What: A marching demonstration to let Congress know; “We Want Real Funding for ME Now!” Where: Washington D.C., around the Capitol and the White House. When: Next week (week of April 27th) while the U.S. Senate and House Appropriations Committees are holding hearings on proposals for HHS/NIH Budget for 2016. Why: ME patients need a visible presence in Washington D.C. Marching on the Mall is an important tool to use to “Act Up” and demand funding for ME. How: Make a donation and help fund this April Demonstration, bringing a visible presence to Washington D.C. on behalf of ME patients. Donations up to a total of $1000 will be matched! Deadline: Friday April 24th, 11:59 p.m. EDT March 2015 Trial Demonstration Completed On Thursday March 19th, 2015, MEadvocacy.org conducted a trial run demonstration using able bodied college student “stand-ins” to represent ME patients in Washington D.C. They each wore pictures of the ME patients they were representing. Despite the rain, the trial run was very successful. The band of ME patient representatives was quite a sight to see around the Capitol. They certainly inspired people to learn more about ME and the need for more congressional funding. The demonstrators “danced in the rain” on the lawn of the Capitol, which brought many interested onlookers out to the balcony from the Capitol to see what was going on. Click Here for Map of Capital Route Check out photos and video from the demonstration in March. https://www.youtube.com/watch?v=pzPQlkayX0o This trial demonstration was generously financed through a single member’s donation. While we wish we had unlimited resources to cover all advocacy expenses, we are not able to sustain such activities without your help. Upcoming April “Act Up For ME Funding” Demonstration How you can make this event happen: Donate funds towards the demonstration Volunteer use of your photo, name, and short biography Share the information on Facebook and Twitter Details: As you may be aware, due to the severe disabling nature of this disease, it is impossible for most ME patients to leave their beds and homes, much less travel to Washington D.C. and demonstrate. Your donation will go towards the cost of hiring representatives to “stand in” for ME patients, and the cost of materials for the signs that will be carried and worn by the “patient stand-ins.” To help keep our costs for this demonstration down, the travel expenses for this demonstration have been donated by one of our MEAdvocacy.org members, who will be leading this demonstration. We are also reducing labor costs by having our volunteers hand-make our signs. Yes, this saves a lot of money and adds to our grassroots message. We are not a slick and polished organization, but we have the heart and soul of ME patients. Our grassroots advocacy communicates to Congress the profound need of ME patients. Support us and we will make sure that your voice gets heard on the “Mall.” For this demonstration, we plan to use approximately 18 demonstrators to protest for funding on the streets of Washington D.C. The cost of funding a “stand in” patient representative with signage is approximately $65.00 per person. We will need to raise an approximate total of $1200. If you are interested in the chance to be the “face” of an ME patient as a photo worn on the front or the back of one of the demonstrators, you will need to submit the following: Jpg photo Short bio Your permission to use your photo, your name (first names are allowable if you are not comfortable using your full name) and your bio. It is our plan that selected bios will be read on camera. Example: Colleen S -- M.E. sufferer with sudden onset in August of 1989 at age 29. I am unable to work and mostly homebound. My ability to perform normal daily activities is limited and post exertion symptoms mean I am unable to work or engage in normal activities of daily living. I require someone pushing me in a wheelchair to enjoy any outings. Immune dysfunction means I am vulnerable in crowds. Multiple Chemical Sensitivity means my health is at risk anywhere there might be chemicals or perfume like shopping centers or crowds. Food sensitivities caused by this illness mean I must live on a very strict diet. How to Donate Please send in your donations for the demonstration here. An ME blue wristband will be sent to each person donating funds toward this demonstration. How to Submit Photos and Bios Your jpg photo, bio and permission of use can be e-mailed here. (email@example.com) Type "DC Demonstration" in subject line. Possible Future May 12th Demonstration in Washington D.C. If ME patients and their supporters like the idea of our “Act Up for ME Funding” Demonstration. We will consider doing a similar demonstration on May 12th. But as we said, to make this happen, we need your support.
MEadvocacy.org spokesperson, Anne Keith, appeared yesterday on the Hidden Hidden Heroes live talk show with Arielle and Aarin discussing severe myalgic encephalomyelitis (ME). If you missed the live event, you may watch the archived show at the following link: https://www.youtube.com/watch?v=2rWHEPvKwSQ#t=11 (edited to change the link to the Youtube source video, for better performance)
MEadvocacy.org spokesperson, Anne Keith, will be discussing ME on the Hidden Heroes live talk show with Arielle and Aarin. The show is a Google+ Hangouts On Air live broadcast, which will air Wednesday March 25, at 5:30pm Eastern (4:30pm Central, 3:30pm Mountain, 2:30pm Pacific). Click on the link to access the show: https://plus.google.com/events/cbvr1o095o4qslads7l8ejpb0ls Here's a link to a time zone converter so you can calculate for your time zone - http://www.timeanddate.com/worldclock/converter.html You don't need to be a member of Google+ to watch the show. I am not sure if the show will open up the floor for questions, but if so, you will need to be logged into Google+ to do that. The show will also be archived for future viewing.
MEadvocacy.org was formed last year with the purpose of promoting and supporting advocacy efforts for the disease Myalgic Encephalomyelitis (ME). At its inception, organizational goals and certain campaigns were outlined, chosen and adopted. Goals Challenging the three government redefinition projects for "ME/CFS": the Institute of Medicine (IOM) report, the Pathways 2 Prevention (P2P) report and the Center for Disease Control (CDC) Multisite Study. Getting Myalgic Encephalomyelitis (ME) officially recognized by the US government as its own disease. ME has a 60-year history and has been classified as a neurological disease in the World Health Organization's International Classification of Diseases since 1969. Getting a single, clear definition for diagnosis and research, which includes the hallmark symptom of post-exertional relapse, adopted as the official definition for ME. An example is the Canadian Consensus Criteria (CCC) or the International Consensus Criteria (ICC) which have been authored by a majority of our ME experts, clinicians, and researchers. ME experts must be used in decision-making as the current “CFS” literature provides a misleading picture of the disease. Getting government funding to study this devastating disease, similar to the amounts being spent on diseases such as Multiple Sclerosis, Autism, Lupus, Crohn’s Disease, Inflammatory Bowel Disease, Parkinson’s Disease and Alzheimer’s Disease. MEadvocacy.org was set up in support of the name Myalgic Encephalomyelitis (ME) and the use of the expert authored CCC or ICC. MEadvocacy.org challenged the U.S. government-sponsored IOM, P2P and the CDC multi-site processes. We opposed the spending of one million dollars of our tax-paying money in a process to redefine, rename and rebrand the disease when good criteria created by international experts and a historical name already existed. We opposed the lack of government transparency as well as the poor stakeholders’ participation in these processes. Campaigns In January of 2015, thanks to the community’s support of a successful funding campaign, MEadvocacy.org successfully hired the P.R. firm Crowds on Demand. The P.R. firm has been busy initiating various projects such as arranging for radio interviews, facilitating media contacts, and providing representation at the Congressional Inauguration. The P.R. firm had a spokesperson speak on our behalf and deliver questions at the IOM Meeting on February 10th, 2015. The IOM Report The IOM report was “rolled out” on February 10th and was followed by a deluge of media coverage organized by the IOM. The report was made available in advance to Health and Human Services (HHS) and members of the media. ME stakeholders, clinicians, researchers, patients and advocates were kept in the dark until the official reveal. The advocates who advise MEadvocacy.org reviewed the IOM report, the diagnostic criteria and the new name, Systemic Exertion Intolerance Disease (SEID). We compared the results with our stated mission and came to the conclusion that the criteria and name did not meet up with our original goals. The Criteria: The IOM criteria are overly broad and lack essential exclusions. The lack of exclusions will result in the inclusion of active (untreated) psychiatric-induced fatigue or other fatigue conditions. The criteria are too simplistic to properly capture the scope of ME, which is a complex, multi-system disease. The stress on fatigue, as the first/main symptom of the disease, gives the wrong connotation that it is just a “fatiguing” illness. The symptoms overlap too much with the clinical definition of depression. The omission of crucial symptoms that fit the core of the ME definitions such as immune impairments, neurological abnormalities and myalgia will result in misdiagnosis. The lack of recommendation for laboratory testing, such as blood tests to check for viral loads and Natural Killer (NK) cell functions, which will impede possible treatment options. Fatigue and Pain We found inadequacies in the core criteria. For example, pain was left out because myalgia, headaches and pain are not unique to SEID since they are found in many other chronic diseases. However, fatigue was chosen as the primary symptom, although it is a common symptom in many acute and chronic illnesses. Placing fatigue in the top line of the “diagnostic algorithm” puts fatigue back as the primary focus. PEM The inclusion of post-exertional malaise (PEM) as a mandatory symptom is important and very welcome. The recommended two day CPET exercise test can be useful for demonstrating an abnormal response to exertion in patients but it also can be dangerous to some patients. Therefore making this untenable as a biomarker. Neurological Dysfunction Research has shown that ME is a neuro-immune disease. There are definitive findings of neurological and immune dysfunction. It is highly disturbing that symptoms of neurological impairment do not appear as a core symptom. Immune Dysfunction and Orthostatic Intolerance The panel found some immune dysfunctions such as NK cell cytotoxicity. Nevertheless, they decided that it was not specific to SEID, and excluded it from the criteria. Yet, they included Orthostatic Intolerance (O.I.) as a choice of symptoms even though it is clearly not specific to SEID. O.I. appears in many diseases such as Parkinson’s, Addison’s, diabetes and more. Testing and Treatments The report fails to list tests that many specialists currently find valuable, such as Viral panels and NK Cell Function values. This omission may cause insurers to refuse to cover such tests, saying they are unnecessary. Experts use these tests to help determine if treatments like antivirals and immune modulators might help specific patients. The omission of the recommendation to administer these tests and possible treatments is a consequential one. The Name: MEadvocacy.org stated from the start that we believe the name Myalgic Encephalomyelitis, as coined by Dr. A. Melvin Ramsay, is the name that we adopt. In addition, SEID does not properly convey the seriousness of the disease. To define the disease by one of its symptoms does not convey the true complexity and severity of the disease. Exertion intolerance may be interpreted by physicians as a psychosomatic manifestation of "fear avoidance" of exercise. “Exertion” provides the wrong connotation. For example, if we would only stay within our energy envelope, we would be healthy. Unfamiliar doctors may equate exertion with sweat-producing levels of aerobic exercise, when “exertion” can simply be brushing your teeth. The Report: One of the failures of the IOM report has been that it did not clarify the key question, which disease is SEID replacing? Mary Dimmock wrote a guest blog on Jennie Spotila’s site in November 2013, titled “Which Disease is HHS Studying?” In her blog, Mary communicated the reply that she received from HHS to her question: "Both Dr. Lee and Ms. Meck said that the scope of disease to be covered by the new clinical criteria has not been specifically defined at this point and that this will need to be defined as the process goes forward. Dr. Lee indicated that the panel itself would need to resolve this issue and that possible outcomes could be ME as a subgroup of the broader CFS, ME as part of a spectrum that includes these other conditions, or ME as a separately defined disease. Ms. Meck indicated that HHS would be asked to clarify what scope of disease was intended at the first meeting. I raised the concern with Ms. Meck that the scope of disease directly affects panel selection and evidence base selection, but she felt that the panel and process would be able to adjust as needed." The IOM report did not tackle this crucial question and did not provide a clear answer as to which disease they are replacing. In addition, Dr. Lucinda Bateman, in her comment on the IOM report for the ME Global Chronicle, stated, “I don't recall anything in the IOM report that states the term Myalgic Encephalomyelitis, or ME, cannot be used to describe someone who meets published ME criteria. The recommendation is stop using ME/CFS.” MEadvocacy.org is interpreting Dr. Bateman’s statement to mean that ME criteria could be used along with the name Myalgic Encephalomyelitis (ME) as officially recognized under the ICD-10-CM code G93.3. The following are failures of the IOM report, some due to the charge by HHS to the IOM for the study on ME/CFS. HHS charged the IOM panel to produce “simple” criteria that any GP or nurse can easily use. This resulted in overbroad criteria. Such simplified criteria have not been used for other complex diseases. The use of evidence-based medicine (EBM) was not appropriate for this complex disease due to the gap in proper large scale studies directly caused by the lack of appropriate levels of research funding. It did not recommend a specialty which can best care for patients suffering from this complex disease. There are no recommendations for clinical tests to discriminate differential diagnoses. HHS did not charge the panel to recommend treatments. This leaves a void in care for patients. The IOM report did not provide for time to field-test the new criteria before adoption. Unpublished preliminary results from the ongoing CDC multi-site study was included yet other current research was prohibited. For example, even the Lipkin/Hornig study was not considered even though Drs. Klimas and Bateman were authors of that study as well as IOM panel members. Research criteria were not part of the scope for the IOM or P2P studies. This might inappropriately result in the use of the IOM criteria for research as well, even though that was not the intent of the IOM panel members when creating the IOM diagnostic criteria. This was a US government sponsored study. Historically, it is an independent expert medical group who sets criteria for disease, not the government. There is no data about insurance coverage. It remains unknown whether insurance will cover any visits with specialists for this disease. There is no provision for insurance coverage for specialty tests such as viral titers and NK cell function. The current coverage for Social Security disability (SSDI) is based on the Fukuda criteria. The medical evidence currently required for SSDI does not match with the IOM criteria. The IOM report does not provide recommendation for newly diagnosed patients with SEID and/or currently enrolled patients receiving SSDI as to qualifications for disability coverage. The IOM report recommends clinicians to treat the disease symptomatically, yet, there is no recommendation for the most obvious treatment: rest! There is no recommendation for a warning against CBT/GET. There was no mention or special section regarding the severely affected patients. Conclusion For the reasons outlined above, MEadvocacy.org came to the conclusion that we cannot recommend the IOM criteria or the SEID name. After much consideration, we decided that the plan for MEadvocacy.org going forward is to stay the course with the original goals, retaining the name Myalgic Encephalomyelitis (M.E.) as per 2015 ICD-10CM diagnostic code 93.3, and continuing to support ME criteria such as CCC or ICC which have been authored by a majority of our M.E. experts, clinicians and researchers. Additionally, MEadvocacy.org will continue with its commitment to advocate for awareness of the severe ME patients, as well as for the promotion of research into these patients. We will focus on campaigning for funding for research commensurate with other severe chronic illnesses like M.S. and Parkinson’s. Community Since the unveiling of the IOM report, the community has had highly diverse opinions of the result. Some were vocal with their approval and welcomed the changes that were recommended. Some agreed with most of the report but felt that it would need some changes before it was something that they could endorse. Some rejected this as a flawed government-controlled redefinition and rebranding effort. This split in the community has caused a lot of contention and confusion. Some initial supporters of MEadvocacy.org expected MEadvocacy.org to change its position due to their own perception of a better-than-expected report. Others have expressed their support with MEadvocacy.org's position and want them to continue with their stated view. All factions are looking at this with their own thoughts and expectations, each believing that their view is more sensible and will better serve the community. We regret if there was a misunderstanding of what MEadvocacy.org represents. Our hope in writing this article is to clarify our stand, one which has not wavered since the start. We are confident that many in the community share our thoughts and goals.
Due to the publicity from the IOM Criteria release, chronic fatigue syndrome and systemic exertion intolerance disease are in the news. No matter what your opinion of the new name and criteria are, this is a great opportunity to make the public more aware of the crisis of severe ME patients and the great need for more research, as well as draw people to our website where they can become even more educated. We have recently recruited quite a few volunteers to speak to the media in as many cities as possible to get these topics more exposure. This is the first interview from WLWT News in Cincinnati, OH. http://www.wlwt.com/news/low-awareness-often-makes-chronic-fatigue-syndrome-diagnosis-difficult/31715400
We are looking for people to tell their personal stories about this disease, for television in as many cities in the US as possible. You must be based in the US for this project.Both patients and/or caregivers who can speak on your behalf are acceptable. If necessary, we can arrange for the interview to be in your home, so you don't have to leave your home. If you are interested in doing this, please sign up by using the blue Volunteer button in the right hand column. Select Spokesperson2. Fill out the form with your name, email and address (if you're already a member, the form won't ask for this) We will refer you to our PR firm who will make arrangements from there. The deadline for signup is Wednesday March 11, 2015, midnight EDT.
"HHS, NIH, fasten your seat belts and return your tray table to the upright position because it's going to be a bumpy ride:)" Susan Maier (NIH) I'm sure Ms. Maier didn't realize just how prophetic her statement would become. ME patients are disgusted and disgruntled with the mistreatment perpetrated on this extraordinarily sick population by the NIH and CDC. We're mad as hell, and we're not going to take it anymore! With FOIA access gained to internal documents from the IOM and P2P projects, the upcoming final P2P workshop, as well as upcoming IOM and CDC Multisite results, the time is now perfect for an all-out publicity campaign. Let's Blow The Lid Off This Thing! As great as our grassroots efforts have been, it's clear we need to apply even more pressure to achieve our goals. First, we must challenge the three redefinition projects, the IOM, the P2P and the CDC Multisite Study where they are weak or harmful to ME patients. Secondly, we must demand that Myalgic Encephalomyelitis (ME) be officially recognized as its own disease. ME has a 60 year history and has been classified as a neurological disease in the World Health Organization's International Classification of Diseases since 1969. ME already has an ICD-10-CM medical billing code (G93.3) ready and waiting, we need to use it. Thirdly, we must demand that a single clear definition for diagnosis and research, which includes the hallmark symptom of post exertional relapse, be adopted as the official definition for M.E. Examples are the Canadian Consensus Criteria (CCC), the International Consensus Criteria (ICC) or an even better definition with the CCC and/or ICC as starting points. ME experts must be used in decision-making as the current “CFS” literature provides a misleading picture of the disease. Fourthly, as government funding for ME research has been trivial up to this point, we must demand that the government make available appropriate amounts of funds to study this devastating disease, similar to the amounts being spent on diseases such as Multiple Sclerosis, Autism, Lupus, Crohn’s Disease, Inflammatory Bowel Disease, Parkinson’s Disease and Alzheimer’s Disease. We're talking about turning up the heat 1000 degrees and blowing the lid off this thing. We’re talking about an all-out campaign which will make both the US public and our policy makers in Washington sit up and take notice. We're talking about demonstrations and having our spokespeople in the national media. How can we possibly pull off such a thing? Because all of us are incapacitated to some degree, this type of national campaign has never been done before. The obvious answer, therefore, is to hire an innovative public relations firm to handle most of the work for us! As a community, we have raised $20,000 for the documentary, "The Forgotten Plague", and a whopping $213,000 for, "Canary In A Coalmine". So we know that for the right project, big money can be raised. We are asking for $26,400 which will finance a 6 month public relations campaign. The amount is not small, but we feel it's quite doable. Are you fired up? Are you ready to get this done once and for all?! We think you are! Are you fired up? Ready to get this done once and for all?! We think you are! The Proposal Here is the proposal from our intended PR firm, Crowds On Demand: With a strong Public Relations campaign, the fight to get ME recognized is an issue that we believe will resonate well with the American public. Complete lack of visibility is the major problem the movement is experiencing. Most Americans do not know about these changing definitions because the issue has not been covered by major media outlets or championed by any high profile policy maker. To be blunt, most Americans don’t know the reality of ME! Hiring the innovative PR firm, Crowds on Demand, provides the opportunity to bring concerns about the NIH/CDC redefinitions to the public and get the issue the attention it deserves. The firm is known for an "outside the box" approach that has successfully assisted people and organizations in getting on the map. Unlike many firms, we do more than contact media outlets, we coordinate campaigns from the ground up involving lobbying, demonstrations and media relations. Crowds on Demand will contact media, arrange for interviews on high profile shows (particularly morning shows), organize demonstrations and recruit policy makers to join the fight. Moreover, we will assist in the fundraising process by helping to make strategic partnerships with influential organizations and donors. We have agreed to work for a heavily discounted rate of $4400 per month including all of these services because we believe in the cause (normally we would charge approximately $10,000 per month for such a campaign). Furthermore, we promise results within 6 months and promise a 50 percent refund if the organization is not satisfied. A PR campaign with Crowds on Demand will get the cause on the radar and help the organization raise substantial funds from a donor network. We have excelled in the past working to bring attention to non-profits. For example, Crowds on Demand has worked with a relatively unknown charity in Los Angeles that worked on homeless mental health issues. It was originally unable to fundraise much or get attention. Through its campaign with us, they substantially increased fundraising and got attention in the media. We want to bring our success to fighting the HHS’s ludicrous redefinition campaigns and getting ME recognized. Adam R. Swart Email: firstname.lastname@example.org Cell: 650-353-0083 New - Click to Read The Full Proposal For More Detailed Information New - Click to Read Frequently Asked Questions
You asked for publicity for the organization and our cause - here it is. http://www.washingtonpost.com/news/to-your-health/wp/2015/02/25/new-chronic-fatigue-syndrome-report-doesnt-help-us/
It may seem like things have been a bit quiet on our end since the Institute of Medicine (IOM) Diagnostic Criteria for ME/CFS committee’s release meeting, but I would like to assure all of you that we’ve been working as hard as we can on your behalf. Because of your generosity and support, we are still here and focused on bringing our demands to fruition. We have grown quite a lot over the past few months. I have organized what was previously an informal group of advocates, into a formalized MEAdvocacy.org Advisory Group. There are over a dozen volunteer patient members of this group including myself, Joni Comstock, Anne Keith, Kathryn Stephens, Gabby Klein, Robin Funk, Tom Jarrett, Colleen Steckel, Lisa Petrison, Tracey Ann-Tempel Smith, Polly Gilreath, and Mindy Kitei. We plan on adding more. After much consideration of the IOM report, and listening to the ME community, we have decided that our plan going forward is to stay the course with our original goals and focus on getting myalgic encephalomyelitis (ME) officially recognized as its own distinct disease (separate from chronic fatigue syndrome/systemic exertion intolerance disease (CFS/SEID)), with a true ME definition, (the International Consensus Criteria or better), under the ICD-10-CM code G93.3. Note that we are no longer asking for the Canadian Consensus Criteria - we believe we should be advocating for the most current and best definition that is available. We are also advocating for the use of the International Consensus Primer - already in use by doctors across the country as a working set of clinical guidelines to diagnose and treat ME patients. Over time, it has become clearer that there are major flaws with the IOM report, such as not including pain in the criteria, and not excluding other diseases, which creates a disastrously loose definition, just like the 1994 Fukuda-CFS criteria. In addition, while the compulsory symptom of post exertional malaise (PEM) is a plus, we don’t have confidence that general practitioners unfamiliar with the disease will be able to diagnose post exertional malaise (PEM) correctly. They may instead confuse PEM with fatigue, resulting in the over-diagnosis of SEID. Although the criteria are technically for diagnosis only, it is also possible that SEID could be used for research. This would replicate the same problems as the loosely defined Fukuda criteria, which resulted in hundreds of skewed studies which may have turned out positively if the study cohort included the correct patients. Many patients also have concerns over the name SEID, believing it implies to doctors and the public that we are lazy instead of extremely sick with a biomedical disease. This would create the same problems as the name chronic fatigue syndrome has for many years. We also observe that the report overlooks the needs of our most vulnerable population, severe ME patients, despite this letter from nine severe ME patients to the IOM committee on December 16, 2014. The needs of these patients are especially urgent. Furthermore, they are key to future research as they are most likely to show biomarkers and other consistent key features of this disease. Along with getting ME recognized, we will also be lobbying for the establishment of a federal research budget for ME as a distinct disease on par with similar diseases such as multiple sclerosis. Because the institutional bias against ME has been a huge roadblock for decades, we will also lobby for Congressional oversight of the Department of Health and Human Services (DHHS) as we work to get ME established. We have been working hard to get public awareness for the plight of ME patients (especially severe ME), and also to get MEadvocacy.org widely mentioned. This is starting to pay off. We have interest from several health reporters – including the Washington Post, NBC Philadelphia, and NBC Cincinnati. Our goal is to get stories done in as many cities as possible. Also, we have a Day of Action proposed for mid-March in Washington DC, with a demonstration and lobbying of Congress. Assuming we have the funding in place, the PR firm will be organizing and assisting with both of these. The “Tell HHS What You Think - SEID Survey” and the demonstration are both newsworthy items for interested reporters, and will hopefully generate even more publicity for MEadvocacy.org and our cause. We will have a list of demands, which will be shared with both the media and Congress. We believe with the national media attention of the IOM and the upcoming P2P release, the “Tell HHS What You Think - SEID Survey,” and the March Day of Action, that we have the best chance in many years to get some widespread attention for ME patients. A final goal from these actions is to get enough publicity to drive the public to our website, where we will further educate them on our cause and suggest that they donate. This will hopefully start to take the financial pressure off ME patients. Until then, we still need your help to get us over the hump. Now is the time to stand up for ME! We are currently fundraising for March. Our goal is an additional $4100 for a total of $15,000 on the leaderboard by February 27. Please donate! Click here to donate. https://meadvocacy.nationbuilder.com/donatepr
Tell HHS What You Think of the IOM Committee’s Proposed Name for the Disease Currently Called “ME/CFS”
Reposted with permission and collaboration from http://paradigmchange.me/wp/name-evaluation/ LINK TO THE SURVEY This page provides information about a short survey designed to evaluate a proposed new name for the disease that the U.S. government is currently calling ME/CFS. On February 10, a report on this disease from a committee of the Institute of Medicine (IOM) was released. One of the recommendations was that the term SEID (systemic exertion intolerance disease) be used as the new name for the disease. The IOM recommendations will not automatically be adopted. It is up to the government to decide what happens. For instance, Department of Health and Human Services (HHS) spokesperson Dr. Nancy Lee commented on the report, “We are committed to working with our Federal partners, stakeholders, and experts in the field, as well as with the HHS Chronic Fatigue Syndrome Advisory Committee, to review the report’s recommendations and appropriate next steps.” The sole goal of this survey project is to collect input on what patients, advocates, professionals and others think of the proposed name. Deciding on a different name is not a goal of this particular survey. If appropriate, that will be done in a follow-up survey. The findings of this survey will be sent to individuals at HHS (including Secretary Sylvia Mathews Burwell) for their review. In addition, the survey findings will be sent to the members of CFSAC (Chronic Fatigue Syndrome Advisory Committee to HHS), so that the committee will be more able to make an appropriate recommendation to HHS about what to do about the name. Hopefully the results will provide HHS with valuable information that will make it more likely that an appropriate decision about the name is made. The findings also will be shared with other government officials (such as those from the NIH and CDC) and with the media (via ME Advocacy’s PR firm, Crowds on Demand). In order for this survey to be effective at influencing policy, a high level of participation is very important. Please share the survey as widely as possible and ask others to fill it out! A preview of the survey questions is on this website page. Following is some more information on the survey: * The deadline for survey responses is March 1. * The survey is estimated by Survey Gizmo to take four minutes to fill out. * Anyone can participate in the survey. This includes people with ME and/or CFS; people with other chronic neuroimmune illnesses; researchers; clinicians; advocates; and the general public. * Views of these different groups will be analyzed in a way that they can be presented as separate from one another in the final report. * The survey is presented jointly by ME Advocacy and Paradigm Change. * If anyone has trouble filling out the survey in the format provided, we will be happy to send you the text via email so that you can type in your answers and send them back to us via email. Your identity will remain confidential and the email will be destroyed after the data is recorded. Please send requests to: info AT paradigmchange DOT me * A huge amount of thanks goes out to the many people who made the survey better by taking a preliminary version! * Those who took a preliminary version of the survey also will need to take the final one to have their answers count. So that they do not need to be rewritten, essay answers received during the development phase are on this page. * One of the questions on the survey asks about preferred names. Some of the names recently proposed by patients or advocates are listed in this blog post. * No matter what your feelings about the proposed name, your participation is very important in this effort! We are very grateful to everyone who participates in this survey project. Thanks much for helping out by answering the survey and by encouraging others (including healthy family or friends) to participate. Sincerely, Mary Ann KindelME Advocacy Lisa Petrison, Ph.D.Paradigm Change LINK TO THE SURVEY