Image courtesy of Justice for Karina Hansen Article reposted with kind permission from the ME Global Chronicle 10-7-2015 p.102 The charity Save4Children has been created by the editors of the ME Global Chronicle (http://www.let-me.be) and helps parents whose children have been forced into psychiatric wards by authorities, to try and set them free by legal procedures, if the parents have proven to be incapable of affording needed legal assistance. They helped in Joanne’s case – the German teenager who has been held under psychiatric care for 18 months, and Joanne has been allowed to go home last July. Now they would like to help Karina Hansen. Karina is a severely-ill ME patient who has been held in a hospital against her will for 2 ½ years. Her parents are still not allowed to see her. Her condition is worse now than when she was forcibly removed in 2013. She can no longer speak in full sentences. She sits in a wheelchair and mumbles to herself. She is allowed to wear her earplugs as she becomes very distressed when they have tried to take them from her. When she was first taken, she actively resisted treatment and was therefore given the diagnosis of Pervasive Refusal Syndrome (PRS). This is the same diagnosis as Joanne was given. Now Karina no longer resists treatment and the psychiatrists claim that this is improvement. Karina has never resisted eating, which is a core symptom of PRS, so of course this diagnosis is completely ridiculous. Also, Karina is a young adult and PRS is exclusively a pediatric diagnosis. Although it does not look good for Karina at the moment, the fact that “Joanne” has been released gives us hope. Please Donate If you would like to help, please donate to Save4Children. The money that will be donated will be transferred in mutual deliberation to a volunteer non-profit civil rights group called The Citizens Right’s Group (Borgeretsbevægelse) that has taken up Karina’s case. CRG fights for cases that are examples of principle human rights violations and they are finding many violations in Karina’s case. Donation Instructions for English Language Go to the site http://www.geef.nl/doel/save4children Click on “EN” next to the Facebook icon in the upper right corner, which changes site to English translation Click the "Donate Now" button in the right hand column Enter the amount in Euros, and select the payment method (e.g. for USA: Paypal or credit card) Currently: 1 euro = 1.13 US dollars (click here for latest exchange rate) Fill in your name, and address Add a comment "For Karina Hansen" Select the large black “Donate Now” button Further Information About Karina And Her Case Information about Karina and the case can be found in this and future issues of the ME Global Chronicle and at these sites: Justice for Karina Hansen - find info under notes. https://www.facebook.com/JusticeForKarinaHansen Two videos about Karina from 2013: http://www.youtube.com/watch?v=Dk3e8IWj7M0 http://www.youtube.com/watch?v=JTkkcvlvYf8 The Citizen’s Rights Group – documents in the case in Danish http://xn--borgerretsbevgelsen-xxb.dk/ New documents will be added as they become available. Visit the ME Global Chronicle http://let-me.be https://www.facebook.com/groups/TheMEGlobalChronicle/
Graphic by Wendy Boutilier Artz Studio Unbelievable Situation Severe ME sufferer Karina Hansen of Denmark, at the age of 24, was forcibly removed from her home on Feb. 12, 2013 and placed in a psychiatric facility. Karina was officially diagnosed with ME in 2008 after becoming ill with mononucleosis. This was then followed by several infections - a pattern of this illness many of us with ME recognize. Graphic by Michael Evison She was initially held at Hammel Neurocenter despite pleas to have her return home to her family. The family has been barred from contact. In Sept 2014 she was moved to Tagdaekkervej another facility near the Hammel Neurocenter. Even after this move, she has not been allowed to meet with family. More details about Karina’s removal from her home can be found at https://www.thunderclap.it/fr-CA/projects/8739-justice-for-karina-hansen Quote from Justice for Karina Hansen Thunderclap petition Her family and the ME community have tried various routes to resolve this situation, including pursuing legal action in regard to her care and guardianship. In May 2013 an Avaaz petition was circulated asking for “Justice for Karina” as well as a Change.org petition titled “We ask you to allow Karina Hansen to have the right to a second opinion from a leading ME expert Dr Nigel Speight.”. Both of these petitions are now closed. Then in May 2014, The Coalition for Diagnostic Rights sent a letter to Denmark’s Minister of Health: (http://www.diagnosticrights.org/the-coalitions-letter-on-behalf-of-karina-hansen-text-copy/). Thus far these actions have been to no avail. We cannot stand by idly while one of us is so grossly abused. The fact that this atrocity can be happening in 2015 is unconscionable. Please take the actions below and spread this information widely. The world needs to know about this assault on human rights. What Can You Do To Help? For those on Facebook, join the event at: https://www.facebook.com/events/499460126901603/permalink/499464136901202/ "Cards2karina: Hostage of Denmark - 33 months & 3 birthdays deprived of freedom" Send a birthday card to Karina at the facility and another card to her parents. It is unclear as to whether cards sent to Karina will reach her, so sending a card to her parents, as well, insures she will eventually get our well wishes and her parents will know our community has not forgotten their daughter. Because of the situation and Karina’s severe ill health it has been suggested that the envelopes are decorated with cheerful birthday stickers so Karina can tell the envelope contains a birthday card. For those homebound but with computer access, there are websites where a greeting card can be purchased, personalized, and will mail in a nicely addressed stamped envelope. Starting price including local postage is around $3.59, extra for international shipping to Denmark. One example is http://www.cardstore.com/shop/birthday/cards. Karina Hansen c/o Tagdaekkervej 10, 8450 Hammel, Denmark Hansen Family Klovermarken 8, 7500 Holstebro, Denmark Sign the Avaaz Petition - Justice for Karina https://secure.avaaz.org/en/petition/Justice_for_Karina/?email “Karina suffers with severe Myalgic Encephalomyelitis meaning muscle pain with inflammation of the brain and spinal cord. ME is a neurological disease as noted with the World Health Organization (WHO) G93.3. Every country who belongs to the United Nations must abide by the WHO description of what is a physical disease as well as the United Nations Human Rights. Denmark is holding Karina against her will and forcing her to take part in treatment which can kill her. Denmark believes that ME is the same as Insanity which is not how ME is described in WHO G93.3. Denmark is a member of the European Union, United Nations, Human Rights and WHO.”
Abysmally Low Research Funding Despite having officially recognized the best ME definition of any country (the Canadian Consensus Criteria), Canada has almost nonexistent funding for ME, making research difficult. The Canadian group, the National ME/FM Action Network reports the following statistics: There are 756,000 Canadians diagnosed with ME and/or FM. In the fiscal year, 2014-2015, the Canadian federal government funded 54 cents per ME patient for research, and 71 cents per FM patient. Yes, that's pennies, not dollars. (Note - for comparison, the US rate is $5 per CFS patient.) There are more Canadians with ME and/or FM than Canadians with breast cancer, Parkinson's and multiple sclerosis combined. Each breast cancer patient represents $164.00/annum in federal research funding, each Parkinson's patient represents $353.00 in annual funding, and each MS patient represents $73.00 in annual funding. The National ME/FM Action Network has drawn up a one-page summary. As you will note, this brief summary covers a lot of the bases including prevalence, and the abysmal level of research funding, as well as the economic impact of ME and FM. Vote in the Aviva Contest to Raise Money for Research These statistics may look hopeless, but fortunately, there is something you can do to help. The ME (ME/CFS) Fundraising Group has announced that the National ME/FM Action Network in Canada is competing in the Aviva contest for up to $100,000 for ME and FM research. There is both a public voting and a Final judging phase. The top five entries in our category during the voting phase will advance to the judging phase. If they advance, they are guaranteed $5,000 and have a chance of winning $100,000. Last year they did win $5,000. Public voting runs from October 6th (at noon Eastern Standard Time) through October 23rd (at 4 pm EST). Each person gets eighteen votes and can vote once every twenty-four hours. It appears that international voting is permitted again this year. You can register with just your email or via Facebook at www.avivacommunityfund.org. To register, click on the Login button on the top right corner, then select Sign Up. Fill in the required information and submit it. Aviva will send you an activation email. When the email arrives, click “complete your registration” and you should now be good to go. You can register now. When voting begins, just go to www.avivacommunityfund.org/ideas/acf32536 to cast your votes. Prize money will be used to support biomedical research of ME and FM in Canada. You can read more details at the above link. You can receive a daily reminder to vote via email or through Facebook. To receive an email, just send your email request to firstname.lastname@example.org. To receive a daily reminder through Facebook, join the event at https://www.facebook.com/events/542552745892932/. Please vote DAILY, share contest information widely, and invite your family and friends to join us in this great effort. Thank you very much for your help!
Fighting for Equitable Treatment for ME Patients Inspired by yet another round of egregious actions of the US Department of Health and Human Services against myalgic encephalomyelitis (ME) patients, MEadvocacy.org was launched a year and a half ago. We have approached advocacy in a creative way, utilizing technology to our advantage. In particular, for our website, we’re using the Nationbuilder platform – a technology purpose-built for advocacy. Accomplishments Since our last fundraiser, we have: Represented ME at both the House and Senate NIH Budget Appropriations meetings this past April. Contacted key members of Congress and their staffers were contacted in person and by phone. Disseminated specially prepared information packets were distributed to key members of the Appropriations Committees. Conducted two successful demonstrations in Washington DC. One in March and the other in April of this year. Patients were represented by university students who wore the patients’ pictures and read off their bios at the Mall. Issued 2800 letters to Congressional representatives via the One Click app. Posted 18 blogs outlining our activities as well as pertinent information and news crucial to the community. Raised awareness about NIH's misinformation about the denial of funding to scientists trying to study ME. Testified at the CFSAC August 2015 meeting both orally and in writing. Grown our membership - we currently have 1,180 members. Revamped our home page has a whole new look. The aim is to appeal to newcomers and those in the general public who have very little knowledge, if any, of ME. Future Goals We plan to once again participate in the Budget Appropriations process starting early in 2016. This time we will be addressing the CDC as well as the NIH, so that a repeat of this past year’s attempt at deletion doesn’t recur because the powers that be don’t think that ME is serious or worth consideration. We will continue our efforts to spread ME awareness outside of the “patient bubble” and into the general community. We believe this is crucial to get a critical mass that will have positive results for ME patients. Who Runs This Site and What Does It Cost Our funds for website operations, raised a year ago, are starting to run low. As the membership has grown, so have monthly operating expenses. In particular, we desire to run the One Click Politics app every month, instead of just 3 to 4 months out of the year, in order to keep up the pressure on Congress. So now it’s your turn to step up to the plate. If you believe this website is a valuable resource and wish for us to continue assisting patients and stakeholders like you with advocacy and awareness for ME, please donate. Our goal is to raise $2300, which will keep the site running for the next 12 months* *As per our agreement with May12.org, our fiscal sponsor, 10% of that amount will go to May12.org to cover accounting costs. As May12.org is a 501(c)(3) non-profit, all donations are tax deductible. Both sites are run by patient volunteers, with none of the waste on salaries, buildings, and overhead associated with the large patient organizations. We are not affiliated with any government agency, and operate independently. Please Donate Our goal is to raise $2300 by Sunday, October 18, 2015 at midnight Eastern Daylight Time. Matching Donations, ME Wristbands and More... A generous donor has pledged to match the first $1,000 in donations, so donate now and double your amount! If you make a donation of $50 or greater, you will receive 2 ME wristbands as shown in the photo (kitten not included). In addition, if you make a donation of $1 or greater, you can submit a name for the kitten pictured. The kitten’s mother was pregnant when rescued by one of our volunteers. The young male pictured is the lone survivor of that litter. He’s a real fighter and needs a name. Make your suggestion in the comments section below this blog article. Names submitted without a donation will not be considered.
Image captured from video provided by Open Medicine Foundation One Mission: To Figure Out This Disease NIH Deception The deception emanating from the National Institute of Health (NIH) is that ME/CFS funding is a priority for them. They really want to fund our research but 1) there are too few applications coming in to them and 2) they are of poor quality. The fact is the ME community has been lucky to have recently attracted world renowned scientists to the field. These scientists have had their applications for NIH funding for their studies returned unapproved. NIH has approved countless applications for studies from these same scientists, as long as it was not ME/CFS related. Could it be that the famous virus hunter, Dr. Ian Lipkin as well as Dr. Mady Hornig, suddenly lowered the quality of their application when it came to ME? Did Dr. Ronald Davis, the award winning inventor with decades of NIH funded research, abruptly lose his brilliance to be graded “not that great” by the application reviewer? “If There Were Meritorious Applications, We Would Fund Them” - Cheryl Kitt (NIH) Cheryl Kitt presented at the August 18, 2015 CFSAC meeting regarding approving application for research funding from the NIH. Which of the following statements do they expect us to believe? There are too few applications for research in ME/CFS. We only fund the best science applications. If they were meritorious applications, we would fund them. I have to tell you; they are not that great. ME/CFS is a high priority for us. We won’t just throw money out there. It’s not that we don’t want to fund, we would if the applications were there and meritorious that pass review. The Open Medicine Foundation and Ron Davis: World renowned board member of the Open Medicine Foundation (OMF), Dr. Ronald Davis, is a professor of Biochemistry and Genetics at Stanford University School of Medicine and he is the director of the Stanford Genome Technology Center. As part of the End ME/CFS Project, Dr. Davis has started the project's first study; the ME/CFS Severely Ill, Big Data Study. This is the first study looking directly at the Severe ME patients, designated to find a clinically useful diagnostic biomarker. Many distinguished scientists make up Dr. Davis’ team. Some are actual Nobel Prize Laureates, such as Drs. James D. Watson, Mario Capecchi and Paul Berg, They are on the OMF’s ME/CFS Scientific Advisory Board, which determines what studies are conducted in this project, and are investing their unique expertise into solving the problem of our modern time hidden plague. Dr. Davis was named among the top 7 of “Today’s Greatest Inventors”, Atlantic Magazine (2013) and Inventor of the Year, SVIPLA 2011 among the list of twenty distinguished awards earned throughout his career. Dr. Davis and his family struggle with his son’s illness. Davis' son, Whitney, has a severe form of ME and recently appeared in a mini-documentary. This video tells the heart-rending story of how Dr. Davis and his wife care for their son 24/7 with selfless love. The documentary also highlights two other ME patients with their treating doctor, Andy Kogelnik. Recent generous donations have provided funds to begin this historic project, but these studies are expensive. Their goal is $5 million per year for the “End ME/CFS” project. This September 1, 2015 letter signed by Ron Davis and other renowned scientists underscores the difficulties they have had in securing funding from the NIH. Dr. Ron Davis on What Needs to Be Done: Dr. Davis is featured in this video calling NIH out for their rejection of his research application for his Big Data Study using a cohort of the most severe ME patients. Please take the time to listen to the full video. It is full of valuable gems such as Unity and Cooperation While promoting cooperation with other researchers, Davis discusses “Harvard Mode” - in order to have good research, you have to have a competitor. He counters that premise with “There is One Mission: To figure out this disease.” “It is like a startup, where everyone needs to pull their weight. Everyone works together, everyone shares and they have one mission - to make the company succeed.” Accomplish Advancement "Take a collection of patients and collect more data on them than has ever been collected on a human being before." “..with severe patients, we expect the signal to be larger - this will give us a statistical difference.” Referring to his son: "The standard medical procedures that a doctor will run liver function... are fine. But if you look deeper he's not fine... we've found several hundred things that are actually out of whack in his system." “let’s share the data and see what we can do about this disease” “Sometimes, you don’t need to understand the disease to actually cure it! This can be done by accidental observation like noticing that treating patients with Rituximab for lymphoma made ME patients better. Taking note of that is important… This resulted in clinical trials going on right now to treat this disease.” “We need random observation.” "I'm convinced this disease is really treatable." "I'm very optimistic. We are on a very rapid change because of technologies..." NIH Involvement and Funding "We have to get NIH involved and that's going to take some level of pressure. That pressure can come from the public and it can also come from congress." What You Can Do: Donate to the Severely Ill Big Data Study here Tell congress we need $250 million in funding, the historical name ME and ME criteria here Tell Congress that we need a champion to stand up for ME patients here. Sign this ME Action campaign created by Ruddy Red to request that Francis Collins, Director of NIH, authorize a new RFA (Request for Application) for ME/CFS Like and Share this blog on Facebook, Twitter and Google+ to spread the word
As most of you know, the Chronic Fatigue Syndrome Advisory Committee (CFSAC) held their bi-annual meeting on August 18 and 19, 2015. What IS CFSAC: CFSAC, formerly known as the Chronic Fatigue Syndrome Coordinating Committee, was established September 2002. CFSAC is governed by the provisions of the Federal Advisory Committee Act. Its purposes include advising and providing recommendations to the Secretary of Health and Human services. through the Office of the Assistant Secretary for Health (ASH), on issues related to research, access and care for individuals with ME/CFS. The committee is comprised of eleven voting members (including the chair). These include expert researchers, doctors, nurses, insurance specialists and a patient advocate. The current voting members are: Susan M. Levine, M.D. (chair) Adrian M. Casillas, M.D. Rebecca Patterson Collier, R.N., CCM Dane B. Cook, Ph.D. Lisa W. Corbin, M.D. Mary Ann Fletcher, Ph.D. Gary E. Kaplan, D.O. Alisa E. Koch, M.D. Jose G. Montoya, M.D. Faith Newton, Ed.D Donna M. Pearson (patient advocate) The committee also consists of seven non-voting ex-officio members. They include representatives of the following agencies: Agency of Healthcare and Quality (AHRQ), Centers for Disease Control and Prevention (CDC), Center for Medicare and Medicaid Services (CMS), Food and Drug Administration (FDA), Health Resources and Services Administration (HRSA), National Institutes of Health (NIH), Social security Administration (SSA). In addition, the committee presently includes two non-voting liaisons representatives: Solve ME/CFS Initiative (SMCI) - represented by Carol Head International Association for chronic fatigue syndrome/myalgic encephalomyelitis (IACFS/ME) - represented by Steven Kraftchick, MPH, JD The committee meetings are supervised by the Designated Federal Officer (DFO) - represented by Nancy Lee, M.D. The DFO assures coordination and communication between CFSAC and the HHS agencies The August Meetings: The two day meeting was packed with important data, parsing the two recent reports of the IOM and P2P. CFSAC had assigned a workshop led by patient advocate, Donna Pearson, to review and create recommendations based on these two reports. The workshop spent a lot of time and effort delving deeply into the details of the reports. The workshop members presented sixteen recommendations to the committee. These were discussed and voted on by the seven voting members who were present. Fifteen of the recommendations were passed. The one recommendation they could not agree on, was about the name change. Some voting members voted for the IOM suggested name of systemic exertion intolerance disease (SEID). Others pushed for the historical name myalgic encephalomyelitis (ME). They decided to shelve this topic for a later date. The next stage for these recommendations is the process of being reviewed by the various government health agency departments. Then, it will go to Secretary Burwell. This process is expected to take several months. We hope to bring you a response about this two day meeting after we have reviewed the official CFSAC minutes and videos. Our Oral Testimony: On August 19th My name is Colleen Steckel. I represent MEadvocacy.org, a non-profit patient advocacy group managed by patient volunteers with eleven hundred members. Our focus is to advocate for awareness of Severe ME and the urgent need for research and funding. We promote the name Myalgic Encephalomyelitis. We call for ME to be officially recognized as its own distinct disease separate from CFS, under the ICD-10-CM code G93.3, along with a strictly defined ME definition using the Canadian Consensus Criteria, the International Consensus Criteria or better. Our organization fills a great need brought on by years of neglect and malfeasance by our government health agencies. This neglectful abuse has produced a hidden and growing plague affecting at least one million American men, women and children causing lifelong disability and extremely poor quality of life. Despite the good intentions of the CFSAC committee, the outcome has been ineffectual because the government has declined recommendations, erased some parts they didn’t like and totally misrepresented others. We were appalled to witness Health and Human Services pervert the 2012 CFSAC recommendation to redefine the disease starting with the CCC. This corruption as well as the refusal to heed the call of ME experts resulted in a waste of a million dollars only to produce a product inferior to the experts’ recommendations. We submit that the suicides we have witnessed since that date may be a direct result of the despair of patients caused by this abuse of power. According to Leonard Jason and others, the IOM name and definition is no better than the inadequate Fukuda definition. Our trust has been shaken again by the reinstatement of the same DFO, Nancy Lee who allegedly threatened three voting members and is suspected of altering recommendations. CFSAC’s charter states that this committee was created to HELP patients - yet, patients feel unheeded and maltreated. If “help” is what was intended, this has been an epic fail! What do we want? Nancy Lee replaced with someone who will regain the confidence of the ME community. Implement CFSAC recommendations without further delay with emphasis on getting a primer based on the ICC and/or CCC into the hands of physicians as quickly as possible. Include the needs of Severe ME patients in every discussion. $250 Million in funding for biomedical research Answers why funding requests from researchers in our field keep being denied and a plan to remove those roadblocks. Thank you for your time. Our Written Submission: RE: Request for input for CFSAC meeting to be held Aug. 18-19, 2015 MEadvocacy.org is a non-profit patient advocacy group focusing on advocacy and raising awareness of severe ME. We promote the name Myalgic Encephalomyelitis along with the ME criteria authored by ME experts. Our organization is growing rapidly and is currently 1,100 members strong. MEadvocacy.org is filling a great need resulting from our government’s long time neglect and malfeasance. This neglectful abuse has produced an outgrowth of a hidden plague affecting at least one million American men, women and children causing lifelong disability and extremely poor quality of life. While it may be that some members of the CFSAC committee have served with good intentions and have ME patients’ best interests in mind, the committee overall has sadly been ineffectual. Moreover, the malfeasance by the government health agencies, in either declining every recommendation or wrongfully altering them, has resulted in no advances in the care and treatments of those suffering from this disease for over 30 years. In 2004 the following recommendations were made: September 27, 2004 We would urge the DHHS to direct the NIH to establish five Centers of Excellence within the United States that would effectively utilize state of the art knowledge concerning the diagnosis, clinical management, treatment and clinical research of persons with CFS. These Centers should be modeled after the existing Centers of Excellence program, with funding in the range of $1.5 million per center per year for five years. We would urge the DHHS, through the NIH, expedite the issue of an RFA with sufficient set aside funds to attract senior level researchers to engage in the study of CFS. DHHS should fund extramural grants, reviewed by a special emphasis panel knowledgeable CFS, through ROl, R03, P.21, and Directors Pioneer Award mechanisms. The DHHS should provide funds to develop an international Network of Collaborators that would allow for multidisciplinary CFS-related research using standardized criteria accepted by the international CFS research community. Such a network would pool large number of patients from around the world, and would require investigators to develop and employ common protocols. DHHS should provide support and funding for an intramural staffed laboratory committed to CFS research. Eleven years later there is no evidence these recommendations have been considered or effectively implemented. June 2012: 1. CFSAC asks that the Centers for Disease Control and Prevention (CDC) remove the CFS Toolkit (both English and Spanish versions) from the CDC website. 2. CFSAC asks that the appropriate person[s] within HHS work with the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis to make their primer widely available, particularly to primary care providers. 3. CFSAC asks that HHS staff work with Committee members to develop a list of ME/CFS organizations and criteria for posting links to the organizations’ websites on the CFSAC website. 4. CFSAC asks that a link be added to the CFSAC website for the Department of Education-supported Parent Technical Assistance Center Network. 5. CFSAC asks that HHS partner with Committee members and the Department of Education to educate educators and school nurses on ME/CFS affecting children and adolescents. Three years later patients are still struggling to find educated physicians despite the recommendation that HHS make the IACFS/ME Primer widely available. We were appalled to witness the perversion of the March 2014 CFSAC recommendations. Alterations included the omission of references to the Canadian Consensus Criteria. Details about this incident can be found at: http://www.occupycfs.com/2014/11/24/another-cfsac-violation/ This corruption as well as the refusal to heed the call of ME experts to adopt the criteria the experts recommend resulted in a waste of a million dollars only to produce an inferior product. We submit that the suicides we have witnessed since that date may be a direct result of the despair of patients caused by this abuse of power. The resulting new IOM name has been found to be no better than the degrading moniker “CFS” as well as the inadequate Fukuda definition according Leonard Jason and others. This is inexcusable, when we already have the Canadian Consensus Criteria (CCC) and the International Consensus Criteria (ICC) authored by ME experts which better defines the authentic disease ME. In addition, we do not feel confident that the voting CFSAC members are free to act and speak on their own accord. There were allegations by voting members; Eileen Holderman, MaryAnn Fletcher and one more member that they were threatened by the DFO, Nancy Lee, when questioning the route that CFSAC was taking regarding this recommendation. Patients have lost all confidence in the efficiency and autonomy of the CFSAC voting panel. Our comfort level has been shaken again by the reinstatement of the same DFO, Nancy Lee. We feel Nancy Lee must be replaced with someone who will work for the well-being of patients in order to restore credibility in the ME community. CFSAC’s charter states that this committee was created to HELP patients. But instead patients feel unheeded and maltreated. If “help” is what was intended, this has been an epic fail! We call for ME to be officially recognized as its own distinct disease separate from Chronic Fatigue Syndrome, under the ICD-10-CM code G93.3, along with a strictly defined ME definition using the Canadian Consensus Criteria, the International Consensus Criteria or better. We call for NIH funding for ME be raised to at least $250 million, an amount on par with similar diseases such as MS. We also demand that all research funding be spent on the biomedical aspects of ME and that severe ME patients be studied. In addition, we demand that grant reviewers familiar with ME be used, as even excellent proposals from world renowned researchers such as Ian Lipkin and Ron Davis are being denied. We, at MEadvocacy.org anxiously await some real action to help stop the neglect and malfeasance of those of us suffering from Myalgic Encephalomyelitis. MEadvocacy Advisory Group Mary Ann Kindel Tracey Temple Smith Colleen Steckel Gabby Klein Joni Comstock Kathryn Stephens Edit - One click option letters to congressional representatives is currently closed.
The next meeting of the Chronic Fatigue Syndrome Advisory Committee is this week Tuesday, Aug 18 and Wednesday August 19, from 9am - 5pm EDT (Eastern Daylight Time). Sessions regarding the recent Institute of Medicine and Pathways to Prevention redefinition projects are on the agenda. We also hope to hear something about the recent proposal to defund CFS at the CDC, and the speculation of CFS moving out of the Office of Womens' Health to NINDS (an institute with a much bigger budget). Agenda - http://www.hhs.gov/advcomcfs/meetings/agendas/cfsac20150818-agenda.html.htmlMEadvocacy.org will be making an oral presentation on Wednesday during the public comments (10-11am). You may watch the live video stream here http://www.hhs.gov/live-1/, or access the listen only toll free teleconference line at dial 888-455-5629, passcode: 9717791#
“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
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
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!