Severe ME Day: Understanding and Awareness

  “In my experience (ME/CFS) is one of the most disabling diseases that I care for, far exceeding HIV disease except for the terminal stages.” ( Daniel L. Peterson, M.D.)  Myalgic Encephalomyelitis (ME) is a chronic, often severely disabling disease, that affects the autonomic nervous system, immune system, endocrine system, among others. It afflicts over one million people in the United States alone and as many as 17 million worldwide.  ME is a disease that robs individuals of their health, similar to untreated HIV. There are those that refer to ME as non-HIV AIDS - with good cause, as the disease can leave sufferers confined to a bed, with little capacity to fend for themselves. What many might not know is that one out of four people with ME (PWME) over time become so ill as to not only be disabled, and not just housebound, but completely bedridden. These patients struggle to do what most take for granted like brushing one's hair without gasping for air, feeding themselves, or getting to the bathroom unassisted. For them, life is reduced to survival, with the 4 walls of their bedroom becoming their prison, and the outside world a faded distant memory.  Chances are that many people have met someone that has gone on to develop ME, and they don't even know it because those with Severe ME end up disappearing into darkened rooms and rarely seen.  August 8th was a day dedicated day to raise awareness of the plight of the severely affected ME patients.  “Research has shown that ME/CFS has been found to be more disabling than MS, heart disease, virtually all types of cancer, patients undergoing chemotherapy or hemodialysis.” - (Prof. Malcolm Hooper and Eileen Marshall)    Most researchers agree ME manifests in three categories: Mild, Moderate and Severe. To date there is no cure and no meaningful universally effective treatments. For many of the sick undone by Severe ME, there is little more to look forward than darkened and hushed rooms (due to light and sound sensitivities), and incapacitating weakness, absolute exhaustion, and far too often, unrelenting pain.  Severe ME for loved ones, means…  ...they need help with personal care ...cannot walk and even turning over in bed is painful ...unable to cut their own food, even a banana ...many are forced to use BOTH hands to lift a small plastic drinking glass ...daily water rationing for many because they lack the strength to walk the 10 steps to the bathroom ...being too weak to brush their hair or teeth ...requiring dark towels be taped over the black-out curtains in their bedroom, because the stimulation of even a few pinpricks of light can prove agonizing ...speech reduced to whispering, if sufferers can muster the strength to speak at all ...being tube fed. For many Severe ME patients, the ability to feed themselves eventually slips away. Plight The plight of these severe patients has been misunderstood, trivialized and even disbelieved. They suffer in silence, in darkened rooms because their hyper-sensitivities to light, sound and touch make it impossible for them to lead a normal life.  Severe ME patients are seldom seen by a doctor because they cannot travel to a doctor’s office. Consequently, they have not taken part in studies and their unique symptoms have been missed or ignored in the medical literature for the disease.  Some of these symptoms include seizures, paralysis, intractable pain, blackouts, coma-like experiences, incontinence, tremors, cardiac dysfunction, dyscalculia, and dysphasia.  By neglecting these severest patients, the medical community - and especially government health agencies - have done a great disservice to ME patients.  This neglect has arguably compromised the ability of government health agencies  to develop proper disease criteria.  It is hard to imagine any other illness having their severest patients omitted from research studies, criteria development, and even choosing a name for the disease!  “Our (ME/CFS) patients are terribly ill, misunderstood, and suffer at the hands of a poorly informed medical establishment and society” (Nancy Klimas, M.D.)  Medical Abuse  To bring awareness to Severe ME, August 8th was selected because it was Sophia Mirza’s birth date. Sophia died in 2005 from Severe Myalgic Encephalomyelitis at the young age of 32, many feel as a result of medical abuse and ignorance. Shockingly 10 years later, this medical abuse is still going on even today.  This date was chosen in remembrance of Sophia and all those whose lives were shortened because of ME.  The devastating symptoms of these Severe ME patients still are not understood by many in the medical profession. The result for many Severe ME sufferers has been catastrophic. Due to medical and societal ignorance, ME patients have been inappropriately “sectioned” as mental patients against their will, despite suffering no mental illness. Children and young adults with ME have been forcibly taken from their parents and denied proper medical care as per ME expert clinicians.  Medical education about the true nature of this disease is the only way forward to make sure the atrocious abuse of these severely ill patients stops. Hope Awareness of the severity of ME is growing and the need to include the severe patients in current studies has been acknowledged.  Sue Dremann wrote an article in the Palo Alto Weekly:"Living on Empty: Chronic Fatigue Syndrome Saps its Victims But New Research May Find the Cause. It features three ME sufferers, with a focus on a very severely affected patient, Whitney Dafoe, the son of Dr. Ron Davis.  The End ME/CFS project of the Open Medicine Foundation has started an “ME/CFS Severely Ill, Big Data Study”.  This study will conduct a comprehensive, “Big Data” analysis on severely ill patients with the goal of finding sensitive and distinctive molecular biomarker(s).  The geneticist, Dr. Davis of the Chronic Fatigue Syndrome Research Center (CFSRC) at Stanford, has recruited Nobel laureates James D. Watson, PhD and Mario R. Capecchi, PhD among others as advisors to create what he envisions as a collaborative ME/CFS research effort akin to the Human Genome Project.  ME Research UK study:  Severely affected ME/CFS patients – a geographically defined study.  “This aim of this exploratory study is to raise the curtain on this severely overlooked group of patients...”  What You Can Do  Donate here for the ME/CFS Severely Ill Big Data Study.  They need all the private funding that we can give them because their submission for NIH funding has just been rejected!  Join our two one click easy campaigns to reach and inform every congressional representative of this neglect.            http://www.meadvocacy.org/tell_congress_to_increase_funding_for_me_research            http://www.meadvocacy.org/tell_congress_we_need_an_me_champion Links and Resources Greg and Linda Crowhurst have more guidance on how to care for someone with Severe ME at their ‘Stonebird’ website. Severe ME: Notes for Carers - Resource book for carers of people with Severe ME A range of items to help promote Severe ME Understanding & Remembrance are available at the 25% ME Group’s website: just follow the link from the Home page. Severe ME Understanding and Remembrance Day – Facebook page Severe ME Day – Video Other Severe ME links… Karina Hanson – Danish ME patient held in hospital against her will. In Memoriam – The National CFIDS Foundation compiled this list to make people aware of the seriousness of CFIDS/ME Voices from the Shadows - One hour documentary bringing witness to the plight of the severely ill ME patients in the U.K. Diane’s story:  – The carer of her daughter; severely ME patient Lily Don’t let ME Die in Vain – Facebook page dedicated to take active steps and support for the 25% of severely affected Emily Collingridge – 1981-2012 Lynn Gilderdale-  Diary JK Rowbory – Severe ME site The World of One Room: Seven Years in the Making – Severe ME awareness video Laurel’s October 2009 CFSAC testimony – Severe ME awareness video Sarah-Louise Jordan. – Severe ME awareness video Elizabeth D’Angelo Fine Art - Artwork of Severe ME artist   Come join our over 1,100 members in raising awareness for severe ME all year long- here Please use #SevereME on twitter for this special day along with #MyalgicE #MECFS

Tell Congress We Need An ME Champion

Llewellyn King of The White House Chronicle, a long time supporter and fighter for ME patients, has written an article on The Hill's "Congress Blog".   Mr. King's blog is a plea to members of congress, seeking a "champion" to take on the campaign for ME. The emphasis is on raising awareness about the devastation ME causes and to persuade HHS to fund research for a cure.    Continue reading

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: [email protected] 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 [email protected] 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