Diseasemaps.org - Let's Put ME on the Map!

As you may know, the general public, medical professionals and politicians are mostly unaware of the prevalence and severity of myalgic encephalomyelitis (ME) in the U.S. and around the world. A visual representation can have more impact than words or numbers, or as a wise person once said “A picture is worth a thousand words”. A visual map representing the thousands and thousands of ME patients in every nation, state, city and voting district can be used to show how many of a politician’s constituents are affected, and hopefully spur them to action on our behalf.  Continue reading

MEadvocacy Reaches Members of Congress

    Appropriations Submissions Each year the Senate and House appropriations committees take submissions for planning the federal budget and expenditures. This includes funding for federal disease research. This spring, MEadvocacy once again sent in submissions outlining the devastating nature of myalgic encephalomyelitis (ME) and the need for research.   Continue reading

Circulatory Impairment in Myalgic Encephalomyelitis: A Preliminary Thesis

  Guest blog by Maryann Spurgin, Ph.D. "An idea is always a generalization, and generalization is a property of thinking. To generalize means to think." ~ Georg Wilhelm Friedrich Hegel “As the biggest library if it is in disorder is not as useful as a small but well-arranged one, so you may accumulate a vast amount of knowledge but it will be of far less value than a much smaller amount if you have not thought it over for yourself.” ~Arthur Schopenhauer "Out-of-date theories are not in principle unscientific because they have been discarded." ~Thomas S. Kuhn, The Structure of Scientific Revolutions "We see the world in terms of our theories." ~Thomas S. Kuhn Note: I wrote this proposal in the late Fall of 2015 and in early 2016 as a work proposal (Circulatory Impairment in Myalgic Encephalomyelitis: A Work Proposal —by Maryann Spurgin, Ph.D. January 16, 2016  https://docs.google.com/document/d/1y_SoLHW8NaxBrI8bmBiY-ehBZfd3Ji7yttV50bG5qRY/mobilebasic?pli=1). In mid January I began sending it to medical schools, and in late January/early February, I sent an earlier, longer version to some privately funded research teams, including to Ron Davis. Very recently, on May 27, 2016, I sent it to the research team at NIH at the following email addresses: Continue reading

Eileen Holderman CFSAC Public Comment About NIH Study

  CFSAC Public Comment May 18, 2016 Eileen Holderman   Good afternoon to the Advisory Committee Members and to all stakeholders listening.  My name is Eileen Holderman - I'm an advocate for ME, GWI and other neuroimmune diseases.  Recently, I served as consultant to MEadvocacy, an organization advocating on behalf of nearly 1 million American men, women and children suffering from Myalgic Encephalomyelitis (ME).  Continue reading

Why We Need May Awareness Day - Global Protest and More

Why We Need to Raise Awareness  Disease sufferers have different ways they try to raise awareness of their plight.  This is often done by distinct colored ribbons and assigned months when events and activities are geared toward raising awareness for that particular disease.  Myalgic encephalomyelitis (ME) uses the color blue for the awareness ribbon and the month of May has been assigned as the month of awareness.  All patients suffering from any illness have dire needs for attention, whether for funding for research or for proper care and treatment.  ME patients, because of the history of neglect and malfeasance by the government health agencies, have the added responsibility to testify about their personal stories and about the dismal history of medical abuse.  Continue reading

Easy Way to Create May Awareness

May Awareness May is awareness month for the related complex immunologic and neurologic diseases (CIND):   ME, CFS, Lyme, GWI, FM and MCS.  May 12 is the specific date chosen to raise awareness for these diseases, because it’s Florence Nightingale’s birthday. After her groundbreaking work in nursing, Nightingale became bedridden for decades from a mysterious disease similar to ME.  This year, May12.org has developed an easy way to spread awareness across social media with a May awareness overlay for your Facebook, Twitter or other social media profile photo. Continue reading

Dutch ME-Community Appeals for Global Help: Sign Petition

Guest Blog submitted by  the ME Global Chronicle staffMUPS (Medically Unexplained Physical Symptoms) This is a guest post by ME Global Chronicle, a bi-monthly international online magazine, covering news on myalgic encephalomyelitis from all over the world.  They are currently featuring a petition to the Dutch Health Council calling for the replacement of panel members to a government advisory committee who have a psychogenic bias of the disease.   Continue reading

NIH Sidesteps Critical Problems with the ME/CFS Study

MEadvocacy would like to thank advocate Eileen Holderman for her consultation on this blog post.   MEadvocacy sent a petition to NIH to cancel and restart the NIH Intramural Study on ME/CFS because of the many significant problems with the study’s design and protocol and lack of myalgic encephalomyelitis (ME) stakeholders’ input.  Since then, NIH has used various and confusing ways to communicate new and changing information about the study.  As further information became available, we voiced our deep concerns about many of the significant issues with the study: multiple and ever-changing criteria, some of which are deeply flawed; biased and/or inexperienced investigators and advisors; additional problems with the study’s design; mistrust of the government health agencies and the problems with the way NIH is communicating.  This is a unique opportunity to design a robust study using the comprehensive resources of the NIH Clinical Center.  It is crucial that this study be done with ME experts' and stakeholders' input from start to finish. This will ensure meaningful results and scientific advancement for patients who suffer from this serious, disabling disease.   Continue reading

NIH Telebriefing Presentations and Protocol in a Nutshell

MEadvocacy attended the National Institutes of Health [NIH] telebriefing on March 8th, 2016.   We issued a blog on March 9th with the question that we posted to NIH and the reply we received. In this blog, we are giving the highlights of several presentations from NIH and National Institute of Neurological Disorders and Stroke [NINDS] regarding intramural and extramural NIH research.  Many questions and concerns still remain, with some additional new ones. We will follow up with a blog with commentary on the call and the new protocol posted on the NIH website. The NIH telebriefing audio file, released to us, is now available here. [Photo of National Institutes of Health Clinical Center] NIH Presentations Summary of opening remark by NIH director, Dr. Francis Collins Dr. Collins personally welcomed us to what he hoped will be an ongoing conversation about ME/CFS research. “...and how we can move the needle forward together when characterizing the cause of this perplexing disorder to help with better diagnosis and treatment.” He stressed that the institute and director are very committed to move the science forward; with the intramural activities as well as extramural programs. Continue reading

NIH Obliquely Dismissed 725 Voices While Stating that Patients' Input Matters

  MEadvocacy’s Question and Reply at the NIH Telebriefing, March 8, 2016 MEadvocacy took part in the 10:00 am EST teleconference today from the NIH, which included a capacity of 100 listeners.  There was an initial introduction by NIH director Dr. Francis Collins, followed by presentations from NINDS director Dr. Walter Koroshetz, NINDS program director Dr. Vicky Whittemore, primary investigator Dr. Avindra Nath and lead investigator Dr. Brian Walitt. The presentations were followed by a Q&A period. Advocates had the opportunity to submit questions that were addressed by the panel, if chosen during the allotted time period. MEadvocacy will elaborate on the full briefing at a later date.  For this blog, we are submitting the question that we posed to the NIH followed with their reply. Continue reading