigs at 11am est - 25 Jan - Goal is now 500.

    The petiton was such a hit with those that read it that the goal was moved from 200 to 500 signatures since it took about a day or so to get to 190.

    Please sign the petition so that it has the massive impact it should have. If you read the letter, everything in that petition is what we ME/CFS sick have been screaming for from the CDC for decades.

    Sign the petition, forward the link to friends and family, put it on your FB page, and push it so that the CDC is most aware of what the TAXPAYING ME/CFS patients expect from them. They need to know that there are many of us ME/CFS people out there watching their every move and reporting back to the rest of the sick what the CDC is doing or not doing for us.

    Ensure the CDC knows we are a massive powerful force to be dealt with and it is time to do as we invested sick want done -- way past time. Sign and forward the petition please! Thanks!

    Great job on the letter/petition - as usual. :thumbsup:
     
  14. Marty

    Marty Senior Member

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    I see some confusion here with the word "petition". I probably shouldn't have used that word because I was proposing a single statement pertinent to today's news, to which we could send an immediate response by simply clicking for a vote. It is nothing like the complex, one-time MCWPA petition mentioned above. It's a simple, quick, immediate, international feedback service that provides a constant stream of evaluation to the decision makers every week.

    Some examples are:

    An email to Bill and Melinda Gates saying, "100 people are asking you to contribute to WPI research." (in conjunction with some group's letter)

    An email to Dr. Mikovits saying, "100 people are sending you good wishes on your meeting with Dr. Lipkin tomorrow." Imagine how that would make Judy feel, and it took no effort on our part.

    An email to Dr. Unger saying, "100 patients disagreed with your presentation at the CFSAC yesterday." Imagine how that would make you feel if you thought you did a good job yesterday.

    An email to the Wellcome Trust saying, "100 people saw that your publicity release yesterday made claims beyond the papers cited." Immediate arrival of this message would show people really noticed.

    If a statement is one you would like to send, all you do is click; the techie takes care of counting, having the addresses, and sending it. It is just a service to easily increase the numbers, visibility, and involvement of patients. Additionally it provides an immediate critique of decision-makers' actions when it has the best chance of them being receptive.
     
  15. Frank

    Frank Senior Member

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    Cigana we have a mailinglist @ http://action.aboutmecfs.org , but we have not the numbers to make it a continues effort. If you are interested in helping out with it, let me know. Also we like to limit it to 'the big' petitions.
     
  16. cigana

    cigana Senior Member

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    Hi Frank, thanks for letting me know! I have to say though, I had never noticed, so I wondered if something could be done to better advertise it? Ideally we'd want every patient in every country to be on that list. I think it would need to be more centrally advertised on PR. I would be interested in helping out from the UK side of things.

    Hi Marty, what you're proposing sounds great to me, but I really don't have the skills to create something like that. I will talk to a computer geek friend.

    Mark
     
  17. Marty

    Marty Senior Member

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    Ditto, Frank; I don't see a tab for it.

    Mark, votes could be counted manually, if need be, with a <gulp> pencil and paper. Remember our goal is simplicity for the recipients. If our techie has to sit there and physically count votes, so be it.
     
  18. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Hey Muffin,

    Making advocacy easy and streamlined like this (and CAA's ""grassroots"" letter-writing wizard) is SO important!!!
    thanks to mcwpa for working on this! i can't find it on the website though.
     
  19. cigana

    cigana Senior Member

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    Hi Marty,

    I should think it's quite easy for whatever program that handles the emails to also handle counting - the problem is the program that handles the emails.

    Mark
     

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