The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
Simon McGrath concludes his blog about the remarkable Prof George Davey Smith's smart ideas for understanding diseases, which may soon be applied to ME/CFS.
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Join the National PR Campaign for ME: Power to the Patient (P2tP)

Discussion in 'Phoenix Rising Articles' started by Nielk, Nov 20, 2014.

  1. Nielk

    Nielk

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    Nielk submitted a new blog post:

    Join the National PR Campaign for ME/CFS: Power to the Patient (P2tP)

    Have you had enough of all the neglect and abuse of ME/CFS patients? Gabby Klein says now is the time for a National PR Campaign for ME/CFS to impress a change. Join the Patient Revolution to restore power to ME patients ...

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    Thirty years of neglect, incompetence and malfeasance by the Department of Human services (HHS) have rendered ME patients angry, frustrated and disgruntled. They remain invisible, misunderstood and very sick.

    Any possible advance in the science of the disease has been squashed by the gross lack of funding by NIH for this severe disabling disease. In addition, the lack of education of the disease in medical schools has insured the lack of care for patients nationwide.

    Most importantly, we are not any closer to finding a possible treatment or cure to help the one million patients in the United States.

    Grassroots efforts by active, courageous patient advocates have been well appreciated but have not been able to gather the mass effort that is needed to fight for real change.

    Unlike the demonstrations of, “Act Up” for AIDS patients or “Occupy” against Wall Street, the ME/CFS community is just too severely affected and is unable to garner the strength that is needed to take the steps necessary for such a campaign.

    To the rescue comes the organization “MEadvocacy”, which is run by volunteer patient advocates.

    It is a project of May12.org, a nonprofit organization. Their mission is to promote and support the advocacy efforts of our expert researchers, clinicians and patient advocates. Fulfilling the need for a central ME/CFS advocacy organization, the website was launched seven months ago.

    Since then, they have rapidly become a community of over 550 members and 4,000 social media contacts, all of whom are interested in taking action on issues facing ME/CFS patients. They have already supported 19 advocate campaigns. Please see their websites HERE.

    ME Advocacy has recently acquired a proposal from an excellent Public Relations firm “Crowds on Demand” to work with our community. The PR firm, with a six month contract, will contact media, arrange interviews on high profile shows (particularly morning shows), organize demonstrations and recruit policy makers to join the fight.

    The 30 years of patient neglect and HHS malfeasance

    Including but not limited to:

    - Minimal funding by the NIH for research into ME/CFS (less than for male pattern baldness, or $5 per patient per year)

    - Each research project is so small as to render it unimportant. Larger research projects or larger replications of past studies do not get funding. See the story of Dr. Lipkin’s Microbe Discovery Project that was rejected by NIH and is now in the process of being crowd funded by patients and their families. HERE

    - The majority of funding is focused on a psych slant on the disease in order to falsely pretend that it is only a functional somatoform illness

    - Hijacking the name from the initial Myalgic Encephalomyelitis to Chronic Fatigue Syndrome by CDC in the hope that the illness will not be taken seriously

    - Ignoring the history of the disease and the several outbreaks that have been documented

    - Insistence by the CDC to promote harmful treatments such as CBT and GET on their website which has proven to be harmful to patients, and refusal to change it when urged by CFSAC members, experts, advocates and patients

    - Dismal amount and quality of medical school and doctor education of the disease, thereby withholding expert care from patients

    - Refusal to comply with the myriad of CFSAC recommendations by CFSAC members in order to advance the science and care of patients

    - Refusal by the CDC to include two-day exercise testing on patients in their multi-site study regardless of the constant urging by all stakeholders

    - Refusal by the CDC to include PEM as the hallmark symptom of the disease their website and diagnostic criteria as advocated by ME/CFS experts

    - HHS’ ill-devised and needless processes, the IOM, P2P and CDC multi-site study, in order to redefine the real serious disease ME/CFS into a functional somatoform entity. The processes are using unsound scientific methods and committee members who are ignorant of the disease, despite the urging by all stakeholders that these processes are completely flawed and have the potential to harm patients

    - Refusal by the HHs to listen to the ME/CFS stakeholders, experts, advocates and patients who urged HHS to adopt the Canadian Consensus Criteria( CCC) now

    - Past CDC’s misappropriation of funds meant for ME/CFS research

    - Delay and refusal by NIH to provide FOIA requested documents regarding the IOM and P2P contract

    - By their refusal to provide the said FOIA documents, the HHS has forced a patient/advocate/attorney at personal financial and health expense to sue HHS/NIH in federal court to obtain the documents. This lawsuit was won by Jeannette Burmeister – see HERE.

    Actions that need to be taken

    - Demand that the three redefinition projects, IOM, P2P and CDC multi-site study, are stopped immediately

    - Demand that the Canadian Consensus Criteria (CCC) be adopted as the official definition

    - Demand appropriate funding for serious research commensurate with other serious diseases with similar impact on the patients

    - Campaign to inform U.S. public policy-makers in Washington of the state of the neglect and malfeasance toward ME/CFS patients and demand action on our behalf

    - Reach the national media in order to raise awareness of the severity of the disease and how the HHs has historically failed us

    - Demand appropriate funding for serious research commensurate with other serious diseases with similar impact on patients

    - Demonstrations to raise public awareness and increase visibility

    The proposal from Crowds on Demand

    With a strong Public Relations campaign, the fight to stop the unjustified redefinition of ME/CFS is an issue that we believe will resonate well with the American public.

    Complete lack of visibility is the major problem the movement is experiencing. Most Americans do not know about these changing definitions because the issue has not been covered by major media outlets or championed by any high-profile policy maker. To be blunt, most Americans don’t know the reality of ME/CFS!

    Hiring the innovative PR firm, Crowds on Demand, provides the opportunity to bring concerns about the NIH/CDC redefinitions to the public and get the issue the attention it deserves. The firm is known for an "outside the box" approach that has successfully assisted people and organizations in getting on the map. Unlike many firms, we do more than contact media outlets, we coordinate campaigns from the ground up involving lobbying, demonstrations and media relations.

    Crowds on Demand will contact media, arrange for interviews on high-profile shows (particularly morning shows), organize demonstrations and recruit policy makers to join the fight. Moreover, we will assist in the fundraising process by helping to make strategic partnerships with influential organizations and donors.

    We have agreed to work for a heavily discounted rate of $4400 per month including all of these services because we believe in the cause (normally we would charge approximately $10,000 per month for such a campaign). Furthermore, we promise results within six months and promise a 50 percent refund if the organization is not satisfied.

    A PR campaign with Crowds on Demand will get the cause on the radar and help the organization raise substantial funds from a donor network. We have excelled in the past working to bring attention to non-profits. For example, Crowds on Demand has worked with a relatively unknown charity in Los Angeles that worked on homeless mental health issues. It was originally unable to fundraise much or get attention. Through its campaign with us, they substantially increased fundraising and got attention in the media.

    We want to bring our success to fighting the HHS’s ludicrous redefinition campaigns and getting the CCC universally adopted.

    Adam R. Swart

    Email: adam@swart.org

    Cell: 650-353-0083

    If you agree that the time has come for a “revolution” and you would like to take part in this historical event for ME/CFS, please take time to donate HERE.



    Phoenix Rising is a registered 501 c.(3) non profit. We support ME/CFS and NEID patients through rigorous reporting, reliable information, effective advocacy and the provision of online services which empower patients and help them to cope with their isolation.

    There are many ways you can help Phoenix Rising to continue its work. If you feel able to offer your time and talent, we could really use some more authors, proof-readers, fundraisers, technicians etc. We’d also love to expand our Board of Directors. So, if you think you can help in any way then please contact Mark through the Forums.

    And don’t forget: you can always support our efforts at no cost to yourself as you shop online! To find out more, visit Phoenix Rising’s Donate page by clicking the button below.

    [​IMG]










    Continue reading the Original Blog Post
     
    Last edited by a moderator: Nov 20, 2014
    JAM, gretac, vli and 9 others like this.
  2. dancer

    dancer Senior Member

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    Powerful, concise list of the problems, and a creative way to try something new. I just donated.
     
    gretac, vli, justy and 4 others like this.
  3. NK17

    NK17 Senior Member

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    Wonderful piece @Nielk!
    P2P from now on should only mean and stand for POWER 2 the PWME!!!
     
    gretac, justy, Snowdrop and 3 others like this.
  4. Gingergrrl

    Gingergrrl Senior Member

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    @Nielk I think this is a great idea and adding it to the list of things that I need to fully read when I am more alert and awake. I would love to donate and it sounds like a creative new way to advocate when most of us are too ill to do so on a direct level.
     
    Last edited: Nov 21, 2014
    catly and Nielk like this.
  5. Blue

    Blue

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    This is great! A big thank you to all involved. I have thought for a very long time that we need a professional PR Agency and / or Public Affairs agency to go public with our cause. I hope sometimes we will be able to do this in Germany as well. It's hard work to get there - so: Congratulations!
     
    justy, catly and Nielk like this.
  6. dancer

    dancer Senior Member

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    I've also often wished we had an "anti-defamation league" to respond to so many mischaracterizations in the media, on government/medical sites, even the ridiculous "sleepy executive nodding off at desk" photos that often accompany articles on ME/CFS.
     
    gretac, Nielk and Sasha like this.
  7. snowathlete

    snowathlete

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    Thanks @Nielk for this article. As already said, it's very concise which is so important with all the fog in our heads!

    I just made a small donation, because I think it is a very good move to hire a PR firm.
     
    vli and Nielk like this.
  8. Nielk

    Nielk

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    snowathlete likes this.
  9. jimells

    jimells Senior Member

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    I love the clenched fist logo :thumbsup:

    I read the complete proposal, including the case studies. I'm bothered by their use of phony paid protesters in some of their campaigns. It seems dishonest to me. Although using "protesters" who are obviously not really protesters can be fun, and we could always use more of that.

    Protesters who are obviously stand-ins for severe patients could be a powerful statement. It sure would be nice to have a real campaign on our behalf and someone to organize it. Since we are too sick to do it ourselves, hiring a PR firm to do it seems like a good option.
     
    Last edited: Nov 21, 2014
    gretac, SpecialK82, Nielk and 2 others like this.
  10. Molly

    Molly

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    "Complete lack of visibility is the major problem the movement is experiencing. Most Americans do not know about these changing definitions because the issue has not been covered by major media outlets or championed by any high-profile policy maker. To be blunt, most Americans don’t know the reality of ME/CFS!"

    I agree that this is a good plan forward. Before contributing I would like to know how "Crowds on Demand" can guarantee the major media outlets will discuss and investigate this disease without being edited into more mental/behavioral health crosshairs," yea, so I get tired too", or other damaging and misleading all's well with the world type of conversations. If we spend this money on a Professional PR Firm, I am sure the Government, Health Care Professionals Lobby Groups, Education Lobby Groups and all the Fantasy Healers are going to out spend and counter any hope a fateful message those of us who are more severely ill have been reduced to. How are the seriously ill ME Patients whose lives are never going to be restored going to be portrayed in the media when every time I see a media interview it is with a perky somebody who claims they had this disease, and are healed and back to running marathons in their lives again. If a positive attitude and some elimination diet were the answer, we would not be tragically ill. So, how does this PR Firm plan to approach this trauma?
     
    vli, Kati, snowathlete and 2 others like this.
  11. Wally

    Wally Senior Member

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    @Nielk,

    Do you know how the donations will be allocated/spent if the $26,000+ needed to hire this PR firm is not met?

    Wally
     
    Last edited: Nov 21, 2014
    justy likes this.
  12. Nielk

    Nielk

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    @Wally - these are good questions and I have asked MEAdvocacy to look at it and reply here.
     
    vli likes this.
  13. caledonia

    caledonia

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    Hi Jim,
    I'm involved with ME Advocacy.org and getting this thing organized.

    For normal healthy people, the idea of hiring demonstrators is somewhat controversial. Politicians and other groups actually do this all the time, but it's on more on the down low. There is a thing called "astroturfing" which is the opposite of "grassroots" - so called fake advocacy.

    This is not our situation. We are very much grassroots and very much not healthy and not able to do our own demonstrations, or we would have taken to the streets decades ago. We have been put in a position where we have been forced to do this to get our message out. We can frame in that way and actually turn it into a positive - something that will gain us sympathy from the American public.

    Also we're going to use some of our own spokespeople to represent us at demonstrations, and when talking to the media. So it's not all actors; there should always be at least one patient, caregiver or someone close to us representing us.

    In addition, Adam Swart, CEO of Crowds on Demand, says:

    "Not all of our events involve paid protesters. Sometimes, clients prefer that we act as an organizer and facilitator of a protest. One option we do frequently is to provide a few of our own protesters to act as group leaders for the demonstration and then organize other interested groups to act as the bulk of the group. So then, we're not really providing a fake protest, rather, we are helping to organize things."

    I have actually gotten an offer from a similar disease group to provide volunteer demonstrators to help us out.
     
    justy, gretac, vli and 1 other person like this.
  14. caledonia

    caledonia

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    Hi Molly,
    I'm involved with ME Advocacy.org and getting this thing organized.

    You can read the full proposal here, which gives more info on specific approaches: http://www.meadvocacy.org/read_the_full_pr_campaign_proposal

    I will also run your question past Adam Swart.
     
  15. caledonia

    caledonia

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    Hi Wally,
    I represent ME Advocacy.org. The PR firm has generously agreed to work with us at a reduced scale if we can't get the campaign fully funded.

    So our options would be to hire them at a reduced scale or refund people's money. I wouldn't take it and spend it on something people hadn't agreed to.
     
    justy and snowathlete like this.
  16. Valentijn

    Valentijn Senior Member

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    I wouldn't be bothered about using paid protesters, if they were acting as obvious surrogates. Such as if each protestor had a picket sign with the ill photo (not glamor shot) or name/age/etc of an ME patient who is too ill to protest in person. Though that could work both with paid protestors as well as with family members and other advocates who want to get involved.
     
    justy, gretac, SpecialK82 and 6 others like this.
  17. caledonia

    caledonia

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    If anybody has any more questions, can you tag me with @caledonia, so I get flagged and will see it? Thanks.
     
  18. caledonia

    caledonia

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    @dancer Providing proper ME photos on the stock photo sites is another project I hope I can get to.
     
    justy, SpecialK82, mango and 2 others like this.
  19. dancer

    dancer Senior Member

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    What a terrific project idea! Thanks for thinking of that. I grouse about it when I see our depiction in the media, but it never occurred to me to think creatively and make more accurate stock photos available somehow.
     
    Wildcat likes this.
  20. caledonia

    caledonia

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    Just to clarify, as the question came up on Facebook about this article - a "PR" campaign means "public relations" campaign and doesn't have anything to do with Phoenix Rising (other than they were kind enough to give some promotion to it).

    The money donated will go to ME Advocacy.org, which is linked to in the article above. It will not go to Phoenix Rising. You can find out more about ME Advocacy.org on their about page: http://www.meadvocacy.org/about
     

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