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 firstname.lastname@example.org 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.
“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
(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 email@example.com 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 firstname.lastname@example.org. 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 email@example.com 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 firstname.lastname@example.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 email@example.com. 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 firstname.lastname@example.org 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.
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!
PRESS RELEASE - IMMEDIATE Tuesday, April 28, 2015 10:00 am to 11:00 am Washington, DC in front of the Capitol 11:15 am to 12:00 pm Pennsylvania Avenue in front of the White House Myalgic encephalomyelitis (ME) is a debilitating, neuroimmune disease affecting an estimated one million men, women and children in the U.S. It has been described as the “Hidden Plague,” “Polio-like” and a “non HIV/AIDS” disease. Most Americans have never heard of it. Why? ME lacks prominence because the government hasn't taken this disease seriously. In the 1980s, the government renamed the disease the trivializing and belittling name "chronic fatigue syndrome." Federal research funding has been at the bottom of the barrel for decades. A march will take place with students filling in for some of these very ill patients who cannot attend themselves. Wearing photos of real patients and carrying their biographies, students will represent patients too ill to come to DC to march on the Mall. We refuse to let them be invisible any longer. The “voice of the patient” will be heard through the students. The marchers will circle the Capitol grounds on the pedestrian walkway route starting at 10:00 am at the Independence Ave. S.E. entrance (across from the Rayburn Building). They will head north across the (east) front side of the Capitol, and by 10:30 am they will be on the (west) back side of the Capitol moving back in the direction of the Independence Ave S.E. entrance. This march, for the invisible sick who cannot attend in person, will raise awareness with music, signs and voices telling their stories. The marchers will then get into cabs to proceed to the front side of the White House on Pennsylvania Ave from 11:15 am to 12:00 pm. They again will be marching back and forth on the sidewalk and in the street raising awareness about ME. HHS has neglected these patients for the past three decades by withholding proper funding and excluding education about the disease in the curriculum of U.S. medical schools. This has resulted in limited scientific advances and lack of knowledge about the illness by physicians nationwide. The patients, some of them so severely affected as to render them housebound and unable to care for themselves, have been unable to loudly speak out...until now! A grassroots organization, MEadvocacy.org, has been formed to fill the needs of these severely affected patients. MEadvocacy.org has raised funds and organized this demonstration in DC to raise awareness about the illness and to urge HHS to properly address this severe group of patients and to ask for NIH funding to be raised to a level of $250 million a year to bring ME up to par with other similarly burdened diseases. Contact: MEadvocacy.org Colleen Steckel, MEAdvocacy volunteer, e-mail: email@example.com Phone: (937)265-5246
What: A marching demonstration to let Congress know; “We Want Real Funding for ME Now!” Where: Washington D.C., around the Capitol and the White House. When: Next week (week of April 27th) while the U.S. Senate and House Appropriations Committees are holding hearings on proposals for HHS/NIH Budget for 2016. Why: ME patients need a visible presence in Washington D.C. Marching on the Mall is an important tool to use to “Act Up” and demand funding for ME. How: Make a donation and help fund this April Demonstration, bringing a visible presence to Washington D.C. on behalf of ME patients. Donations up to a total of $1000 will be matched! Deadline: Friday April 24th, 11:59 p.m. EDT March 2015 Trial Demonstration Completed On Thursday March 19th, 2015, MEadvocacy.org conducted a trial run demonstration using able bodied college student “stand-ins” to represent ME patients in Washington D.C. They each wore pictures of the ME patients they were representing. Despite the rain, the trial run was very successful. The band of ME patient representatives was quite a sight to see around the Capitol. They certainly inspired people to learn more about ME and the need for more congressional funding. The demonstrators “danced in the rain” on the lawn of the Capitol, which brought many interested onlookers out to the balcony from the Capitol to see what was going on. Click Here for Map of Capital Route Check out photos and video from the demonstration in March. https://www.youtube.com/watch?v=pzPQlkayX0o This trial demonstration was generously financed through a single member’s donation. While we wish we had unlimited resources to cover all advocacy expenses, we are not able to sustain such activities without your help. Upcoming April “Act Up For ME Funding” Demonstration How you can make this event happen: Donate funds towards the demonstration Volunteer use of your photo, name, and short biography Share the information on Facebook and Twitter Details: As you may be aware, due to the severe disabling nature of this disease, it is impossible for most ME patients to leave their beds and homes, much less travel to Washington D.C. and demonstrate. Your donation will go towards the cost of hiring representatives to “stand in” for ME patients, and the cost of materials for the signs that will be carried and worn by the “patient stand-ins.” To help keep our costs for this demonstration down, the travel expenses for this demonstration have been donated by one of our MEAdvocacy.org members, who will be leading this demonstration. We are also reducing labor costs by having our volunteers hand-make our signs. Yes, this saves a lot of money and adds to our grassroots message. We are not a slick and polished organization, but we have the heart and soul of ME patients. Our grassroots advocacy communicates to Congress the profound need of ME patients. Support us and we will make sure that your voice gets heard on the “Mall.” For this demonstration, we plan to use approximately 18 demonstrators to protest for funding on the streets of Washington D.C. The cost of funding a “stand in” patient representative with signage is approximately $65.00 per person. We will need to raise an approximate total of $1200. If you are interested in the chance to be the “face” of an ME patient as a photo worn on the front or the back of one of the demonstrators, you will need to submit the following: Jpg photo Short bio Your permission to use your photo, your name (first names are allowable if you are not comfortable using your full name) and your bio. It is our plan that selected bios will be read on camera. Example: Colleen S -- M.E. sufferer with sudden onset in August of 1989 at age 29. I am unable to work and mostly homebound. My ability to perform normal daily activities is limited and post exertion symptoms mean I am unable to work or engage in normal activities of daily living. I require someone pushing me in a wheelchair to enjoy any outings. Immune dysfunction means I am vulnerable in crowds. Multiple Chemical Sensitivity means my health is at risk anywhere there might be chemicals or perfume like shopping centers or crowds. Food sensitivities caused by this illness mean I must live on a very strict diet. How to Donate Please send in your donations for the demonstration here. An ME blue wristband will be sent to each person donating funds toward this demonstration. How to Submit Photos and Bios Your jpg photo, bio and permission of use can be e-mailed here. (firstname.lastname@example.org) Type "DC Demonstration" in subject line. Possible Future May 12th Demonstration in Washington D.C. If ME patients and their supporters like the idea of our “Act Up for ME Funding” Demonstration. We will consider doing a similar demonstration on May 12th. But as we said, to make this happen, we need your support.
MEadvocacy.org spokesperson, Anne Keith, appeared yesterday on the Hidden Hidden Heroes live talk show with Arielle and Aarin discussing severe myalgic encephalomyelitis (ME). If you missed the live event, you may watch the archived show at the following link: https://www.youtube.com/watch?v=2rWHEPvKwSQ#t=11 (edited to change the link to the Youtube source video, for better performance)
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 Wednesday March 25, at 5:30pm Eastern (4:30pm Central, 3:30pm Mountain, 2:30pm Pacific). Click on the link to access the show: https://plus.google.com/events/cbvr1o095o4qslads7l8ejpb0ls 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.
MEadvocacy.org was formed last year with the purpose of promoting and supporting advocacy efforts for the disease Myalgic Encephalomyelitis (ME). At its inception, organizational goals and certain campaigns were outlined, chosen and adopted. Goals Challenging the three government redefinition projects for "ME/CFS": the Institute of Medicine (IOM) report, the Pathways 2 Prevention (P2P) report and the Center for Disease Control (CDC) Multisite Study. Getting Myalgic Encephalomyelitis (ME) officially recognized by the US government as its own disease. ME has a 60-year history and has been classified as a neurological disease in the World Health Organization's International Classification of Diseases since 1969. Getting a single, clear definition for diagnosis and research, which includes the hallmark symptom of post-exertional relapse, adopted as the official definition for ME. An example is the Canadian Consensus Criteria (CCC) or the International Consensus Criteria (ICC) which have been authored by a majority of our ME experts, clinicians, and researchers. ME experts must be used in decision-making as the current “CFS” literature provides a misleading picture of the disease. Getting government funding to study this devastating disease, similar to the amounts being spent on diseases such as Multiple Sclerosis, Autism, Lupus, Crohn’s Disease, Inflammatory Bowel Disease, Parkinson’s Disease and Alzheimer’s Disease. MEadvocacy.org was set up in support of the name Myalgic Encephalomyelitis (ME) and the use of the expert authored CCC or ICC. MEadvocacy.org challenged the U.S. government-sponsored IOM, P2P and the CDC multi-site processes. We opposed the spending of one million dollars of our tax-paying money in a process to redefine, rename and rebrand the disease when good criteria created by international experts and a historical name already existed. We opposed the lack of government transparency as well as the poor stakeholders’ participation in these processes. Campaigns In January of 2015, thanks to the community’s support of a successful funding campaign, MEadvocacy.org successfully hired the P.R. firm Crowds on Demand. The P.R. firm has been busy initiating various projects such as arranging for radio interviews, facilitating media contacts, and providing representation at the Congressional Inauguration. The P.R. firm had a spokesperson speak on our behalf and deliver questions at the IOM Meeting on February 10th, 2015. The IOM Report The IOM report was “rolled out” on February 10th and was followed by a deluge of media coverage organized by the IOM. The report was made available in advance to Health and Human Services (HHS) and members of the media. ME stakeholders, clinicians, researchers, patients and advocates were kept in the dark until the official reveal. The advocates who advise MEadvocacy.org reviewed the IOM report, the diagnostic criteria and the new name, Systemic Exertion Intolerance Disease (SEID). We compared the results with our stated mission and came to the conclusion that the criteria and name did not meet up with our original goals. The Criteria: The IOM criteria are overly broad and lack essential exclusions. The lack of exclusions will result in the inclusion of active (untreated) psychiatric-induced fatigue or other fatigue conditions. The criteria are too simplistic to properly capture the scope of ME, which is a complex, multi-system disease. The stress on fatigue, as the first/main symptom of the disease, gives the wrong connotation that it is just a “fatiguing” illness. The symptoms overlap too much with the clinical definition of depression. The omission of crucial symptoms that fit the core of the ME definitions such as immune impairments, neurological abnormalities and myalgia will result in misdiagnosis. The lack of recommendation for laboratory testing, such as blood tests to check for viral loads and Natural Killer (NK) cell functions, which will impede possible treatment options. Fatigue and Pain We found inadequacies in the core criteria. For example, pain was left out because myalgia, headaches and pain are not unique to SEID since they are found in many other chronic diseases. However, fatigue was chosen as the primary symptom, although it is a common symptom in many acute and chronic illnesses. Placing fatigue in the top line of the “diagnostic algorithm” puts fatigue back as the primary focus. PEM The inclusion of post-exertional malaise (PEM) as a mandatory symptom is important and very welcome. The recommended two day CPET exercise test can be useful for demonstrating an abnormal response to exertion in patients but it also can be dangerous to some patients. Therefore making this untenable as a biomarker. Neurological Dysfunction Research has shown that ME is a neuro-immune disease. There are definitive findings of neurological and immune dysfunction. It is highly disturbing that symptoms of neurological impairment do not appear as a core symptom. Immune Dysfunction and Orthostatic Intolerance The panel found some immune dysfunctions such as NK cell cytotoxicity. Nevertheless, they decided that it was not specific to SEID, and excluded it from the criteria. Yet, they included Orthostatic Intolerance (O.I.) as a choice of symptoms even though it is clearly not specific to SEID. O.I. appears in many diseases such as Parkinson’s, Addison’s, diabetes and more. Testing and Treatments The report fails to list tests that many specialists currently find valuable, such as Viral panels and NK Cell Function values. This omission may cause insurers to refuse to cover such tests, saying they are unnecessary. Experts use these tests to help determine if treatments like antivirals and immune modulators might help specific patients. The omission of the recommendation to administer these tests and possible treatments is a consequential one. The Name: MEadvocacy.org stated from the start that we believe the name Myalgic Encephalomyelitis, as coined by Dr. A. Melvin Ramsay, is the name that we adopt. In addition, SEID does not properly convey the seriousness of the disease. To define the disease by one of its symptoms does not convey the true complexity and severity of the disease. Exertion intolerance may be interpreted by physicians as a psychosomatic manifestation of "fear avoidance" of exercise. “Exertion” provides the wrong connotation. For example, if we would only stay within our energy envelope, we would be healthy. Unfamiliar doctors may equate exertion with sweat-producing levels of aerobic exercise, when “exertion” can simply be brushing your teeth. The Report: One of the failures of the IOM report has been that it did not clarify the key question, which disease is SEID replacing? Mary Dimmock wrote a guest blog on Jennie Spotila’s site in November 2013, titled “Which Disease is HHS Studying?” In her blog, Mary communicated the reply that she received from HHS to her question: "Both Dr. Lee and Ms. Meck said that the scope of disease to be covered by the new clinical criteria has not been specifically defined at this point and that this will need to be defined as the process goes forward. Dr. Lee indicated that the panel itself would need to resolve this issue and that possible outcomes could be ME as a subgroup of the broader CFS, ME as part of a spectrum that includes these other conditions, or ME as a separately defined disease. Ms. Meck indicated that HHS would be asked to clarify what scope of disease was intended at the first meeting. I raised the concern with Ms. Meck that the scope of disease directly affects panel selection and evidence base selection, but she felt that the panel and process would be able to adjust as needed." The IOM report did not tackle this crucial question and did not provide a clear answer as to which disease they are replacing. In addition, Dr. Lucinda Bateman, in her comment on the IOM report for the ME Global Chronicle, stated, “I don't recall anything in the IOM report that states the term Myalgic Encephalomyelitis, or ME, cannot be used to describe someone who meets published ME criteria. The recommendation is stop using ME/CFS.” MEadvocacy.org is interpreting Dr. Bateman’s statement to mean that ME criteria could be used along with the name Myalgic Encephalomyelitis (ME) as officially recognized under the ICD-10-CM code G93.3. The following are failures of the IOM report, some due to the charge by HHS to the IOM for the study on ME/CFS. HHS charged the IOM panel to produce “simple” criteria that any GP or nurse can easily use. This resulted in overbroad criteria. Such simplified criteria have not been used for other complex diseases. The use of evidence-based medicine (EBM) was not appropriate for this complex disease due to the gap in proper large scale studies directly caused by the lack of appropriate levels of research funding. It did not recommend a specialty which can best care for patients suffering from this complex disease. There are no recommendations for clinical tests to discriminate differential diagnoses. HHS did not charge the panel to recommend treatments. This leaves a void in care for patients. The IOM report did not provide for time to field-test the new criteria before adoption. Unpublished preliminary results from the ongoing CDC multi-site study was included yet other current research was prohibited. For example, even the Lipkin/Hornig study was not considered even though Drs. Klimas and Bateman were authors of that study as well as IOM panel members. Research criteria were not part of the scope for the IOM or P2P studies. This might inappropriately result in the use of the IOM criteria for research as well, even though that was not the intent of the IOM panel members when creating the IOM diagnostic criteria. This was a US government sponsored study. Historically, it is an independent expert medical group who sets criteria for disease, not the government. There is no data about insurance coverage. It remains unknown whether insurance will cover any visits with specialists for this disease. There is no provision for insurance coverage for specialty tests such as viral titers and NK cell function. The current coverage for Social Security disability (SSDI) is based on the Fukuda criteria. The medical evidence currently required for SSDI does not match with the IOM criteria. The IOM report does not provide recommendation for newly diagnosed patients with SEID and/or currently enrolled patients receiving SSDI as to qualifications for disability coverage. The IOM report recommends clinicians to treat the disease symptomatically, yet, there is no recommendation for the most obvious treatment: rest! There is no recommendation for a warning against CBT/GET. There was no mention or special section regarding the severely affected patients. Conclusion For the reasons outlined above, MEadvocacy.org came to the conclusion that we cannot recommend the IOM criteria or the SEID name. After much consideration, we decided that the plan for MEadvocacy.org going forward is to stay the course with the original goals, retaining the name Myalgic Encephalomyelitis (M.E.) as per 2015 ICD-10CM diagnostic code 93.3, and continuing to support ME criteria such as CCC or ICC which have been authored by a majority of our M.E. experts, clinicians and researchers. Additionally, MEadvocacy.org will continue with its commitment to advocate for awareness of the severe ME patients, as well as for the promotion of research into these patients. We will focus on campaigning for funding for research commensurate with other severe chronic illnesses like M.S. and Parkinson’s. Community Since the unveiling of the IOM report, the community has had highly diverse opinions of the result. Some were vocal with their approval and welcomed the changes that were recommended. Some agreed with most of the report but felt that it would need some changes before it was something that they could endorse. Some rejected this as a flawed government-controlled redefinition and rebranding effort. This split in the community has caused a lot of contention and confusion. Some initial supporters of MEadvocacy.org expected MEadvocacy.org to change its position due to their own perception of a better-than-expected report. Others have expressed their support with MEadvocacy.org's position and want them to continue with their stated view. All factions are looking at this with their own thoughts and expectations, each believing that their view is more sensible and will better serve the community. We regret if there was a misunderstanding of what MEadvocacy.org represents. Our hope in writing this article is to clarify our stand, one which has not wavered since the start. We are confident that many in the community share our thoughts and goals.
Due to the publicity from the IOM Criteria release, chronic fatigue syndrome and systemic exertion intolerance disease are in the news. No matter what your opinion of the new name and criteria are, this is a great opportunity to make the public more aware of the crisis of severe ME patients and the great need for more research, as well as draw people to our website where they can become even more educated. We have recently recruited quite a few volunteers to speak to the media in as many cities as possible to get these topics more exposure. This is the first interview from WLWT News in Cincinnati, OH. http://www.wlwt.com/news/low-awareness-often-makes-chronic-fatigue-syndrome-diagnosis-difficult/31715400