The Blue Ribbon Campaign for ME/CFS:
Purpose
1. Is a grassroots organization to be run and directed by a
majority of people who have been diagnosed with ME/CFS. To be run by volunteers.
2. Shall not deviate from our main purposes: to centralize and promote the message that ME/CFS is a serious biomedical disease, and to raise funds for awareness and exclusively biomedical research, including the development of a tissue bank. Our Awareness Mission includes the following purposes: to end stigmatization of persons with ME/CFS; to promote and facilitate proper biomedical research, diagnosis and treatment; to advocate for patients for governmental recognition in terms of financial support, medication (e.g. Ampligen) and treatment coverage; to offer support and resources to ME/CFS patients and their families.
Transparency
3. Will never be administrated out of office space paid for by
Campaign funds. Instead, it will be run online using computers, by volunteers,
in order that all possible monies go directly towards the goals stated in
article 2. This
mandate does not preclude temporary rental of pre-existing spaces in
buildings when deemed necessary, e.g. for a conference etc. The only
building to be built and owned will be for the purposes of an
International tissue bank.
4. Maintains financial transparency to remain accountable to its
membership and the general public, by providing accessible public records of
ALL spending and independent auditing when we are an official charity.
5. Stipulates that all volunteers, donors, and sponsors will be
treated with due respect, dignity and appreciation, and public recognition if
desired. Every member is encouraged to participate in discussion, and must
respect each other’s differing views and opinions. More detail can found in Volunteers rights and responsibilities.
Co-operation
6. Will co-ordinate and co-operate with other organizations to achieve mutual purposes and goals.
7. Will support organizations and blogs that promote the biomedical approach to ME/CFS, and that are operated legally and with accountability to their membership. We will hold ourselves and our organizational partners to the very same standard of integrity.
Definition
8. Affirms that ME and CFS are the same disease, and will always
use the two terms together in official documents, publications, promotions,
discussions etc. The disease will be referred to either as ME/CFS or CFS/ME.
9. Defines ME/CFS using the W.H.O. definition of the disease,
which states that ME/CFS is a neurological disorder and that its cause is viral
in nature (based on the ICD 10), until more scientific evidence shows the origin of the disease, and a more accurate definition is decided upon.
Goals
10. ITo work everyday to raise awareness about this disease, and become incorporated when it is appropriate. When the Blue Ribbon Campaign for ME/CFS is incorporated it will be run by a small board of two people the Founder acting as Executive Director and one other person. An Advisory board will be elected from the voting membership to advise, warn, and pass on ideas from the general membership to this Board when it exists.
11. Will support
awareness of and include information and advocacy for the often co-morbid
disease Fibromyalgia. Fibromyalgia and ME/CFS
share many symptoms, often occur together in patients, and share May 12 as
Awareness Day. We support the “Purple Ribbon” (N.A.) and “Yellow Ribbon” (U.K.)
12. Believes in environmental sustainability and will reduce the environmental impact of our fundraising, administrative, and merchandising activities wherever possible.
13. Will remain independent of outside influence, including but not restricted to pharmaceutical companies, psychiatric or other lobbies. No voting member has or will ever accept gifts or monies from these types of companies and organizations. No voting member can be associated with the psychiatric view of ME/CFS (i.e. that which defines the disease as psychological/somatoform in nature), the psychiatric lobby, or have a vested interest in a pharmaceutical company. This mandate will not preclude individual persons from accepting trial or free treatment from any company or organization, provided they are never required or co-erced to use their influence and/or membership in the BRC to promote those treatments.
14. Will not accept, endorse, or promote any researcher, scientist, or research that promotes, accepts, or endorses that ME/CFS is a somatoform disorder or otherwise primarily psychological disorder, nor that which fails to meet stringent scientific regulations, to properly use the scientific method, or which makes fallacious assumptions or draws illogical conclusions.
15. Upholds that any member, scientist or researcher in the
organization found to have published, researched, endorsed, promoted, or
accepted ME/CFS as a somatoform disorder will have their voting rights and
membership revoked immediately and will be banned for life from membership.
16. Is committed
to supporting people with ME/CFS in as many ways as possible, including but not
limited to providing and/or facilitating forums, chat, and electronic support
groups for members and other ME/CFS sufferers.
17. Will
(eventually), in accordance with our goal of centralizing our message, make our
website accessible to everyone in the international community, by translating
all possible media into different languages, as well as captioning videos and
podcast for the deaf and translation purposes.
18. Will provide
information and advocacy regarding suicide, cancer and heart disease prevention,
in order to assist those with ME/CFS to achieve early intervention regarding
these co-related issues, which can often result in premature death.
19. Is committed to the health of its volunteers. No person shall be asked to work beyond their capability or forego any personal health concerns in favor of the Cause. All deadlines will be flexible, judgments be withheld, and efforts made to accommodate each person’s individual capabilities and disabilities as far as possible. All members and volunteers will be encouraged to make self-care their priority, and give only what they are able and freely choose to give to the organization
20. An International Tissue Bank Fund will be created where donors can
choose to have their money put there, and certain merchandise will be
sold with profits going directly to the fund. The only building which
will ever owned be by the BRC will be for the creation of the Tissue
bank. . The tissue bank will be overseen by the BRC board of directors
and will invite the top ME/CFS researchers wishing to study blood,
brain, and spinal tissue at the bank to perform studies on tissues to
help find cause of the disease. The building name, place, and orgin
will be determined according to cost and feasibility of the
transportation of tissue across borders. (this needs to be fixed, but I
didn't see it in there, and i might have missed it and it should be
nearer the top as it is what differentiates us from all other orgs) A
list of those who donate their bodies will be put on plaques on the
wall as a memorial so that every family who lost someone to this
disease will know that their family member is remembered by those
working for the betterment of others with this disease.
Definition of Membership
21. A Voting member: is someone who has joined our volunteer program. Has signed a binding agreement to follow this mandate and has worked with the volunteer program for at least 6 months of each voting year. Recognizing the limitations of our disease, this service does not have to be continuous. This will not come into effect until incorporation.
22. General members: Are members of the public who are not volunteers, but who are involved on some level in the Blue Ribbon Campaign for ME/CFS such as: receiving a newsletter, writing an article, making graphics, providing links and resources. General members voices will be heard through polls, and specific ideas will be taken into consideration by voting members. However, general members cannot vote.
23. The only people authorized to represent the Blue Ribbon Campaign is the Founder, Andrea Martell, and any person designated by the Founder to represent the Blue Ribbon Campaign for ME/CFS.
24. The opinions, views, and actions of our membership represent their own opinions, views, and actions and do not reflect the views and values of our organization.
Definition of Budgetary Expenses and Revenue
25. Operation costs include the cost of advertising, marketing, merchandising, computer equipment, and the services of professionals such as auditors. We will not be administrated out of paid office space. We are aiming for operation costs of 10% per year so that money raised will go to biomedical research.
26. Research money will be earmarked for existing biomedical research, which is at present greatly underfunded, and for a International Tissue Bank Fund.
