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Join the National PR Campaign for ME: 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 …

Power to the people

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.

Donate to Phoenix Rising – help keep the lights on!


 

 

 

 

 

 

 

{ 72 comments… add one }

  • dancer November 20, 2014, 7:48 pm

    Powerful, concise list of the problems, and a creative way to try something new. I just donated.

  • NK17 November 20, 2014, 11:16 pm

    Wonderful piece @Nielk!
    P2P from now on should only mean and stand for POWER 2 the PWME!!!

  • Gingergrrl November 21, 2014, 12:29 am

    @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.

  • Blue November 21, 2014, 12:59 am

    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!

  • dancer November 21, 2014, 9:10 am

    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.

  • snowathlete November 21, 2014, 12:06 pm

    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.

  • Nielk November 21, 2014, 12:21 pm

    I was made aware of this informative TED talk on "How to start a movement"

    http://www.ted.com/talks/derek_sivers_how_to_start_a_movement?language=en

    It is the first few brave joiners (hopefully you) that are the key to start a movement. We need you.

  • jimells November 21, 2014, 4:16 pm

    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.

  • Molly November 21, 2014, 5:04 pm

    "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?

  • Wally November 21, 2014, 6:44 pm

    @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

  • Nielk November 22, 2014, 5:18 pm

    @Wally – these are good questions and I have asked MEAdvocacy to look at it and reply here.

  • caledonia November 22, 2014, 6:26 pm
    jimells

    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.

    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.

  • caledonia November 22, 2014, 6:40 pm
    Molly

    "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?

    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.

  • caledonia November 22, 2014, 6:50 pm
    Wally

    @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

    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.

  • Valentijn November 23, 2014, 3:44 am

    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.

  • caledonia November 23, 2014, 2:05 pm

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

  • caledonia November 23, 2014, 2:22 pm
    dancer

    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.

    @dancer Providing proper ME photos on the stock photo sites is another project I hope I can get to.

  • dancer November 23, 2014, 3:57 pm
    caledonia

    @dancer Providing proper ME photos on the stock photo sites is another project I hope I can get to.

    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.

  • caledonia November 23, 2014, 7:25 pm

    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

  • caledonia November 24, 2014, 3:20 pm

    I would also like to add that the NIH is going to be doing a media campaign to promote the results of the P2P and we need to be ready to counter it (with our own media campaign). This was mentioned in Jeannette's FOIA material.

    Here is a link to where I found this:
    https://www.dropbox.com/s/rwhll0ybmladpy4/FOIA_P2P_Batch#1a.pdf?dl=0

    Pages 106-107. Starting in mid-February –

    Media Coverage:

    • Mainstream Media
    • Blogs
    • Trade Publications
    • Twitter
  • Snowdrop November 24, 2014, 3:27 pm

    What's the time frame for that?

  • caledonia November 24, 2014, 4:38 pm
    Molly

    "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?

    Reply from Adam Swart:
    Their likely response will be to defend the redefinitions as something that's needed and necessary. Then we will respond to that with our message about how terrible these definitions are. If they start mud-slinging, they will look bad as they are bullying the disabled. We can use that against them to gain sympathy for us.

    Also please see post #21 in this thread. The NIH is already planning their own media campaign to promote the P2P definition. We need to be ready to counteract this with our own message.

  • caledonia November 24, 2014, 4:52 pm
    Snowdrop

    What's the time frame for that?

    The FOIA info says the NIH's media campaign will start mid-February 2015.

    Ideally, we would like to start our campaign in January, so we can start talking to new Senators and Representatives and possibly find a champion for ME.

    This was something that Llewellyn King talked about as a goal for lobbying in Congress. With a champion, our chances of getting increases in research funding are much greater.

    We can also get our message out there first before the P2P even comes out.

    So that means we need to be funded by the end of December. That's about five weeks from now, folks.

  • catly November 24, 2014, 6:56 pm

    I think this initiative is extremely important given what is happening with the P2P, IOM and what we just learned about HHS trying to twist CFSAC recommendations, once again. We can not continue to allow paid US government employess to continue to do this to us.

    I just donated to this campaign. I hope we get enough money for this to move forward.

  • Dreambirdie November 24, 2014, 7:23 pm

    A couple of us put this together on FB today. The bottom is NIH's bogus infographic about P2P, which as we all now know is designed to shove M.E. under the rug. The top is the reality check for those at NIH.

    Please share it and spread it around.

    View attachment 9021

  • alex3619 November 24, 2014, 7:26 pm
    caledonia

    If they start mud-slinging, they will look bad as they are bullying the disabled.

    Unless they don't start mudslinging but instead claim this is unstable political activists, possibly delusional, and that similar attacks against researchers (not research, they probably wont claim that) are well known from ME and CFS activists. They may paint us as crazies. We have to be prepared to counter any eventuality, including the crazy militant activist angle. The fact there is not one shred of hard evidence for this claim is irrelevant.

  • caledonia November 25, 2014, 8:27 am

    Hi @Molly,
    Here is a specific answer to your questions from Adam Swart, CEO of Crowds on Demand.


    Molly

    "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.

    When we start the campaign, we will formulate a media strategy that emphasizes the disease as a debilitating physical rather than mental condition. When we take it to the major media outlets, they will likely solicit the NIH and others for comment. It’s impossible to guarantee anything when it comes to media coverage. The media often does come up with its own narratives. However, what I can say is that the perspective of the patients that we have will be extremely powerful. That is, if a doctor from the NIH is saying this is psychological while a patient is saying they are suffering, the viewers and the American public are going to believe the patient.


    Molly

    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?"

    Like I mentioned, our most powerful weapon is the fact that we have all of you who can testify to the fact that this disease is truly a physical condition and that however much you would like to be able to be cured and run marathons/etc, that is just not possible. It will be obvious to the media that you don’t want to be in this position. Anecdotes about patients who have tried the exercise/diet/attitude approach and either died or gotten worse will be helpful in this regard. Most importantly though, once the NIH and co starts hitting back, that’s where we will know we would have made an impact! If they’re responding and engaging in a debate with us, that means that the debate is really happening and we are getting our message out there. It means the organization will be able to dramatically increase fundraising and get taken seriously by the NIH and appropriate policymakers.

  • jimells November 25, 2014, 10:28 am
    caledonia

    It’s impossible to guarantee anything when it comes to media coverage. The media often does come up with its own narratives. However, what I can say is that the perspective of the patients that we have will be extremely powerful. That is, if a doctor from the NIH is saying this is psychological while a patient is saying they are suffering, the viewers and the American public are going to believe the patient.

    Many troublemakers (I don't like the word "activist") think they can control the media and the message. Nope. It doesn't work that way. The media have their own agenda, which may or may not align with our agenda. When reporters depend on access to government officials, they mysteriously start thinking and talking like government officials. For an example of how this works, one only needs to examine how the NY Times and Washington Post consistently promote the war agenda of whatever president is in the White House.

    What we need to know is, does Crowds on Demand have actual personal relationships with important media people who could be sympathetic to our story?

    I don't understand why Mr Swart thinks the public will believe patients over the doctors. Decades of ceaseless propaganda has convinced Joe Sixpack that anyone who isn't working as hard as he is (and he is working plenty hard!) is lazy, weak, and looking for a handout that will somehow make Joe even poorer than he is already.

    If you want to know how the NIH etc will respond, just look at the response of the psychobabblers in the UK to advocacy.

    None of the above is to suggest that we shouldn't buy a PR campaign. I'd just like folks to understand what we are up against. "City Hall" has worked mighty hard to make sure that nobody can fight it and win.

  • jimells November 25, 2014, 10:36 am
    alex3619

    We have to be prepared to counter any eventuality, including the crazy militant activist angle. The fact there is not one shred of hard evidence for this claim is irrelevant.

    Hmmmm, actually there may be a fair amount of evidence that I'm a crazy militant activist. It's certainly not something I would deny. :angel:

  • Nielk November 25, 2014, 11:19 am

    It would be great if we could get some of our ME experts on board as well. I am sure that many would welcome the opportunity to speak up for us where the media is concerned. If i comes down to believing patients, doctors and researchers in the disease as opposed to government agencies, I think that we have a stronger message.

    Ultimately, though, we will never know unless we give it a try. We really need all the help that we can get, especially at this dangerous crossroads. HHS is getting ready to announce their P2P and IOM results with a big splash. We need to have a way to counter this and I feel that we can have a stronger, noisier voice with the help of this PR voice than without it.

  • caledonia November 25, 2014, 12:25 pm
    Nielk

    It would be great if we could get some of our ME experts on board as well. I am sure that many would welcome the opportunity to speak up for us where the media is concerned. If i comes down to believing patients, doctors and researchers in the disease as opposed to government agencies, I think that we have a stronger message.

    Ultimately, though, we will never know unless we give it a try. We really need all the help that we can get, especially at this dangerous crossroads. HHS is getting ready to announce their P2P and IOM results with a big splash. We need to have a way to counter this and I feel that we can have a stronger, noisier voice with the help of this PR voice than without it.

    That would be great. I am open to this possibility. Whatever works.

  • Snowdrop November 25, 2014, 12:54 pm

    In my opinion, the message that I want to really get out there is that this illness is not an issue of getting run down and exhausted (fatigue) but it starts with not being able to ramp up and create the energy needed to function (our 'set point' of maximum energy ability is far lower than normal).
    The other issue would be that this affects, for the more severely affected extreme cognitive problems (slow processing, poor decision making and other issues) And that many are affected by co-morbid conditions especially POTS.

    I would like the media to be educated as to many other illnesses that have been maligned as 'malingering' only to have a clear physical causation discovered later. Absence of definitive diagnostics is not proof of absence of physical causation has been seen time and again.

  • caledonia November 26, 2014, 9:09 am

    @jimells All replies are from Adam Swart, CEO of Crowds On Demand.

    jimells

    Many troublemakers (I don't like the word "activist") think they can control the media and the message. Nope. It doesn't work that way. The media have their own agenda, which may or may not align with our agenda. When reporters depend on access to government officials, they mysteriously start thinking and talking like government officials. For an example of how this works, one only needs to examine how the NY Times and Washington Post consistently promote the war agenda of whatever president is in the White House.
    What we need to know is, does Crowds on Demand have actual personal relationships with important media people who could be sympathetic to our story?

    Yes, I have relationships with reporters and producers at many top-tier media outlets including Good Morning America, NPR, USA Today, etc.

    I don't understand why Mr Swart thinks the public will believe patients over the doctors. Decades of ceaseless propaganda has convinced Joe Sixpack that anyone who isn't working as hard as he is (and he is working plenty hard!) is lazy, weak, and looking for a handout that will somehow make Joe even poorer than he is already.

    Look at the 'Obamacare' debate. The American public is skeptical of Obamacare because they believe they should have a say in their treatment and are worried about the government demanding certain types of treatments for certain conditions (remember the whole "death panel" fear back in 2010?).

    If you want to know how the NIH etc will respond, just look at the response of the psychobabblers in the UK to advocacy.

    I've said this before–I think if the NIH begins responding to us, that means we've been hitting the right notes and getting attention. For everyone who opposes the cause, there will be others who will want to join.

    None of the above is to suggest that we shouldn't buy a PR campaign. I'd just like folks to understand what we are up against. "City Hall" has worked mighty hard to make sure that nobody can fight it and win.

    I cannot guarantee what exactly will result from the campaign. I will say that currently the organization doesn't get enough attention to even land on the NIH radar. That means that the NIH has so far effectively avoided even debating the issue. Once it's out in the media, the NIH will be forced to debate and you will be free to tell your compelling stories. This will help us fundraise more and also recruit high-level policymakers to join our cause which will finally achieve the results we are looking for.

  • Kati November 28, 2014, 7:08 pm
    caledonia

    I would also like to add that the NIH is going to be doing a media campaign to promote the results of the P2P and we need to be ready to counter it (with our own media campaign). This was mentioned in Jeannette's FOIA material.

    Here is a link to where I found this:
    https://www.dropbox.com/s/rwhll0ybmladpy4/FOIA_P2P_Batch#1a.pdf?dl=0

    Pages 106-107. Starting in mid-February –

    Oh crap.

  • vli December 3, 2014, 2:17 am

    From the website:

    There are several actions you can take right now to advocate:

    • Join this site – when you join this site you will be notified of further actions you can take, such as mass emails
    • Spread the word – sharing helps spread the word outside of the M.E. community to a larger audience. The more people who know about our issues, the bigger the impact.
    • Sign the petition to stop the IOM redefinition contract – the petition currently has around 5600 signatures – we need enough signatures that they can't ignore us. The petition is a piece of evidence that can be presented by our lobbyists to Congress as to how many people are affected and concerned about our issue.

    Can someone explain this to me like I'm a three year old?

    Why is it that only 5600 of the supposed 1 million US patients have signed Patricia Carter's petition?

    Is it wrong of me to, on that basis, query the "1 million in US" figure?

    As a patient who was doing zero fundraising or advocacy work I was shown this petition to sign one year ago. Why haven't more patients done the same? Is it all explained by the stigma of ME? I am not even a US citizen and thus pay no tax to the HHS.

    Thanks.

  • caledonia December 3, 2014, 9:19 am
    vli

    From the website:

    Can someone explain this to me like I'm a three year old?

    Why is it that only 5600 of the supposed 1 million US patients have signed Patricia Carter's petition?

    Is it wrong of me to, on that basis, query the "1 million in US" figure?

    As a patient who was doing zero fundraising or advocacy work I was shown this petition to sign one year ago. Why haven't more patients done the same? Is it all explained by the stigma of ME? I am not even a US citizen and thus pay no tax to the HHS.

    Thanks.

    Hi vli, I've pondered this same question. I believe it's a combination of most people with ME are not diagnosed with either ME or CFS (85% are not). Then you have to be well enough to be online. Then you have to be aware of the issues. Most people seem to be focused on support, not politics. Then you have to look at the reach of the petition. Who did Patricia reach out to, and did it go viral on social media or not.

    There were actually two petitions, which would confuse things. The total signatures were 10,000. That doesn't mean there wasn't some overlap between the two (I know I signed both).

    The petitions were given to a Congressional aide by Susan Kreutzer and the whole thing was filmed for the documentary, The Forgotten Plague, coming out in 2015.

    Considering all the various factors, that's a great response for us, maybe the best ever for anything.

    But unfortunately, the petitions did nothing. We need to do more, which is why I am fundraising for a professional public relations firm to help us out.

  • lnester7 December 3, 2014, 10:26 am

    @caledonia there are media savy people that maybe they can help us. Is there a group working on the plan for this??? Where can I contact them?

  • caledonia December 3, 2014, 11:00 am
    lnester7

    @caledonia there are media savy people that maybe they can help us. Is there a group working on the plan for this??? Where can I contact them?

    That is me. I started ME Advocacy.org earlier this year. We are fundraising to hire a professional public relations firm. You can read more here: https://meadvocacy.nationbuilder.com/donatepr

  • vli December 3, 2014, 1:09 pm
    caledonia

    I believe it's a combination of most people with ME are not diagnosed with either ME or CFS (85% are not).

    Hi. Sorry, just curious as to where this figure comes from?
    I was barely 19 when I got sick (now 33) and it was severe enough for me to stagger my way to a bookstore and buy Dr Teitelbaum's "Fatigued to Fantastic" (I am no fan of Teitelbaum, but that was the first "literature" I came across about ME). So while I am making absolutely no judgement on these people–it completely baffles me (especially now that there are more people with computers and an Internet connection than ever before) that 85% of sufferers have NOT stumbled across the terms "ME" or "CFS" in their investigations on or offline (mine started offline in 2000?!).
    I am a huge fan of this initiative. I really want to help out. But when a petition that only takes a few clicks to sign has only 5600 signatures after a potential 1,000,000 after one year, and the website says the petition is one of three things people can do to "take action", then it isn't wrong to see the number of signatures as a sign of something. Either the CDC figure is wrong or we aren't unified enough as a community. If people can create an account on Phoenix to discuss treatments they can spend one minute signing a petition that your organisation says is so important.

  • vli December 3, 2014, 1:31 pm

    I hope my post above did not offend. Maybe I can put this in another way.

    My non-ME friend (who after all is a typical member of the target audience of this initiative) first read the site info about the million sufferers then read the site's call to sign the petition. He remarked immediately that for a population of a million sufferers he was surprised that only 5600 have signed the petition if it was so important. The conclusion he could see people drawing (although he did not draw it himself) was that ME can't be that bad–can't be that life-shattering–if only 0.5% of the patient population bothered to sign an important petition. Regardless of our intentions, that is the message that comes across and I am sure none of us want to have that. How can we prevent that?!

  • Wally December 3, 2014, 1:46 pm

    @vli,

    I think you have some valid questions/comments that are worth discussing, but you may not receive back many responses right now because the CFSAC meeting is taking place today. I will try to respond back to you with my thoughts later today after the CFSAC meeting is finished.

    Wally

  • vli December 3, 2014, 2:07 pm

    Thank you Wally–sorry I was not even aware of the CFSAC meeting today. Apologies!

  • Wally December 3, 2014, 2:12 pm
    vli

    Thank you Wally–sorry I was not even aware of the CFSAC meeting today. Apologies!

    @vli,
    No problem, it is difficult to keep up on everything that is going on. Here is the thread that has a link to the meeting that is taking place today and tomorrow.
    http://forums.phoenixrising.me/index.php?threads/cfsac-meeting-dec-3rd-4th-2014.34152/

  • caledonia December 3, 2014, 3:49 pm
    vli

    I hope my post above did not offend. Maybe I can put this in another way.

    My non-ME friend (who after all is a typical member of the target audience of this initiative) first read the site info about the million sufferers then read the site's call to sign the petition. He remarked immediately that for a population of a million sufferers he was surprised that only 5600 have signed the petition if it was so important. The conclusion he could see people drawing (although he did not draw it himself) was that ME can't be that bad–can't be that life-shattering–if only 0.5% of the patient population bothered to sign an important petition. Regardless of our intentions, that is the message that comes across and I am sure none of us want to have that. How can we prevent that?!

    This is also in answer to your other post. I believe the 85% undiagnosed figure comes from a prevalence study done by Leonard Jason in 1999.

    If you think think the petition it looks bad, it would be easy enough for me to take it off. It's out of date anyway. I need to update the "call to action" area too.

  • vli December 3, 2014, 4:00 pm

    No, you should not make a big change to the site like that simply because what my one friend thought. It sounds as though you are about to add new things to the "Take Action" tab however. Is that so? If so, then I for one would be very keen to see how we can help aside from signing up and spreading the word. Thank you so much!

  • caledonia December 3, 2014, 4:04 pm
    vli

    No, you should not make a big change to the site like that simply because what my one friend thought. It sounds as though you are about to add new things to the "Take Action" tab however. Is that so? If so, then I for one would be very keen to see how we can help aside from signing up and spreading the word. Thank you so much!

    Donate to the National PR Campaign for ME https://meadvocacy.nationbuilder.com/donatepr

    This is all great feedback by the way. It sounds like I do need to refine the home page a bit.

  • caledonia December 3, 2014, 5:27 pm
    vli

    No, you should not make a big change to the site like that simply because what my one friend thought. It sounds as though you are about to add new things to the "Take Action" tab however. Is that so? If so, then I for one would be very keen to see how we can help aside from signing up and spreading the word. Thank you so much!

    Check out the website http://www.meadvocacy.org/ and let me know what you think. I removed all the Call to Action stuff because it's actually outdated. The main thing I want people to know about is the National PR Campaign for ME.

    Did you know you can click on the large banner with the red megaphone and it will take you to more info about the Campaign?

  • vli December 3, 2014, 5:41 pm

    Yes. Fwiw it looks great to me!

  • caledonia December 3, 2014, 6:54 pm
    vli

    Yes. Fwiw it looks great to me!

    Super! Thanks.

  • gretac December 4, 2014, 1:56 pm
    Valentijn

    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.

    @caledonia , I really like this idea of @Valentijn 's: it answers the concerns I expressed over at your ME Advocacy website, which I'm reposting here:

    I applaud the energy (lol!) behind this. Most of this looks awesome.
    I have two – turns out, three – misgivings:

    First, I am concerned about the use of actors – other movements have been discredited by the presence of "outside agitators" and I don't want the information that actors are instigating or populating protests to discredit us, which it would so easily do.
    Second, – darn, in writing the first one, I forget what the second one was. CFIDS/ME brain…
    Oh! Maybe it was this: if they are cornered by media to give reactions, I'd be concerned that they would not give out accurate information about this condition.
    Third – this was the second one! – concern that the media would distort active protestors as representative of PWC/ME: more of, "They look perfectly healthy to me!"

    So what about this: Is it possible to educate the actors thoroughly about ME so that they have a true, real-life understanding and concern about our illness? That way they can pass the straight-face test that they have friends and acquaintances with ME, and (hopefully, from their education) they would have a genuine concern for us. So that they actually become advocates, not actors. Maybe they could be trained at least by watching one of the PWC/PWME videos out there.
    And it should be clear that the people out there protesting are advocates, not typical people with ME!!​