Some Thoughts on the September 1997 CFS Teleconference
As someone who has been directly involved in the CFS Satellite Conference I'd like to send along these thoughts in response to discussions I've seen about it. I'm so tremendously overwhelmed by demands at this end that I have neither the strength or time to reply to lots of posts about it despite wishing I could address all the issues and concerns:
As far as I know, the final editing of the pre-taped segment of the conference was just completed the end of this week. I think we will see/hear some parts we will agree with and some parts that we will disagree with, but all in all it does give the impression that CFIDS is a very real and serious illness.
In dealing with a subject as diverse as CFIDS there were a lot of topics to cover in a very limited amount of time. Because of this they viewed this as being an initial conference with potentially more to follow.
The foremost goals of the conference right from the start were to: (1) bring the medical community up to speed about what has been discovered about CFIDS, thereby showing that it is a very real illness, (2) provide information to help physicians identify CFIDS, and (3) to stick to medical information and not allow political pressures from any direction to effect the program. To remain credible the conference had to be a strictly scientific program rather than one of political agendas. I believe this is why those involved have been so adamant about not releasing information beforehand. Doing so would have fueled the political flames of diverse views from many perspectives and in turn impeded both the progress and effectiveness of the conference.
I also think that there has been the feeling that too many cooks in the kitchen would have significantly impeded the progress. Even with the limited number of people involved it hasn't been easy -- this and the need to reduce the content to the necessary time constraints is why editing has gone to the final moment.
As a side note, I've been very concerned about the understandable uncertainty of the PWC community about the content and the escalating skepticism about it. Unfortunately, the PWC community has had nothing to go by other than speculation which sets the stage for skepticism, frustration, anger, and misinformation -- not to mention the loss of a potential very positive impact PWCs could have had in getting word out about the conference. While the decision not to share more information was not in my hands, and the fact that there may have been positive and negative reasons for both doing so and not doing so, I'm glad the decision wasn't in my hands.
When I agreed to take part in the conference planning I had to agree to keep all communications strictly confidential. While this has been a tough position to be in, had I not done so the impact would have done far more than merely damaged my own credibility. As a representative of the patient community I've felt we must show government officials that we can work with them on a professional level despite sometimes having opposing views and goals. The bottom line is that the patients, medical community and government agencies ARE in this for the long haul and that the quickest way for us to reach our goals is for us to be able to work together. Had I let information about the conference leak out prematurely I not only would not have been able to continue being involved in the program, thereby not being able to continue providing input, but also the officials might think twice before letting other patients have direct involvement in the future. The final content of the conference aside, I think this effort has been an example of how the patients community, medical community and government agencies can work together. I'd loved to have seen more patient involvement in all aspects of the conference including notifying medical organizations and institutions of its airing and hope in the future the patient community will be allowed to take more significant roles in CFIDS related efforts.IMPORTANT
From what I understand, the input from the PWC community has been a mixed bag of objective input, understandable skepticism, sincere desire to get more information, and in some cases frustration and anger. If this satellite conference is going to potentially be the first in a series of CFIDS satellite conferences I believe we have to be very careful in how we react to this one after it is aired. If we merely voice our frustration with points we disagree about and flame those involved in the effort we will never see another CFIDS satellite conference. On the other hand, if we show support for the effort that went into it, support the areas we agree with, and provide constructive input about areas of disagreement and future efforts, we may see future conferences about subjects that could not be covered in this one.
Because CFIDS still remains such an enigma with many of its mechanisms lying beyond current medical understanding, and because of the widely varying views among CFIDS researchers, we will see reflections of many of those views in the content.
Providing input on the content has been an ongoing process. Each time a section of the script was sent to me I had to go through it line by line making continuous rebuttals and recommendations. E-mails, faxes, Federal Express envelopes, and conference calls have been going back and forth for many months. I've been glad to see that input has made a difference on many points.
Art Lawrence has worked very hard on this program. His efforts on this effort and many others have served us well. In taking part in the conference I've been very impressed by other involved government officials who have also revealed tremendous support for CFIDS and the patient community. As the other two non-medical representatives on the committee, Orvalene Prewet and Kim Kenney have made significant contributions. In discussions I've had with The CFIDS Association in regard to the conference, I feel deeply appreciate of their very extensive efforts on our behalf and on behalf of CFIDS in general. No one has put more effort into it than Paul Levine. And above all, I feel immense appreciation for Phil Lee's initiating the conference. All the participants have put tremendous effort into the process of developing the conference. Despite the fact that some of us may have some conflicting beliefs/perspectives than some of those expressed in the conference, I think we must appreciate the efforts that went into the satellite conference.
So I ask all who see the conference try to judge it not on individual points brought up, but rather on the overall messages, and to then respond in a fashion that will move us in constructive directions. This isn't to say that we shouldn't voice our opinions about areas of disagreement as well -- we absolutely should. The patient community has been a major force in getting us to where we are today and must remain so. That force comes in many styles and has many diverse perspectives -- they are all needed. I just feel the more we can work together and/or in unison in constructive ways the more progress we will make.
There's no doubt that the satellite conference will be controversial with some aspects ruffling a few feathers on every side. But as those of us who come from scientific research backgrounds know so well (not to mention many others), all perspectives must be explored and presented. It's the basis of the science process. This isn't to say that there isn't a time and a place for debate and times when only hard core objective data should be presented.
Those who were involved from the start in developing the satellite conference spoke of avoiding political and speculative perspectives and instead sticking to objective scientific data. Those who view the conference will have to decide for themselves whether this was achieved.
When the distance between conflicting views or research is vast, providing equal time does sometimes get rather hard to swallow even for the most experienced researchers. This is a difficult practice to accept for many, particularly patients because our lives are the cards being dealt out on the table of scientific debate. After research and clinical care, translating the process, issues, and medicalese are probably 3 of the greatest services physicians can provide the patient community. Well, CFS advocacy has to go up near the top of the list also -- an activity that too few in the medical community have taken part in and an area the AACFS must take a greater role in.
What additionally clouds the waters is the medical politics that unfortunately does sometimes find its way into medical issues. The "old boys clubs," inner circles, and conservative personal views of some impeding potentially new or divergent theories doesn't serve any of us or the advancement of science well.
One of the topics of controversy in which all these issues have heated medical and lay person debate is the involvement and/or relationship of CFS and psychological factors. This topic is a bit like two tectonic plates colliding into each other creating considerable debate and friction where they meet. One plate might be thought of as the advancements in psychiatry with more and more of the mechanisms of neurophysiology coming to the surface. The other plate is CFS and particularly its neurophysiologic involvement. The overlap of the two is the fault line and CFS seems to have a foot placed on each side. As with an earthquake, only advancements of the plates will release the built up tension.
I must admit that from purely a lay person's perspective, that in the absence of more objective physiologic understanding of CFS, some in the medical community appear too quick to present speculative subjective psychiatric theories as fact apparently merely as a temporary means of filling a void in current understanding.
The bottom line is that each of us who suffer from CFS is a Lewis or Clark with our futures lying somewhere out there in the vast frontier of medical understanding. I just hope that whether viewed as being positive or negative, that the conference will spark more CFS research and more access to treatment for the many PWCs who are in such need.
September 8 and 9, 1997
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from The Chronicles of CFIDS: One Patient's Forum
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