HHHHHH HHHHHH HHHHHH H H HHHHHH H H HHHHHH H H H HH H H H H H H HHHHH HHHHHH HHHH H H H HHHH H H H HHHHHH H H H H HHH H H H H H HHHHHH H HHHHHH H HH HHHHHH HHHHH HHHHHH Chronic Fatigue Syndrome Electronic Newsletter -------------------------------------------------------------------- No. 29 January 1, 1994 Washington DC -------------------------------------------------------------------- INDEX FOR LATTER HALF OF 1993 / CFIDS AMERICA INTERVIEW CONTENTS >>>1. Index for latter half of 1993 >>>2. Interview with Kim Kenney of CFIDS America >>>3. Incentives for Ampligen Research >>>4. CFS-FILE base of information on Internet >>>5. Where to find the latest edition, & back issues, of CFS-NEWS >>>6. Network Resources NOTICE: The copyright notice for CFS-NEWS has been changed. Previously, excerpts were required to give credit to "CFS-NEWS" as the source. Now credit is to be given to the "CFS-NEWS Electronic Newsletter". See the full copyright notice at the end of this edition. ------------------------------------------------------------------- >>>1. Index of CFS-NEWS articles for latter half of 1993 The previous "Index and Review" edition of CFS-NEWS was issue #22, dated July 11, 1993. #23 August 31, 1993 >1. CDC to review CFS case definition >2. I.F.M.E.A. Medical Update >3. Conference on Oct. 2, Los Angeles: CFS, Silicone Implants and MCS -- Treatment Options >4. "Crimson Crescents" reported as symptom >5. Scientific American magazine focuses on the immune system >6. Networking News A. CFS Newswire service B. CFS/ME Computer Networking Project C. Catharsis CFS Magazine now on Internet >7. September is UK Awareness Month for M.E. >8. US Senate to consider research funds #24 September 30, 1993 >1. HEM suspends Ampligen trials >2. CDC meeting on CFS definition >3. Medical publications update >4. Research edition of CFIDS Chronicle >5. Future medical conferences >6. New Canadian patient organization >7. Well Spouse Foundation: help for partners of chronically ill >8. Networking news A. Fibromyalgia discussion created B. EI/MCS discussion created C. Project ENABLE BBS changes access telephone D. CFS-NEWS back issues available via Internet ftp. >9. Speaking events #25 October 31, 1993 >1. I.F.M.E.A. Medical Update >2. Review of Australian research >3. Ampligen research >4. May 12 organization begins early preparations #26 November 16, 1993 >1. Medical Publications Update >2. USA Interagency meeting on CFS / NIH Workshop >3. International Conference on Chronic Fatigue May 18-20 1994 >4. Flu shot advice from Cheney Clinic >5. Canada disability benefit information #27 December 8, 1993 >1. Report on Washington Week -- Introduction >2. The U.S. Interagency Coordinating Committee for CFS (ICC-CFS) >3. NIH Workshop on Clinical Management >4. Case definition meeting #28 December 9, 1993 >1. Summary of May 1993 Los Angeles Conference #29 January 1, 1994 >1. Index for latter half of 1993 >2. Interview with Kim Kenney of CFIDS America >3. Incentives for Ampligen Research >4. CFS-FILE base of information on Internet >5. Where to find the latest edition, & back issues, of CFS-NEWS >6. Network Resources -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=- >>>2. Interview with Kim Kenney of CFIDS America [Ms. K. Kimberly Kenney is the Executive Director of the CFIDS Association of America, Inc., the leading advocate group for CFS patients in the USA and the publisher of the CFIDS Chronicle. The abbreviation "CFIDS" stands for chronic fatigue and immune dysfunction syndrome, and that term will be used interchangeably with CFS throughout the text that follows. The interview took place on December 31, 1993 and the transcript below has been edited. The interview was conducted by CFS-NEWS editor Roger Burns.] REVIEW OF PROGRESS IN GOVERNMENT POLICY CFS-NEWS: You've read my report in CFS-NEWS #27 where I describe a breakthrough in attitudes in how CFIDS/CFS advocates and government authorities work together in dealing with CFIDS issues. It's been 6 weeks since those meetings in Washington -- do you now continue to see a more positive working relationship? KENNEY: Yes we do, and I think there are five major things that have occurred since those meetings that give me cause for optimism for our relations for the future. The first would be that NIAID -- the National Institutes for Allergies and Infectious Diseases [a division of the U.S. National Institutes of Health, a.k.a. NIH] -- has invited us to comment on their CFS booklet for physicians, which was last updated in May 1992. Their invitation was, in their words, prompted by a "recent federally sponsored meeting". But I assume they were also reacting to the flood of letters that went to Dr. William Reeves of the CDC [the U.S. Centers for Disease Control and Prevention] in response to *their* booklet. The tone of the NIAID booklet was much more respectful of the disease than was that of the CDC booklet. We provided comments to NIAID as requested, as did a number of other groups. The second item is that we've received a review copy of the draft case definition manuscript from Dr. Reeves of the CDC. We have specifically been asked to not circulate it, but the fact that they let us see it is a good sign. I don't think we would have been involved in this process had we not done the work we did leading up to, and during, the meetings in Washington. Third would be the revision of the CDC booklet. It reflects changes that have been recommended by the leadership and membership of our Association. That was a good sign. I think that we'll talk about the specifics of that a little bit later? CFS-NEWS: Yes. KENNEY: Fourth, we're anticipating news of a date and an agenda for a February meeting of a CFS-ICC meeting [i.e., the U.S. Interagency Coordinating Committee for CFS] that will be chaired by Dr. Philip Lee, the U.S. Assistant Secretary for Health]. And last is the new high-level interest in Gulf War syndrome and related illnesses by President Clinton and members of the Dept. of Defense and the Dept. of Veterans Affairs, which may bring increased attention to chronic fatigue syndrome and other syndromes like it. We feel that's very positive. CLINICAL DEFINITION CFS-NEWS: There's been talk of a separate process for developing a clinical definition for CFS. Is there any specific work that is being undertaken along that line? KENNEY: I believe that Doctors Jonathan Rest and Charles Lapp had expressed probably the most interest in organizing something, a new group like the one the CDC has organized, to create a clinical definition. Since the research case definition is expected to be published in a major journal in the first half of the year, I think that Rest and Lapp have opted to wait to see what the final case definition will look like, and use it as a jumping off point for a clinical definition. I think they will make as great an effort as possible to use the two in tandem. If these definitions are being developed by clinicians who are doing research and by researchers who are seeing patients, it will be in everyone's best interest. RESEARCH CASE DEFINITION CFS-NEWS: That's good to hear. Now, regarding the current work on revising the CFS research case definition, I had previously reported in CFS-NEWS on Dr. Fukuda's proposal, at the Nov. 19 meeting, that CFS be included within a larger framework of chronic fatigue illnesses. Are you aware of any emerging consensus by group members on the revised criteria that would define "core" CFS? KENNEY: Yes. As I had said, we've received a copy of the first draft of the case definition manuscript from Dr. Reeves, and the new criteria are much less restrictive than the 1988 criteria. The new work is taking a look at all unexplained chronic fatigue and it stratifies between what they're calling chronic fatigue syndrome and idiopathic chronic fatigue -- that is, chronic fatigue without a known cause. It assumes that CFS is a more specific type of syndrome. In the interest of helping the definition group to insure its ability to publish their manuscript in the most prestigious journal possible, I really must decline to answer any more specific questions about the new case definition. I will say, however, that we are greatly encouraged by its potential to increase the medical community's understanding of this illness. In addition to the case definition itself, the text around it in the opening and closing remarks is really very good, it's very strong language. It treats this as a real disease. CFS-NEWS: That's excellent! Something that I'd like you to help clarify for me -- I had an impression that at the Nov. 19 case definition meeting they were mainly talking about the other illnesses that CFS symptoms might relate to, and I do not recall a discussion of the specifics of how they would, for research purposes, define that core, classic CFS itself. Am I mistaken? KENNEY: They didn't really do it there. But they *have* done it in the manuscript. CFS-NEWS: I see. So this appears to have been progress that was made, after the last meeting, by phone and fax, and you are getting the benefit of seeing this draft ... KENNEY: ... developed through Dr. Keiji Fukuda's [CDC] ability to synthesize what happened at the Nov. 19 meeting. There was a lot of data shared at that meeting, but they had not agreed on what was going to be "CFS". But they have done that in the manuscript. It's really very good. Now, this manuscript is currently circulating among all members of the working group, so the revision may look very different. I'm hoping it doesn't. WHAT'S IN A NAME? CFS-NEWS: On to our next topic. The name "chronic fatigue syndrome" has prompted much controversy, and U.S. government officials have recommended against any change of name for now. Among those who are discussing a change of name, what progress do you see towards a consensus being formed on what the new name should be? KENNEY: Little. This continues to be, probably, the hottest issue for CFIDS advocates. Most diseases get a name by one of four typical means. They are named for either: the place where they first occurred -- and I don't think Incline Village would take well to having this disease named after it; or, for a person who discovered it, and since we don't know truly whether this is a new or an old disease, that's kind of hard to do; or for a pathological marker, or the pathogenesis, of the disease. So there's no clear winner that we have in any of those categories, at the moment. In the new case definition, they say that while they don't change the name, they do commit strongly to changing it as soon as there is a marker, or once the pathogenesis is better understood. There is that commitment. I had conducted a small campaign after the Nov. 19 meeting to see if we could call the *larger* group of illnesses "chronic fatigue syndromes", and call the pure CFS something else. But nobody could agree on what the 'something else' should be. For "myalgic encephalomyelitis", no one is sure that there is the encephalomyelitis. Encephalopathy is probably generally agreed on, although there aren't very many studies done. So it's just very difficult. Many people think M.E. would be a good name, but we don't know that we've got the scientific basis to back that up yet. "CFIDS" is, to us, just an interim move. Although it is our recommendation, many people are unhappy with anything that has the 'F' word in it. We're still pursuing the use of an eponym, which would be something like "Darwin Syndrome" or "Nightingale Syndrome" or something like that -- the use of a term that could be used coincidentally with the scientific name. If the scientific name should change, then the eponym could be carried over. CFS-NEWS: Did you pick "Darwin" at random, or is there someone named Darwin who has been associated with this illness? KENNEY: There's some thought that Charles Darwin suffered from this illness. [Note: The association of CFS with Florence Nightingale has often been discussed elsewhere, so CFS-NEWS did not ask about that in this interview. -- Editor] CDC BOOKLET CFS-NEWS: Well, on to my next prepared question. The CDC has circulated a draft booklet for CFS, which has prompted much criticism, and a revised version has been circulated on a limited basis. You may have answered this sufficiently already, but I'll just follow through: how much progress to you see in the government's response to the criticism that the booklet has received? This question is sort of a scale-of-one-to-ten question. KENNEY: With the first booklet rating a definite zero, let's say that the new booklet comes in at about a four. Some of the most grossly damaging statements have been omitted, probably due to the tremendous flood of letters generated by Association members. And the number of such letters was considerable. Also, the *tone* of the booklet has changed. One of the things we criticized most heavily in the first draft was evidence of absence versus absence of evidence -- pitfalls that they fall into over and over again. And this was also true of the NIAID booklet. They had made statements about research that hasn't yet been conducted as though it *had* been conducted. For instance, saying that this disease doesn't occur in people of color and in other minorities, even though that hasn't been proven. They said it's not a progressive illness, even though no longitudinal studies have been done. We know anecdotally that patients *do* get worse with the illness. So they have taken out these statements such as 'this is not a progressive illness' and have replaced it with statements like 'although it is progressive in some cases, it does appear that most people get better or remain the same'. They have made a considerable shift in the tone. CFS-NEWS: Did you also say that they had made a change with regard to the racial and/or socio-economic characterizations? KENNEY: Yes, that's another area that they have cleaned up considerably. Another thing that most upset people was this "three to ten thousand" prevalence statistic that they'd put in the booklet. That's gone now. They've retained the X-per-hundred-thousand rate of incidence, but they don't cite any head count, which is very good since we don't know what the figure is. CFS-NEWS: You've mentioned areas on which there's been good progress. Can you comment on continued problems that you see in the booklet? KENNEY: To be honest, I haven't had the time yet to go through our nine-page list of comments and compare it with what's been done. We received the revised draft on Christmas Eve. ROLE OF CFIDS AMERICA CFS-NEWS: Fine. On to my next question. What role did CFIDS America play in the events leading up to and including the three Washington- area meetings that occurred in mid-November? KENNEY: Probably the biggest activity leading up to the meetings was getting [U.S. Assistant Secretary for Health] Dr. Lee to commit to be present and to chair the ICC meeting, as is spelled out in the Congressional language. There was an attempt on his part, or someone else's part who works with his schedule, to make the CDC's Dr. Brian Mahy the chair of the meeting. And that simply was not going to be permitted as far as we were concerned, because the Congressional language spelled out clearly that the meetings are to be chaired by the Assistant Secretary for Health. We engaged some Congressional interest to make sure that the letter of the Congressional language was followed specifically, and that was *extremely* helpful. We also wanted to make sure that the meeting was open to advocates, and that advocates were given a *role* at the meeting. And we worked hard to get advocates formally appointed as part of the committee by the time of the meeting, but that simply wasn't possible given the many bureaucratic requirements you have to meet to get citizens appointed to government committees. There simply wasn't time to do that from the time the bill was passed until the time of the meeting, so we continue to pursue that. CFS-NEWS: And your goal, as previously stated, was to eventually get a committee status that would include both the patient advocates *and* representatives from the private research community? KENNEY: Right. CFS-NEWS: Can you discuss discuss the NIH Workshop? KENNEY: For the NIH Workshop, we had been working with NIH's Doctors Ann Schluederberg and John LaMontagne to make sure that the treatment conference, or workshop, was *not* a repeat of the 1991 workshop on research outcomes. There was *no* patient participation in the 1991 meeting whatsoever. For 1993 we were successful in having the patient panel added, and then expanded beyond including just Dr. Stephen Straus's patients, as was shown on the printed agenda. We were successful in getting Wilhemina Jenkins added, which I think everyone agrees was a welcome addition. Second was to get something about the role of support groups added to the program as a part of adjunct treatment, and I was selected to give that presentation. Just getting those two *minor* additions to the program took a *considerable* amount of work. We also got Doctors Nancy Klimas and Dan Peterson added to the agenda. Also, the '93 workshop had many more question-and-answer sessions than did the '91 workshop, and I think that that clearly helped a *lot*. We worked closely with the NIH staff to help insure that arrangement was put in place. Regarding the case definition meeting, we worked with Dr. Reeves to make sure that meeting would be open to observers. Although observers were not allowed to participate in the discussion, I think it was helpful that we were there. And at the end they did ask Marya Grambs and I to comment. And that meeting was the first in which clinicians Jonathan Rest and Dan Peterson were invited to participate in the meeting, and that was directly through our influence. PRIVATE MEDICAL RESEARCH Genetic typing / contagious illness? CFS-NEWS: Another important area of involvement by the Association is direct funding of private medical research. Can you describe the current work you are funding that's being done by Dr. Nancy Klimas at the University of Miami? KENNEY: As we described in the Summer '93 Chronicle, they're doing research that's really hot in almost all areas of medical research -- genetic typing. This follows from the breakthroughs in Alzheimer's and cystic fibrosis, which have led to a deep interest among researchers who have worked in this area to look at other illnesses and see if there are genetic types that are common to people who show symptoms of CFS. That's what Dr. Nancy Klimas and her group is attempting to do. They've had some preliminary reports that seem to indicate that there is a genetic predisposition, and they're working to further uncover just what that genetic predisposition might be, and whether its something people can be tested for ahead of time. CFS-NEWS: And to what degree is it your personal impression -- and I can ask this of you because you're not a doctor who has to hold things close to the vest until they're published -- to what degree is it your personal impression that this research might show that only people with a certain genetic type can get chronic fatigue syndrome -- or is it merely a case that there's an increased likelihood, and that there's no hard line, based upon genetics, as to whether people can get this illness or not? KENNEY: Good question. No, I don't know. I can see it both ways. We're getting anecdotal reports more and more frequently of spouses who are developing the illness a number of years after their spouse got it first. Whether or not you're going to get the illness if you're in close contact with it for so many years, or if you have an HLA type, I don't know. Certainly not every spouse is coming down with it. So what does this mean? And certainly not every child in every family where there's a person with the illness. So it seems like maybe there's some people who just don't get it. If you look at a clinic such as the Cheney Clinic, and there is a doctor and several nurses and several people involved in research who are exposed to the disease, day in and day out, people who are very sick, it would seem to reason after a certain number of years if they were going to get it, they're going to get it. But none of them have. Markers and Treatments CFS-NEWS: Can you characterize the current research being done by the Cheney Clinic, which you also fund? KENNEY: What they're looking at is metabolic deficiencies that they've found that are evidenced by a number of physiological functions such as exercise, looking at the mitochondria and how they function. They're trying to work now to quantify and develop tests and treatments for the deficiencies. I think their exercise research is probably the most notable, of late. Some of their research is also being repeated in the cooperative research centers that are funded by NIAID. ACCURATE STATISTICS CFS-NEWS: The CDC has several on-going prevalence studies. However, the CFIDS Association is funding it's own study, undertaken by Dr. Leonard Jason of DePaul University. Can you characterize the weak points of the CDC's work, and the reasons that the Association has been prompted to fund its own study? What advantage does Dr. Jason's study have over other work that has been done? KENNEY: The CDC's studies -- and I'm referring primarily to the four-city prevalence study that's been ongoing since 1990, I think -- this is a physicians' referral study. Physicians had to agree to participate, then agree to forward suspect cases of CFS from among their regular patients to the CDC's contractor. But this won't reflect the real situation. People with this illness tend to drop out of the medical infrastructure because they go to so many doctors, and after so long they just really come to think that "there's no doctor who can help me; I'm being told that I'm depressed, that I'm crazy", and they don't go to doctors. Those patients who *did* participate in the CDC study have, over time, stopped filling out the ongoing questionnaire. The physicians that are involved are growing less and less interested and are not referring all the cases they could. Some of them aren't referring *any*. Those physicians who *do* see many CFS patients are overwhelmed, and so they don't have time to participate in a study like this. So it is not suprising that the figures being reported by this CDC study are small, *and* are getting smaller over time, and that's certainly not the case anecdotally and from reports from clinicians who see this illness regularly. The design of the CDC's study has numerous faults, and most of them are acknowledged by CDC. And this was intended to be a *pilot* study. Why it has been going on for three, now coming up on four, years, we can't understand. It became clear to us that if the CDC is going to generate low numbers [such as "3,000 to 10,000" for the USA total, as shown in the CDC draft booklet -- Editor's note] and use them in published government reports, something else needed to be done to address the situation. So we commissioned Dr. Leonard Jason, M.D. of DePaul University in Chicago to do a community-based prevalence study for CFS. Dr. Jason's group is surveying part of the Chicago community via a telephone questionnaire to see how many may have the symptoms of CFIDS. Suspected cases are referred to a physician for a full work-up and diagnosis. And Dr. Jason is using the CDC criteria, *and* the British criteria, *and* the Australian criteria to see if there's any difference in the numbers he finds. We believe it's going to be a much stronger study. Now, it's just a study of a limited part of the Chicago area, but it's the basis for a much grander-scale study, which would have to be funded by the government simply because of the costs involved. And when Dr. Jason began the study, he had an estimate in mind of what the incidence might be -- a higher figure than what the CDC numbers were. Dr. Jason, incidentally, had completed and published a study of CFS prevalence among professional nurses. So what he has found in the community-based study is considerably higher than even his own expectations. And so this study is taking longer -- to get all these people referred into the physicians for the work-up -- than it would have taken than if the numbers were lower. RETRO-VIRUS RESEARCH CFS-NEWS: Many people are saying that the chapter on retro-viral research has been closed. However, the Association is still funding some research in that vein by Doctors Elaine DeFreitas and Sidney Grossberg, in separate studies. What is the story on the Association continuing to fund this kind of work? KENNEY: I think, and I think that the leadership of the Association would agree with me, that the chapter on retroviral research is anything but closed. And we're not alone in this. NIAID continues to fund Dr. Sydney Grossberg's retroviral research, so *they* are not convinced that it's closed. And CDC in it's newest draft of the booklet admits that studies are on-going. It's a very promising area of research, and the reasons that we *got* into it are the reasons that we're staying with it. This was described in detail in the Summer 1993 CFIDS Chronicle. This disease looks *very* much like a disease caused by a retrovirus, based on what we know about retroviruses. Retrovirology is a very new area of science, and that's why it's taking longer for any breakthroughs to come. The scientists involved are making sure to be *extremely* careful. Experiments are very well controlled so that we won't have the criticism from the outside that has come in the past. And just this week we received a new application for further study of retroviruses involved with CFIDS from a very well respected retrovirologist who has done landmark work in AIDS / HIV disease. So I think from the outside there is still a *great* deal of interest in this. And also, given the fact of ICL, that is, "HIV negative AIDS"-- this helps to show that there a lot more retroviruses out there than we know about. Retroviruses are still being investigated as a possible cause of lupus, and multiple sclerosis and Sjogrens disease. This area of research just takes a lot of time. THE ASSOCIATION CFS-NEWS: Your Association is getting a tremendous amount of work done, as you've described, and you have published four CFIDS Chronicles within the past four months. Where does your funding come from to enable you to get all this done? KENNEY: Almost all the funds we've raised come from persons with CFIDS, and those who care about them. In '93 we received our first grants from foundations with no prior interest in CFIDS, and this was not arranged through personal connections or anything. As the disease becomes more widely accepted and better understood, we expect that funding from other sources, such as public corporations and larger foundations, will increase. But right now we rely largely on people with the illness, which is kind of the worst of both worlds: the patients are having to fund all of this, and we are having to continually ask people who have limited incomes -- if *any* income -- to help us keep everything going. At this very moment as we close out the year we are involved in our 1993 matching grant fundraiser campaign. This is our primary source of funds both for work that we've done in '93 and work that we'll begin '94 with. Our goal this year is very ambitious -- a half million dollars, the largest fundraiser ever for CFIDS advocacy, research and educational programs. What we've got is a matching grants fundraiser, and we've secured matching grants of $250,000 from private individuals, to be matched by $250,000 that's raised from the membership and people that our members raise money from, for a total of half a million dollars. CFS-NEWS: How much money is currently available in that fund? KENNEY: Right now we're about $50,000 short of our goal, so there is $50,000 that still can be matched. And our matching fund deadline has been extended to January 15, since with the holidays and all, extending the time might be of help to some people who might not otherwise be able to contribute. May I give the address for donations? CFS-NEWS: Sure. KENNEY: We are the CFIDS Association of America, Inc. at P.O. Box 220398, Charlotte, NC 28222-0398. A contribution of $25 will get an annual subscription to our CFIDS Chronicle. We are a non-profit 501(c)3 organization, and so donations are tax deductible. THE NEW YEAR CFS-NEWS: Any closing comments? KENNEY: As something to look forward to in the new year, I think that '94 will prove to be a landmark year for the CFIDS movement. With the momentum we've generated, and our relations with government officials working on CFIDS, and promising research that is expanding to a number of new university- and private-based research centers, there's a great potential for the ten-year anniversary of the Incline Village and Lyndonville outbreaks to bring something that provides real hope for people with the illness. And that's really what we're all about -- making those things happen. CFS-NEWS: Ms. Kenney, thank you very much for your time, and good luck will all of your endeavors. -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=- >>>3. Incentives for Ampligen Research HEM Pharmaceuticals announced on Dec. 17 that its product Ampligen has received orphan drug designation by the U.S. Food and Drug Adminstration (FDA) for treatment for CFS, and for invasive malignant melanoma. Ampligen had previously received the same designation for renal cell carcinoma and AIDS. "Orphan drug designation" means that tax credits and an extension of time for patent rights will be granted to a company who is actively seeking FDA approval of a drug that would treat a condition that affects fewer than 200,000 people. The designation is intended to give financial incentives for the development of drugs whose target patient population is relatively small and so might not otherwise be developed given the high costs of drug development. [Information provided by HEM Pharmaceuticals and the U.S. FDA's Center for Drug Evaluation and Research. Ampligen is a registered mark of HEM Pharmaceuticals. Thanks to Prof. Jesse Lemisch and New York Native investigative reporter Neenyah Ostrom for alerting CFS-NEWS to this story.] -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=- >>>4. CFS-FILE base of information on Internet A new source of CFS information files is now available on Internet. The CFS-FILE base of files is managed by Ms. Molly Holzschlag, who also manages the MEDBASE BBS in Tucson, Arizona, and who developed the CFS files and messaging area on the GEnie computer service (see details below). CFS-FILE and the MEDBASE BBS are noted for being the original source for the electronic versions of the CFIDS Chronicle, the Health Watch Newsletter, and other CFS-related periodicals. CFS-FILE is also being developed into a broad based source of general information files regarding CFS and disability issues. To get a list of available files on CFS-FILE, send the command GET CFS-FILE FILELIST as an Internet e-mail message to the address LISTSERV@SJUVM.STJOHNS.EDU . To get any specific file listed in the FILELIST, send the GET command followed by the file's two-part name (as indicated in the FILELIST) to the Listserv address mentioned above. People who "subscribe" to CFS-FILE will be sent update notices regarding new uploads. To subscribe, send the command SUB CFS-FILE YourFirstName YourLastName to the Listserv address above. The MEDBASE BBS mentioned above is available at telephone 1-602- 790-7420. Related files on the GEnie computer service are located on its disABILITIES Round Table, page 970, library 11. Details about how to access GEnie, and other CFS-related computer services, is available by sending the command GET CFS-NET TXT to the Listserv address mentioned above, or by contacting the postal address mentioned in article number 6 below. [Information provided by Molly Holzschlag.] -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=- >>>5. Where to find the latest edition, & back issues, of CFS-NEWS CFS-NEWS gets copied by various people to many BBSs and other computer systems; however, to obtain CFS-NEWS in the speediest fashion you may note that the editor personally transmits the newsletter by 4 means: 1) Internet e-mail, by subscription. If you have Internet access, send the command SUB CFS-NEWS YourFirstName YourLastName as an e-mail message to the Internet address LISTSERV@LIST.NIH.GOV or to LISTSERV@NIHLIST.BITNET . 2) it is posted as a message to the CFS "echo" (i.e., electronic discussion group) available on Fidonet BBSs. 3) it is uploaded to the Project ENABLE BBS in Cross Lanes, West Virginia USA at tel. 1-304-759-0727 in file area 22. (Back issues in that same file area.) 4) it is posted to USENET newsgroup bit.listserv.cfs.newsletter. Newsgroups are available on many BBSs and mainframe computers. For back issues, note the following: - on Internet, create the command GET CFS-NEWS ### (where ### represents a particular issue number, e.g., for issue #29, ### would be 029) and send it as e-mail to LISTSERV%ALBNYDH2.BITNET@ALBANY.EDU - on the Project ENABLE BBS in Dunbar, West Virginia USA at tel. 1-304-759-0727 in file area 22; - on the CFS echo or USENET newsgroup, check previous messages. - back issues can be found on Compuserve in the GOODHEALTH forum, section 17. Also on GEnie on page 970, Category 18, file area 11. And on the MEDBASE / Tucson CFS BBS at tel. 1-602-790-7420. -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=- >>>6. Network Resources The CFS/ME Computer Networking Project provides information about CFS resources to the public. Such resources include: various electronic discussion groups (especially helpful to patients who are homebound); helpful information on electronic files; the CFS newswire service for exchanging news articles about CFS; and the monthly Catharsis magazine of personal health, intellect and creativity for the CFS community. To obtain the Project's guide to electronic resources, send a stamped, self-addressed envelope (or outside the USA include an International Reply Coupon) to: The CFS/ME Computer Networking Project P.O. Box 2397 Washington, DC 20013 The text of the guide is also available on Internet by sending the command GET CFS-NET TXT to the address LISTSERV@SJUVM.STJOHNS.EDU . A more comprehensive file of CFS resources is the CFS-RES.TXT file, which describes network resources and lists national support groups and books, etc. On Internet, send GET CFS-RES TXT to the address LISTSERV@SJUVM.STJOHNS.EDU . Via BBS, download the file as filename CFS-RES.TXT from the Project ENABLE BBS at tel. 1-304-759-0727 in file area 22. =================================================================== CFS-NEWS (ISSN 1066-8152) is an international newsletter published and edited by Roger Burns in Washington D.C. It is distributed: through the "CFS echo" (discussion group) on the Fidonet volunteer network of BBSs; via the NIHLIST Listserv on Internet; and as USENET Newsgroup bit.listserv.cfs.newsletter. Back issues are on file on the Project ENABLE BBS in West Virginia USA at telephone 1-304-759- 0727 in file area 22, and the valuable patient resource file named CFS-RES.TXT is available there too. Suggestions and contributions of news may be sent to Roger Burns at Internet CFS-NEWS@LIST.NIH.GOV or by Fido NetMail to 1:109/432, or at telephone 1-202-966-8738, or postal address 2800 Quebec St NW, no. 1242, Washington DC 20008 USA, or post a message to the CFS echo or to the Internet CFS-L group or to newsgroup alt.med.cfs. Copyright (c) 1993 by Roger Burns. Per- mission is granted to excerpt this document if the source (CFS-NEWS Electronic Newsletter) is cited. Permission is also granted to reproduce the entirety of this document unaltered. This notice does not diminish the rights of others whose copyrighted material as so noted may be quoted herein. Note that Fido and Fidonet are registered marks of Tom Jennings and Fido Software. =================================================================== INTERNET users are encouraged to obtain the CFS-RES TXT resource file and other CFS files at the NYSDH file server. Send the command GET CFS-RES TXT (or for a full list of files, send GET CFS-D FILELIST) by Internet e-mail to the address LISTSERV%ALBNYDH2.BITNET@ALBANY.EDU . Distribution of CFS-NEWS on the Internet is sponsored by the NIH Computing Utility. However, the content of this independent newsletter and the accuracy of the sources which it cites are solely the responsibility of Roger Burns. To subscribe, send the command SUB CFS-NEWS to the address LISTSERV@NIHLIST.BITNET or LISTSERV@LIST.NIH.GOV . To get back issues, send GET CFS-NEWS INDEX to either the Listserv at list.nih.gov or at the Albany address cited above, and follow the instructions in the file. Anonymous ftp available from list.nih.gov (128.231.64.10), directory cfs-news. ===================================================================== ******************************************************************************