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Commentaries on the
DHHS Chronic Fatigue Syndrome Coordinating Committee
State of the Science Conference



Posted to Co-Cure  Sun, 29 Oct 2000 17:30:39 +0100 by Frank Albrecht, Ph.D.

State of the Science (SOS) Conference

"SOS" is the international distress code and CFS research is certainly in distress, so these letters make sense for the occasion. And to some extent the call has been answered.

The CFS-SOS conference was organized in a distinctive way, one I'd never seen before but which worked effectively. Each segment started with a presentation by a researcher who had studied and published on CFS. Then there were presentations from other researchers in the same subject matter area (edocrinology, immunology, etc.) who had not studied and published on CFS. What these researchers had done, however, was read the CFS literature relevant to their specialty. So although they were newbies to CFS they were able to make reasonably informed comments.

For instance, on the topic of fatigue we first heard from Dedra Buckwald, MD, Director of the Seattle CFS Research Center. Dr. Buchwald is also the Past-President of the American Association for Chronic Fatigue Syndrome. She was followed by Lauren Krupp, MD, who talked about fatigue in multiple sclerosis and Seven Passik, Ph.D. , who talked about fatigue in cancer patients. When the topic was sleeping problems the first presenter was Harvey Moldofsky, MD, who has done extensive research on the "fragmented" and "non-restorative" sleep in CFS. He was followed by Roseanne Armitage, Ph.D., who has studied the effects of anti-depressants on sleep, and James Krueger, Ph.D., who told us more than I was able to absorb about hormonal problems related to sleep.

This pattern was followed throughout. Other topics considered were neuroendocrinology, cognition, chronic pain, immunology, orthostatic intolerance/neurally mediated hypotension, and functional status/disability. The overall effect was to produce many new perspectives for CFS experts to consider, and to recruit a variety of respected medical experts to an enlightened interest in CFS.

One goal of the conference was to increase well-informed interest in CFS among expert researchers. That goal certainly was accomplished.

Another goal was for CFS experts to gain a greater understanding of the pathophysiology of the illness. I can't speak for the experts. But as an unusually well-informed non-expert I unfortunately cannot say that I now understand CFS better than I did. But I can say that I now have an improved appreciation of why the subject is so difficult. CFS involves complex interactions of the endocrine, neurohormonal, immune, and central nervous systems. The basic science of these kinds of interactions is incomplete, murky, and rapidly changing. So the illnesses that arise from them (including Fibromyalgia, Irritable Bowel Syndrome, Multiple Chemical Sensitivity, and perhaps also Gulf War Syndrome, as well as CFS) are not going to be well understood until the basic science underlying them is more advanced.

This may sound discouraging but I do not see it that way. These are hot research areas that are being clarified pretty quickly. In addition, effective treatments do not have to wait upon full scientific enlightenment. Vaccination against smallpox, after all, was discovered 300 years before the viral understanding of the illness was developed. Current research is already suggesting new ways of looking at treatment and this tendency will certainly intensify.

I noticed, however, only one practical suggestion in the presentations. This was in regard for medications for sleep. Dr. Armitage suggested, based on her sleep studies, that low dose trazadone (Desyrel ) or nefazodone (Serzone) tend to produce better quality of sleep for women than SSRIs such as Prozac and Paxil. Between the two, nefazodone produced a more normal sleep pattern. Men, on the other hand, benefit from trazadone but are more likely to do well with SSRIs than women.

I didn't think the conference was perfect. There were presenters I would have preferred to some of those chosen. A few of the outside experts seemed not to have done their CFS assignments, and few if any seemed aware that there is a problem about the name. I very much disagreed with some things said by speakers or discussants. So I could advance many criticisms. Overall, though, this was a serious, informative, and useful event. It certainly will stimulate productive research, and also will increase the visibility and credibility of CFS within a variety of medical and research communities. For this, and for the smooth functioning of the conference, I extend my thanks and congratulations to the organizer, Donna Dean of the the National Institute of Health.

Copyright© 2000 by Frank Albrecht. This text may be downloaded for personal use. It may also be quoted and may be forwarded in entirety or in part to other persons, provided it is attributed to me. Other uses are free but require permission.

Frank Albrecht, Ph.D.
franka@bluecrab.org

For Parents of Sick and Worn-Out Children
http://home.bluecrab.org/~health/sickids.html

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Posted to Co-Cure Wed, 25 Oct 2000 15:42:38 EDT by Armin Friend

SOS Report

Mr. Hennessy of RESCIND, Inc. asked that his report on the CFSCC State of the Science meeting be forwarded to e-mail lists. Since Co-Cure's No Flames rule does not allow some of his more candid words, I hope he will forgive me for posting a slightly annotated version here. I did my best to preserve the facts and opinions as presented by him.

Best regards,

Armin Friend

_________________________________________________________

Mr. Hennessy writes that Ms. Janice Ramsden and Dr. Donna Dean were very professional, adding that he hopes this means an end to a pattern that had left him convinced the lack of progress displayed by prior CFSCC efforts had been orchestrated.

He continues: "Dr. Dean seems to be a new type of manager. She ran a very efficient conference. I would say that it was disheartening to hear that two of three experts on every panel started their presentations by saying, "I am new to this CFS condition, or entity..." they just couldn't use the term Disease..."

Mr. Hennessy observes that although presented as experts in the field of pain management, or depression, or sleep disorders, only one of the three was an ME/CFS expert, in contrast with the large number of doctors available who are very passionate about helping their patients get better. Nevertheless, he sees it as a start.

"I wasn't able to attend the morning sessions, but I hear that Dr. Bell was particularly feisty and several times corrected incorrect statements from the panelists. Dr. Komaroff was his usual smooth self." Mr Henessey remarks upon the fact that Dr. Komaroff focused on the written questions, and that the attendees could not ask simple open questions. Paraphrasing the words from an earlier letter written by several CFSCC members, he continues that this is not what he would expect from the government of "a democracy, when a population has been so deliberately lied to, cheated, abused, misused, stolen from, lied about and more," clearly wondering if this means they cannot handle the truth.

In a more hopeful vein, "But if Donna Dean is willing to prove to us, that there has been a sea change at NIH, We will support her 100%. But we will also warn her, that the margin for error is over."

Mr Hennessy's illustrated his opinion of the NIH and CDC predecessors of Mahy, Reeves, Strauss et al. by noting: "Many friends of mine died brutally cruel, painful and NEEDLESS deaths under their tutelage."

"But, in closing the conference today, Dr. Dean said something to the effect that "These complex, multisystemic conditions and diseases are difficult and they probably have not been studied as much because, other more simple diseases took precedent. But all the easy questions have now been answered. The hard questions are the ones that remain. And we must all work together to find these answers in the months and years ahead." (this is a paraphrase, i did not have a tape recorder)"

"The LAST question of the day was "should we eliminate the "F" word from this disease name. and what had been a cordial and genial question and answer period, suddenly became strained. Dr. Komaroff admitted that this was a very thorny area, and that almost everyone agreed that the name must be changed, but the big question was what to change it to. Dr. Nancy Klimas said, "We are going to have a report from the name change committee tomorrow, and we will tell you where we are right now with this." Professor Mary Schweitzer spoke up from the floor about what a travesty the name is, and all the abuse the patients take for it. The "new" doctors on the panel seemed befuddled. Dr. Komaroff did NOT say that he VOTED for that stupid name back in 1988 in the Annals of Internal medicine article, and that the first person anywhere to challenge them on it was me. I was the "patient representative" at the First National CFS conference in San Francisco, on April 15,1989. I said, "if you do nothing else today, change the God damn name. it is demeaning, degrading and shows NOTHING distinct about this illness. EVERY medical illness involves fatigue as a symptom. Websters dictionary says to define something is to make it clear and distinct, to differentiate. there is NOTHING distinct about having fatigue. 6 billion people get fatigued every single day. I told them that before getting sick, I had spent 17 years in sales and marketing, writing ads for a living. and that words have meaning. and most people when they hear the term "fatigue" in America , think LAZY or CRAZY or both.... But, i said, "Fatigue is just a word. you say that it is the only symptoms that 100% of all patients have. Then I say, why don't you change the name of your illustrious American Medical Association or AMA to the ABMA for the American Bowel Movement Association. I am willing to guarantee without a single flip chart, or double blind placebo controlled study, that 100% of you in this audience have had a bowel movement in your life. I am willing to bet that some of you have Chronic Bowel Movements."

"YOU may laugh, but to us, people who feel as if they have been hit by a truck or beaten to within an inch of their life, this is NO laughing matter!!!!" That was 11 years ago.....the asinine name and all the negative baggage that goes with it COULD have been nipped in the bud....."

"But today, when the conference was over, Dr, Komaroff came over and privately apologized to me. he said "you were right back then." and i said, "and a lot of good people have been caused grievous harm by that bad decision." He just shrugged and gave me a look like "we are doing the best we can."

As Mr. Hennessy puts it, if Dr. Komaroff would be able to "empathize with the daily torture so many of us suffer, he might feel a bit more urgency in getting the damn name changed." (The report also suggests a method to achieve the required empathy boost.)

"For those who want to wait for "the sole cause of ME/CFS" I say, don't hold your breath. In my presentation this morning, I am going to show 5 different examples of supposed "State of the Science" presentations from the past two days that many of us NON-scientists gave at these conferences more than 10 years ago.... and we have the papers and sometimes the videos to prove it."

Mr. Hennessy concludes by expressing the hope that Dr. Dean is serious about "restoring integrity and high quality work to an area that has been poorly served for far too long," which he feels also includes the removal of several people who have impressed him less than favorably, without going into specifics who these people are and why they should be removed.

[This is an annotated version of a report on the CFSCC State of the Science meeting written by:

Tom Hennessy, Jr.
for
RESCIND, Inc.
Repeal Existing Stereotypes about Chronic Immunological and Neurological Diseases.
www.geocities.com/capitolhill/4277/ ]

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Posted to Co-Cure Tue, 31 Oct 2000 18:48:40 +0000

SOS Meeting

The SOS was a huge step forward for the Scientists and Researchers because there were many "non-CFS/ME" doctors there. I get the feeling we as patients are going to have to wait for the perks from this. If this meeting had taken place 10-15 years ago, we would be in a better position.

The SOS meeting in February, which was downgraded to a "think-tank" meeting, was also a success once the three psychiatrists, who were viewed as the experts in ME/CFS, stopped talking and the other researchers spoke. Clearly in my opinion that flub in February allowed Dr. Dean insight in how to put this meeting together. It is clear she listened, saw the problems and ran with the information to put on a great meeting. So the February meeting was not a complete flop.

All of the non-ME/CFS doctors were working under the constraint that this was an SOS meeting on ME/CFS. In that sense it was frustrating as certain things, such as "fatigue is the UNIQUE hallmark of ME/CFS", were repeated. I wanted to stand up and say, 'no, this is not unique to us'. Mary Schweitzer had had it at the end and spoke up. I wish somehow we could have said to each panel that what they have read and heard about this disease is mostly incorrect information.

I suggested at the CFSCC meeting that in the next SOS meetings that more patients be utilized to document the reality of this disease. Bring in patients who have specific symptoms that relate to the topic that is being described in the research.

It was clear to those who put the conference on and the known ME/CFS doctors that there is a large body of information already out there which can be applied to the ME/CFS patient population. I believe Dr. Dean made this statement in the SOS and in CFSCC several times. Some other doctors, in lunch, dinner and breakfast conversation, said that this SOS meeting has opened the eyes of all researchers and clinicians in this respect, meaning that research on the brain and endocrine systems, and all others systems that were presented, could be used to help in the understanding and treatment of ME/CFIDS/CFS.

What I saw in the meeting was the coming together of different disciplines to help demystify this disease.

I was impressed with many presentations, Dr. Bell was great in his opening speech. "The medical community is responsible for the confusion of this disease and the patients are the heroes", or something to that affect. Dr. Bell also stepped in on the discussion of abuse as being the cause of this disease. He found this not to be true.

Dr. Roseanne Armitage, University of Texas, Dallas, spoke about the problems with using the psychotropic drugs and the interruption of sleep. She named trycyclics as major offenders that cause sleep disturbance and then go on to cause problems in the brain and immune system such as waking up more often, movement in sleep, etc. She spoke about other psychotropic drugs and said that all need to be looked at carefully because all interfere with the deep sleep and the length of time you go into the sleep that is needed for the support of the immune system and neurological system. (She spoke during the time I would have been awake in California, so I remember her very well.) She had much, much more to say.

Dr. Opp in the first session was pulled in at the last minute as Dr. Streeten was to be in the first section. He was a bit unorganized and, at the time, I was really concerned about what he was talking about and where was he going in his hypothesis and conclusions. So when you listen to that, know that he was asked at the very last minute to come in and speak. It was a disappointing presentation, though he seemed to have a lot to offer.

Others have reported that Dr. Moldofsky, who preceded Dr. Armitage from Texas, was great. That session seemed to be a great session.

Dr. Freeman from Beth Israel spoke on Orthostatic Intolerance and NMH. He was great and actually supports Dr. Peter Rowe's research with Pediatric population.

Dr. Buchwald did challenge these presenters saying that in her study of twins there is no difference in NMH and other cardiac things that John Hopkins has reported on. She made a big deal out of their research having problems. She was deflected very well by Dr. Freeman and Dr. Averili.

It turns out that her twin subjects are chosen in such a way that when they are in the study, you will not see the cardiac problems as reported, due to her methods of recruiting the twins for her study. This was told to me in a private conversation with a prominent doctor who has seen Dr. Buchwald's protocols.

The section on Fatigue, Functional Status and Disability, with Dr. Buchwald and Krupp, Tryon and Passik, was the most boring and frustrating section in the conference. I would agree with Dr. Mary Schweitzer who has already given her report on the SOS. To bad Mary did not see the first day. To have this section on Fatigue in the afternoon after so much science had been presented, seemed to be useless in my opinion. I also noticed that most of the researchers and clinicians left the conference. The room was more then half empty, as opposed to the first day and a half. and this was presented at 1:30 pm. This says something. Maybe those who left early saw it as useless and decided to skip out on it. As I said the other researchers and presenter's took the seriousness of this disease to heart and showed that there is much more to this disease then fatigue. They were also much more professional in their presentations.

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Posted to Co-Cure Mon, 30 Oct 2000 15:40:16 +0100

SOS Report

Here is my own version of the SOS Report:

I was only able to attend one day of the meetings because I was at a conference in early American history at Johns Hopkins (which will lead to a publication for me, very wonderful and a big change from my life 20 months ago!)

I agree with Tom that the professionalism was a welcome relief from what we have experienced in the past -- there was a healthy respect for research done OUTSIDE THE GOVERNMENT AGENCIES that was the most noticeable change -- and also a willingness to allow a broad spectrum of topics to be covered without having them compete on "which is right."

The two sessions I attended on medical issues -- one on immunology and one on NMH/POTS -- were both quite good. Dr. Nancy Klimas covered a lot of ground on immunological defects in U.S.-defined CFS and seemed to convince several of the non-CFS researchers there that the immune system clearly played an important role in the "condition." In response to a question I submitted about De Meirleir's publication in the Feb 2000 issue of J. of Am. Med., she stated that it did seem that the 37kDa RnaseL factor (which I personally have) was implicated in a subset of CFS patients, and that it was time we tried to identify who those patients were, and what that meant. Others on the panel echoed a need to better identify the subsets of the condition.

Dr. Jerry Wolinsky of Univ. of Texas at Houston, a specialist in MS who said he knew little about CFS before reading the materials sent him for the conference, suggested that CFS shared much with what he called "organ-specific autoimmune diseases" -- there is geographic variation IF the person lived in the area before the age of 15; he noted that MS relapses are common two weeks after a viral onset.

Dr. Wolinsky noted that 85 percent of MS patients have the R & R variety (relapse and remission -- as opposed to progressive, the type most of us think of when we think of MS) -- and that it was hard to catch the R&R patients at the point in time that whatever was causing their relapse had happened. Most interesting, he said they found these patients worst symptoms did NOT occur at the same time that the de-myelization activity peaked (if I have read my notes here correctly!) The situation was even more complex with patients with progressive MS.

Where that would help us, he said, was to realize that we are probably catching patients too late to get the type of information we want if we are searching for CAUSES. By the time we realize how sick the patient is, and get a diagnosis, it's too late to find the cause.

Dr. Wolinsky went on to suggest that the CFS research community include markers that were statistically abnormal for CFS patients (such as the evidence on alpha and delta waves in sleep that had been presented the day before) without regard to whether it fit 100 percent or even 50 percent of the community, but also be willing to discard markers if they later proved unhelpful in sorting out patients who had the disease from those who didn't, and also in finding subgroups. He said they should focus more on early diagnosis. Long-established patients may give false leads, and treatment failures in long-established patients might discourage the use of treatments that would have helped had they caught the patient earlier. He had many other good suggestions -- I couldn't keep up! -- I managed to write down the phrase "metablic storm," which he thought also described what we were going through. An absolutely fascinating talk.

Dr. Wolinsky provides a good example of why "outsiders" were called in -- precisely for this reason -- to offer suggestions for new research directions; to provide useful information that a CFS researcher may not have thought of, that could help lead to the breakthrough we all know this field needs. The "outsiders" never questioned that something was very wrong with patients diagnosed with CFS -- which was a wonderful relief from some of the other "scientific" experts I have had to listen to. I believe this was due in large part to the readings they were given ahead of time, which were generally peer-reviewed published studies solidly grounded in good research methodology. They accepted the evidence from the research they were given to read ahead of time, and then moved on to try to help us find answers as to why.

In the same session, Dr. Bruce Rabin of the University of Pittsburgh noted there seemed to be many similarities between CFIDS symptoms and symptoms of patients with chronic active hepatitis -- the immune system seemed to be trying to eliminate a virus; he also noted that there are some types of insulin-dependent diabetes that are the result of a viral assault on the pancreas. "Sickness behavior," he argued, is cytokine-driven -- and that something had happened to extend the behavior of cytokines beyond normal responses. He was curious as to whether anyone knew what happened when patients with CFIDS had to have organ transplants. I believe he said (this was a bit over my head) that cytokine-reactive proteins can lead to heart problems -- and wanted to know about that in CFIDS too.

I found the NMH/POTS session very interesting and informative as well -- and not just because I have particular problems with NMH/POTS! Dr. Roy Freeman, of the Beth ISrael-Deaconess Medical Center, stood in for the late Dr. Streeten, who was to have keynoted this session. He provided a very useful presentation of the different terminologies -- what I found most interesting (and I have a lot of problems with NMH/POTS myself) was the number of ways in which the vasodilator reflex system could go wrong that could lead to the same results -- and introduced me to a whole set of new terms from "alpha adrenoreceptor denervation" to "baroreceptors" and "baroreflex" -- no, don't ask me to explain it! It just suggests how immensely complex the topic is.

In the NMH/POTS seminar, there was another interesting presentation by a total outsider, Dr. David Averill of Wake Forest. He knew even less about CFS than Dr. Wolinsky -- he had ignored it altogether whenever it was brought up in the popular media, which was the only time he ever encountered it! Dr. Averill is a specialist on HYPER-tension in Charlotte, NC. He became very excited at the list of symptoms we were exhibiting, because he said that he can duplicate many of them by giving too much medication to hypertensive patients. For example, hypertensive patients on calcium channel blockers can have problems with tachycardia and a greater than average nocturnal drop in blood pressure. Dr. Averill also advised that we collect more information on diurnal fluctuations in blood pressure, heart rate, and cardiac output in CFS patients -- we were assuming too much from a single point in time, he suggested.

I was disappointed (I think a lot of us were) that the panelists all seemed to agree that low blood volume was not the answer. There was some niggling over the diferences between POTS and NMH and other "ANS pathologies" in CFS -- and the "proper" way to test for them -- someone suggested "pan-dysautonomia" -- but that died down. The entire panel agreed that Chiari Malformation information was inconclusive -- in particular, they were concerned about the severity of the operation necessary to correct it and cautioned that while taking extra salt was a relatively harmless experiment, surgery at the top of the spinal column was not. (n.b. -- they were not saying that the Chiari Malformation theory was WRONG, just that the research was very premature, while the surgery was very serious.)

There were some unpleasant moments -- one person asked whether there was evidence that CFS patients had higher-than-normal levels of child abuse in their history, and to my disappointment, one doctor said that there was some evidence to support this. I thought this was a rather cruel and clueless thing to suggest in front of a number of parents of CFIDS children. Edith Sutterlin, who was sitting next to me at the time, whispered (unfortunately, this could not be said out loud to the rest of the group) -- if that were true, then why didn't Holocaust victims show up with "the condition" in large numbers?

However, Dr. David Bell quickly found a microphone and stated that the studies claiming to find such a link have only found a very weak correlation, and that he thinks that is due to the way the questions are asked rather than anything of use to researchers. He then stated VERY strongly that he has seen numerous adolescents and young people over a period of many years and has found no connection whatsoever between child abuse and the disease. It was a real change from the way things used to be that he was there to rebut that comment so quickly. No one else brought it up after that.

Again, when someone asked the usual question about whether the NMH/POTS problems weren't just due to "deconditioning," Dr. Julian Stewart responded that he sees a lot of athletes with the disorder, and that clearly they weren't deconditioned. Although orthostatic intolerance is associated with patients who are bedridden, it was also noted, the vast majority of CFS patients are able to be vertical at least 20 percent of their waking hours, which is enough to prevent that response. There were comments about different organs that could contribute to blood pooling as a problem -- and then yet another call to recognize the ultimate heterogeneity of the category "CFS" itself.

I was personally unhappy with the Fatigue session -- I did not want to see it on the docket at all, so I can't say I was disappointed; it went rather as I expected. Once you start going into "fatigue" studies to deal with something that was named "Chronic Fatigue Syndrome," then researchers begin looking at it as if CFS were just "chronic fatigue" writ large -- as if there were a linear model of ftigue-ness and we're on the upper end of the scale. They are clueless as to the true aspects of the disease itself, frankly, and I found myself walking out of the session repeatedly, unable to sit and listen. I felt sorry for cancer patients being studied by a "fatigue" analyst. At first, their "fatigue" was -- how to say this -- respectable -- that is, there was a physiological explanation: anemia from chemo-therapy. However, they still HAD fatigue after the anemia was taken care of. Now it's no longer legitimate (i.e., physiological) -- and he was going to fix them with ... graduated exercise. I just saw these poor people being boxed into the same prejudices and predetermined "appropriate outcomes" as we have been and could not help but feel sorry for them.

You would think that instead he might have talked about the possible relationship between the anemia of chemotherapy -- and "fatigue" -- and what the physiological abnormality could be that is causing the thing researchers want to call "fatigue" in "CFS." But no. The thought apparently did not occur to him (nor did it occur to any of the panelists to discuss this).

I believe that session lowered the quality of the whole conference -- and it was a shame it was the last session, because it pretty much ended things on a more sour note than should have been necessary.

Someone asked if we could get rid of the fatigue word. One of the outsiders said -- "How would YOU feel about that" -- to the AUDIENCE -- "Can you describe the illness without it?" and that is when I spoke up -- when a panelist was going to answer FOR US, I stood up and said -- NO -- we would NEVER have chosen the word "fatigue" to describe what is wrong with us, it does NOT describe what is wrong with us, and NONE of us wants it -- NONE of us. It diverts attention to the wrong symptoms and the wrong issues. I felt I had to say that strongly because I thought it was important the non-CFS specialists there HEAR that.

Later, I heard the hypertension specialist in an excited discussion with David Bell about what HE thought might be causing "our problem" -- he said that there are abnormalities of neurotransmitters that go on in the spine that cause symptoms like ours -- I could not really follow it becacuse in his excitement he got VERY technical, but this was a good sign, I thought -- he had been engaged by the problem -- something that before was a nonexistent, or even silly, popular diagnosis (CFS) was now to him a very serious condition -- and an area for NEW and EXCITING RESEARCH -- which is what we WANT outside scientists to find out.

There was supposed to have been a session devoted to patient questions and responses, but because questions were submitted anonymously and edited in advance -- and thus many were never asked at all -- I was disappointed in the process. I would have rather seen people line up at the microphones (sitting down if necessary) in the usual fashion, each getting to ask their question in turn, than the method chosen -- instead of being a patient-directed question-answer session, most of the time was wasted rehashing things already said. At least one woman with diagnosed mycoplasma was able to say what she wanted -- that she had improved significantly on medication (in contrast to the way her question was edited and asked to the panel) and thought that was important -- and the panelists agreed those sorts of things were important to keep track of. There should have -- could have -- been more of those moments. I suspect they did it otherwise because of the bad attitude some within the NIH and CDC have displayed towards patients getting to speak for themselves -- there are some patients who get emotional, but I would think that the professionals -- who are healthy -- would be a bit more understanding of what the patients go through. Dr. Reeves was particularly vocal at the last CFSCC meeting I was at, about how CFS patients are the most "abusive" he has ever encountered. Well, one of the main symptoms of this disease, after all, is that it ROBS us of our ability to THINK as clearly as we used to, to be as ARTICULATE as we used to -- it seems rather harsh not to try to be understanding of the effects of cognitive dysfunction, which is our own type of paraplegia. So I fear that the comments were edited to "protect" the scientists -- and I'm sorry if that were so. I hope that gets reconsidered at future conferences -- and I do hope there are future conferences, because I believe this was a success.

Yes, there were problems, but it bears repeating: as a whole, the conference was definitely a success. I wish I could have attended the first day. I hope that it got SOME kind of publicity!! And I hope that the information and ideas presented will translate into ACTION on the part of the NIH, CDC, and other agencies.

But even if there is no publicity; even if there is no direct action by the government -- what happened was significant. There are now scientists with good reputations, in important specialties, who KNOW that CFS (M.E.) is a serious condition meriting much more serious research. They didn't know it before. From this meeting may come the spark that leads to that Big Breakthrough -- somewhere none of us could have expected. And that's why the meeting was a success.

Mary Schweitzer, Ph.D.
schweit2@ix.netcom.com
The CFIDS/M.E. Information Page:www.cfids-me.org/
Information on RnaseL Enzyme Dysfunction Disease (R.E.D.D.) www.cfids-me.org/redd/
Essays on CFIDS/M.E. ("Living Death, Living Life"): www.cfids-me.org/marys/essays.html

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