Major Public Media Campaign Launched - This WILL Get the Attention of MILLIONS!

[muffin]

2-for-1 Donation Special Update

Since we announced our "2-for-1 Donation Special," we have received $748. This means that since we started with this special offer, we have raised a total of $1,496. Thank you so much. This is the update as of September 24 at 8:39 EST.

With what we had collected before, we now have about $6,500 (including donations made outside the Facebook Cause page). We are close.

DON'T MISS OUT ON THIS OPPORTUNITY TO DOUBLE YOUR MONEY!
This offer expires on September 30 at midnight EST.

Go here: http://www.causes.com/causes/511536?m=f042604e

Also, we are soon going to be launching the website.
We have multiple teams working on ad samples to present to you in coming weeks.
The MCWPA Team

 

[muffin]

Just got another $250 donaton! Doubled to $500!

We are getting there fast!!!

Get involved! Join, add your comments and ideas, and if possible - Donate!

Remember - The FOUR ADS for the Washington Post will be out soon and that is when we need input and comments on the ADS. After the ADS are changed and vetted by doctors/researchers for accuracy, the members will vote on which of the four ADS THEY want in the Washington Post.

Join so that you can be part of something that WILL get us more funding and attention.
I am repeating myself but...When that AD hits the Washington Post there will be major fireworks in both Washington DC and Atlanta (where the CDC is located) - a good time will be had by all (of us, not them!).

 

[muffin]

We met our 2-for-1 donation goal!

Posted at 4:23pm on Saturday 25 September 2010.

Thank you to all who contributed to the 2-FOR-1 Donation Special. The total that this matching offer raised was $2,166. With the matching donation of $1,000, we will have about $6,883!

Although this special is completed, we still need more donations. Go to this link: http://www.causes.com/causes/511536?m... Every dollar will be going toward an AD that reflects the patients' voice. Look for more exciting announcements in the coming weeks.

Thank You All!!!! The MCWPA Team.

 

[jimbob]

muffin, how are we doing on this? I gave twice and can't wait for it to happen!

 

[usedtobeperkytina]

I'll answer.

teams designing ads. One being reviewed by researcher for accuracy.

Got group working on forming media talking points.

Money is doing well, $7,300, at least.

Website, had some glitches, but should be up within a week.

Been in conversation with other activists about cooperating.

Thanks. It may look like not much is going on, but that is quite the contrary. We expect that when these things are ready, they will be ready about the same time. This is the lull before the storm.

Tina

 

[jimbob]

Thanks Tina for the update, Jim

 

[muffin]

‎*Grand Total For Our "2-for-1" Donation Special*

‎*Grand Total*

Our 2-for-1 Donation Special campaign was a huge success. As of Thursday, 30 September 2010, we have a grand total of $7,628 from both our Facebook Causes page and the PANDORA site. This amount includes all donations that were doubled by our donor.

Our membership is up to 1,213 members and growing daily. Please continue to check this Cause site for important announcements coming soon.

Hit the link at:http://www.causes.com/causes/511536?m=f042604e

Thank You - The MCWPA Team

ME/CFS Worldwide Patient Alliance
To create a patient-driven effective advertisement campaign on ME / CFS, and XMRV.
http://www.causes.com/causes/511536?m=f042604e

 

[muffin]

Me/cfs worldwide patient alliance (mcwpa) progress report by tina

We have a progress report

Posted by Tina Marie Miller Tidmore on Oct 2

http://www.causes.com/causes/511536?m=f042604e

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: http://www.facebook.com/topic.php?xid...

If you would like to donate, please go here: http://www.causes.com/causes/511536?m=&m...=

Exciting things will be coming out soon.

MCWPA Team
------------------------------------------------------------------------------
TINA'S PROGRESS REPORT!!!

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 editor@claynews.net 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: http://www.causes.com/causes/511536?m=62132c92

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.

 

[muffin]

Tina's Progress Report on OUR Major Media Campaign!

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. http://www.causes.com/causes/511536?m=62132c92

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! http://www.causes.com/causes/511536?m=62132c92

 

[muffin]

The MCWPA Website is now UP! www.mcwpa.org

Our new website is up and it is simply stunning!!! Hit the links below and have a look. Our professional web designer has done a fantastic job. The colors and combinations are beautful. The site is clean, clear, easy to navigate and really highly professional. See the links below:

Our website address is http://www.mcwpa.org
Our Patient Discussion Forum is http://www.forum.mcwpa.org

There may be a bug or two right after launch - which was only a few hours ago, so if you have problems please alert us via this site or the Causes site: http://www.causes.com/causes/511536?m=f042604e

I am not being biased when I say this is one of the more stunning sites I have seen. We all are pleased with the immense efforts of Andrea Pring in the UK. She worked hard to do a great job and she did it!!!!

Also, our membership is growing at truly amazing numbers. And donations are growing as well. We are maybe around $700 give/take away from our $8,500 goal for that 1/2 page AD in the Washington Post. So we will be there donation wise soon.

The ADS will be out soon also for review by members. I know people will be amazed and pleased at the ADS. You wanted hard-hitting, well you are going to get hard-hitting.

Stay tuned. We are moving fast and about to hit Major Goal #One: Hard hitting 1/2 page AD in the Washington Post.

After this major and really quite critical goal, will be other newspapers, media, etc.
I expect that what we do next will be open for discussion by members and voted on - as has been the case with everything we have done in this new true democracy advocacy. YOU are the decision makers - NOT an organization that takes your money and then does with it what THEY want. No more of that. You give your money and YOU decide what will be done. And ALL of the donations are going for the ADs. As noted elsewhere, not a single cent has been spent from the donations on anything. Every thing that has been done, has been done by the Team with input by the members. When we have had to pay for something, it has come out of the pockets of our Team members.

YOUR donations are going to where YOU want them to go. So much for huge salaries and no progress...

Sorry, very tired but wanted to put out the good news on the new website since it really is stunning.

 

[leela]

Muffin and the Team,

:victory::victory::victory::victory::victory::victory:
HUGE LOUD HURRAHS and MANY MANY THANKs!

 

[Rrrr]

just made my 2nd donation (via the pandora site) to this wonderful effort! THANK YOU FOR ALL YR WORK. i know it will have a big impact!

- rrrr

 

[caledonia]

Very nice website. Can't wait to see the ads.

 

[jimbob]

Excellent web site!!!! Many thanks to everyone involved. This is going to make people want to donate even more! Let's hope this really kicks ass!

 

[Klmrav]

Made a donation through pandora. Exciting stuff! Thanks to all who's working on MCWPA!

 

[muffin]

7 October 2010: UPDATE

We now have 1,309 members and $8,037 in donations. We need another $500 to meet the goal of getting our 1/2 page AD in the Washington Post. We expect that last bit of money will come very quickly once members see the 4 or 5 advertisements that have been worked on by experts in public relations, advocacy, and journalism. All advertisements have been vetted by a researcher for accuracy. The advertisements are not weak - they are punchy and force issues and alert the public to the newly discovered Retrovirus family in ways that ensure they know that they and their families are susceptible.

Our website is now up as well as the forum. Note that this forum is for Advocacy and not discussions involving medical or scientific issues. There are a number of other websites that have information and forums that deal with those issues including Phoenix Rising. Our website and forum are for PATIENT ADVOCACY in getting the ME/CFS/FM sick funding for research; clinical trials on medications that are already available and have been studied; informing the public, researchers, physicians, journalists, policy makers, and the public about ME/CFS/FM and the newly discovered Retrovirus. As you all know this Retrovirus is most likely linked to prostate cancer, ME/CFS and possibly linked to fibromyalgia, MS, autism, and other diseases and cancers.

Our website address is http://www.mcwpa.org

Our Patient Discussion Forum is http://www.forum.mcwpa.org

We will be presenting 4 or 5 advertisements to the members in the next week or so. After the ADs have been reviewed by members, voting will take place and then we use that ad in a 1/2 page of the Washington Post. The advertisements are heavy hitting as requested by members and will grab attention by everyone. The days of screaming and lecturing only to ourselves have ended. With this new advocacy campaign our voices will be directed at the public and all other players. No more ME/CFS people preaching to the ME/CFS choir.

In addition to our new website and forum we will also continue to maintain our Facebook Causes site at: http://www.causes.com/causes/511536?m=f042604e

Keep checking in as the advertisements will be out for review soon. This is your campaign so go look and vote for the advertisement that you like the best.

The MCWPA Team

 

[Rrrr]

"The days of screaming and lecturing only to ourselves have ended. With this new advocacy campaign our voices will be directed at the public and all other players. No more ME/CFS people preaching to the ME/CFS choir."

YAAAAAY!!!!!

- rrrr

 

[Rrrr]

i finally joined the new advocacy website discussion group. i encourage others to as well!

 

[muffin]

Thanks Rrrr!!!

We have now hit the $8,100 point and are about $400 away from our first monetary goal for our first media goal...That 1/2 page advertisement in the Washington Post!!!!

So much has been done by ME/CFS sick people in the space of two months. We have a fast growing membership, donations coming in, a new stunning website/forum for Advocacy, and the hard-hitting ads will be out for review soon. That is a lot for healthy people to get done but sick people who are exhausted, in pain, can't think clearly (me), but nevertheless, are getting the job done.

We all know we must hit hard and get the message of our disease and the retrovirus out into the public. WE must be the ones to form and propel the message of our disease/retrovirus, NOT the CDC or any other organization - but WE ME/CFS SICK.

So, keep hitting the Facebook Causes site and our new website!!! Vote on the Ad that you want to see in the Washington Post!!! Our disease and that Retrovirus (and the Defreitas Retrovirus) may well be part of a larger cover-up of "deliberate-infections" by our government(s) or rogues within our government health orgs - experimenting on their own people is NOT new to the US as we now know. Wonder about those other 40 "deliberate-infections" that Dr. Collins spoke about. Are WE in that group? Bet we are! So let's really blast our message, get the funding, research, clinical trials and find out if our disease and the retrovirus(es) were indeed part of an experiement by the US/UK/other government(s).

 

[*GG*]

Thanks for the updates Muffin. Really interested in seeing the ads and what happens afterwards!

GG