Ignoring the Voice of the Patients - Business as Usual

  The P2P Report The Pathway to Prevention (P2P) report “Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome”, commissioned by the National Institute of Health (NIH) was published on June 16, 2015.  It was unveiled with “much fanfare” (not!) at a teleconference with invited media and the public.  The media must have forgotten to call in because there was one lone question from a journalist.  The rest of the media might have been lulled to sleep by the “fascinating” introduction.  Of course, this resulted in periods of silence because the many questions that the public would have asked were ignored.   As expected, the final report did not deviate much from the draft report issued in December 2014. The P2P report described at length and repeatedly that they took great care to consider the floodgate of public comments.  However, this emphasis on “listening” to the patients was blown out of the water when it was discovered that NIH had “lost” a large batch of public responses. (See Jennie Spotila’s blog here.)  It is still not clear whether all the comments have been found, read and considered. Then again, the over one hundred comments that did make it, did not impact greatly on the report anyway. See the panel’s review to the public comments to the December 10, 2015 draft report.. Dismissing and Discounting ME stakeholders who have been following HHS’ actions for the past 30 years are not surprised by this disappointing outcome.  Ignoring, dismissing  and discounting ME patients’ voices is what HHS has done repeatedly.  If “snubbing” does not work, history has shown, HHS will revert to setting up more workshops, meetings and soliciting new reports, which they will then ignore.  While setting up these processes, they have been as secretive and obscure as possible.  If questioned repeatedly, as has been done by voting members of CFSAC, they threaten and intimidate them back into submission and silence. Ignoring Public Comments There is no need to repeat all the shortcomings of the report since this has been done at length when the draft report came out in December 2014.  The response to the public comments report is an interesting read. It demonstrates the disrespect of public comments to the draft report. For example, they tackle the question why the P2P work included research using the Oxford criteria which the P2P itself acknowledged should be retired since it is too inclusive.  The reasoning for their insistence in including studies based on Oxford is laughable. They state that without them, there would not have been enough studies to warrant this work!  So the P2P report is largely based on the use of bad criteria.   The P2P study used research based on the Oxford criteria which they admit are bad and should be retired.  How can anyone expect the result of that work to be substantive? Statements in the report blaming the medical expert community for the shortcomings in ME research is unprofessional and inaccurate.The blame for the lack of quantitative and qualitative research in ME should be placed squarely on the government health agencies; HHS, CDC and NIH. Another way that the report deflects blame is with their recommendation for “patient participation” in their treatment. and patient “self management”.   In other words it is not the failure of HHS that is causing this medical neglect, it is the patient.  This is called: Blaming the victim! HHS has wasted much needed funds and time on unwanted and highly contested processes like the P2P and IOM. The lack of response to ME patients’ calls and needs has resulted in 30 years of neglect and medical abuse.The CDC has perpetuated the illusion of ME being a “fatiguing illness” requiring GET and CBT as treatments.  NIH has repeatedly refused our calls for an increase in funding. The history of the government’s treatment toward this disease makes it abundantly clear that HHS doesn’t want to and has no intentions of coming to our rescue.   Congress as Our Champion   In order to have any chance to improve the plight of patients, we need to contact and cultivate a relationship with our Congressional Representatives on the Hill and impress on them the importance of their involvement.  Congress has the power to urge HHS into action.  Congress can make decisions to appropriate more NIH funding to ME or push for reallocation of funds toward ME research. Disastrously for us, most congressional representatives have never heard of the disease.  Even if they have heard of the name, they are ignorant to the severity and the toll it takes on the patient.  They are ignorant of the huge burden this disease has on the economy.  The first step is education.  We need to reach as many representatives as possible informing them of our dire need.  We need to tell them how American men, women and children are disabled; some completely bedbound.  The suffering is so great that a striking percentage of patients have been compelled to commit suicide.  This can no longer go unaddressed.  Patients have had enough and will not continue suffering silently any longer!  MEadvocacy.org is a grassroots movement which has taken on the charge of representing the severely affected ME patients and to advocate for their rights. They are currently running a campaign to attract Congressional interest.  They have composed an easy one click letter asking for $250 million of NIH funding per year as well as the adoption of the historical name myalgic encephalomyelitis with ME criteria.  MEadvocacy realizes that a letter writing campaign alone will not accomplish much.  There is a need to form real relationships with Congressional Representatives.  An advocate for MEadvocacy visited in April with some Representatives who are members of the House and Senate Appropriation Committees.  She distributed informative packets which we had prepared.  This will be followed up with subsequent visits with more members of Congress  in order to drive home our goals. ME advocacy advisory group members have also begun personal conversations with their own individual representatives. Using that experience, they are ready to assist anyone willing to call on their representatives whether by phone, e-mail, or actual visits in order to drive home the immense need for support for ME sufferers.     What You Can Do   Join the MEadvocacy.org website.here Sign the easy one click letter here Leave a suggestion on our suggestion box here Let us know if you would like to volunteer and help here Join our Facebook page here Follow us on twitter here We deserve better and we demand better!

Update on USDOJ Protest by May12.org

    The USDOJ demonstration in Washington, DC, in front of the U.S. Department of Justice building, was a great achievement.  The group successfully delivered the criminal charge sheets to 20 foreign embassies and over ten elected U.S representatives and senators.  The goal being to reveal U.S. government fraud involving Lyme disease, Gulf War Illness, Chronic Fatigue Syndrome, Myalgic Encephalomyelitis, Fibromyalgia, and Autism.   DHHS, in its attempt to marginalize certain diseases, has had a history of creating false criteria. We have clearly seen this with ME and Lyme.  In addition, they have attempted to thwart appropriate funding for research. This has been apparent with ME, which has been grossly underfunded.  NIH has taken funding meant for serious biomedical research, and funneled it for use in scientifically invalid psychological/psychosomatic research.  This has caused 30 years of great harm to ME patients.  Similarly, Lyme patients have been victimized and suffer from inadequate diagnostic criteria. They have become the victims of medical research fraud perpetrated by a CDC officer. The USDOJ group calls on the Department of Justice to prosecute the perpetrators of the “crymes” to their fullest extent.    For details go to Ohioactionlyme.org.    

Press Release - Disabled, Chronically Ill to Occupy US Dept. of Justice

PRESS RELEASE - IMMEDIATE Disabled and Chronically Ill Americans to Occupy the United States Dept. of Justice (USDOJ) from June 1, 2015 to July 4, 2015 in Washington, D.C. Groups of chronically disabled patients, victims of medical abuse, will be assembling for a peaceful but passionate protest on the steps of USDOJ, 950 Pennsylvania Avenue NW, Washington, DC 20530, from June 1 until July 4. They are charging the USDOJ with failure to act on a whistleblower’s complaint accusing of research fraud and falsification of information for personal financial benefit as outlined below. Facts sheets reveal rampant fraud and racketeering within the CDC and private entities. The Occupy leaders state in their criminal charge sheets that there is a common disease mechanism linking Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS), Lyme Disease, Gulf War Illness, Fibromyalgia and Autism.  Exposing this mechanism reveals rampant fraud and racketeering within the CDC and other entities, as well as the cause of the autism pandemic. Through a massive compilation of published scientific research and public-record documents, a group known as the Society for Advancement of Scientific Hermeneutics (SASH), makes a convincing case for these illnesses sharing a common mechanism of fungal-induced immunosuppression, known to the National Institutes of Health (NIH) as "Post-Sepsis Syndrome." They report that such immunosuppression leads to the chronic reactivation in the central nervous system of multiple viruses such as Epstein-Barr Virus (EBV), Cytomegalovirus (CMV), and HHV-6, leading to cancers and an AIDS-like disease. SASH further shares evidence that the interaction of fungi with attenuated viruses in vaccine vials causes the reactivation of those viruses and ultimately, the diseases they are meant to prevent. The group's primary charge centers on the USDOJ's failure to take action on a whistleblower complaint that was filed in July 2003 by Kathleen Dickson, a former analytical chemist at pharmaceutical giant Pfizer. Her complaint alleged that CDC officers, Yale University medical faculty and others committed research fraud to falsify the current, Dearborn case definition (2-tiered) in order to falsify the outcomes of the OspA vaccines, namely LYMErix, which was pulled from the market after an FDA ultimatum to the manufacturer. Ms. Dickson's complaint further alleged that the very same government employees who committed these crimes stood to gain substantial financial rewards from a monopoly on all tick-borne diseases, vaccines and test kits. Additionally, their falsification of the Lyme disease case definition and treatment guidelines have left 85% of actual Lyme sufferers unable to obtain diagnosis, treatment, or insurance coverage for their AIDS and cancer-like illness. An abundance of scientific and historical evidence is presented in the charge sheets. Many of the citations refer to the alleged criminals' own peer-reviewed, published research papers and patent documents, which paint a chilling picture of the extreme effort that SASH says has been made by the alleged criminals to deny basic healthcare to an estimated 30 million sufferers in the United States. They say that the extent of deceit and corruption, with intent to deny an illness, goes far beyond anything that occurred in the early days of AIDS activism. The group is calling on USDOJ to prosecute for the fraud and racketeering charges. These criminal acts have left millions of people to suffer in isolation while being ridiculed by doctors, family members and employers as psychosomatic or lazy. The victims, often bankrupted by the high cost of out-of-pocket medical expenses, and unable to work due to illness, and many suffering with such unmanageable severe pain; frequently commit suicide to escape their continuous denial of basic human rights and lack of basic care and pain management. For additional information and to view the charge sheets, visit ohioactionlyme.org. May12.org is endorsing this protest, and is dedicated to raising awareness of complex immunological diseases such as Myalgic Encephalomyelitis, Chronic Fatigue Syndrome (ME/CFS) and Chronic Lyme disease. E-mail: info@may12.org Contact Person: Joni Comstock phone number: 515.209.9495  

(New Improved!) Tell Congress to Increase Funding for ME Research and more

"The only way to be heard is to actually speak out" One of MEadvocacy.org’s aims is to empower ME patients and their supporters with a strong voice.  For the past three decades, these voices have been ignored. The Department of Health and Human Services (HHS) has continuously neglected and marginalized this disease, by using overly broad definitions, trivializing disease names, and consistently underfunding research. This has resulted in substandard care for ME patients by the medical community, leaving a generation of ME patients suffering with little hope for the future. Unconscionably, the upcoming generation of patients are facing the same issues as 30 years ago. We must go over HHS' heads directly to Congress. Tell your Congressional representatives - we have had enough of this abuse. NO MORE! To make the process easier, we have created a pre-written letter, which you can view in the One Click form below. Simply fill out the form, and click the blue “Sign” button. The app will look up your zip code and send the letter to your representatives. Note: If you're reading this on the home page, you may have to click on the title of this article to go to the Blog to see the One Click form - sorry for any confusion. New Improved Letter and Deadline Extended! With the help of one of our experienced volunteers, we've revised and improved our letter. We've also extended the deadline for an indefinite period. Even if you've already signed the old letter, feel free to sign this new one too! Note: The form is for US addresses only. If you’re having issues, try this direct code https://oneclickpolitics.com/promo/UN If you're still having issues, send me an email via the contact button on the About page (http://www.meadvocacy.org/about) with information about what error message you may be getting, your device, operating system and browser. This will help the developers figure out what may be going wrong.  

May 12 Release of "Forgotten Plague" Theatrical Trailer

  Ryan Prior and Nicole Castillo, co-producers of the upcoming ME documentary “Forgotten Plague,” released its first theatrical trailer.  The release was timed for May 12th, 2015 to spotlight and honor International ME Awareness Day events.  One of our own advocacy members, Susan Kreutzer, makes a quick cameo appearance in the trailer.  Can't wait for when the documentary will be released this summer. Visit the Forgotten Plague website for more information.    

MEadvocacy.org Chomps Chillies for ME

Our Story: We are a group of patients and advocates who volunteer our time to raise awareness for Myalgic Encephalomyelitis.  Due to the severity of our illness, our activities, writings and meetings take place from our homes and beds. Our current focus is to raise awareness to ask Congress to increase funding into research for severe ME patients, use the term Myalgic Encephalomyelitis (instead of CFS) along with more accurate criteria that is recommended and supported by ME experts, advocates, and patients. The Challenge: We have been challenged by Brenda Hankins, one of the founders of The Chilli M.E. Challenge. The goal of the challenge is to raise awareness for neglected ME patients and raise donations for ME/CFS biomedical research.  Here is our video where 6 advocacy members ate chillies or hot sauce for ME: https://youtu.be/7r8hwaHSTak We are doing this challenge in memory of ME patient and outspoken advocate Thomas Hennessy Jr., who founded ME International Awareness Day, and ME patient  Vanessa Yeuk Lin Li whose battle with ME ended this year at the young age of 34. She spearheaded the crowd fund effort for Dr. Ian Lipkin ME/CFS The Microbe Discovery Project.  Dr. Ian Lipkin and Dr. Mady Hornig honor Vanessa in this letter.   Nominations: We, as an organization, are challenging:  1) Morgan Fairchild [@morgfair], 2) Erica Verillo [CFS Treatment Guide Blog], 3) Mary Schweitzer [Slightly Alive Blog], 4) Lisa Petrison [Executive Director of Paradigm Change], 5) Mary Dimmock [co-author of Thirty Years of Disdain: How HHS Buried ME], 6) Jen Brea [Advocate leader at The #MEAction Network and Director/Producer of documentary film Canary in a Coal Mine], 7) Ryan Prior [Co-director/Producer/Writer for the documentary film Forgotten Plague], 8) Joey Tuan [Website developer of Heal Click] to spread the word and donate, and 9) Llewelynn King [ME/CFS advocate, host of White House Chronicle and ME/CFS Alert Youtube Channel].  In addition, each of us will personally be sending out challenges. Donations: US donations will go DIRECTLY to the Biomedical ME/CFS Research at Columbia University's Center for Infection and Immunity of the Mailman School of Public Health that most closely shares our vision to find the root cause of M.E/CFS, especially Mady Hornig, MD, and colleague's 2015 Molecular Psychiatry studies.  For those outside of the US, there are also other donation opportunities. Here is a recent Deborah Waroff ME/CFS Alert interview with Dr. Mady Hornig, where Hornig explains status of current research projects needing funding:  https://youtu.be/AjrViKJGSUA Click Here for Chilli ME Challenge Donation Info Since one of our organization’s goals is to promote research of severe ME/CFS patients, we are excited to inform you of a new study that the Open Medicine Foundation is seeking to fund for biomedical research of severely ill ME/CFS patients.  They are needing private funding in order to start the study. Donate Here to OMF the ME/CFS Severely Ill Big Data Study   Take the Challenge:  Click here for Challenge Instructions Tags:  #chilliMEchallenge #MEadvocacy #May12th #MECFS #MyalgicE #NeuroME #‎May12BlogBomb  

Want To Get $250 million for ME? Let's Reach Congress Now!

      At the Capitol The month of April has been a very busy, yet rewarding, time for the advocate advisory group at MEadvocacy.org. We have reported to you about our “boots on the ground” adventure with our “Act Up for ME Demonstration” at the Capitol and the White House.   Despite some initial snags and thanks to our intrepid, determined advocate, Susan Kreutzer, the march/walk on Washington, facilitated by George Washington University students wearing pictures of ME patients, was a major achievement.  At the same time, we were engaged behind the scenes with noteworthy advocacy operations. It came to our attention that important developments were happening in the month of April in Congress. This is the time when appropriations hearings take place for the next year’s  budget. The U.S. House and Senate Committees on Appropriations are responsible for passing spending bills. The bills passed by the Appropriations Committee regulate expenditures of money by the government. As such, it is one of the most powerful of the congressional committees.  Both the House and Senate Appropriations Committees are divided into House Subcommittees and the Senate Subcommittees that cover a large range of government agencies. This year, the Appropriations subcommittee hearings, which decide the 2016 budget for the Senate and House for labor, health and education, were taking place at the end of April. Individuals and/or organizations had the opportunity to submit written testimony to each of these subcommittees, as well as request an actual speaking spot for the House hearing.  We quickly jumped into action sending requests to appear in person, as well as composing written testimony to both the House and Senate Appropriations subcommittees for labor, health and education.  The Senate and House Hearings We pulled our resources together and were able to successfully send in our written testimonies.  Here is our testimony for the Senate and the one for the House. In addition, we spent time preparing informational packets to be distributed to various congressional offices.  Susan Kreutzer, our “advocate on the Hill”, volunteered to fly to Washington, DC in case we were selected to appear in person for oral testimony.  She was able to guarantee herself a reserved seat at the Senate hearing.    Unfortunately, we were not able to secure a speaking spot this time. We learned that competition is fierce for these speaking opportunities.  It is usually the big groups who have a lot of clout that are chosen to testify. But, Susan was in attendance at both the Senate and House subcommittee hearings and reported back to us.  The House Hearing took place on April 29th.  Twenty three presenters spoke about a variety of topics, since this subcommittee covers labor, health and education.  Most of those testifying were representing very large groups and were talking in the billions.  This meeting was not televised.  The Senate Hearing on April 30th was one of the most consequential hearings because Dr. Francis Collins, director of the NIH,  presented NIH’s proposed programs and innovations to support the need for NIH’s budget for 2016.  Representatives of the 27 institutes of NIH were present including Dr. Anthony S. Fauci, director of  NIAID. Dr. Fauci spoke about funding for research using gene-editing technologies in human embryos.  He explained the importance of NIH’s Brain Initiative which could bring major advances for diseases like alzheimer’s, autism and epilepsy. The NIH proposes to create a study using a national cohort of one million Americans to understand health and disease.  Q & A Session An interesting Q & A session followed with questions from all members of the committee. Questions revolved around which disease needs the most funding. Of course HIV/AIDS was mentioned by many.  Dr. Fauci said that they are working towards the goal of the total eradication of HIV/AIDS in the near future. Alzheimer’s was mentioned by a couple of committee members, stating that they have witnessed the devastation of the disease in their close family members. A senator mentioned that Barbra Streisand called him, advocating for a Woman’s Heart Center. Unfortunately, no one shared that they have a family member with myalgic encephalomyelitis or chronic fatigue syndrome.  No famous star called to speak on our behalf.  ME doesn’t seem to be on anyone’s radar. We are putting in a lot of effort to try to change that in the future.  You can watch the archived video of the hearing here.  Letter to Congress MEadvocacy is determined to raise awareness of the devastation, lack of care, education and funding for this disease.  We have composed our own letter to Congressional Representatives and have started the process of reaching out to each of our own Representatives, as well as any Senator or Congressman who sits on a Committee that has jurisdiction over the HHS.  What You Can Do In order to strengthen ME patients’ voice on the Hill, our group drew up a letter for U.S. patients to send in to their own congressional representatives telling them why we urgently need $250 million funding for ME.  To simplify the process, MEadvocacy purchased the simple “one click app” which takes about one minute to use and has the ability to instantly reach each individual’s congressman and their two senators.  In addition to sending the "one click" letter, you can help us in our effort to reach as many congressional representatives as possible. We would like to engage you to join our current campaign to reach out to Congress to aid us with our fight for more NIH funding for ME.  As a constituent of your state and district, you have the privilege and right to reach out to and contact the offices of your representatives. You can do this via email, phone or an actual visit.    As part of MEadvocacy.org patient advocacy outreach plan, we have experienced advocates who can assist you with the following in reaching out to your representatives.  writing and e-mailing setting up and making a call setting up and making a visit follow up contact status updates and progress  We are well aware that many ME patients, are not able to physically meet with their representatives in Washington DC or their home states.  In these situations, Congressional Representatives are willing to make themselves (or their legislative staff) available for phone meetings with you or your designated representative.If you would like to partner with MEadvocacy.org to have your voice be heard on the Hill, please contact Susan Kreutzer at mecfsneid@gmail.com to discuss how we can help facilitate this for you.   In Conclusion This has been a very satisfying and a real learning experience for our advocacy group and we know that our efforts to bring about a new type of advocacy platform for patients with this illness offers new hope to represent ME patients more effectively in Congress. We have accomplished so much in just the first quarter of 2015, we welcome you to join us to see how much more we can accomplish together.  We invite you, your family members and friends to join our grassroots advocacy movement  and become a member of our organization to get your voice heard.  You can find us on our website, facebook page and follow us on twitter. Together we can climb the steps to Congress needed to solve this illness. 

ME Patients Visible at The Capitol: Pictures and Videos

  “I don't need a cloak to become invisible.”― J.K. Rowling, Harry Potter and the Sorcerer's Stone ME patients don’t need a cloak to become invisible either. The devastation of this disease is not only the physical misery, it is the loneliness, the inability to be part of society. To compound this agony, the disease is so well “hidden” that many people are disbelieving of it.  Family and friends want us to just snap out of it. Doctors want to give us antidepressants. HHS wants to trivialize the name and marginalize the criteria so that they can continue with their lack of funding and flawed research, thinking that no one will care. Many advocates and patients, including MEadvocacy.org are saying NO MORE!  “Nothing strengthens authority so much as silence.”― Leonardo da Vinci Our group’s aim to raise awareness about these issues gave us the impetus to arrange some type of demonstration in DC. Most severe ME patients are never seen nor heard. We had to find a way for them to have the ability to use their “outside voices”. We knew that most ME patients are too ill and or impoverished to travel and to walk while holding signs. We had to think outside of the box. We needed healthy volunteers; and that’s how the idea of college students standing in for the patients developed. When we presented the idea to the patient community, it was met with great enthusiasm. Patients from all over the world liked the possibility of having a voice and face at the Capitol. They were uplifted by the fact that for two hours, they would be visible to the world, showing the devastation of this “hidden plague” and the neglect by our government. The timing of the demonstration was set to coincide with the congressional appropriations hearings. This is when congress decides the NIH budget for the next fiscal year.  Our intrepid advocate, Susan Kreutzer, kindly volunteered to be our “boots on the ground” in Washington, DC. As we reported last week, she was met with many snags, at every corner, yet forged ahead unfazed.  Susan, enthusiastically led her flock of students, garbed with blue caps, emblazoned with the letters ME. The demonstrators were a true sight to be seen, with images of patients around their fronts and backs, holding signs calling out the U.S. government for their neglect and lack of funding. The demonstrators were a very visible group around the Capitol and the White House.   By the end of the day, the demonstrators felt empathy for the patients they represented and conveyed that feeling to others while distributing the fact sheets we had prepared. This was not the biggest demonstration, but it had a large heart. It was a conspicuous enough contingent to make people stop and look, read the signs, take a fact sheet and ask questions. This was the success of the mission.  Video of the presentation of patients. https://youtu.be/gpmQRk4R44w  -  Due to the drumsounds in the background, it is a bit hard to hear.  Please press CC for closed captioning Video of a compilation of pictures. https://youtu.be/3ZfLrHHBAbU Biographies of patients: The initial intent was to video the reading of every biography in full, but there was not enough time. So, the demonstrators needed to summarize. Here, we have attached full biographies that the demonstrators wore.  Preparations for the demonstration                        

May 12th Awareness Events 2015

  (List courtesy of May12th.org) May 12th has been designated as International Awareness Day for Chronic Immunological and Neurological Diseases (CIND) since 1992. The diseases included in CIND include Myalgic Encephalomyelitis (ME) Chronic Fatigue Syndrome (CFS), Fibromyalgia (FM), Gulf War Syndrome(GWS) and Multiple Chemical Sensitivity (MCS). This document will be used to record events planned for 2015. If you have an event to add, please either email info@may12th.org or post the details of your event on https://www.facebook.com/events/1687966454755997/ . For more information about May 12th International Awareness Day please see www.may12th.org or www.facebook.com/may12th.awareness. There is also a list being maintained here https://www.facebook.com/groups/The.M.E.Chat.Room/permalink/848189741885450/?hc_location=ufi . Note: This list can be accessed at www.bit.ly/May12th2015 .  Worldwide a request will be submitted to Google asking for a Google Doodle for May 12th. A Doodle is the artwork you see on the Google search page. You can show your support for it by LIKEing Facebook page https://www.facebook.com/GoogleDoodle4May12th or by sending your own request to proposals@google.com. We need support from around the world.  Sadly they did not give us a Doodle in past years but we will maintain the page and try again every year until they do. Join all 3 Thnuderclaps that are set up to go off on May 12th ○       https://www.thunderclap.it/projects/23688-may-12th-int-l-awareness-day ○       https://www.thunderclap.it/projects/24471-12-mai-internat-me-cfs-tag ○       https://www.thunderclap.it/projects/24360- Light Up the Night Challenge - see event  https://www.facebook.com/events/398647540275528/  . We are asking you to light up public buildings and your own residence with one of the three colours: blue (ME, CFS), purple (FM) and green (MCS or Lyme). If you light your own house, send a picture to info@may12th.org by May 31st to be counted in the contest. Let us know if you can take a picture of any of these Landmarks: Brighton Wheel (UK), SeaLife Centre (UK), CN Tower (Canada), Toronto, Halifax, Ottawa, Brampton, Charlottetown and Mississauga City Hall (Canada), Montreal Olympic Stadium (Canada), Niagara Falls (Canada), BC Place Stadium (Canada),  Black Tower (UK), Langevan Bridge (Canada), Peace Bridge (Canada-US border), City of Perth Council House(Australia), The Market House, Mullingar (IE), Bangor Town Hall (NI). See Canada for the webcams for viewing Niagara Falls. Proclaim your city or  town by writing your Mayor. For a sample letter see http://bit.ly/May12thProclamation  The website www.may12th.org is getting a facelift this year. Check it out after May 12th. If you need images for May 12th, Wendy Boutilier has provided these https://www.facebook.com/media/set/?set=a.10152354837994513.1073741894.362435824512&type=3 . You can find more images here https://meaware.wordpress.com/badges/ . The #May12BlogBomb is back!  See http://sallyjustme.blogspot.co.uk/2015/04/calling-all-bloggers.html. Tune in to Aunty Acid on May 12th at https://www.facebook.com/auntyacid. Arranged by Fibro Flare. The UK is arranging an international Walk for ME. See event https://www.facebook.com/events/1529930570598706/ .  Decorate your garden or  tie ribbons around trees or mailboxes in one or all of the 3 colours and send a picture to info@may12th.org. Dress in one or all of the 3 colours and tell people. Perhaps dye your hair. You can also by t-shirts etc on zazzle or cafepress. Also capture the moment and send it to info@may12th.org. Here’s one site selling things http://teespring.com/stores/myfibroawarenessmay12 . Let us know if you have a link to list here. Make your own event and let us know about it. If you have ideas for events but aren't well enough to organize it, just send us the idea. We're making a list of ideas for next year and will include yours. It may inspire someone else. Write your elected representatives. Canada has a draft letter you can use and amend to suit your country. See www.bit.ly/May12th2015EmailCanada. If you write one, send it to us so we can create instructions and a draft for your country that others can use. See the UK items for a draft letter from the 25% group. In Canada and Ireland, 2 people have written to their local newspaper and asked for a story on May 12th. Let us know if you can get your local news to report on it. ME AGAIN 2015 Artist Online Show (www.meagain.org) will showcase winners of their submission May 12th and will include a media campaign to promote May 12th Awareness, the illnesses and the artists The Graticast is making a video for May 12th and needs your submissions. See https://www.facebook.com/notes/may-12th-international-mecfs-fm-awareness-day/help-create-a-may-12th-video/10153384771427240 Get your own personalized bear image to help raise awareness for ME.  Michelle will make a bear for anyone for a small donation to her daughters justgiving page. any donation will get a bear.  https://www.justgiving.com/michelle-nunn1/?utm_id=11&fb_action_ids=10153255330903766&fb_action_types=jgdonation%3Asupport&fb_ref=pfp-share-facebook-test-C-control . To see the image go to https://www.facebook.com/photo.php?fbid=858866717540758&set=gm.1695637713988871&type=1&theater Tweeting worldwide is planned. Please use hashtag #may12th when tweeting. Dr Eleanor Stein is hosting a webcast on May 19th with speakers Rory Hornstein, RD, BEd, and Lucinda Bateman, MD. For full details see http://www.eleanorsteinmd.ca/wp-content/uploads/2015/03/May-19th-detailed-information.pdf  Australia City of Perth Council House will light up on May 12th. Do Something for ME - see http://emerge.org.au/wp-content/uploads/2015/03/Brochure-DSFME.pdf Canada Niagara Falls will light up blue on May 12th at 10pm  It can be watched on either of these 2 webcams http://www.earthcam.com/canada/niagarafalls/ or http://www.niagarafallslive.com/niagara_falls_webcam_info.htm City Hall in Mississauga, Ontario will be lit up May 12th with blue, purple and green City Hall in Brampton, Ontario will be lit up purple  May 12th City Hall in Ottawa, Ontario will be lit up blue May 12th City Hall in Halifax, Nova Scotia will be lit with all three colours City Hall in Toronto, Ontario will be lit up May 12th with blue and purple City Hall in Charlottetown, PEI will be lit up with all 3 colours May 12th Calgary Alberta - Langevan Bridge will lit up blue on May 12th Montreal Olympic Stadium in Quebec will be lit with all colours Toronto, Ontario’s CN Tower will be lit with all 3 colours Toronto, Ontario - an event is being planned for Queen’s Park on May 12th. Contact MEAO at info@meao.ca for more details. National ME/FM Action Network will hold an event May 16th in Toronto, Ontario with Dr Alison Bested speaking. See flyer for details https://www.facebook.com/notes/national-mefm-action-network/join-us-in-toronto-may-16-2015-guest-speaker-dr-alison-bested/945382165484956 Vancouver Canada - BC Place STadium , Canada Place - Sails of Light, Convention Centre West, Jack Poole Plaza and Science World will be lit with all 3 colours May 12th May 12th has been proclaimed in the following cities: Ottawa, Mississauga, Brampton, Ramara in Ontario,  Victoria, Nanaimo and Kelowna in British Columbia, Vancouver BC has been proclaimed in perpetuity London, Ontario - London's first Fibromyalgia Awareness & Information Day to be held on Saturday, May 9th from 1:30-4:30pm at Beacock Library, 1280 Huron Street.Details in the event poster on the May 12th event page.  ADVANCE REGISTRATION REQUIRED. Email fmgroup.London@gmail.com to book your seat TODAY! Write a letter to you MP and MPP. See www.bit.ly/May12th2015EmailCanada Opera Mariposa (http://operamariposa.com/)  is presenting TOUR DE FORCE: An Evening of Broadway Showstoppers on Saturday, May 16 @ 7:30 pm at Marpole United Church 1296 West 67th Ave. Vancouver, BC in support of the National ME/FM Action Network.  MEFM Society of BC is holding an event May 24th, 1-5pm at Vancouver General Hospital. Speakers are Dr Daniel Peterson and Staci Stevens. See  https://www.facebook.com/photo.php?fbid=857991267628303&set=gm.1694210557464920&type=1&theater The Peace Bridge will be lit with all 3 colours on May 12th. Sudbury Ontario is holding a Mother’s Day tea on May 9th. See https://www.facebook.com/events/353928461473623/ Dr Eleanor Stein is hosting a webcast on May 19th with speakers Rory Hornstein, RD, BEd, and Lucinda Bateman, MD. For full details see http://www.eleanorsteinmd.ca/wp-content/uploads/2015/03/May-19th-detailed-information.pdf  Italy AISF ONLUS ( the Italian Association For Fibro and CFS)  is holding an event on May 10th in Verona. See http://www.sindromefibromialgica.it/  and http://www.sindromefibromialgica.it/wp-content/immagini/GIORNATA-MONDIALE-.pdf and http://www.sindromefibromialgica.it/wp-content/immagini/nuovo-opuscolo-sindrome-fibromiagica-web.pdf Japan Dr. Kuratsune, a Japanese leading expert on Chronic Fatigue Syndrome (CFS), introduced CFS Awareness Day on this video  https://www.youtube.com/watch?v=hKy8WAldsY0&feature=youtu.be  Northern Ireland The Newry Reporter newspaper is doing a story on ME and will mention global May12th awareness. Bangor Town Hall will be lit May 12th Fibromyalgia Awareness Bangor/Ards & North Down Support Group have arrange for a garden display. See https://www.facebook.com/may12th.awareness/photos/pcb.10152689146277161/10152689141322161/?type=1&theater Netherlands ME Vereniging Nederland will hold their yearly ME Information Day in Breda this year. See  https://www.facebook.com/events/1603084453256260/. On May 12 they will publish all tweets using #‎12MEi.   Republic of Ireland The Irish ME/CFS Association is pleased to announce the following two talks as part of its ME Awareness Month activities in May by Dr. Abhijit Chaudhuri from the UK. See https://www.facebook.com/events/1552467578375374/ The Market House, Mullinger will be lit from 9pm with all 3 colours. All welcome. An event will be held at Bewley’s Hotel Newlands Cross - see https://www.facebook.com/photo.php?fbid=10204974181888890&set=p.10204974181888890&type=1&theater Fibromyalgia Awareness and Advocacy Forum Ireland are selling ribbons and they produced a booklet on Fibromyalgia to raise awareness. See event https://www.facebook.com/events/1401743296791665/1441563366142991/ FMANI Charity Organisation is holding an FM Awareness Day May 9th at the Civic Centre Drumceatt Square, Limavady. See https://www.facebook.com/may12th.awareness/photos/a.404124462160.176713.220534562160/10152689367237161/?type=1&theater . See event https://www.facebook.com/events/1595967060687358/ The Lord Mayor of Dublin will light up the Mansion House in Dublin with blue. South Africa A member of  www.fibromyalgiasa.co.za  will appear on radio and its hoped a newspaper article will be written. Sweden Sweden has produced a Facebook cover photo and profile photo you can use on May 12th. See https://www.facebook.com/may12th.awareness/photos/pcb.10152680806022161/10152680801357161/?type=1&theater and https://www.facebook.com/may12th.awareness/photos/pcb.10152680806022161/10152680801412161/?type=1&theater a “wear something blue” day is planned. See https://www.facebook.com/events/835183533220472/ United Kingdom (UK) Cooking up a blue storm to raise awareness and funds for Invest in ME Research Charity for Myalgic Encephalomyelitis (ME) see https://www.facebook.com/CordonBleuForME Invest in ME’s 10th International ME Conference 2015 will take place on 29th May 2015 in Westminster, London. See https://www.facebook.com/events/1025707540777368/ To be confirmed - Wainhouse Tower, Halifax, West Yorkshire, UK will lit up May 12th Brighton Wheel on Tuesday May 12th will be lit up. Meeting at 8.00 in front of the Wheel with posters and banners and anything you can think of for Awareness for 8.30 Light Up. There will be a photographer from the Argus taking photos at 8.30 The Sea Life Centre in Brighton UK will be lit up during the day May 12th. Fibroduck Foundation has arranged for the Blackpool tower  to be lit up May 12th. It  will be lit up PURPLE, and the Heart BLUE, with FIBRODUCK text running through the heart.We'll also be inviting the press along and giving out information flyers to passers by. We'll also be filming the event so you will all get to see. See http://www.fibroduckfoundation.com/blackpool_tower_may_12th.html . Tymes Trust are holding an event May 11th at Ingatestone Hall. See http://www.tymestrust.org/txt/alert201502invitation.txt  The 25% Group has provided a draft letter to be sent to MP's. See Awareness 2015 on http://www.25megroup.org/campaigning_awareness.html#aware2015 United States (US) New York City - The Caterpillar Walk program is a fundraising campaign designed to raise awareness and support for Fibromyalgia and Chronic Pain. See www.fmcpaware.org/CaterpillarWalkNYC The National Fibromyalgia and and Chronic Pain Association has a list of events in the US on their website http://www.fmcpaware.org/a-day-events-2015.html Washington DC - MEadvocacy.org had a demonstration on April 28. Haines City, Florida and Anaheim, CA has proclaimed the day. #OccupyTheUSDOJ #June2015 is being held in Washington DC on June 1st.   See https://www.facebook.com/events/804422736243381/ The Peace Bridge will be lit with all 3 colours on May 12th.  Springfield, OH has proclaimed the day.      

April MEadvocacy.org Demonstration Update: Act Up 4 ME!

Late Monday, our ME Advocate coordinator arrived in Washington DC. missing her luggage!  With perseverance, the luggage was found, but our poor demonstration signs did not survive the trip.  Onward she prevailed through the night re-creating the signs for our stand-in protesters.    Tuesday 8:30 am, traveling to George Washington University to round up our student stand-in protesters; group of 18 protesters in all.  We aimed for the maximum number before permits would be required.  Such short notice, meant no time to obtain permits.  Each future demonstration, we expect to grow.  Sunny weather meant no rain to deal with like the March mini-demonstration.  That means more people are out and about in the streets of DC. The group soon gathered at Independence Avenue S.E. entrance across from the Rayburn building.  10:00 am, “Time to be Heard!”  The demonstrators engaged passers by, passing out “fact sheets” about ME. .  By 11:05 am, our “blue capped” protesters traveled across the city in 5 cabs on the way to the White House! What a sight with 5 cabs arriving simultaneously with 18 blue capped demonstrators stepping out, holding signs and carrying large pictures of patients in the front and back around their necks.  Another snag; the direct street in front of the White House was closed off due to the visit by the prime minister of Japan!  The demonstration moved to the park area and took the time to read off some of the patients’ bios. The students were real troopers, enjoying the fact that they were helping sick patients do what they couldn’t do themselves. What a great show of enthusiasm!  We had a very busy twittering campaign, running simultaneously with the Act Up for ME Demonstration in Washington DC.  We used the hashtags:  # ACTUP4ME - # MyalgicE - # NeuroME - # MECFS and # MEadvocacy to raise awareness for the event.  Patients were asked to tweet their US representatives using this image.  In addition, MEAdvocacy ran a vigorous campaign, with the simple “one click” app. The message to our US representatives; “we need $250 million in funding for ME”. So far, the stats are pretty impressive.  As of tonight, the “one click” letter has been used by 108 signatures. Each signature reaches 3 representatives; making it a total of 324 letters!  We are a small group of crashed but grateful volunteers and very happy to have had a chance to represent the voice of the ME patient in Washington DC. Our first attempt at “Boots on the Ground” for ME patients has been a great success. More pictures and video to follow.  Our thanks goes to Susan Kreutzer for coordinating and representing us so well in DC! and last but not least Thank you to all our supporters!