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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.
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{ 72 comments… add one }

  • caledonia December 5, 2014, 1:32 am
    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?!

    On this same theme, I am finding I'm having to put together an entire marketing campaign from scratch just to fundraise for a marketing campaign. There are a zillion blogs, websites, forums and Facebook groups scattered everywhere.

    It's hard to tell what has the most reach and what is going to have to the most impact.

    If anybody has any ideas for where I should be doing promotion for this campaign, I'm all ears!!!

  • vli December 5, 2014, 1:37 am

    Hi @caledonia –are you in touch with Jen Brea?

  • caledonia December 5, 2014, 7:25 pm
    vli

    Hi @caledonia –are you in touch with Jen Brea?

    Yes, a bit. She has donated, but has not responded to my request to help with promotion. I'm not sure what she could do anyway outside of putting us on a Thrive Show? If we have a demonstration, she may be able to film it for possible inclusion in her documentary.

  • snowathlete December 5, 2014, 7:55 pm
    caledonia

    On this same theme, I am finding I'm having to put together an entire marketing campaign from scratch just to fundraise for a marketing campaign. There are a zillion blogs, websites, forums and Facebook groups scattered everywhere.

    It's hard to tell what has the most reach and what is going to have to the most impact.

    If anybody has any ideas for where I should be doing promotion for this campaign, I'm all ears!!!

    i have a list of global charities, groups, blogs somewhere. Bit out of date, a year? But it might be handy? If you'd like it then let me know and I'll dig it otu.

  • caledonia December 5, 2014, 7:58 pm
    snowathlete

    i have a list of global charities, groups, blogs somewhere. Bit out of date, a year? But it might be handy? If you'd like it then let me know and I'll dig it otu.

    Yes, especially if it has hyperlinks and Facebook groups. I'm working on an spreadsheet right now.

  • vli December 5, 2014, 10:35 pm

    hi @caledonia I only thought of Jen Brea because I thought there might be overlaps between what you are doing and what she is doing for the campaign she aims to launch in Feb http://meactionnetwork.org/. Do you know if there are overlaps??

  • caledonia December 5, 2014, 10:42 pm
    vli

    hi @caledonia I only thought of Jen Brea because I thought there might be overlaps between what you are doing and what she is doing for the campaign she aims to launch in Feb http://meactionnetwork.org/. Do you know if there are overlaps??

    As far as I can tell, ME Action Network is an app for individual advocates to launch their own campaigns. It's still kind of a mystery as to what it is.

  • vli December 5, 2014, 10:53 pm

    oh it's a phone APP? nothing like what I thought then…

  • caledonia December 5, 2014, 11:09 pm
    vli

    oh it's a phone APP? nothing like what I thought then…

    I don't know about phone app, but web app? Like we have a One Click app set up on our website to send protest letters. So like a collection of apps that assist with advocacy? Petitions, letters? I don't really know.

  • catly December 6, 2014, 12:15 am

    @caledonia Aside from donating (which I have done) what can we do to help?

  • caledonia December 6, 2014, 3:33 am

    Anything you can do to spread the word about this campaign would be greatly appreciated.

    Here are some things I've been using on Facebook – you can take those and tweak them for your situation. Perhaps you can say something like – I donated to the PR Campaign and why, briefly, and give a link to the donation page.

    If you could put your version here, that would help others too.

    Short version:

    We don't have to take this lying down! We can be heard with a National PR Campaign for ME/CFS. Read the proposal here: ‪https://meadvocacy.nationbuilder.com/donatepr‬

    Long version:

    ***Now Is The Time for a National PR Campaign for ME/CFS***

    The IOM and P2P redefinitions, Nancy Lee deliberately removing the Canadian Consensus Criteria from CFSAC recommendations, on top of 30 years of "chronic fatigue syndrome", overly broad definitions, and peanuts for research.

    I'm sure you're as disgusted and disgruntled as I am about how badly the Department of Health and Humans Services treats ME/CFS patients. That's why I started http://meadvocacy.org earlier this year – to fight against the redefinitions and get the Canadian Consensus Criteria adopted for M.E.

    We don't have to take this lying down! As great as our grassroots efforts have been, it's clear we need to apply even more pressure to achieve our goals. We are seeking donations to hire a professional public relations firm to bring our story to the media and policy makers in Washington.

    Click here to read the proposal and donate: https://meadvocacy.nationbuilder.com/donatepr

    I have prepared a Frequently Asked Questions document for you (linked in the proposal) but if you have additional questions, feel free to ask.

    Please share!!!

    =-=-=-=-=
    Perhaps something like this?

    Are you as disgusted and disgruntled as I am about how badly the Department of Health and Humans Services treats ME/CFS patients? That's why I donated to the National PR Campaign for ME/CFS.

    We don't have to take this lying down! The campaign plans to hire a professional professional public relations firm to bring our story to the media and policy makers in Washington.

    Click here to read the proposal and donate: https://meadvocacy.nationbuilder.com/donatepr

    Please share!!!

  • catly December 6, 2014, 4:30 pm
    caledonia

    Anything you can do to spread the word about this campaign would be greatly appreciated.

    Here are some things I've been using on Facebook – you can take those and tweak them for your situation. Perhaps you can say something like – I donated to the PR Campaign and why, briefly, and give a link to the donation page.

    If you could put your version here, that would help others too.

    Short version:

    We don't have to take this lying down! We can be heard with a National PR Campaign for ME/CFS. Read the proposal here: ‪https://meadvocacy.nationbuilder.com/donatepr‬

    Long version:

    ***Now Is The Time for a National PR Campaign for ME/CFS***

    The IOM and P2P redefinitions, Nancy Lee deliberately removing the Canadian Consensus Criteria from CFSAC recommendations, on top of 30 years of "chronic fatigue syndrome", overly broad definitions, and peanuts for research.

    I'm sure you're as disgusted and disgruntled as I am about how badly the Department of Health and Humans Services treats ME/CFS patients. That's why I started http://meadvocacy.org earlier this year – to fight against the redefinitions and get the Canadian Consensus Criteria adopted for M.E.

    We don't have to take this lying down! As great as our grassroots efforts have been, it's clear we need to apply even more pressure to achieve our goals. We are seeking donations to hire a professional public relations firm to bring our story to the media and policy makers in Washington.

    Click here to read the proposal and donate: https://meadvocacy.nationbuilder.com/donatepr

    I have prepared a Frequently Asked Questions document for you (linked in the proposal) but if you have additional questions, feel free to ask.

    Please share!!!

    =-=-=-=-=
    Perhaps something like this?

    Are you as disgusted and disgruntled as I am about how badly the Department of Health and Humans Services treats ME/CFS patients? That's why I donated to the National PR Campaign for ME/CFS.

    We don't have to take this lying down! The campaign plans to hire a professional professional public relations firm to bring our story to the media and policy makers in Washington.

    Click here to read the proposal and donate: https://meadvocacy.nationbuilder.com/donatepr

    Please share!!!

    Thanks @caldonia, I will work on a post for my Facebook page, but I'm afraid that I don't have a big reach there. Is there anyway to provider a twitter link From your web page that we can easily tweet to whomever we want with the title of the initiative, I use twitter a lot.

  • caledonia December 6, 2014, 5:26 pm
    catly

    Thanks @caldonia, I will work on a post for my Facebook page, but I'm afraid that I don't have a big reach there. Is there anyway to provider a twitter link From your web page that we can easily tweet to whomever we want with the title of the initiative, I use twitter a lot.

    Unfortunately there are no social buttons on the Donate page, although there are on the Home page.

    You can use the following Tweet as an example:
    We don't have to take this lying down ! Now is the time for a National PR Campaign for #MECFS #CFS #STOPP2P4ME https://meadvocacy.nationbuilder.com/donatepr

    Feel free to modify that as you see fit.

    I'm also in the process of setting up separate Facebook and Twitter pages from May12.org. I think things are getting lost with all the May12 posts.

  • Research 1st December 12, 2014, 8:48 pm

    The P2P and IOM is a tragedy for all patients with genuine neuroimmune disease and especially those trapped in their homes severely affected. As for the deceased with CFS, no one can bring these poor souls back.

    The IOM removed CFS expertsf from its panel to redefine CFS (a disgrace) and the P2P have admitted the British psychiatric Oxford Criteria CFS evidence isn't applicable, but includes it anyway as an evidence base. Astonishing negligence.

    The good news is, soon, new pathogens will be associated to those given the horrible label of 'CFS', and many patients will sue the American and British health agencies for their disability which is acquired (infection leading to autommunity) not learnt (behavioural due to mental illness).

    It is fundamentally wrong for certain groups to sell a product (therapy) to patients knowing it harms them, and to promote it as safe and effective! This therapy is CBT and GE.

    Once the patients can know what pathogen they carry, the law suits will rain down like snow.

  • Sparrow January 21, 2015, 9:15 pm
    vli

    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.

    Not every patient with ME believes that the IOM and P2P efforts are a negative thing. The community at this particular forum has a very strong slant in that direction, but not every patient shares those views.

    I love the idea of getting public relations firms involved, but wish dearly that we could tighten the focus of their efforts to raising awareness of the severity of the condition, generating sympathy and understanding for patients, and highlighting the inadequacies and unfairness of current research funding and the need for research efforts and treatment options. I think the focus on fighting the IOM and P2P discourages a subgroup of patients from contributing to funding them, etc. Whereas the other efforts, we could definitely all get behind.

  • caledonia January 21, 2015, 10:30 pm
    Sparrow

    Not every patient with ME believes that the IOM and P2P efforts are a negative thing. The community at this particular forum has a very strong slant in that direction, but not every patient shares those views.

    I love the idea of getting public relations firms involved, but wish dearly that we could tighten the focus of their efforts to raising awareness of the severity of the condition, generating sympathy and understanding for patients, and highlighting the inadequacies and unfairness of current research funding and the need for research efforts and treatment options. I think the focus on fighting the IOM and P2P discourages a subgroup of patients from contributing to funding them, etc. Whereas the other efforts, we could definitely all get behind.

    That's actually an old page from the website which has been removed. We've been refining our message as we go along and learn more about what's needed and what will be effective.

    The main focus is 1) getting ME officially recognized as it's own distinct disease (separate from CFS), 2) along with a true ME definition (CCC, ICC or better), and then 3) increased federal funding for research commensurate with similar diseases such as multiple sclerosis.

    Of course, along the way we will be raising awareness of ME and the severity of the condition, generating sympathy and understanding for patients and highlighting the inadequacies and unfairness of current research funding and the need for research efforts and treatment options.

    Challenging the IOM and P2P are secondary to, or in service of, the primary goals. If the P2P and IOM are calling the disease "ME/CFS" then that is contrary to our goals and needs to be challenged. You will never get ME recognized and meet all the other goals by combining it with CFS or trying to convert CFS into ME (or at least it hasn't happened yet in 30 years of trying). Every time we do try, the govt comes in and squashes it. That's why we have a P2P and IOM in the first place. They are NOT what the CFSAC recommended.

    We have already seen the draft report of the P2P, and if someone is in support of it, they're either not very knowledgeable, or you may want to question their motivation. The draft report leaves the 1994 Fukuda definition in operation. This is a very loose definition which is a combination of ME and several Not ME diseases – a disaster for ME research. Treatment recommended is multimodal therapy, a psychological therapy. I would be shocked if the final P2P report was substantially different from the draft report.

    We'll know a lot more about the IOM come February 10, and the final report of the P2P is also coming out in the next 2 to 3 weeks.

  • Kati January 21, 2015, 11:22 pm

    I personally was a bit disappointed the ME advocacy changed their goals without telling those who are funding them.

    honestly, separating (divorcing)ME from CFS is not going to change much. It will actually create tension betoween the 'real patients' from those who are not as sick but are still unable to work. Patient Advocate Chris Cairns called them 'the half sick' how is it supposed to be helpful?

    i agree that the name CFs sucks a whole bit. But right now, this is the word that is being used in the US (and Canada). Telling an emergency dr you have myalgic encephalomyelitis will not give you better care because it translates to them to chronic fatigue syndrome therefore not important. And with changing the name to ME will not just by itself change the fact that we do not have funding or solid research that defines the clear pathology.

    What I would like to know is who are the people behind ME Advocacy, and who are its influencers? Because it will determine if I continue supporting then or not.

    Thx.

  • caledonia January 22, 2015, 12:49 am
    Kati

    I personally was a bit disappointed the ME advocacy changed their goals without telling those who are funding them.

    honestly, separating (divorcing)ME from CFS is not going to change much. It will actually create tension betoween the real patients from those who are not as sick but are still unable to work. Patient Advocate Chris Cairns called them 'the half sick' how is it supposed to be helpful?

    i agree that the name CFs sucks a whole bit. But right now, this is the word that is being used in the US (and Canada). Telling an emergency dr you have myalgic encephalomyelitis will not give you better care because it translates to them to chronic fatigue syndrome therefore not important. And with changing the name to ME will not just by itself change the fact that we do not have funding or solid research that defines the clear pathology.

    What I would like to know is who are the people behind ME Advocacy, and who are its influencers? Because it will determine if I continue supporting then or not.

    Thx.

    Actually the WHO ICD-10 CM agrees with MEadvocacy's goals. Starting Oct. 1, ME will be listed in the tabular listing (meaning it "exists"), and it is separate from CFS, and vice versa. There is an exclusion, so if you're diagnosed with one, you can't be diagnosed with the other. This is where medical billing codes come from for diseases.

    Those who can still work are still real patients. The ICC has something called atypical ME, which I think would cover more mildly affected patients. In any case, we don't want to leave anyone behind. Using a much better definition like CCC and ICC, looking at severe ME patients vs. controls, and vastly increasing research should help us find that elusive biomarker much quicker, which can then be used to diagnose people (even mild patients) with much more accuracy.

    It's mostly me as the main organizer, but there are at least 20 ME patient advocates I've been working with behind the scenes. Many of these are long time advocates whose names you should recognize – many bloggers have been helping Erica Verrillo, Gabby Klein, A Rainbow At Night, Mindy Kitei. Mindy Kitei, Charlotte Von Salis and Anne Keith are spokespersons. They all did presentations at the IOM public meeting early in 2014 and can be seen on Youtube. These are just a few.

    If you have donated and don't like the changes to the goals ie, they've become something you don't agree with, I will refund your money – just drop me a line.

  • Ember January 22, 2015, 6:59 am
    caledonia

    It's mostly me as the main organizer….

    Thank you!:balloons:

  • Kati January 22, 2015, 7:25 am

    First i would like to add to my post above:
    Edit to add: remember when patients were getting tested for XMRV and some patients started saying that the XMRV negative didn't have ME? Thing is no one can tell who is the real deal and who is not at the moment. Criteria definitions will never be perfect.

    i agree with a campaign, I agree that we need to stop preaching the choir. However the message and what we're going after is extremely important. While patients can be united, the extremists, on both sides, can make it or break the campaign. You are asking patients to fund the campaign. It is important to hear them and also it is important to communicate what exactly is happening, because without that funding we go nowhere.

    i command your efforts and do I ever know it is not easy to juggle, while sick with this disease.

  • Nielk January 22, 2015, 5:29 pm

    Patient and advocate Anne Keith posted this on Facebook:

    MEadvocacy.org has its first interview today.
    You need to join Google+ but it is simple to do and free.Here's a link directly to today's show.

    http://tinyurl.com/neupqc4

    I will be doing a podcast on Google+ with Arielle Caputo at 1:00 Pacific Daylight Ti Meadvocacy.org me (4:00 Eastern time, 9:00 London time, 8:00 Sydney time). It will be recorded.

    I'd love your support and prayers — I've been busy trying to narrow a million facts into a few precise points.

    My goal today is to get the true nature of ME better understood by the listeners. We need more lay people involved in our fight for an expert definition and appropriate funding and care. It may take a village to raise a child but it's going to take a world to raise the roof!

  • caledonia January 22, 2015, 5:59 pm

    This is better information:

    http://www.meadvocacy.org/anne_keith_on_google_hangouts_on_air_with

    Anne Keith on Hidden Heroes Google + Talk Show Today Jan. 22 4pm EST
    [​IMG]

    MEadvocacy.org spokesperson, Anne Keith, will be discussing ME on the Hidden Heroes live talk show with Arielle and Aarin. The show is a Google+ Hangouts On Air live broadcast, which will air today January 22, at 4pm EST.

    Click on the link to access the show:

    https://plus.google.com/events/c1ncce8ntfgja2337llm8aveue4

    Here's a link to a time zone converter so you can calculate for your time zone – http://www.timeanddate.com/worldclock/converter.html

    You don't need to be a member of Google+ to watch the show. I am not sure if the show will open up the floor for questions, but if so, you will need to be logged into Google+ to do that.

    The show will also be archived for future viewing. We will post the link when it's ready.