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
The Institute of Medicine Diagnostic Criteria for ME/CFS was released on February 10, 2015. ME patients have been busy studying the report and its ramifications. If you missed the webcast, it's available here: http://www.iom.edu/Reports/2015/ME-CFS.aspx A link to the report: Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness The report is also available on our Resources page. http://www.meadvocacy.org/resources While some aspects of the report are positive, the recommendation to change the disease name from chronic fatigue syndrome to systemic exertion intolerance disease (SEID) is particularly bad. Public response to the media blitz surrounding the IOM report has revealed that this is an even worse name than chronic fatigue sydrome. Where CFS suggests merely being tired, SEID suggests being lazy. Of course, ME patients are neither of those, nor are they "afraid of exercise". They are in actuality suffering from an extremely serious and debilitating neurological disease most similar to multiple sclerosis. An inappropriate name has had much to do with disbelief from the public and doctors, and the inability to get traction with increased federal research funding, and thus the research necessary to discover the etiology and treatments for this disease - a vicious cycle. We are working with our PR firm, Crowds On Demand, to address the issue with the name SEID. We are also working on developing a list of demands going forward. The PR firm will also help us with the implementation of these demands. The next challenge will be the release of the final P2P report, due out in mid February (right around the corner, folks!) # # # The National PR Campaign for ME is in progress. We are fundraising as we go along, so if you want this campaign to continue past February, we need your donations now! Our goal is an additional $5000 for a total of $15,000 on the leaderboard by February 21, 2015. Click here to for more info and to donate: https://meadvocacy.nationbuilder.com/donatepr
Guest Blog Post by Jerrold Spinhirne, S.E. - The views expressed may or may not represent the views of MEadvocacy.org as a whole.The US Department of Health and Human Services (HHS) has paid the non-profit Institute of Medicine (IOM) $1,000,000 for the naming rights to the established neurological disease myalgic encephalomyelitis (ICD G93.3 ME). This is not science, but the exercise of raw political and economic power. The ridiculous name the IOM committee came up with after "much thought" has no legitimacy whatsoever and should be scrapped before more precious time and resources are wasted.The disease was named myalgic encephalomyelitis originally in a 1956 Lancet editorial later attributed to Dr. E. Donald Acheson. Drs. A. Melvin Ramsay and John Richardson also used the name ME at this time. The name ME was based on careful clinical examination of thousands of patients from over a dozen outbreaks of the epidemic form of the disease beginning with an outbreak in Los Angeles in 1934.The 1956 Lancet editorial, "A New Clinical Entity," said this about the name of the disease: From the purely practical standpoint it would be useful to have a name for this syndrome. As the most helpful single feature in the recognition of this syndrome in the past has been the predominately normal cerebrospinal fluid, the names which have already been suggested, "Iceland disease" and "Akureyri disease," are not really appropriate. The objections to any but a purely descriptive name for a disorder without a known cause or established pathology are obvious. For this reason, the term "benign myalgic encephalomyelitis" may be acceptable. It in no way prejudices the argument for or against a single or related group of causal agents; and it does describe some of the striking features of a syndromecharacterized by (1) symptoms and signs of damage to the brain and spinal chord, in a greater or lesser degree; (2) protracted muscle pain with paresis [partial paralysis, muscle weakness] and cramp; (3) emotional disturbances in convalescence; (4) normal C.S.F.; (5) involvement, in some variants, of the reticuloendothelial system [part of the immune response system]; (6) a protracted course with relapses in severe cases; and (7) a relatively benign outcome. [Death did not occur immediately after onset.] It remains to identify this syndrome more precisely; but we believe its characteristics are now sufficiently clear to differentiate it from poliomyelitis, epidemic myalgia, glandular fever, the forms of epidemic encephalitis already described, and, need it be said, hysteria. This is the history of ME that HHS is seeking to erase by hiring the IOM. Making ME disappear serves several purposes for HHS:1. It covers up a series of errors, and misconduct, at the NIH and CDC in dealing with the disease beginning in 1985. HHS wants to preserve the perceived authority and credibility of these agencies, even if it means contributing to increased levels of disability and premature death in the population.2. It protects the economic health of the private insurance industry, which HHS evidently values more highly than the public health.3. It saves HHS the cost of appropriately funding research on a major neurological disease. Instead, HHS gets away with spending a pittance every year on a trivialized fatigue-based illness that has been greeted with skepticism by doctors and the public.Seeing that the deception created around CFS was breaking down after 30 years, HHS wants to begin the cycle afresh by creating a new, updated version of CFS, using the IOM, with yet another inappropriate, trivializing name. This new pseudo-diagnosis will then be used to bury ME even further. This must not be allowed to happen all over again.
On Tuesday February 10, at 11am EST, The Institute of Medicine will release its report on Diagnostic Criteria for ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome). For your convenience here is a time zone converter: http://www.timeanddate.com/worldclock/converter.html This is the culmination of a highly contested year and a half effort by the NIH to redefine chronic fatigue syndrome. Expectations are low that the recommendations from the Chronic Fatigue Syndrome Advisory Committee and the ME experts letter were followed. Rich Carson of Prohealth has tweeted that a top source told him there will be a new name for CFS, which is not ME. You may watch live via webcast here: https://www.iom.edu/Activities/Disease/DiagnosisMyalgicEncephalomyelitisChronicFatigueSyndrome/2015-FEB-10.aspx Tune in somewhat earlier than 11am to receive instructions on how to ask questions during the webcast. You may also start accessing the report at 11am. Meeting agenda: https://www.iom.edu/~/media/Files/Activity%20Files/Disease/MECFS/Public%20Briefing%20Agenda_Final%20version.pdf MEadvocacy.org will have a representative provided by our PR firm at the meeting, prepared with a list of questions to ask. For the record, we are not happy with the design of this meeting. It’s going to be difficult for cognitively disabled patients to watch the webcast, ask questions and read the report all at the same time. Reporters were given the opportunity to read the report a day beforehand, however the report is embargoed until the meeting.
This is the second in a series of articles explaining our goals. The second goal is get a true myalgic encephalomyelitis (ME) definition established. A great metaphor for chronic fatigue syndrome (CFS) is the chimera – a ferocious creature from Greek mythology. The chimera is made up of several creatures, the head of a lion, the body of a goat, and a snake for a tail. The Miriam-Webster dictionary puts it like this - “an imaginary monster compounded of incongruous parts.” What does this have to do with CFS? The 1994 Fukuda case definition for CFS is very loosely defined with an overly broad reach. Like the chimera, it describes many different and unrelated “animals” all mashed into one – not only myalgic encephalomyelitis (ME), but also major depression, iodiopathic chronic fatigue, and undiagnosed major illnesses, such as multiple sclerosis*. This is called a low specificity definition, i.e., attempting to define ME, but hitting far from the mark. This is one reason why researchers have a tough time coming to any conclusions regarding CFS, and why the patient population is often described as heterogenous (not all the same) – because they aren’t! As you can see from the infographic above, based on average of six studies comparing the Fukuda Criteria (the current CFS definition), to the Canadian Consensus Criteria (the most widely used ME definition), 65% of people diagnosed with CFS have ME, while 35% do not. That means all the studies to date using the Fukuda Criteria include a large percentage of people who do not have ME. This has been going on since 1994. In contrast, our proposed true ME definition (the Canadian Consensus Criteria, International Consensus Criteria, or better) is a tightly defined, or high specificity definition. It defines ME and nothing else. Referring back to the chimera metaphor, this would be like describing only one animal, such as a lion. Imagine how much improved and relevant research would be if you were only studying one disease. Makes sense, doesn’t it? ME patients deserve to have a high specificity definition, just like other diseases. That’s why our goal is to get ME officially recognized as its own distinct disease along with a true ME definition (the Canadian Consensus Criteria, the International Consensus Criteria, or better). *List of diseases that can be misdiagnosed as CFS (other than M.E.) - mind blowing! http://www.hfme.org/meandmisdiagnosis.htm # # # The National PR Campaign for ME is in progress. We are fundraising as we go along, so if you want this campaign to continue past February, we need your donations now! Our goal is an additional $5000 for a total of $15,000 on the leaderboard by February 21, 2015. Click here to for more info and to donate: https://meadvocacy.nationbuilder.com/donatepr - - - - - - - - - - - References: http://videocast.nih.gov/summary.asp?Live=14723&bhcp=1 Leonard Jason presentation, Dec. 9 2014 – starting at 1 hour 1 minuteLuis Nacul presentation, Dec. 9, 2014 – starting at 2 hours 22 minutes - - - - - - - - - - -http://www.name-us.org/ResearchPages/ResearchArticlesAbstracts/JasonArticles/jason2004CFSCCCFull.pdf Jason LA, Torres-Harding SR, Jurgens A, Helgerson J. Comparing the Fukuda et al. criteria and the Canadian case definition for chronic fatigue syndrome. J Chronic Fatigue Syndr. 2004;12(1):37–52. 20 CCC / 32 Fukuda = 62% - - - - - - - - - - -http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3658447/ Contrasting case definitions for chronic fatigue syndrome, Myalgic Encephalomyelitis/chronic fatigue syndrome and myalgic encephalomyelitis.Jason LA, Brown A, Clyne E, Bartgis L, Evans M, Brown MEval Health Prof. 2012 Sep; 35(3):280-304. “…using the symptom frequency and severity cutoff points as specified by Jason et al. (2010), only 50% met the ME/CFS criteria.” - - - - - - - - - - -Contrasting Chronic Fatigue Syndrome versus Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.Jason LA, Brown A, Evans M, Sunnquist M, Newton JLFatigue. 2013 Jun 1; 1(3):168-183. “However, the current study suggests that about 75% of patients meet the ME/CFS criteria, as this percentage was replicated across three samples when the DSQ was used as the assessment instrument.” - - - - - - - - - - -Prevalence of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in three regions of England: a repeated cross-sectional study in primary care Luis C Nacul, Eliana M Lacerda, Derek Pheby, Peter Campion, Mariam Molokhia, Shagufta Fayyaz, Jose CDC Leite, Fiona Poland, Amanda Howe, Maria L DrachlerBMC Med. 2011; 9: 91. Published online 2011 July 28. doi: 10.1186/1741-7015-9-91 127 CCC / 270 Fukuda = 47% - - - - - - - - - - -Benefit from B-Lymphocyte Depletion Using the Anti-CD20 Antibody Rituximab in Chronic Fatigue Syndrome. A Double-Blind and Placebo-Controlled Study Øystein Fluge, Ove Bruland, Kristin Risa, Anette Storstein, Einar K. Kristoffersen, Dipak Sapkota, Halvor Næss, Olav Dahl, Harald Nyland, Olav MellaPLoS One. 2011; 6(10): e26358. Published online 2011 October 19. doi: 10.1371/journal.pone.0026358PMCID:PMC3198463 28 CCC / 30 Fukuda = 94% - - - - - - - - - - -A Disease Register for ME/CFS: Report of a Pilot Study Derek Pheby, Eliana Lacerda, Luis Nacul, Maria de Lourdes Drachler, Peter Campion, Amanda Howe, Fiona Poland, Monica Curran, Valerie Featherstone, Shagufta Fayyaz, Dikaios Sakellariou, José Carlos de Carvalho LeiteBMC Res Notes. 2011; 4: 139. Published online 2011 May 9. doi: 10.1186/1756-0500-4-139PMCID:PMC3118997ArticlePubReaderPDF–293KCitation 97 CCC / 155 Fukuda = 62% - - - - - - - - - - -http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3728084/ Fatigue. 2013 Jun 1;1(3):168-183.Contrasting Chronic Fatigue Syndrome versus Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.Jason LA1, Brown A, Evans M, Sunnquist M, Newton JL. “These consistent findings across the three data sets suggest that about three fourths of those within disparate samples meet the case definition for ME/CFS, whereas the Fukuda et al. criteria identify a larger group of patients.” In a different sample in the Jason et al.  study (the 2004 one), only 50% met the ME/CFS criteria when the symptom frequency and severity cutoffs specified by Jason et al.  were employed. However, the current study suggests that about 75% of patients meet the ME/CFS criteria, as this percentage was replicated across three samples when the DSQ was used as the assessment instrument.
The KnoW M.E. Challenge, created by ME patient, Tom Jarrett and his family, is now running on Facebook. The challenge is to make a video of yourself (or a friend) saying "Myalgic Encephalomyelitis" three times in a row without practicing. If you make a mistake merely trying to say the name of the disease (highly probable, as the name is a mouthful!), then it is suggested to donate to M.E. advocacy and research. The purpose is to have a little fun while creating name recognition and awareness for the disease, and to also raise money for advocacy and research. Donations can be made to MEadvocacy.org for the National PR Campaign for ME and to the Open Medicine Foundation for the End ME/CFS Project. The Challenge has been running less than a week and already has close to 300 likes. To participate in the KnoW M.E. Challenge, go to the Facebook page: https://www.facebook.com/pages/KnoW-ME-Challenge/816247738446565
Many thanks to everyone’s donations so far - we were able to apply the $1000 matching grant and to meet our goal of an additional $5000 for February. Here are photos of the two picketers who were present at the opening day of the new Congress. They were picketing outside the Capitol Building in DC targeting members of Congress. We have radio ads running on several FM/AM stations across the country primarily in smaller markets. I'm working on getting a copy of the ad, so you can hear it. Mentions appeared on these internet radio stations: http://player.radioloyalty.com/station/19698.html http://www.spreaker.com/user/dtongsports/ncaa-football-championship-indie-music?autoplay=1 There have been a few blog articles and tweets outside of the ME community, such as: http://www.sprinklegoodness.com/apps/blog/categories/show/1860973-product-and-website-reviews http://www.charitacy.com/help-m-e-advocacy-project-may12-org/ https://twitter.com/FashionistaInc_/status/553591753911988224 We have several interviews lined up for radio programs and health related podcasts. The recent Google Hangouts interview on the Deapshow with Anne Keith (our first interview) had technical difficulties and so is being rescheduled. We’ll let you know when that will happen. We are also working on a response to the recent spate of “fear of exercise” articles coming out of the UK. The PR firm is helping to compose that. Looking ahead to February, things will ramp up to a larger audience. The radio ads will continue to run. At the upcoming IOM rollout meeting in Washington DC February 10th, we will have a representative. Either Charlotte Von Salis will be there, or the PR firm will provide a backup in case she is unable to attend. There will be outreach to policymakers, especially members of Congress who might have an interest in ME. Thanks to Wally for her work compiling a list of potentials. There will be an organized social media campaign targeting major publications and the NIH/CDC. Interviews with two major media outlets are in the works and should appear in February. # # # We are fundraising as we go along, so if you want this campaign to continue past February, we need your donations now! Our goal is an additional $5000 for a total of $15,000 on the leaderboard by February 21, 2015. Click here to for more info and to donate: https://meadvocacy.nationbuilder.com/donatepr
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 today January 22, at 4pm EST. Click on the link to access the show: https://plus.google.com/events/c1ncce8ntfgja2337llm8aveue4 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. We will post the link when it's ready.
The Pathways to Prevention Workshop for ME/CFS (P2P) and the Institute of Medicine Diagnostic Criteria for ME/CFS (IOM) - how did these two spurious federal redefinition projects get started? And why are myalgic encephalomyelitis (ME) patients protesting? In the US, the name "chronic fatigue syndrome" (CFS) replaced myalgic encephalomyelitis in 1988, and it is currently defined by the 1994 Fukuda criteria, a government created definition. A unique symptom that differentiates ME from other diseases is post exertional relapse with delayed recovery. As the Fukuda definition does not require post exertional relapse as a compulsory symptom, you can have depression, idiopathic chronic fatigue or an undiagnosed major illness such as multiple sclerosis, and still get diagnosed with CFS. In other words, CFS is a mixture of both ME and Not ME. Needless to say, this has been disastrous for ME research, as you can’t get a lock on true ME, with these other diseases in the mix. In November 2012, the CFSAC (Chronic Fatigue Syndrome Advisory Committee) sent a recommendation to then Secretary Kathleen Sebelius of the Department of Health and Human Services (HHS) to redefine CFS. The intention was to include the Canadian Consensus Criteria (CCC), a true ME definition, created by ME experts, which requires post exertional relapse as a compulsory symptom, and to exclude the Fukuda criteria and other older definitions as they’re inaccurate and outdated. Normally, HHS would ignore recommendations from CFSAC, just as it’s done for the past 10 years. (Which shouldn’t be happening anyway, but that’s a whole other can of worms.) But this time, they saw an opportunity to bury us further. As we now know, the CFSAC recommendations were modified before being passed on to HHS. http://www.occupycfs.com/2014/11/24/another-cfsac-violation/ This is a violation of federal law. The perpetrators changed several things, but left out two crucial things in particular – the requirement to use a true ME definition, the CCC, as a starting point, and the requirement to have only ME experts and patients on the redefinition panel. This left the door wide open to bring earlier overly broad CFS definitions into consideration, and to have government bureaucrats and others not expert in ME on the panel. Then HHS actually followed these illegal recommendations and started the P2P and IOM redefinition workshops in response. When CFSAC patient representative, Eileen Holderman, and others on the committee protested that the workshops were not using all ME experts as required, they received threatening phone calls from the Designated Federal Officer of the CFSAC, Nancy Lee. http://phoenixrising.me/archives/17475 When an ME advocate, Lisa Petrison, wrote a letter to Secretary Sebelius asking that Nancy Lee be replaced, she was told that Nancy Lee had done nothing wrong. http://paradigmchange.me/wp/response-from-hhs-were-doing-everything-right-so-you-have-no-reason-to-complain/ So now we know the draft results of the P2P - the Fukuda criteria is still in operation, and psychological “treatments” such as multimodal therapy are ridiculously and scarily recommended for a serious biomedical disease similar to multiple sclerosis. In other words, it’s business as usual. Based on what’s happened in the past, it’s very unlikely that public comments will have any substantial change on these results. The final report is due to be released circa January 30. We don’t know what the IOM definition results will be until February 10, but given the circumstances, it doesn’t look good. Fortunately, we don’t have to take this lying down! The National PR Campaign for ME has already begun. We are taking our protest directly to the American public and Congress. http://www.meadvocacy.org/update_national_pr_campaign_for_me_1_15_2014 Our goal is to get ME officially recognized as its own distinct disease (separate from CFS), along with a true ME definition, which includes the compulsory symptom, post exertional relapse with delayed recovery, and finally, federal research funding commensurate with similar diseases such as multiple sclerosis. We are fundraising as we go along, so if you want this campaign to continue past January, we need your donations now! Our goal is an additional $2400 for a total of $10,000 on the leaderboard. In addition, there is a $1000 matching grant going on now through January 21, 2015 midnight EST, so donate now and get your donation doubled! Click here to for more info and to donate: https://meadvocacy.nationbuilder.com/donatepr
Thanks to everybody who has already donated to the Campaign, we were able to hire the PR firm, Crowds on Demand. They started work January 1, 2015. As we’re just getting started, there are many exciting things in the works, but nothing concrete that I can link to just yet. There are several smaller media outlets lined up to interview our spokespeople. We have four spokespeople in total (Mindy Kitei, Charlotte Von Salis, Anne Keith and Tracey Temple Smith). A representative from the PR firm was present at the Congressional Inauguration on our behalf on January 6, 2015, looking for new Congresspersons who might become a champion for ME. We did one-person protests at the NIH and CDC in conjunction with that. We also have an upcoming 60-second radio ad, which will air on Midwestern health podcasts and on various FM/AM radio stations throughout the country. While we have the first month’s fees paid for, donations have dropped off due to the holidays, and we are behind for February. We need an additional $3000, for a total of $10,000, by January 21. In addition, there is a $1000 matching challenge grant running until January 21, midnight EST. Anything donated, up to a total of $1000, will be doubled. The IOM report will be coming out February 10. The P2P is also wrapping up and may be completed in late January or early February. Continued funding is crucial to combat these two redefinitions. Please donate! https://meadvocacy.nationbuilder.com/donatepr