National PR Campaign for ME Update 1-26-2015
Many thanks to everyone’s donations so far - we were able to apply the $1000 matching grant and to meet our goal of an additional $5000 for February. Here are photos of the two picketers who were present at the opening day of the new Congress. They were picketing outside the Capitol Building in DC targeting members of Congress. We have radio ads running on several FM/AM stations across the country primarily in smaller markets. I'm working on getting a copy of the ad, so you can hear it. Mentions appeared on these internet radio stations: http://player.radioloyalty.com/station/19698.html http://www.spreaker.com/user/dtongsports/ncaa-football-championship-indie-music?autoplay=1 There have been a few blog articles and tweets outside of the ME community, such as: http://www.sprinklegoodness.com/apps/blog/categories/show/1860973-product-and-website-reviews http://www.charitacy.com/help-m-e-advocacy-project-may12-org/ https://twitter.com/FashionistaInc_/status/553591753911988224 We have several interviews lined up for radio programs and health related podcasts. The recent Google Hangouts interview on the Deapshow with Anne Keith (our first interview) had technical difficulties and so is being rescheduled. We’ll let you know when that will happen. We are also working on a response to the recent spate of “fear of exercise” articles coming out of the UK. The PR firm is helping to compose that. Looking ahead to February, things will ramp up to a larger audience. The radio ads will continue to run. At the upcoming IOM rollout meeting in Washington DC February 10th, we will have a representative. Either Charlotte Von Salis will be there, or the PR firm will provide a backup in case she is unable to attend. There will be outreach to policymakers, especially members of Congress who might have an interest in ME. Thanks to Wally for her work compiling a list of potentials. There will be an organized social media campaign targeting major publications and the NIH/CDC. Interviews with two major media outlets are in the works and should appear in February. # # # We are fundraising as we go along, so if you want this campaign to continue past February, we need your donations now! Our goal is an additional $5000 for a total of $15,000 on the leaderboard by February 21, 2015. Click here to for more info and to donate: https://meadvocacy.nationbuilder.com/donatepr
Anne Keith on Hidden Heroes Google + Talk Show Today Jan. 22 4pm EST
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.
P2P and IOM – Born Under a Bad Sign
The Pathways to Prevention Workshop for ME/CFS (P2P) and the Institute of Medicine Diagnostic Criteria for ME/CFS (IOM) - how did these two spurious federal redefinition projects get started? And why are myalgic encephalomyelitis (ME) patients protesting? In the US, the name "chronic fatigue syndrome" (CFS) replaced myalgic encephalomyelitis in 1988, and it is currently defined by the 1994 Fukuda criteria, a government created definition. A unique symptom that differentiates ME from other diseases is post exertional relapse with delayed recovery. As the Fukuda definition does not require post exertional relapse as a compulsory symptom, you can have depression, idiopathic chronic fatigue or an undiagnosed major illness such as multiple sclerosis, and still get diagnosed with CFS. In other words, CFS is a mixture of both ME and Not ME. Needless to say, this has been disastrous for ME research, as you can’t get a lock on true ME, with these other diseases in the mix. In November 2012, the CFSAC (Chronic Fatigue Syndrome Advisory Committee) sent a recommendation to then Secretary Kathleen Sebelius of the Department of Health and Human Services (HHS) to redefine CFS. The intention was to include the Canadian Consensus Criteria (CCC), a true ME definition, created by ME experts, which requires post exertional relapse as a compulsory symptom, and to exclude the Fukuda criteria and other older definitions as they’re inaccurate and outdated. Normally, HHS would ignore recommendations from CFSAC, just as it’s done for the past 10 years. (Which shouldn’t be happening anyway, but that’s a whole other can of worms.) But this time, they saw an opportunity to bury us further. As we now know, the CFSAC recommendations were modified before being passed on to HHS. http://www.occupycfs.com/2014/11/24/another-cfsac-violation/ This is a violation of federal law. The perpetrators changed several things, but left out two crucial things in particular – the requirement to use a true ME definition, the CCC, as a starting point, and the requirement to have only ME experts and patients on the redefinition panel. This left the door wide open to bring earlier overly broad CFS definitions into consideration, and to have government bureaucrats and others not expert in ME on the panel. Then HHS actually followed these illegal recommendations and started the P2P and IOM redefinition workshops in response. When CFSAC patient representative, Eileen Holderman, and others on the committee protested that the workshops were not using all ME experts as required, they received threatening phone calls from the Designated Federal Officer of the CFSAC, Nancy Lee. http://phoenixrising.me/archives/17475 When an ME advocate, Lisa Petrison, wrote a letter to Secretary Sebelius asking that Nancy Lee be replaced, she was told that Nancy Lee had done nothing wrong. http://paradigmchange.me/wp/response-from-hhs-were-doing-everything-right-so-you-have-no-reason-to-complain/ So now we know the draft results of the P2P - the Fukuda criteria is still in operation, and psychological “treatments” such as multimodal therapy are ridiculously and scarily recommended for a serious biomedical disease similar to multiple sclerosis. In other words, it’s business as usual. Based on what’s happened in the past, it’s very unlikely that public comments will have any substantial change on these results. The final report is due to be released circa January 30. We don’t know what the IOM definition results will be until February 10, but given the circumstances, it doesn’t look good. Fortunately, we don’t have to take this lying down! The National PR Campaign for ME has already begun. We are taking our protest directly to the American public and Congress. http://www.meadvocacy.org/update_national_pr_campaign_for_me_1_15_2014 Our goal is to get ME officially recognized as its own distinct disease (separate from CFS), along with a true ME definition, which includes the compulsory symptom, post exertional relapse with delayed recovery, and finally, federal research funding commensurate with similar diseases such as multiple sclerosis. We are fundraising as we go along, so if you want this campaign to continue past January, we need your donations now! Our goal is an additional $2400 for a total of $10,000 on the leaderboard. In addition, there is a $1000 matching grant going on now through January 21, 2015 midnight EST, so donate now and get your donation doubled! Click here to for more info and to donate: https://meadvocacy.nationbuilder.com/donatepr
Update: National PR Campaign for ME 1-15-2015
Thanks to everybody who has already donated to the Campaign, we were able to hire the PR firm, Crowds on Demand. They started work January 1, 2015. As we’re just getting started, there are many exciting things in the works, but nothing concrete that I can link to just yet. There are several smaller media outlets lined up to interview our spokespeople. We have four spokespeople in total (Mindy Kitei, Charlotte Von Salis, Anne Keith and Tracey Temple Smith). A representative from the PR firm was present at the Congressional Inauguration on our behalf on January 6, 2015, looking for new Congresspersons who might become a champion for ME. We did one-person protests at the NIH and CDC in conjunction with that. We also have an upcoming 60-second radio ad, which will air on Midwestern health podcasts and on various FM/AM radio stations throughout the country. While we have the first month’s fees paid for, donations have dropped off due to the holidays, and we are behind for February. We need an additional $3000, for a total of $10,000, by January 21. In addition, there is a $1000 matching challenge grant running until January 21, midnight EST. Anything donated, up to a total of $1000, will be doubled. The IOM report will be coming out February 10. The P2P is also wrapping up and may be completed in late January or early February. Continued funding is crucial to combat these two redefinitions. Please donate! https://meadvocacy.nationbuilder.com/donatepr
Post Your P2P Comments Here
Whether you have sent comments to the P2P and/or CFSAC or you're boycotting the whole process, we need to collect all comments opposing the P2P, so that they can easily be shown to our Congressional representatives as further proof of our opposition. Simply post (or repost) your comments opposing the P2P in the Comments section below this article! We are also working on a petition opposing the P2P - I will post a link as soon as it's ready.
If You Mean M.E., Just Say M.E.!
The National PR Campaign for Myalgic Encephalomyelitis (M.E.) has begun. Many thanks to everyone who has donated to make this a reality! We have hired the public relations (PR) firm, Crowds On Demand, to manage a PR campaign on behalf of ME patients who are too disabled to protest for themselves in an effective way. We aim to start a national dialogue and get ME and its issues on the radar of the general public, patients, doctors, researchers and our policy makers in Washington, D.C.This is the first in a series of articles focusing on each of our talking points. This week - getting ME recognized as it's own distinct disease. Future articles will cover getting a true ME definition, and increasing federal funding for ME research. ### We are asking for ME to be officially recognized as its own distinct disease in the US, along with a true ME definition. Note that this is quite different than simply changing the disease’s name from CFS to ME. We want ME separated from chronic fatigue syndrome (CFS). ME was characterized by Dr. Melvin Ramsay in 1956 to describe a series of epidemics, first appearing at the Los Angeles County Hospital in the 1930’s. Since 1969, ME has been listed under “Diseases of the Nervous System” in the World Health Organization International Classification of Diseases (WHO ICD), current diagnostic code, G93.3. Wouldn't it be logical if this were used for ME? In the US, however, after the famous outbreak of ME at Incline Village, Nevada in the 1980's, the disease was renamed “chronic fatigue syndrome” by the Centers for Disease Control (CDC). A new ICD code was created under “Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified”, currently R53.82. This caused ME to be confusingly mixed with non-ME diseases, such as depression, in a series of overly broad definitions, culminating in the Fukuda Criteria, still in use today. This was politically motivated, apparently by the influence of disability insurers. (Osler’s Web, Hillary Johnson, pp 217 - 219) This is corrupt, unscientific and medically unsound, and not in the best interests of patients. With a new trivial sounding name, and incorrectly re-characterized as a mysterious psychological-fatigue illness, ME has been swept under the rug. The results have been devastating for ME patients. With a population much larger than the similar and better known neurological disease, multiple sclerosis, most ME patients are undiagnosed. Rates of disability are high – being housebound or bedbound for years or decades is not unusual. There are no FDA approved drugs or treatments. Patients are incorrectly told to exercise, when this is actually harmful. Patients can die 20 years younger than normal of heart disease, suicide or cancer. In 2014, federal research funding for CFS was a measly $5 million, compared to $115 million for the similar disease, multiple sclerosis. This severe underfunding has been occurring for decades. With the P2P and IOM redefinitions bearing down on us, perpetuating more of the same, we need to set this straight once and for all. The ICD has variations in each country. In the US, it's called ICD-CM. In the current version, ICD-9-CM, ME is not classified in the tabular listing of diseases, meaning it doesn’t “exist”. I’ve heard of only a handful of ME patients in the US able to get diagnosed with ME. Everyone else has been diagnosed with CFS. Luckily for us, this has been rectified in the ICD-10-CM, which goes into effect Oct. 1 2015. G93.3 (the code for ME), will then be listed in the tabular listing of diseases making it officially "exist". The timing could not be better. We need to start using it! It also has an Exclude1 for CFS (R53.82). The same with CFS – it has an Exclude1 for ME. This means you can't be diagnosed with both ME and CFS at the same time. ME G93.3 is listed under neurological diseases. CFS R53.82 is listed under Symptoms, Signs and abnormal clinical and laboratory findings, not elsewhere classified. So – the ICD-10-CM officially states that ME and CFS two separate diseases, classified in two different categories, each mutually exclusive of each other. The language we use is important, and using the correct language to refer to our disease will help reinforce our campaign. MEadvocacy.org, along with our sponsor May12.org, and the National Campaign for ME have already started using the term ME to mean true ME. We will no longer be using the term CFS, or even worse, the mixed name ME/CFS*, to mean ME. When we mean ME, we will say ME. We encourage everyone in the ME community to follow suit. That means on your websites, blogs, forums, Facebook, and Twitter** - even your domain names and blog names! If you mean the disease with the hallmark symptom of post exertional relapse as defined by the Canadian Consensus Criteria or the International Consensus Criteria – just say ME! As we only have the fees covered for the first month, we are currently fundraising for February, with a goal of $4000 more ($10,000 total) by January 21. An anonymous donor has generously offered a $1000 matching challenge grant, so the first $1000 donated will be doubled. Please donate now! https://meadvocacy.nationbuilder.com/donatepr *Note: There is no ICD code for ME/CFS, CFS/ME or CFIDS - only CFS and ME. The NIH’s use of the term ME/CFS is improper. We ask that they stop using this term, and go back to using CFS as the CDC is still doing. **Note: for Twitter, the most obvious hashtag, #ME, is problematic; we suggest using #MyalgicE instead.
Andrew's Give with ME Challenge (Myalgic Encephalomyelitis)
Andrew is 8 years old, and he challenges you to donate to the National PR Campaign for ME. http://youtu.be/mmhHLrAskCA Andrew is the son of Tom Jarrett, the ME patient who recently held a protest of the P2P Workshop at the NIH campus in Bethesda, MD. Andrew was also present at the protest. http://cfstreatment.blogspot.com/2014/12/us-disabled-hold-protests-at-bethesda.html I know just how Andrew feels as I also had a parent with ME (my mother). Actually it's more like having only half a parent. They're there, but they're not. They feel poorly most of the time and have trouble joining in normal activities with the family. Not that we complained, as that's just how things always were, and kids are adaptable. But looking back I wonder how my life would have been different if my mom was healthy. It was only decades later, after I got sick too, that I realized my mom had the same disease as me. She never did get officially diagnosed, and eventually died of cancer. Not that there was any treatment she could have gotten anyway. I feel sad that although I could finally put a name to her disease, I could never help her. This has been going on for decades and there are unknown tens of thousands of children in the same boat. This disease is known to run in families. What if Andrew also ends up with ME? It doesn't have to be this way. The National PR Campaign for ME is seeking donations to get ME officially adopted as it's own distinct disease, along with a true ME definition and greatly increased federal funding for research. This is the only way I can see that we're going to break of this cycle - please click on the link to find out more, and to donate. https://meadvocacy.nationbuilder.com/donatepr
P2P – Sold Down the River in a Canoe With No Paddles
I was not surprised when many patients expressed relief, even so far as to be pleased, with the outcome of the National Institutes of Health Pathways to Prevention for ME/CFS Draft Report (commonly referred to as the P2P). After all, far from recommending graded exercise therapy (GET), the panel regarded it as possibly harmful. As for cognitive behavior therapy (CBT), it hardly received a resounding endorsement, going so far to say that it doesn’t improve quality of life. Neither CBT nor GET were recommended as primary treatment strategies. Our worst fears were waylaid by this panel of non-experts. “They heard us,” we cried. But don’t be fooled. This is a carefully crafted political document. If your alarm bells didn’t ring at the five mentions of “self-management” in the Draft Executive Summary, then the myriad ways the authors stated the psychological: major depressive disorder, biopsychosocial parameters, multimodal therapy, mind-body connection, anxiety, and fear surely should have gotten your attention. “ME/CFS exists.” Here is a definitive sentence coming from our health care bureaucracy affirming what we’ve known for 30 years. How profusely can we thank them!? I, for one, felt more patronized than thankful. We don’t need empty words; we need money and action, neither of which was promised in the report. With words like “finite resources,” “palliative care,” and “cost-effectiveness of treatment studies,” I’m afraid the status quo will prevail despite or in spite of the P2P Report. Compared to the year-long hard work of our online activists and advocates and the very small changes to the content of the original report, making critical comments during the comment period is likely to bring about only incremental change at best. However, we don’t have to accept any of this! We deserve better than this P2P report. Myalgic Encephalomyelitis (ME) deserves to be recognized as its own distinct disease (separate from chronic fatigue syndrome (CFS)), with a true ME definition that includes post exertional relapse as the hallmark symptom. We deserve federal research funding commensurate with similar diseases such as multiple sclerosis (MS) – a far cry from the measly $5 million “ME/CFS” is getting now. The National PR Campaign for ME, brought to you by MEadvocacy.org, is starting in January. We are taking our message about ME to the American people and policy makers in Washington with a six month sustained campaign. Our goal is to be in major newspapers, in important blogs, on radio, and on television, such as the national morning shows. We're fundraising as we go along; we're currently fundraising for February with a goal of an additional $5000 reached by mid-January. Let's keep the momentum going! Please donate! Learn more about the National PR Campaign for ME, and donate, here: https://meadvocacy.nationbuilder.com/donatepr
Disabled Americans Protest US National Institutes of Health's P2P Meeting
FOR IMMEDIATE RELEASE Disabled Americans Protest US National Institutes of Health's Pathways to Prevention (P2P) Workshop Demonstrations at NIH in Bethesda, MD Bethesda, MD, December 8, 2014 -- On December 10, 2014, disabled Americans will protest to voice their anger over continued mistreatment by the U.S. National Institutes of Health (NIH) and Department of Health and Human Services (HHS). The demonstration is slated for this location and time: in front of the NIH Gateway Center on South Drive, Bethesda, MD, 7:30 a.m. – 2:30 p.m. Protest organizers Tom and Christine Jarrett, of Westfield, IN, will be taking a stand for patients who have ME (myalgic encephalomyelitis). In doing so, he will be calling attention to the plight of one million disabled Americans suffering with ME and their neglect and mistreatment by their government. The protesting patients and their supporters demand a halt to the ill conceived disease redefinition report produced by the NIH's P2P meeting, which they think will set back their cause by decades. They are also demanding the immediate adoption of the Canadian Consensus Criteria (CCC) to define the disease and the cancellation of the IOM (Institute of Medicine) contract to redefine ME. Fifty experts in the disease have written to the Secretary of HHS that they have adopted the CCC, subject to updates (including the ME International Consensus Criteria). Thousands of advocates have supported these experts with emails, blog posts, tweets, and other means for months. For nearly 30 years, people with the debilitating disease, ME, often referred to in the US by the disparaging name of “chronic fatigue syndrome”, have suffered the ravages of a neuro-immune disease that has left many confined to their beds or homes in pain and dysfunction. But since the outbreak of the disease in Incline Village, Nevada in the mid-1980s, nearly nothing has been done by the federal government to support research into the disease. A scant 5 million dollars per year has been allocated for research into a disease that affects more than 1 million Americans and which costs this country more than $17 billion annually in lost productivity and medical costs. So little has been spent on educating physicians about the disease that fewer than 15% of doctors can explain what it is. ME patient Tom Jarrett is among those who have lost their livelihoods to this disease. But as a former estate and certified financial planner, he has not lost his fighting spirit. “NIH is not truly listening to what the patients say. Internal NIH emails obtained through a FOIA lawsuit stating ‘File all these responses. No need to answer them directly’ prove this claim. They have a pre-set agenda for this P2P workshop and the corresponding IOM redefinition effort, and they intend to carry it out regardless of what patients and their doctors say. We are here to protest these redefinition projects that waste taxpayer money and harm patients by moving research backward in time, away from neuro-immune biomarkers, and toward the generic symptom of fatigue,” he says. "There is so much at stake here for my family and for the ME community," Tom says. "Will the P2P meeting and resulting report result in decades more of neglect, while my sons grow up without a healthy father, and patients with ME suffer and die, saddled with a vague disease definition, a trivializing name, and no hope of a cure? I don’t think so, because we patients will keep fighting until the NIH stops and truly listens to our voices."
Frequently Asked Questions for the National PR Campaign for ME
I’m not sure if I like the idea of using hired demonstrators or actors. Isn’t that phony? Won’t we be ridiculed? 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 done secretly. It’s 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. The actors will represent patients who are too sick to demonstrate themselves.If we frame it that way, it can be turned into a positive - something that will gain us sympathy from the American public. Also we're going to use our own knowledgeable 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. Here is some additional information provided by Adam Swart (CEO of Crowds On Demand) regarding the use of hired actors for demonstrations:"First off, 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 already gotten an offer from a similar disease group to provide volunteer demonstrators to help us out. How much are the additional expenses (payment of actors and other expenses)? That's all included in the firm’s fee. There are no additional expenses. Many of us have been involved in doing M.E. advocacy work for years. What is your background? Can you provide us with references indicating that you have been successful in other advocacy projects? Who is involved with this project? We are a grassroots group of ME patients, patient advocates and volunteers. Between us, we have decades of a variety of relevant skills and ME advocacy experience. ME Advocacy.org has partnered with May12.org, an existing 501(c)3 not for profit corporation, so we could get up and running quickly. All donations are tax deductible. For more info, see the About page: http://www.meadvocacy.org/about Is this the Crowds On Demand and Adam Swart that you are talking about:http://crowdsondemand.com/ https://www.facebook.com/crowdsondemand https://www.linkedin.com/pub/adam-swart/1a/797/b31 Yes, That is correct. Can you provide examples of successful advocacy campaigns done by Crowds on Demand which used hired actors? Please see the full proposal, which has five examples of successful campaigns. http://www.meadvocacy.org/read_the_full_pr_campaign_proposal How much did the example clients of Crowds on Demand pay the public relations firm? Adam Swart, CEO of Crowds On Demand, says "I unfortunately cannot share info on how much other clients paid, however, I can say that a $10,000 retainer is typical for this type of service and that we have offered discounts to non profit organizations in the past." Patients have made various attempts at media publicity over the years, and none of them were successful. Why would you expect this to be any different? These were one-off promotions, which while admirable, are not the same as a sustained campaign done by a professional public relations firm. If we did demonstrations like ACT UP did for AIDS, who would cover the cost of the bail for demonstrators that got arrested? While ACT UP, in many ways serves as a good model for getting media and policy maker attention, we’re not going to get violent. Whatever we do would be peaceful and legal. Nobody would get arrested. No matter what anyone spends on something like this, I don’t think those government people are going to listen. We can’t know that for sure unless we actually try. Nothing like this has ever been tried like this before for our disease, even though this has been a successful model for other diseases. The Freedom of Information Act (FOIA) documents received by Jeannette Burmeister indicate that the government is sensitive to what is said in the media. We’ll also be talking to policy makers in Congress who control the Department of Health and Human Services. These are the “bosses” of HHS. Other groups, such as AIDS, have been successful with a similar approach, so why not us? What if the government mocks us; they don’t care about ill patients. It’s all about the money for them. Adam Swart (CEO of Crowds On Demand) thinks 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 and how the Canadian Consensus Criteria, International Consensus Criteria or other definition made by ME experts only needs to be adopted instead. If they start mud-slinging, they will look very bad as they are bullying the disabled. We can use that against them to gain sympathy for us. Do you know how the donations will be allocated/spent if the $26,000+ needed to hire this PR firm is not met? Crowds On Demand 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. We wouldn't take it and spend it on something people hadn't agreed to. 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. Providing proper ME photos on the stock photo sites (where journalists and designers go looking for photos) is another project I hope I can get to. An article about your “PR” campaign appeared on the Phoenix Rising Forum, sometimes abbreviated as “PR”. Does this mean the money would go to Phoenix Rising? I don’t want to donate to them. 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 us some promotion). The money donated will go to ME Advocacy.org, which is linked to in the article. 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 I’ve heard the NIH is planning their own media campaign for when the P2P comes out. What's the time frame for that? The Freedom of Information Act documents received by Jeannette Burmeister state that the NIH is going to be doing a media campaign to promote the results of the P2P.https://www.dropbox.com/s/rwhll0ybmladpy4/FOIA_P2P_Batch#1a.pdf?dl=0Pages 106-107 NIH Media Coverage of the P2P results, starting in mid-February 2015: Mainstream Media Blogs Trade Publications Twitter We need to be ready to counter it with our own media campaign. Ideally, we would like to start 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. https://www.youtube.com/watch?v=IC1_O67xgis&list=UUxrPmgVwJ7-gLqZJK_qLeFg 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 2014. Note: at the December CFSAC meeting it sounded like the P2P report may be ready as early as late January. I live outside the US. Why should I donate to this American campaign? Like it or not, whatever happens in the US will have worldwide repercussions. If the Americans can get a proper definition adopted for ME, this will provide a model for other countries to follow. This should improve the situation for ME patients worldwide. Our donation app accepts international payments. https://meadvocacy.nationbuilder.com/donatepr I live outside the US. I hesitate to donate to an American charity. Is this the only way I can help get the Canadian Consensus Criteria adopted? Short answer: yes. The only other major initiative we know of is Jeannette Burmeister’s legal actions. She is not accepting donations. 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. Reply from Adam Swart, CEO of Crowds On Demand – “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?" Reply from Adam Swart, CEO of Crowds On Demand - “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 company 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.” Is MEadvocacy.org connected to PANDORA or the CAA (now called SCMI)? There is absolutely no connection with PANDORA or CAA. We are a group of independent ME patient advocates, very much a grassroots operation. We have a fiscal sponsor, May12.org, and they are a 501(c)(3) not-for-profit corporation. We borrow our 501(c)(3) status from them. We went with having a fiscal sponsor, so we could get up and running quickly and with a minimum of hassle. So to make this absolutely clear, neither May12.org nor MEadvocacy.org has any connection with PANDORA or CAA/SCMI. Are May12.org and/or MEadvocacy.org tax exempt? Yes. As May12.org is a newer organization, with a small budget, it is currently under automatic exemption. Groups under automatic exemption do not show up in the IRS tax exemption database. As the organization has grown, we have filed for regular exemption in a timely manner. However, it still takes some time (up to 6 months) to process the application and show up in the database. All donations are and will be tax deductible retroactive to the formation of May12.org (2012). Anyone who says anything different is not knowledgeable of IRS regulations. --------------------------------- Questions or Concerns? Make a post below to get a discussion going. Please Donate Please donate today! If 440 people donated $10 a month for 6 months (a total of $60) we would reach our goal. We feel that this is an affordable amount for many people. https://meadvocacy.nationbuilder.com/donatepr