Guest guest Posted June 10, 2006 Report Share Posted June 10, 2006 Beach, A techie friend told me last year, that increasingly on-line, even on professional sites, vital info and knowledgable voices have gone silent...in lieu of self-proclaimed experts who now dominate. Kind of like mainstream media today? Medical Journals, and the Psych CFS experts? Many read, but do not post on CFS research, treatment, advocacy sites, who have important questions, and things to offer. Katrina Katrina > > > > > > > > (not solely referring to this group) > > > > As I was seemingly disintegrating from ME/CFS in 1989/90 ( had > pushed through for 4 years), I discovered some articles and the > CAA/CFIDS Chronicle at a local Health Center. Oh my God, that was such > a relief. At that point, there were no Psychologizers in Dominance, or > other Exploiters or Haters of severely ill people running the show. > (Visably, anyway...but this was not the CDC). > > > > There was the Rolling Stone article called " Raggedy Ann Syndrome " , > and a few others. (One was called " Dancing with the Serpent " , by a > patient). Even before my diagnosis, and uncertain what was wrong with > me, the material I read made it quite clear that " these people " were > living a nightmare, with nowhere to turn. Were being mocked and > ridiculed by family, friends and physicians, and left in the dark, to > fend for themselves, with a frightening disease . > > > > The 1st Chronicle I saw was 1988. It, and those that followed > printed all known studies that were being done. But not only that, the > theories and articles that were being thought and written. > > > > For a few years, the handful of dedicated researchers and Clinicians > were featured regularly with the few treatments they were trying. We > all knew they did not have the cause or cure. But the unique and > empowering thing was, they were sharing what they did have....directly > with patients (Most have remained at the top of the field since). > Puttting them all in one place allowed for > comparison/cross-referencing, also. > > > > Basically, we got to witness the Scientists' actual > thinking/brainstorming process. We got to hear them " thinking out > loud " , as it were. It was educational as far as how Scientific > thinking/investigation is done in it's embryonic stages. This was also > hopeful, in that someone cared enough about our disease to focus on it., > > And it stimulated our own thinking in new ways, some of which/whom > have evolved much further today. > > > > We looked forward to that Chronicle and devoured it cover to cover > when it arrived. > > It helped many of us to " go on " , to learn about Science and > Medicine, to take some interest in our own behalf, to participate in > the discovery process. To convey hope to the newly diagnosed, and mean > it. We were not forgotten. > > > > {Pre-Internet} In the Support group that I ran for 10 years, we > agreed to bring any and all articles from anywhere that we could find, > and share and discuss them. We had different levels of Scientific > background, and processing abilities, and all learned from each other > and whatever was available. > > > > In early 90s, CAA printed entire research issues, and one that was > just on the Brain. It told about about how memories are made and the > different kinds, stages and retrieval processes. It showed what > children's and other games and exercises could be done to help certain > brain functions (spatial, sequencing, etc.). > > ********************************************** > > In 1991? Headlines all over the world, announced " possible cause of > CFS found " . It was Elaine de Frietas's finding of an HTLV-like strand > in the blood of CFS patients. So, we all began to learn about the HTLV > viruses, and more about Science and Medicine. > > This finding seemed to fade from discussion, and I thought it had > been fully dis-proven. > > ( I then learned Dr. de Frietas had become ill, moved, and her work > also de-funded, tho she pleaded for someone else to take it on) > > ***********************************************At the 1996 AACFS > International Research Conference, Scientists remarked that this was > the most patient-involved Conference they had attended. Some of them > really liked that. Some, not so sure, I'd guess. > > > > I stood in the corridor discussing HHV6 with Dr. Ablashi? damn, > sorry if I mispelled. It was really fun, educational and inspired a > sense of dignity, not previously present, while mostly isolated in a > bed, now being treated as an idiot by most I encountered. > > > > At a Dinner one night, I got to ask Dr. a personal CFS > question I was wondering about. I sat by Klimas in the > auditorium and later stood with others as she mused about biopsy-ing > lymph nodes (which she did a few years later). I asked Kenny de M how > his 30 or so patients were doing on Ampligen. I got to hear Jay > Goldstein talk about his theories, and a couple of his patients tell > me how they were faring, and by using what. > > > > It was incredibly powerful to witness Global brains in Science > (including from AIDS and Cancer fields) take FIVE DAYS just to discuss > and share studies on US!! > > And to meet Hundreds of fellow sufferers and activists. And together > to listen, tape, take notes, and learn, ask questions, right along > with the Scientists. > > ********************************************** > > I'd also attended an awards dinner another year, for Jay Levy and > Rest, and spoke to each of them. Dr. Levy (UCSF) nearly had a > marker for CFS in early 90s. Enough that my friends went and " got > tested " . He was not able to perfect it, because he was promptly > de-funded. I learned that most/all researchers who took an interest in > CFS, including who were tops in Cancer, AIDS research were also > suddenly de-funded. > > ********************************************** > > Since getting my blood tested and being found postive for the CFS > Ciguatera Epitope, I was able to speak with Dr. Hokama about what he > was thinking and working on. > > > > Out of all of these early people and their theories, 99% were not > published, double blinded, conclusive, etc. Yet, I don't think any of > them have been rendered " irrelevant " . They all contain tiny or large > pieces of a massively complex puzzle. Of course each has been > passionate about their pieces, or convinced they're onto real answers. > How could they not? How could they continue to be stimulated and study > if not having the belief and goal that " this may be it " ? > > *********************************************** > > Somewhere in the 90s, CAA/Chronicle did a complete turn-around. No > longer did they print the " thinking in progress " kind of articles. Or, > even some of the studies at all. They, too shut the patients out of > what all was going on in various labs around the world, and the minds > of those studying our disease. > > > > It made a big lonely, gaping gap, and for pretty boring reading. It > put us back into the dark, as to what the same experts were thinking > or working on. Had they abandoned us, given up, hit the wall? > > > > Then the Chronicle moved into " coping " , or feel good stories. And > closer to " Mainstream " , status quo reporting. > > > > They clearly were no longer going to print theories or preliminary > studies, but only the most conservative publishings,, connecting more > with the Goverment/CDC, even leaning toward the psychological. > Patients began to see them as selling out, and suppressing information > and leaving a VOID OF HOPE. > > > > Many patients protested this, believing we are not children and > deserve to know of the works in progress, too. And deserve to have our > own *witnessing and thinking* process. > > > > Others supported the changes, and alliance with Govt, may have felt > it was irreponsible to put out all of the preliminary, non-conclusive, > non-mainstream studies and theories. > > Don't want to be bothered until they figure it all out. > > Or got tired of the roller coaster that " this may be it " . > > Only want to see Mainstream/CDC/NIH/JAMA level announcements. > > ***********************************************This reminded me of > the AIDS movement. > > And by the way, as some of you perhaps, I recall when AIDS patients > were a small finite group...not millions. > > And when the " cause " , modes of transmission and even the test were > KNOWN before they were publicised, and made available to all > > > > The CDC knew that HIV was in the blood supply, but we (and > Hemophiliacs) were not told this.. > > thus, many many lives were lost. > > > > The Epidemic was now spreading like wildfire, it seemed, and > hundreds and hundreds were dying. Gay men and others were losing 20, > 30, 40 friends. This went on and on and on. > > > > Activists formed and were demanding to know about the research, more > than they were privy to, and more than most patient groups ever demanded. > > > > Later,Patients at AIDS Conferences were beginning to make scenes. > There was alot of in- > > fighting on this...many fearing the Scientists would get fed up and > quit...we should just let them (and CDC) do their jobs, however slowly > or clandestine, uninterrupted by " us " . > > > > Others were fed up with the dying, and kept up the activism and > scenes, demanding answers. Some people marched in the streets. > Demanding dignity, research funds, testing, and treatment. > > Blood was thrown on the steps of the NIH. {Persons in the AIDS > movement had bitter, bitter disputes, or hashing out to consensus, on > how to proceed}. > > > > I remember an article that said PWA's (people with AIDS) had > different styles of coping...some would be the activist type, or > shouting in the streets...others would be meditating on a Blue Light > in their rooms. (Implied was, that all were valid). > > > > Some were studying the Immune System themselves, and using every > wholistic treatment and supplement they could get their hands on. {ANd > still do...there are people living with HIV for over 20 years, who > have survived, even thrived, having never taken an AIDS Pharmaceutical} > > > > Some communities, finding some compassion and funding, created > " Living Rooms " ...Centers, calm places where AIDS patients could safely > be in their last days. > > > > ACT-UP formed and said to the Govt/NIH/World, stop helping us die, > and help us live!!! > > > > Besides always wanting more funding for research, and more > forthcoming about it, there was a cry for early release of > treatment..that dying people deserved a chance, and to make their own > decisions on risks. Some of the laws in place now on Compassionate > early release came from this activism. {This was before Pharmaceutical > Corporations ran most of the Drug Trials, or at least before we knew it}. > > *********************************************** > > In the early years of , patients of CFS > Specialists, such as Dr. Cheney regularly posted on what he was > studying and treatments he/they were trying. From this generosity, > many of us were able to observe, you might say, small trials. And, if > we could and chose to, try things ourselves, having some idea of how > to carefully dose, and what some outcomes might be. This is how I > found out about raising Glutathione with Immunopro, and clearing > pathogens, and I decided to do it. > > > > Again, putting some power into our own hands...and, at the least, > some of the thinking that was going on in our behalf. > > Besides the sense of comaraderie, out of the isolation. > > > > Patients used to write out their entire protocol for others on list > to know. > > But some people got angry about this, and mocked and ridiculed the > gratitude for sharing preliminary findings, and that no one was > finding a CURE for CFS. > > > > The fact that Dr. Cheney, for instance, and the field in general > evolves at such a rapid rate, and the fact that preliminary findings, > and patients who posted their responses...and those who were eager to > hear them...were so viciously attacked...made Cheney patients pretty > much go underground. They also did not want to be irresponsible in > giving the impression that THIS...each one's protocol, was " THE > ANSWER " for everyone. List members seemed less able not to be in Black > and White thinking...either it's THE ANSWER/CAUSE/CURE, or it's > irrelevant/irresponsible. > > > > Thusly, yet more doors were closed to us, as to the actual thinking > and discovering of our Specialists. We may possibly only hear it if > they publish, or autor books, which is rare, and even then, may or may > not actually DISCUSS it. It depends on the dominant voices on the > lists at the time. > > ********************************************** > > A main part of the advocacy of J Fox, regarding Parkinson's, > and Reeves, regarding Spinal Cord Injury, is that they, > with no Medical background, but only as patients (with a " name " ), cast > around for Scientists to interview, to find out what studies might be > languishing, for lack of funding, that might have promise for their > conditions. > > I thought this was an exciting approach, and a great story in > itself. This is how they decided what to take to Congress in their > pleas for funding, and to other patients and populace to inspire hope. > > > > It is from this that Reeves repeatedly said that he and > others would walk again, and J Fox intends to be around for a > cure. Is this irresponsible? Is this empowering? > > *********************************************** > > Somewhere back there, another National ME/CFIDS/CFS group formed > that is all volunteer and mainly patients. Besides advocating for many > individuals in legal and other crises, and writing a pamphlet for > schools, about ME/CFS children, they decided to raise funds for some > of the multiple un-known/un-funded studies sitting around in labs > across the world. > > > > Their Medical Director, (a patient, I believe) and others, comb > through thousands of papers, communicate with multiple Scientists > personally, to try and connect dots that may be relevant to us, and > re-generate interest and funds for studies that may provide missing > pieces of ME/CFIDS/CFS. > > > > Once, they found through the Freedom of Information Act, that an NIH > researcher, Sidney Grossberg, had discovered and patented a > virus...the JHK?? virus, he, believing it to be the cause of CFS! > > I googled this virus and sure enough, there it/NIH was...very surreal. > > > > This org.'s " dots " and funding, is how it came to be that > University of Hawaii's Dr. Hokama , the world's leading Ciguatera > expert...found the CFS " Ciguatera Epitope " in blood of majority > tested. (Including my own, and a number on our lists). His work, > seeking cause and treatment, continues today, with One Million dollars > granted from the NIH. > > > > Again, some patients were very happy that an organization was > printing in their Forum, information found nowhere else, that was not > revealed in any mainstream Medical Journals or only peer-reviewed > studies. > > > > But this Org, as stated by themselves, are not Professionals, but > patients, with varying degrees of Scientific background. And certainly > are clearly not slick PR professionals. > > > > They often say they will be revealing the answer, or major pieces to > CFS ...soon. Some have found all of their funded studies exciting to > follow and discuss. And would like to continue to do so. Many people > continue to join and read their Forums. > > > > Others are so enraged at being on the CFS/Cure roller coaster, or > irritated with their " non-professionalism " , or carrying major personal > baggage from past associations, etc., etc,,that those patients who are > grateful to them and/or interested in their work...are mocked and > ridiculed for anything other than denigrating threads about them. > > > > As a matter of fact, a certain sort of " red-baiting " goes on now, > around the world, mainly by a *very small* handful of people.. If > someone has not joined in on the vilifying, or has ever said a > positive word about their work, or. god forbid, wants to discuss > their announcements, they are immediately " suspect " of...??? > > idiotic cheer-leaders, double identities, unsavory motives, some > sort of enemy camp. > > > > Naive newcomers innocently inquire about them {and others in CFS > field} and are given a mixture of true and utterly false denigrating > information. All, again blocking/shutting down discussion that > patients have every right to have, about Scientists that are studying > US...what is in our blood, what may be causal, co-factor, or result > from our disease. > > > > Since when do we, as patients, have to be professionals, reveal > intimate information, agree about everything with each other, > justify/defend or vilify entire Organization of patients, just to > have a damned DISCUSSION about Science FOCUSED or relating to US???? > > > > This is particularly disturbing to me in todays' Political > atmosphere of " terrorist-baiting " , suppression of Science, Government > and Media who like to do all of our > thinking/information-disseminating for us. > > > > Additionally, I find it especially distasteful to bully and dominate > the lists with these attacks against patients who have CLEARLY STATED > (on and off-list), that they want to discuss the revealed research > findings...and who it is WELL KNOWN have cognitive and articulation > impairments and divided attention disabilities. Those less ill, or not > ill at all are fully aware that CFS patients can eventually or quickly > be scrambled, worn down and shut up. > > > > If Findings or Organizations who announce them are irrelevant or > skewed, it will become evident, IMO, by a full and open discussion of > the details by those who desire it. For those who have CLEARLY STATED > they do not desire it, for the Love of God, delete and get out of the way. > > > > I have written this entirely from my own head, heart, and memory, > and hope it is accurate enough for the purpose intended. I am not > trying to assess or conclude all facts about any Org. or study here. I > do not care if anyone holds negative views or if said Findings or Orgs > end up falling flat. > > > > I am not trying to open any can of worms or pit people against each > other. > > > > I am risking extreme personal attack (now and in the future), tho I > pray I don't deserve it, nor it will happen. > > > > We, and other patient groups have a long history (having been hung > out to dry), of looking beyond what " Officials " and the Dominant ($$, > cognitive, and otherwise), offer us. Our lists contain long threads on > theories and studies that are not even on ME/CFS disease. > > > > I am very afraid and very offended that ME/CFS PATIENT voices are > being shut down from within our " own " circles. > > And want us to re-claim the open space for discussing non-psych work > that is looking > > specifically at US. > > > > Thank you, > > > > Katrina > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2006 Report Share Posted June 10, 2006 beachlover1957 wrote: > > Knox and Carrigan's report states that 16% of patients tested > positive for viral antigens versus 0% for controls with > a total group of 19 patients and 24 controls tested. > > If Beach got the statistics right -- and if I got my grade school math right-- then 16% of 19 patients comes out to 3 patients. Can that be right? Can that really be what NCF is basing their claim to have discovered " the cause of CFIDS/ME " on? Another way to look at it is that 84% of the CFS patients tested negative for the " Cryptovirus. " I'm certainly no scientist, but I'm hard pressed to understand how 84% of CFS patients testing negative can be taken as evidence that this virus is the cause of CFS. What am I missing here? Will in Seattle a.k.a. " Sleepless " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2006 Report Share Posted June 11, 2006 Sleepless, Here's what I think. Dr. Robbins isolated the virus, sequenced it, and was able to generate specific antibodies to the virus as the direct result of his viral isolation. Dr. Robbins had tested fifty-six serum specimens from patients who had been diagnosed with CFS along with eleven matching cerebrospinal fluid samples obtained from physicians in Brisbane and Southeast Queensland. Dr. Robbins had determined that 96% of the blood samples and 91% of the spinal fluid samples tested positively for virus specific antibodies in these CFS patients. Knox and Carrigan faced an entirely different hurdle. The NCF reported that " very few reagents were available to researchers for PIV-5. This was a field where special monoclonals and other reagents had evolved over time and therefore had been developed by those scientists who had worked in this field for many years. Typically, these reagents weren't shared with researchers outside the field. " This might be inferred by the fact that in Knox and Carrigan's " Persistent Paramyxovirus " report, they didn't use an antibody against PIV-5 directly. Why? I don't know. However, I'd like to think that if one was available at the time, that logic would say that one ought to be used. So perhaps reagents were a problem. Ultimately, they used a different antibody within the parainfluenza family and got a 16% reactivity. Is this a terrible result considering the lack of specificity? This is probably why they got very specific and went for the PCR for the fusion protein for PIV-5 and were able to find it explicitly in one patient. This provided explicit proof that the virus was definitely there. Robbins had the viral isolate and the reagents he developed from it. Knox and Carrigan had an idea based on Stat-1 results. In a way, Knox and Carrigan were able to support, in a limited manner, the results that Robbins had achieved. In other words, both groups had provided results that supported the likelihood that PIV-5 was potentially involved with this disease and they came from totally different scientific directions with different scientific approaches to detection. That's how I interpret what I've read. FWIW, Beach =============================== If Beach got the statistics right -- and if I got my grade school math right-- then 16% of 19 patients comes out to 3 patients. Can that be right? Can that really be what NCF is basing their claim to have discovered " the cause of CFIDS/ME " on? Another way to look at it is that 84% of the CFS patients tested negative for the " Cryptovirus. " I'm certainly no scientist, but I'm hard pressed to understand how 84% of CFS patients testing negative can be taken as evidence that this virus is the cause of CFS. What am I missing here? Will in Seattle a.k.a. " Sleepless " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2006 Report Share Posted June 12, 2006 > > If Beach got the statistics right -- and if I got my grade school math > right-- then 16% of 19 patients comes out to 3 patients. Can that be > right? Can that really be what NCF is basing their claim to have > discovered " the cause of CFIDS/ME " on? > > Another way to look at it is that 84% of the CFS patients tested > negative for the " Cryptovirus. " > > I'm certainly no scientist, but I'm hard pressed to understand how 84% > of CFS patients testing negative can be taken as evidence that this > virus is the cause of CFS. > > What am I missing here? > > Will in Seattle > a.k.a. " Sleepless " > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2006 Report Share Posted June 12, 2006 Simple, here's the way I see it. If the NCF only had antibody reactivity along with ONE PCR, then everyone would say perhaps that it's a little thin on evidence on one hand but with the Stat-1 findings (that support PIV-5) improves the odds. However, coupled with Dr. Robbins viral isolation of the same virus acts to multiply the evidence or to reinforce the same thing. These two findings aren't disjointed but merge towards commonality. Beach PS - I'm still reading. ---------------------- > > > > If Beach got the statistics right -- and if I got my grade school > math > > right-- then 16% of 19 patients comes out to 3 patients. Can that > be > > right? Can that really be what NCF is basing their claim to have > > discovered " the cause of CFIDS/ME " on? > > > > Another way to look at it is that 84% of the CFS patients tested > > negative for the " Cryptovirus. " > > > > I'm certainly no scientist, but I'm hard pressed to understand how > 84% > > of CFS patients testing negative can be taken as evidence that > this > > virus is the cause of CFS. > > > > What am I missing here? > > > > Will in Seattle > > a.k.a. " Sleepless " > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2006 Report Share Posted June 13, 2006 I think that to understand how the NCF came to their hypothesis about PIV-5 you have to connect a lot of dots. I have tried to summarize these dots to the best of my ability. Everyone wants to know if the virus was found in healthy controls. I haven't been able to find the answer to that. The NCF will provide more information in their newsletter to be published at the end of July. Hopefully a lot of our questions will be answered then. Connecting the Dots First, NCF learned about STAT-1 depletion in PWCFS from De Meirleir, funded research with Knox and Carrington to confirm Meirleir's Stat-1 finding, and talked to researchers at Oxford about the epidemiology of CFS. NCF then set out to determine whether there was a virus that depleted STAT-1 and that also fit the epidemiology of CFS. NCF contacted 3 major scientists in the STAT-1 field (Joan Durbin, Levy, and Curt Horvath) who gave them a short list of viruses that deplete STAT-1. These viruses are all in the Paramyxovirus family. PIV-5, previously referred to as Simian Virus 5 in the published literature, rose to the top of that list. With the encouragement and help of the STAT-1 scientists, NCF began to study everything they could find on PIV-5. In 2003, the NCF learned of the extensive research of Dr. Robbins and that Robbins, backed by legal US corporations, had approached the FDA for approval for a test he had developed to identify a Parainfluenza virus pathogen he named Cryptovirus in humans. The NCF ran the nucleotide sequence data from Robbins' research thru Genbank and learned that the fusion protein from the viral isolate that Dr. Robbins had identified matched the SER strain of PIV-5 that had been isolated from swine by Bayer AG company in Germany. Hence, the virus discovered in ill patients by Robbins was a zoonotic virus that had crossed over from swine to humans. In 2005, Knox and Carrington, using a PCR specific probe, found the PIV-5 infection in a former patient of Dr. Bell's and Cheney's. This finding was confirmed by Dr. Lamb, researcher and co-editor of Field's virology. Next, the NCF discovered that in 1997, the NIH NIAID gave Dr. Compans a 12-year grant to study the SER strain of Parainfluenza Virus-5 (PIV-5). Dr. Compans publications on the SER strain included colleagues at the CDC. Hence, the NIH and CDC have been collaborating on a 12-year research grant on PIV-5. PIV-5 Is a Persistent Infection that Causes Immune Dysfunction The characteristics of PIV-5 could produce an illness like CFS. Some strains cause viral encephalitis and neurological disease. Some of the encephalitic strains of PIV-5 could directly infect ependymal cells. Ependymal cells are the cells that line the ventricles of the brain as well as the central canal of the spinal cord. Dr. Robbins had determined that the virus directly infected B-cells and that these cells acted as a reservoir for the virus. The scientists at Bayer concluded that this virus was involved in respiratory and reproductive diseases. PIV-5 directly targets two important components associated with the innate immune response. The first target is the Stat-1 protein. Medical science has revealed that Stat-1 deficient cells are unresponsive to interferons, thus leaving the host defenseless against viral and bacterial infections. PIV-5 directly targets and degrades Stat-1 via one of its viral proteins known as the V protein. This V protein of PIV-5 acts to block interferon signaling. This is an important part of its viral evasion strategy against the host. Dr. DeMeirleir had previously identified a correlation between Stat-1 and RNaseL ratios. RNaseL is an important component of the antiviral pathway. The V protein of PIV-5 has been shown to block intracellular dsRNA signaling thus limiting the yield of beta-interferon during infection. The second target associated with PIV-5 is IRF-3. IRF-3 is notation for interferon regulatory factor-3. When a virus infects a cell, double-stranded RNA (dsRNA) activates the transcription factor IRF-3 which then stimulates type I interferon (alpha/beta) gene expression. The V protein of PIV-5 acts to block interferon production by blocking IRF-3. To summarize, PIV-5 blocks two distinct pathways of the innate immune response due to the fact that its V protein blocks both interferon signaling, by causing the degradation of Stat-1, and interferon production, by blocking IRF-3 nuclear import. Therefore, PIV-5 infection acts as an interferon antagonist in the host. This viral inhibition of host defenses results in persistent infection. The Epidemiology of CFS is Consistent with PIV-5 Infection NCF believes that the epideomology of CFS is consistent with PIV-5 infection. They cite the epidemiological study done by Dr. Bell as one example. > > > > > > If Beach got the statistics right -- and if I got my grade school > > math > > > right-- then 16% of 19 patients comes out to 3 patients. Can that > > be > > > right? Can that really be what NCF is basing their claim to have > > > discovered " the cause of CFIDS/ME " on? > > > > > > Another way to look at it is that 84% of the CFS patients tested > > > negative for the " Cryptovirus. " > > > > > > I'm certainly no scientist, but I'm hard pressed to understand how > > 84% > > > of CFS patients testing negative can be taken as evidence that > > this > > > virus is the cause of CFS. > > > > > > What am I missing here? > > > > > > Will in Seattle > > > a.k.a. " Sleepless " > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2006 Report Share Posted June 14, 2006 Katrina, You have written a lengthy overview of the political history of CFIDS. It is outstanding. But I am missing one thing, where is the respect and mention of Dr. Kenny DeMeirleir and his contributions and sacrifice to our community? Also, I think out of respect for ourselves we need to accept and realize that whatever CFIDS is, it causes CNS disruption which we like to call brain fog, but which in many cases is severe mental illness, depression, bipolar disorder, anxiety, confusion, disrupted sleep,hallucinations, paranoia etc. We really cannot expect patients on email lists to always be rational given that they are victims of this severe disease. (probably CNS infection with certain bacteria) a Carnes > > Katrina, > > The best man at my wedding, some 35 years ago, is a MD psychiatrist > today. He and I go way way back in time. He lives in a neighboring > town. Recently, I called him about " old times " and asked if I could > stop by and say hello. While at his office, I showed him various > posts from this and other newsgroups regarding our current discussions > because I valued his opinion. His professional comments were that > " Groups can easily become dominated by verbally abusive people and > that is why the group discussions grow silent. " Those were his words, > not mine. > > Thank you for posting. > > Beach > > ===================== > > > > > > > > > > > (not solely referring to this group) > > > > As I was seemingly disintegrating from ME/CFS in 1989/90 ( had > pushed through for 4 years), I discovered some articles and the > CAA/CFIDS Chronicle at a local Health Center. Oh my God, that was such > a relief. At that point, there were no Psychologizers in Dominance, or > other Exploiters or Haters of severely ill people running the show. > (Visably, anyway...but this was not the CDC). > > > > There was the Rolling Stone article called " Raggedy Ann Syndrome " , > and a few others. (One was called " Dancing with the Serpent " , by a > patient). Even before my diagnosis, and uncertain what was wrong with > me, the material I read made it quite clear that " these people " were > living a nightmare, with nowhere to turn. Were being mocked and > ridiculed by family, friends and physicians, and left in the dark, to > fend for themselves, with a frightening disease . > > > > The 1st Chronicle I saw was 1988. It, and those that followed > printed all known studies that were being done. But not only that, the > theories and articles that were being thought and written. > > > > For a few years, the handful of dedicated researchers and Clinicians > were featured regularly with the few treatments they were trying. We > all knew they did not have the cause or cure. But the unique and > empowering thing was, they were sharing what they did have....directly > with patients (Most have remained at the top of the field since). > Puttting them all in one place allowed for > comparison/cross-referencing, also. > > > > Basically, we got to witness the Scientists' actual > thinking/brainstorming process. We got to hear them " thinking out > loud " , as it were. It was educational as far as how Scientific > thinking/investigation is done in it's embryonic stages. This was also > hopeful, in that someone cared enough about our disease to focus on it., > > And it stimulated our own thinking in new ways, some of which/whom > have evolved much further today. > > > > We looked forward to that Chronicle and devoured it cover to cover > when it arrived. > > It helped many of us to " go on " , to learn about Science and > Medicine, to take some interest in our own behalf, to participate in > the discovery process. To convey hope to the newly diagnosed, and mean > it. We were not forgotten. > > > > {Pre-Internet} In the Support group that I ran for 10 years, we > agreed to bring any and all articles from anywhere that we could find, > and share and discuss them. We had different levels of Scientific > background, and processing abilities, and all learned from each other > and whatever was available. > > > > In early 90s, CAA printed entire research issues, and one that was > just on the Brain. It told about about how memories are made and the > different kinds, stages and retrieval processes. It showed what > children's and other games and exercises could be done to help certain > brain functions (spatial, sequencing, etc.). > > ********************************************** > > In 1991? Headlines all over the world, announced " possible cause of > CFS found " . It was Elaine de Frietas's finding of an HTLV-like strand > in the blood of CFS patients. So, we all began to learn about the HTLV > viruses, and more about Science and Medicine. > > This finding seemed to fade from discussion, and I thought it had > been fully dis-proven. > > ( I then learned Dr. de Frietas had become ill, moved, and her work > also de-funded, tho she pleaded for someone else to take it on) > > ***********************************************At the 1996 AACFS > International Research Conference, Scientists remarked that this was > the most patient-involved Conference they had attended. Some of them > really liked that. Some, not so sure, I'd guess. > > > > I stood in the corridor discussing HHV6 with Dr. Ablashi? damn, > sorry if I mispelled. It was really fun, educational and inspired a > sense of dignity, not previously present, while mostly isolated in a > bed, now being treated as an idiot by most I encountered. > > > > At a Dinner one night, I got to ask Dr. a personal CFS > question I was wondering about. I sat by Klimas in the > auditorium and later stood with others as she mused about biopsy-ing > lymph nodes (which she did a few years later). I asked Kenny de M how > his 30 or so patients were doing on Ampligen. I got to hear Jay > Goldstein talk about his theories, and a couple of his patients tell > me how they were faring, and by using what. > > > > It was incredibly powerful to witness Global brains in Science > (including from AIDS and Cancer fields) take FIVE DAYS just to discuss > and share studies on US!! > > And to meet Hundreds of fellow sufferers and activists. And together > to listen, tape, take notes, and learn, ask questions, right along > with the Scientists. > > ********************************************** > > I'd also attended an awards dinner another year, for Jay Levy and > Rest, and spoke to each of them. Dr. Levy (UCSF) nearly had a > marker for CFS in early 90s. Enough that my friends went and " got > tested " . He was not able to perfect it, because he was promptly > de-funded. I learned that most/all researchers who took an interest in > CFS, including who were tops in Cancer, AIDS research were also > suddenly de-funded. > > ********************************************** > > Since getting my blood tested and being found postive for the CFS > Ciguatera Epitope, I was able to speak with Dr. Hokama about what he > was thinking and working on. > > > > Out of all of these early people and their theories, 99% were not > published, double blinded, conclusive, etc. Yet, I don't think any of > them have been rendered " irrelevant " . They all contain tiny or large > pieces of a massively complex puzzle. Of course each has been > passionate about their pieces, or convinced they're onto real answers. > How could they not? How could they continue to be stimulated and study > if not having the belief and goal that " this may be it " ? > > *********************************************** > > Somewhere in the 90s, CAA/Chronicle did a complete turn-around. No > longer did they print the " thinking in progress " kind of articles. Or, > even some of the studies at all. They, too shut the patients out of > what all was going on in various labs around the world, and the minds > of those studying our disease. > > > > It made a big lonely, gaping gap, and for pretty boring reading. It > put us back into the dark, as to what the same experts were thinking > or working on. Had they abandoned us, given up, hit the wall? > > > > Then the Chronicle moved into " coping " , or feel good stories. And > closer to " Mainstream " , status quo reporting. > > > > They clearly were no longer going to print theories or preliminary > studies, but only the most conservative publishings,, connecting more > with the Goverment/CDC, even leaning toward the psychological. > Patients began to see them as selling out, and suppressing information > and leaving a VOID OF HOPE. > > > > Many patients protested this, believing we are not children and > deserve to know of the works in progress, too. And deserve to have our > own *witnessing and thinking* process. > > > > Others supported the changes, and alliance with Govt, may have felt > it was irreponsible to put out all of the preliminary, non- conclusive, > non-mainstream studies and theories. > > Don't want to be bothered until they figure it all out. > > Or got tired of the roller coaster that " this may be it " . > > Only want to see Mainstream/CDC/NIH/JAMA level announcements. > > ***********************************************This reminded me of > the AIDS movement. > > And by the way, as some of you perhaps, I recall when AIDS patients > were a small finite group...not millions. > > And when the " cause " , modes of transmission and even the test were > KNOWN before they were publicised, and made available to all > > > > The CDC knew that HIV was in the blood supply, but we (and > Hemophiliacs) were not told this.. > > thus, many many lives were lost. > > > > The Epidemic was now spreading like wildfire, it seemed, and > hundreds and hundreds were dying. Gay men and others were losing 20, > 30, 40 friends. This went on and on and on. > > > > Activists formed and were demanding to know about the research, more > than they were privy to, and more than most patient groups ever demanded. > > > > Later,Patients at AIDS Conferences were beginning to make scenes. > There was alot of in- > > fighting on this...many fearing the Scientists would get fed up and > quit...we should just let them (and CDC) do their jobs, however slowly > or clandestine, uninterrupted by " us " . > > > > Others were fed up with the dying, and kept up the activism and > scenes, demanding answers. Some people marched in the streets. > Demanding dignity, research funds, testing, and treatment. > > Blood was thrown on the steps of the NIH. {Persons in the AIDS > movement had bitter, bitter disputes, or hashing out to consensus, on > how to proceed}. > > > > I remember an article that said PWA's (people with AIDS) had > different styles of coping...some would be the activist type, or > shouting in the streets...others would be meditating on a Blue Light > in their rooms. (Implied was, that all were valid). > > > > Some were studying the Immune System themselves, and using every > wholistic treatment and supplement they could get their hands on. {ANd > still do...there are people living with HIV for over 20 years, who > have survived, even thrived, having never taken an AIDS Pharmaceutical} > > > > Some communities, finding some compassion and funding, created > " Living Rooms " ...Centers, calm places where AIDS patients could safely > be in their last days. > > > > ACT-UP formed and said to the Govt/NIH/World, stop helping us die, > and help us live!!! > > > > Besides always wanting more funding for research, and more > forthcoming about it, there was a cry for early release of > treatment..that dying people deserved a chance, and to make their own > decisions on risks. Some of the laws in place now on Compassionate > early release came from this activism. {This was before Pharmaceutical > Corporations ran most of the Drug Trials, or at least before we knew it}. > > *********************************************** > > In the early years of , patients of CFS > Specialists, such as Dr. Cheney regularly posted on what he was > studying and treatments he/they were trying. From this generosity, > many of us were able to observe, you might say, small trials. And, if > we could and chose to, try things ourselves, having some idea of how > to carefully dose, and what some outcomes might be. This is how I > found out about raising Glutathione with Immunopro, and clearing > pathogens, and I decided to do it. > > > > Again, putting some power into our own hands...and, at the least, > some of the thinking that was going on in our behalf. > > Besides the sense of comaraderie, out of the isolation. > > > > Patients used to write out their entire protocol for others on list > to know. > > But some people got angry about this, and mocked and ridiculed the > gratitude for sharing preliminary findings, and that no one was > finding a CURE for CFS. > > > > The fact that Dr. Cheney, for instance, and the field in general > evolves at such a rapid rate, and the fact that preliminary findings, > and patients who posted their responses...and those who were eager to > hear them...were so viciously attacked...made Cheney patients pretty > much go underground. They also did not want to be irresponsible in > giving the impression that THIS...each one's protocol, was " THE > ANSWER " for everyone. List members seemed less able not to be in Black > and White thinking...either it's THE ANSWER/CAUSE/CURE, or it's > irrelevant/irresponsible. > > > > Thusly, yet more doors were closed to us, as to the actual thinking > and discovering of our Specialists. We may possibly only hear it if > they publish, or autor books, which is rare, and even then, may or may > not actually DISCUSS it. It depends on the dominant voices on the > lists at the time. > > ********************************************** > > A main part of the advocacy of J Fox, regarding Parkinson's, > and Reeves, regarding Spinal Cord Injury, is that they, > with no Medical background, but only as patients (with a " name " ), cast > around for Scientists to interview, to find out what studies might be > languishing, for lack of funding, that might have promise for their > conditions. > > I thought this was an exciting approach, and a great story in > itself. This is how they decided what to take to Congress in their > pleas for funding, and to other patients and populace to inspire hope. > > > > It is from this that Reeves repeatedly said that he and > others would walk again, and J Fox intends to be around for a > cure. Is this irresponsible? Is this empowering? > > *********************************************** > > Somewhere back there, another National ME/CFIDS/CFS group formed > that is all volunteer and mainly patients. Besides advocating for many > individuals in legal and other crises, and writing a pamphlet for > schools, about ME/CFS children, they decided to raise funds for some > of the multiple un-known/un-funded studies sitting around in labs > across the world. > > > > Their Medical Director, (a patient, I believe) and others, comb > through thousands of papers, communicate with multiple Scientists > personally, to try and connect dots that may be relevant to us, and > re-generate interest and funds for studies that may provide missing > pieces of ME/CFIDS/CFS. > > > > Once, they found through the Freedom of Information Act, that an NIH > researcher, Sidney Grossberg, had discovered and patented a > virus...the JHK?? virus, he, believing it to be the cause of CFS! > > I googled this virus and sure enough, there it/NIH was...very surreal. > > > > This org.'s " dots " and funding, is how it came to be that > University of Hawaii's Dr. Hokama , the world's leading Ciguatera > expert...found the CFS " Ciguatera Epitope " in blood of majority > tested. (Including my own, and a number on our lists). His work, > seeking cause and treatment, continues today, with One Million dollars > granted from the NIH. > > > > Again, some patients were very happy that an organization was > printing in their Forum, information found nowhere else, that was not > revealed in any mainstream Medical Journals or only peer-reviewed > studies. > > > > But this Org, as stated by themselves, are not Professionals, but > patients, with varying degrees of Scientific background. And certainly > are clearly not slick PR professionals. > > > > They often say they will be revealing the answer, or major pieces to > CFS ...soon. Some have found all of their funded studies exciting to > follow and discuss. And would like to continue to do so. Many people > continue to join and read their Forums. > > > > Others are so enraged at being on the CFS/Cure roller coaster, or > irritated with their " non-professionalism " , or carrying major personal > baggage from past associations, etc., etc,,that those patients who are > grateful to them and/or interested in their work...are mocked and > ridiculed for anything other than denigrating threads about them. > > > > As a matter of fact, a certain sort of " red-baiting " goes on now, > around the world, mainly by a *very small* handful of people.. If > someone has not joined in on the vilifying, or has ever said a > positive word about their work, or. god forbid, wants to discuss > their announcements, they are immediately " suspect " of...??? > > idiotic cheer-leaders, double identities, unsavory motives, some > sort of enemy camp. > > > > Naive newcomers innocently inquire about them {and others in CFS > field} and are given a mixture of true and utterly false denigrating > information. All, again blocking/shutting down discussion that > patients have every right to have, about Scientists that are studying > US...what is in our blood, what may be causal, co-factor, or result > from our disease. > > > > Since when do we, as patients, have to be professionals, reveal > intimate information, agree about everything with each other, > justify/defend or vilify entire Organization of patients, just to > have a damned DISCUSSION about Science FOCUSED or relating to US???? > > > > This is particularly disturbing to me in todays' Political > atmosphere of " terrorist-baiting " , suppression of Science, Government > and Media who like to do all of our > thinking/information-disseminating for us. > > > > Additionally, I find it especially distasteful to bully and dominate > the lists with these attacks against patients who have CLEARLY STATED > (on and off-list), that they want to discuss the revealed research > findings...and who it is WELL KNOWN have cognitive and articulation > impairments and divided attention disabilities. Those less ill, or not > ill at all are fully aware that CFS patients can eventually or quickly > be scrambled, worn down and shut up. > > > > If Findings or Organizations who announce them are irrelevant or > skewed, it will become evident, IMO, by a full and open discussion of > the details by those who desire it. For those who have CLEARLY STATED > they do not desire it, for the Love of God, delete and get out of the way. > > > > I have written this entirely from my own head, heart, and memory, > and hope it is accurate enough for the purpose intended. I am not > trying to assess or conclude all facts about any Org. or study here. I > do not care if anyone holds negative views or if said Findings or Orgs > end up falling flat. > > > > I am not trying to open any can of worms or pit people against each > other. > > > > I am risking extreme personal attack (now and in the future), tho I > pray I don't deserve it, nor it will happen. > > > > We, and other patient groups have a long history (having been hung > out to dry), of looking beyond what " Officials " and the Dominant ($$, > cognitive, and otherwise), offer us. Our lists contain long threads on > theories and studies that are not even on ME/CFS disease. > > > > I am very afraid and very offended that ME/CFS PATIENT voices are > being shut down from within our " own " circles. > > And want us to re-claim the open space for discussing non-psych work > that is looking > > specifically at US. > > > > Thank you, > > > > Katrina > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2006 Report Share Posted June 15, 2006 > > Dear Group, > > I am tired of having most of my posts ignored. I am one of the sickest > people on the list, but I do my best to make a contribution. I can only > assume that my contribution is not wanted. > > ***Hi Vickie - I don't think people are intentionally ignoring your posts. Some days there is so much posted to this list that it isn't possible to reply to everything. I know I've had several posts go unanswered, however, I don't take it personally. I also tend to only reply to posts that either are of significance to me, or that I have some relevant info to share. Take care. Bernie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2006 Report Share Posted June 15, 2006 Vickie - I read and appreciate your comments. The fact that I don't respond doesn't mean I don't appreciate them. It just means you have said what you had to say clearly enough that I don't need to respond or you have asked rhetorical questions or you have asked questions to which I don't know the answer. There are nearly 2000 of us on this list as I understand it. Heaven help us all if someone decides to respond to all postings or all decide to respond to one posting! Quote Link to comment Share on other sites More sharing options...
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