This community will be closing shortly but you can find us on our new community </a></b></a>wamcare
The Worldwide Association for ME/CFS Awareness and Research (WAMCARE) formerly the Blue RIbbon Campaign:Same campaign, same goals, same team minus original leader, new name.
What follows is the email sent directly to our donors regarding the conflict Andrea Martell has made public on her website. After this letter appears a general address to any interested member of the public as well as our donors, supporters, volunteers etc.
Dear ME/CFS Campaigners and Donors,
You have probably received word from our former President, Andrea Martell, that she has left our organization and wishes to return your donations to you. She is claiming that we are holding the money from you, and that is not the case. We have proceeded under the assumption that your donations were made to the group, not to Andrea as an individual. We have no problem returning your donation if that is what you wish. But you should know that our organization continues to exist, and plans on going forward in the same manner with our goals and plans to incorporate, raise funds for research and awareness. Our mandates have not changed. The only thing that has changed is our leader. Our board still exists and consists of the majority of members who were present in the original board. Our name will change. Our mission is the same. If you wish to have your donation back, we will of course respect your wishes and return it to you right away. However you also have the option of confirming that you wish our organization to proceed with your donation as before. Please let us know your decision and we will act promptly.
We as a group believe we have acted with integrity and fairness in this matter. Our policy has always been that our message is far more important than any one person, regardless of the role that person plays in the organization. Our intention is to abide by the wishes of our donors with regards to their contribution, promptly and securely.
We feel it is a shame that Ms. Martell would not consider staying to work out her differences with us. We made it clear we were not giving up on our Organization, Cause or the people we advocate for. We stated that we were willing to continue working with her despite our disagreements, but it was her choice and decision to leave. Because she held the copyright of the BRC name, and website, she took those things with her. She stated that her intention was to continue working for the cause on her own, and we respect her desire to do so. As a group we felt that our hundreds of hours of collective work and energy deserves not to be thrown away, and we have made the decision to continue in the same manner as before. Our main priority is still incorporation as a non-profit, which will be done shortly due to the generosity of the donors that have already given us their permission to use their contribution for that purpose. We would like to publicly express our gratitude to these supporters for their continued faith in our organization.
Despite this recent situation, which has been greatly upsetting for all parties involved, we are still 100% committed to the success of our organization, to promoting awareness for ME/CFS and raising funds for biomedical research. Our goals and mission are the same. We will not let personal discord stand in the way of our mission, and intend to add the mandates and bylaws that will prevent power struggles if individual members decide to leave in the future.
Should you wish to continue to support our organization, please note that our new website will be created once we achieve non-profit incorporation status, which should happen soon. Until the new website is functioning, our new blog will serve to represent us and to continue interaction with our supporters and other interested parties. Please feel free to leave your comments on our blog (http://wamcare.blogspot.com), and your email if you wish to be notified of updates to our organization, have any questions or requests for information.
I am sorry this post is uncut but I feel it is important and needs to be read (as and when people are able!)
You can find us in our temporary homes, our blog wamcare.blogspot.com and on our team member Nicola's site www.hopestrengthjoyandlove.co.uk/WAMCARE.BRC.html We appreciate your support in the campaign as ever. If anyone is interested in volunteering for us or becoming part of our team please respond. If you have any ideas please post! The future is exciting as ever, together we will be heard and cured.
JOIN </a></b></a>wamcare on livejournal to find out more.
Cycle of hope for ME/CFS
Linda a canadian lady has arrived at her starting location St. Johns in Canada and will be ready to start within the next couple of days her cycle across Canada to spread the word about the Blue Ribbon Campaign and ME/CFS!
You can find out more about the Cycle of Hope and why Linda has chosen to do this most important event here http://www.blueribboncampaignforme.org/Cycle_of_Hope.html
You can also follow her on twiter here http://twitter.com/Cycle4Hope4ME and on facebook here http://www.new.facebook.com/home.php?ref=logo#/pages/Cycle-of-Hope-4-MECFS-Cycle-DEspoir-pour-EMSFC/106236391008?ref=nfLinda founded the Cycle of Hope to give hope to people ME/CFS everywhere. She considers this a group effort, so please get on your bike and ride with her. Take pictures of the ride and send them to us at info@blueribboncampaignforME.org. Get your pictures taken wearing your blue ribbon and send us your story!
Follow Linda’s Journey and find out what you can do to help fight for people with ME/CFS. With a few simple acts you can change the world.
Linda wants this to be a group effort, so find out when she is in your town, find out where she is and pop along and ride with her along a small stage of her journey. If you arent able to do that, please come along and meet her and bring your friends and family to offer support.Please be aware that Linda does have speech difficulties and if you approach her bear in mind that she will talk to you, but may not make eye contact.
Linda wants to be the voice for those who are to ill to do this for themselves, she wants to represent those with ME/CFS to raise awareness and help fight for our rights.
Please support her, the bigger this event becomes, the more awareness it will raise and the bigger the success it will be. Please help Linda to help us and say thank you to her for her efforts.
P.S. if you know of any occasions when ME/CFS has been in the news recently or any examples of occasions when there is an expected story of ME/CFS in the news/media in the next couple of months please fill me in. E.g. ME/CFS will be on x channel, in x location at x time.
Blue Ribbon Campaign for ME/CFS NEWS
If anybody knows of any events happening in July or August which are to raise awareness or funds for ME/CFS or a conference type event etc then please let me know. These events will go in the new Blue Ribbon Campaign Magazine and possibly the newsletter too! So this is your chance to promote your event or that of someone else.
Have you ever had massage to help with symptoms of ME/CFS and/or fibromyalgia? If so can you please go to Blue Ribbon Campaigner Nicola's site here http://www.hopestrengthjoyandlove.co.uk/ and click on the poll as to whether you found it useful or not, the results will be published in the Blue Ribbon Campaign magazine. The poll is on the main page, just scroll down a little!
Nicola also has a special deal on at the moment for UK citizens allowing you to buy 6 for the price of 4 on Blue Ribbons this comes to £3.20. Or you can buy the ribbons at 80p each, 20p goes to the Blue Ribbon Campaign, 20p to the ME association, 20p to foggy friends and 20p for costs. You can get them here http://www.hopestrengthjoyandlove.co.uk/blueribbonsforme.html
A lovely lady called Linda will soon be cycling across Canada to raise awareness of ME/CFS, stay tuned for more information on the Cycle of hope! You can read about her journey here www.blueribboncampaignforme.org/Cycle_of_Hope.html
Anyone interested in creating graphics for our ME/CFS facebook application? Which by the way is awesome and taking off really well so you should get using it if you arent already! http://ow.ly/9OP9 you will need facebook to view it if you havent already got it.
We are working on a newsletter and magazine at the moment. If you are interested in writing an article for us, or looking after a little area of the mag or newsletter please shout. I would be especially interested if there are any children who want to write a piece on ME/CFS and how it affects them! Shout if you are interested and we can discuss further!
If you are interested in reading our monthly newsletter or magazine or both when they come out then stay tuned and I will give you instructions of how to sign up on the site when we make that possible! They are going to be great!
We are working on some projects for the Blue Ribbon Campaign for ME/CFS awareness at the moment. One of the projects I am working on is a biomedical research charity of the month. This can be any charity who is supporting biomedical research by raising funds for it or campaigning about it or that sort of thing. Please nominate charities from all round the world.
Another topic I am working on is fibromyalgia. I want to give information about the disease, causes, treatments, research sources, number of people who have ME and fibro, supportive websites, books, anything fibro related which you find helpful please comment and fill me in. I dont have fibro and I want to get advice from people who do so I can write the best article possible!
We also want to incorporate fibromyalgia and appropriate coloured ribbon into the campaign and it will have its own area of the website and information etc. So any suggestions please shout.
In other news we have raised enough money to incorporate in Nevada!!!!! So thank you to everyone who donated, and please bear with us while we file the paperwork for official charity status in Nevada USA. Our next fundraising project is to raise the $300 to incorporate in the whole of the USA as a natrional non profit with tax exemption status. Stay tuned!
Thank you for your help! Go to www.blueribboncampaignforme.org for more information! If you are interested in getting involved in the campaign and joining in with our meetings, offering your skills etc...please shout we are a very friendly group!
Blue Ribbon Campaign
Had a meeting tonight online with 4 of the main volunteers for the BRC. We got loads of things sorted. We are working towards becoming a non profit in Nevada where Darlene our USA team leader lives, she also has experience in being part of a non profit before. This makes sense as the best place to start and will cost approximately $200. Once we have done this we will need to raise $300 to become a USA non profit where we wouldnt have to pay tax. Then we will take it from there until we are supporting everyone world wide!
We are looking for donations towards helping us become a non profit. You can donate here via paypal! www.blueribboncampaignforme.org/Tip_Us_JCBM.html Please help us to help others! At the moment money raised will go to Andrea via paypal, then once we have become a non profit we can have an official account for the BRC.
Natalie in Australia is taking on the role of webdesigner to build us an amazing website and hopes to get it finished by early next year.
Michell in Canada is currently making bracelets for the campaign and will send me some so i can sell them here I have seen pics and they look amazing. She will also send them to other BRC campaigners to sell in their area.
Nicola in the UK is already selling lovely blue ribbons to raise awareness go here to order them! http://www.hopestrengthjoyandlove.co.uk/ They cost 80p and 60p goes to worthy causes including the BRC. And dont forget to enter her competition when you are there!
Thank you everyone for your support, we really are making progress!
Blue Ribbons for UK customers
Nicola Baker sold out of the first batch but she has made another batch of 100 Blue RIbbons for ME/CFS awareness and to raise money: 80p per ribbon this time 20p for costs 20p for Foggy friends (support forum for sufferers) 20p for the ME association and 20p for the Blue ribbon campaign!
Large orders can pay via paypal or cheque!
Go to www.hopestrengthjoyandlove.co.uk
and click on the Blue ribbon pic!Competition:
Nicola is also having a competition on her site to celebrate the fact that her site has reached 1000 visits you can find the competition info and questions here: www.hopestrengthjoyandlove.co.uk/competition.html
"To celebrate my website recieveing 1000 visits I have decided to do a competition, The winner will recieve a goody bag and 3 runners up will recieve a hopestrengthjoyandlove.co.uk pen, keyring, Blue Ribbon and magnet. (sorry this comes out of my own expenses so no big prizes but some fun)
All you need to do is answer 4 questions in which the answers are on the website (get browsing)
When you have the answers email me them with your name.
All responses must be in before Midnight on the 15th June 2009. I put your names in a box and draw the winners out(I will video myself doing it so you can check I am not cheating) and contact you within 2 weeks via email."
GOOD LUCK EVERYONE!
Part of an update from www.caringbridge.org/visit/lauradunks
WHO is right?
An excellent video by Ciaran Farrell about the correct definitions
for Myalgic Encephalomyelitis according to the WHO (World Health Organisation) and why it can only be a neurological illness. This has been uploaded on the Blue Ribbon Campaign blog and you can find it here http://blog.blueribboncampaignforme.org/2009/05/26/who-is-right-vid-explaining-the-who-classifications-of-mecfs.aspx
I cannot praise this video enough. If you are confused about all the definitions for ME/CFS and why they are all the same disease and must not be confused with psychiatric illnesses such as Neurasthenia. A good explanation of why Simon Wessley's approach to the illness is so very wrong. You can also find the video on youtube here should you wish to thank Ciaran and his assistants for this video! http://www.youtube.com/watch?v=K2LU7CikGWA
The Just Four Quid Campaign
This is an awesome campaign created by a british woman with ME who uses the name Zonko. Her plan is to get all of the 250000 people in the UK with ME/CFS to donate £4 to 2 UK charities raising money for biomedical ME/CFS research and thus raise £1 million in a year from ME awareness day on the 12th May which has just passed. The 2 charities are ME Research UK and The ME associations Ramsey Research Fund. Her blog which you can find here http://justfourquid.com/ is a little unique in the sense that she plans to give you money saving tips all year round so you will be better off and as a result be able to spare the £4. However, given that the majority of people with ME/CFS are not a member of the major charities for ME/CFS in the UK, they are probably not aware of this, so if you know anyone with ME/CFS please spread the word. The site encourages you to set up an account with Just Giving and get people to donate to you over the course of the year. Should you not wish to do that then you can donate to either or both of these worthy charities on Zonko's just giving pages:
- ME research UK http://www.justgiving.com/jfq-meruk
- Ramsay Research Fund http://www.justgiving.com/jfq-rrf
So far, according to the charities reports, ME research UK has made £1165 and the Ramsay Research Fund has made £360. You can find out more about the charities on their just giving pages and you can go to ME Research UK here http://www.meresearch.org.uk/ and the Ramsay Research Fund here http://www.meassociation.org.uk/content/view/268/70/
This is an excellent idea and I am really pleased at how well it is working! Biomedical research is essential given that the only research funded by the UK government is psychiatric!
Every search you do using this site for free earns money for worthwhile charities so far hundreds of thousands of pounds.
You can find UK charity Invest In ME's page here http://www.everyclick.com/invest-in-me/396708/0
ME research UK have a page here http://charities.everyclick.com/info.xq?id=1461&name=ME-Research-UK
AYME - Association for Young People with ME (UK charity) have their page here http://charities.everyclick.com/info.xq?id=965&name=Association-of-Young-People-with-ME-AYME
ME association here http://charities.everyclick.com/info.xq?id=1163&name=The-ME-Association
There are many more worthy ME charities on there, just search for the charity you are looking for and the search away! I try and change the one I use regularly to spread the love around!
The petition to appeal for a change in the CDC definition of ME/CFS has gone viral with 1218 signs now! You can sign the petition here www.ipetitions.com/petition/empirical_defn_and_CFS_research/index.html If you want to know more about the petition and why it is really really important you can go here listserv.nodak.edu/cgi-bin/wa.exe Anyone world wide can sign this petition!
Thanks again everyone for reading and helping me spread awareness! Take care and I hope you all are well!