New ERA Has Begun - ME/CFS Advocacy BY the SICK! Your Voice WILL Be Heard!

Discussion in 'Fibromyalgia Main Forum' started by puggles, Oct 3, 2010.

  1. puggles

    puggles New Member

    The ME/CFS Worldwide Patient Alliance (MCWPA)
    We have a progress report
    Posted by Tina Marie Miller Tidmore on Oct 2 (Reposted by Puggles)
    We are glad to report the progress we are making. So much has been going on behind the scenes. We want you to know that the MCWPA Team is working hard for you.

    See here:

    If you would like to donate, please go here:

    Exciting things will be coming out soon.

    MCWPA Team
    Tina Marie Miller Tidmore The patients who have been working behind the scenes would like to give you a progress report.

    Website- Finishing touches being done now. Will have discussion forum for people who aren't on Facebook. Also good thing since we have had problems with Cause page in the past. Look for announcement very soon.

    Ads- We have one submitted to researcher. We have another ready to be submitted. We have one that will be ready to be submitted early next week. We have another that will be ready for researcher review sometime next week. We are having researcher review them for accuracy. Don't worry, we know this is not a researcher ad but an ad of the patients' voice. Then advisers will make suggestions on the ad samples. Then the best will be presented to you for a vote. You should know that these ad designers based their ads on the comments the patients have given here on the Cause page discussion board. You will find the ads reflect the spirit and much of the specific suggestions you have expressed here.

    Other patient activists- We have been in conversations with other patient activists to collaborate on timing and message and graphics.

    Ad Sales person- I had a conversation with one of the ad sales people late last week. They are really going out of their way to help us.

    Media spokesperson- We have a media spokesperson with years of experience. This person will be coordinating with a group of patients to form media talking points to make sure the message is clear and concise with good soundbites. Also, this group will also be putting together a press release. And they will be gathering media contacts.

    Fund raising- Sarah has been keeping you up to date on donations, including those received outside of Facebook. This group is also considering putting together some products for purchase that ME/CFS patients particularly need. They are also open to other ideas. They have been spreading the word on message boards, including Autism message boards, with wonderful success.

    Video- When we get an ad selected by patients, then we can do videos with same tone.

    How many helping- We have a list of 24 patients who have offered to help. If you have an interest in any of these areas, please join us. Contact me at or call me at 205-680-6890.

    Particular areas of need:
    More advisers with advertising experience or PR experience
    More to help Sarah with fund raising by giving ideas and doing legwork (She has only two who are active now.)
    More to help who have PR experience or news media experience
    Someone who can check into opportunities for free advertising

    Also, don't forget to donate here:

    Thank you to everyone who is working so hard. It truly is amazing what has been done in such a short time through volunteers, most of whom have severe limitations because of our illness. I am so impressed. We have gathered professionals, those with experience, yet we have not had to pay. All your donations are going to the ad.

    Hope I didn't step on Tina's toes by posting her Progress Report on all that is going on right now with the ME/CFS Worldwide Patient Alliance. Tina gave a great overview of all that is going on behind the scenes with the Team members. Everyone needs to know how hard the entire team is working (most esp. Tina), on this campaign. Our donation numbers are growing and our membership is also growing super fast. This all points in the direction that people do fully understand the need for this campaign. I think we all know that if we do not do for ourselves, no one else (no other group) will do it for us. Thirty years of nothing, no real progress for us has shown us all that WE must do it. And we ARE doing it - BIG TIME!

    So, hit the link, read, join, give us your ideas, donate if possible. Please keep hitting the link so you can see the new things coming out in the next couple of weeks. We are about to hit one of the most exciting periods of this campaign when it all comes together and people get to see what has been done. You all will be impressed and pleased.

    This is a brand new era and one that you all should be involved in in whatever ways you can be. This is your campaign - add your voice, give us your ideas, comments, thoughts - we use them!

    Thanks to Tina for her outstanding work in so many areas.
    Going way behind the scenes let me tell you that the team members are very dedicated and hard working. Even when sick, they know if they don't get up and do, we will lose our possibly ONE good shot at making major lasting changes to funding, research, treatments for ME/CFS and yes, other diseases and cancers. So, these dedicated members are working hard and you will get to see the fruits of their labors soon. These people were very successful pre-CFS and they brought those skills and experiences with them to this campaign. And it shows. Everything is very professionally done. Hit the link and stay tuned. It is going to be a very exciting time for us all in the next several weeks - be part of that excitement!

  2. mbofov

    mbofov Active Member

    for keeping us informed about all this! I sent info about it to my family and one of my sisters donated $50 (which was really sweet).

    Anyways, thanks again -

  3. puggles

    puggles New Member


    Hillary Johnson has written two powerful blogs on the current issues. You all should know that Dr. Collins has stated that there are 40 deliberate-infection studies out there and that investigations will begin. WE must be part of those investigations as we are most likely one of the major groups of people that the CDC and other health organizations have made sick due to an experiment gone bad.

    Hit Hillary Johnson's website and read. Then hit the ME/CFS Worldwide Patient Alliance site read, join, donate if possible, and give us your ideas, thoughts, opinions. This is YOUR advocacy group. This is YOUR voice. Votes by members are done for everything - the first true "democracy" - one vote per person - instead of giving money to an advocacy group and THEY decide what THEY will do with your money.
    YOU decide what will be done with your donations. YOU decide what goes out to the public.
    Join and be part of your own cure. And keep checking in to see all the new exciting things that are about to be presented to the members. Very exciting period for us!!!!!

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