"Jill McLaughlin CFSAC meeting and the name change 9. januar 2004 Since there still seems to be considerable concern and confusion about the rejection of the name change, we will give our report and response. Regardless of what decision was made, the topic was not handled well. The Name Change Workgroup (NCW), which was initially formed in response to patient pressure for a name change, was a federally appointed subcommittee composed of physicians, researchers and public members who worked nearly three years with a vast amount of information and input from multiple sources. The NCW, which includes some fairly prominent and well-respected members and leaders in the field, should have been treated more fairly and more reasonable and broader consideration should have been given to their efforts, given the amount of time and work that they all invested and the thoroughly researched document that they generated. From their extensive reviews and analyses, the NCW agreed that there was a need for a change and concluded that the name should not be limited to a single symptom, as had been done with the name "chronic fatigue syndrome" and that respondents overall were willing to endorse the strategy of having an umbrella term with the recognition of specific subtypes, including Myalgic Encephalomyelitis (M.E.) and using the original description - and separate from the heterogeneous hodgepodge of unexplained fatiguing conditions known as CFS. A letter from the NCW was sent on November 13 to Dr. David Bell, Chair of the CFSAC, asking for support and clarification of their status (see "Letter from the Name Change Workgroup to the members of the CFSAC" http://listserv.nodak.edu/scripts/wa.exe?A2=ind0312c&L=co-cure&F=&S=&P=62). This letter was recently made public and posted on Co-cure (but was not mentioned or shared publicly at the meeting). Members of the NCW were never informed of any response to this letter, nor were they given any warning of what was to occur at the meeting, nor were they ever thanked for three years of work on this. Neither the NCW nor the patient community was ever notified that a decision would be made or put to a vote at this meeting. The Chair posted publicly prior to the meeting (see statement below) that a discussion would ensue. However, there was never any discussion as promised. [This is acknowledged as an important issue, then how or why would the committee just swiftly and abruptly vote to stop it with relatively little deliberation or consideration?] Rather, a statement from the committee, signed by David Bell, was read http://listserv.nodak.edu/scripts/wa.exe?A2=ind0312b&L=co-cure&F=&S=&P=1305 , concluding that a name change was not warranted. A vote was quickly taken. The vote was approved. (Dr. Lapp abstained due to his membership on the NCW and said patients could just use the name CFIDS and that patients can change the name themselves as names can change with usage.) No discussion or comments were allowed. Everyone was stunned. Kim Kenny, President of the CFIDS Association of America (CAA), was not at this meeting. Jonathan Sterling was the invited participant representing the CAA but was not at the first meeting and did not comment on this at any time. No one from the NCW was there, (except for Dr. Lapp who is a member of the CFSAC and abstained as previously mentioned). Carol Lavrich, Chair of the NCW, gave an excellent presentation at the first meeting, then the committee subsequently agreed to address it, and interim discussions with committee members confirmed this also - which most took to mean there would be some dialogue, strategy and process formulated to give it a fair and balanced ongoing consideration from all sides, factions and stakeholders. At the first CFSAC meeting in September, Dr. Bell asked Kim Kenney to be involved and help the committee to develop a "summary similar to what the name change workgroup was working on" so that the committee could "provide a concise summary of thoughts that develop over the next few months." "Ms. Kenney responded affirmatively." (quotations taken from September 29 2003 CFSAC meeting minutes) It is unclear how this was done or why some was not done publicly in an open forum. However, this is how it was "addressed" and it appears that the decision was made well before the meeting and a vote was quickly taken as a formality, for the record. It was simply that a name change was not considered a priority despite the overwhelming majority of patients and even medical professionals wanting this as evidenced by years of multiple surveys, questionnaires and petitions. The committee rather decided that there were other more important issues that they would not detract from by a name change. Or maybe at some future date it could be re-considered -- when other things were taken care of -- and if there was more evidence..... (We would not disagree that there are other "important matters," which addressing the name change would not necessarily preclude, and quite honestly the committee seems committed and eager to establish subcommittees and meet more frequently (4 times a year), which could accommodate additional ongoing activities (i.e., could be in conjunction with not an either-or). The key is that now they can move on to important things. Which seems obvious that this will involve to a great extent the CDC and physician education, with millions of dollars going to the CFIDS Association of America (CAA), and ostensibly branding CFS, which Dr. Reeves mentioned. That branding article in the Chronicle last summer was indeed prescient, (see http://listserv.nodak.edu/scripts/wa.exe?A2=ind0309d&L=co-cure&F=&S=&P=4668 . Seems the wheels are (or perhaps were then already) in motion. For the record, the National CFIDS Foundation does not support this statement by the committee because this issue is and always has been "too important," to not only our members but the entire patient community. The name does influence and impact many areas. And more money will be wasted studying and trying to figure out and analyze and characterize one symptom. [Most (or perhaps all) patients or public attendees who spoke at this meeting did express concern over this decision and still requested and mentioned the importance of a name change, ask for consideration of the NCW's proposal or the need to recognize ME.] And putting all our eggs in the physician education basket? To most, no matter what you say, it is still just "chronic fatigue." And on what - to convince them it exists and make them "believe?" Is this science and medicine or theology? (Or maybe through the CAA's slick advertising and marketing gimmicks?) Will that get patients the decent treatment and care and help that they need? Or that it is "serious and debilitating" - so is mental illness. And there is a saying that probably has a lot of truth to it: Doctors and scientists do not change their minds - they just eventually die. However, the committee members are also looking more broadly at education and into general information and awareness. (We do not need a name change -it's just a waste of time - just to educate people.) But what is the message - and how - and - will it really just end up as basically "branding" CFS??? The statement by the CFSAC ended up basically looking more like a summary of Dr. Reeve's rather long (unscheduled, yet unchallenged) presentation from the previous meeting on why we really do not need a name change and why we should not change it at this time, rather than a legitimate response to the proposal. It didn't even address the actual proposal and inappropriately and inaccurately represented it as merely a "name change" to NDS. (The recommendations by the NCW, although it has been misrepresented and erroneously referred to as only a name change to NDS by some of the committee members and also by CAA, that is not what the NCW's recommendations called for. The proposal did include the recognition of ME as a separate entity as originally described by Ramsay, which is what the petition calls for, and also included the Canadian criteria, a comprehensive research inclusive definition by a consensus panel of International experts.) The conclusions did not follow the arguments given and the recommendations seemed counter to the arguments made. This seems to fly in the face of good science or even logic. (see Rebuttal statement at http://listserv.nodak.edu/scripts/wa.exe?A2=ind0312b&L=co-cure&F=&S=&P=3697 ) Researchers may be somewhat more removed, but how can clinicians who treat patients and took the Hippocratic oath to "First do no harm" - when Dr. Jason's attribution study has PROVEN that the name HAS done harm - and admit hating the name and that fatigue is not accurate and often not even the most prominent or debilitating symptom - still conclude that nothing should be done about it - and try to justify it by the same specious, untenable and invalid excuses that we've been rehashing for YEARS. Or to say, in effect, to sick patients who have articulately and reasonably requested and campaigned and fought and petitioned for a name change and have recommendations from a federally appointed committee of experts that is should be changed - that we do not want to, but if you want it changed, go change it yourself. Overall our interactions with Dr. Fields and his staff and the committee members have been positive and we were quite surprised by this. However, we cannot make excuses for the manner in which this was handled. We have agreed to participate and welcome the opportunity to do so and many patients appreciate that the committee has recognized and wanted input from patient representatives. We have agreed to collaborate and cooperate with the committee to the fullest extent - but not to smile and nod and rubber stamp whatever is thrown at us. We do not necessarily back down when issues need to be made, and did get in one objection after the vote was taken, but the manner in which this was presented and handled, even as a participant/representative of an organization, there was little that I could do. However, we can and will be honest. Patients deserve that much at least. We also welcome any further comments or feedback. They can be submitted via the NCF web site or to mailto:cfidsfoundation@aol.com . Jill McLaughlin Executive Director National CFIDS Foundation, Inc. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ *For those who have asked, we still do not have direct contact information for the committee or individual members. Meanwhile would direct you to the following: Dr. Larry Fields (Executive Secretary of the CFSAC): Phone 202-401-7605 Fax 202-690-7425 Internet e-mail LEFields@OSOPHS.DHHS.GOV Dr. Debra Nichols Phone 202-401-0735 Fax 202-205-9478 Internet e-mail DNichols@OSOPHS.DHHS.GOV U.S. Department of Health & Human Services ¬ 200 Independence Avenue, S.W. ¬ Washington, D.C. 20201 ___ Dr. David Bell, Chair of the CFSAC Phone 585-765-2060 Internet e-mail: dbell005@rochester.rr.com P.O. Box 495 Lyndonville NY 14098 ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Dr. Bell's statement on Co-cure November 6, 2003: I read Ray Colliton's note statement and wanted to clarify a few things. The final recommendations from the NCW were new to almost all of us, so at the meeting I suggested that we table the discussion until we had had a chance to study it in some detail. We plan on revisiting the topic at the December meeting and will discuss it. I have great respect for all the members on the NCW and I know they worked extremely hard on this project for several years. I personally wish their task had been completed during their watch but it was not and their CFSCC has been disolved. The current or new committee will present our views on the subject at the next meeting. I just wanted to let you know that I had not wanted to duck this issue, because, as Ray says, it is too important. On a personal note, I think it is public knowledge that I have always hated the name chronic fatigue syndrome although I have not been vocal in the debate before now. Best wishes, David Bell ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ We have given a discussion of the CFIDS Association America's rather murky role in all this: http://listserv.nodak.edu/scripts/wa.exe?A2=ind0401a&L=co-cure&F=&S=&P=2226 Up until the meeting they had no position on anything or could not give it publicly, even when asked, but after the meeting (and the name change was voted down), they had a board meeting and released a statement http://listserv.nodak.edu/scripts/wa.exe?A2=ind0312b&L=co-cure&F=&S=&P=5490 that they supported a name change and the "efforts" of the NCW (or at least said they did in spite of the conspicuous lack of discernable attempts or actions which would indicate this). They also posted publicly that "The Association's Board approved a statement reflecting the recommendations made by the CFSAC regarding changing the name "chronic fatigue syndrome" to another term." (*the CFSAC statement recommended NOT changing the name). So -- the CAA states directly that they support the committee's statement - WHICH WAS NOT TO CHANGE THE NAME. Yet they also stated that they support the efforts of the NCW - WHICH RECOMMENDED THAT THERE SHOULD BE A CHANGE. So during the deliberations they apparently felt it best to support nothing (or at least not reveal) their position on anything and after it was voted down it appears that they support everything. How convenient. Or they supported the NCW's efforts - at least until the committee voted it down??? Or perhaps it is just to maximize doublespeak and spin and word everything just vaguely and ambiguously enough so that people may be able to hear whatever they want to hear. We have been criticized for not working with the CAA. We would be willing to, but for this situation, I do not see that there is much to work with. The CAA may be reached at: Kim Kenney: kim-kenney@cfids.org The CFIDS Association of America PO Box 220398 Charlotte, NC 28222-0398 704-365-2343 http://www.cfids.org/contact/contact-us.asp