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

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.

Support Phoenix Rising​

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.

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Continue reading the Original Blog Post

 

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

 

What's the time frame for that?

 

"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.

 

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.

 

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.

 

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.

 

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.

 

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

"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.

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.

 

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.

 

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.

 

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.

 

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.

 

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.

 

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

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.

 

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.

 

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.

 

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.

 

@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 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

 

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.