Guest guest Posted June 4, 2006 Report Share Posted June 4, 2006 I will try one more time. The NCF is a charitable foundation not a research team of scientists. Knox and Carrigan are scientists who havve focused on viral research. The existed before the NCF ever started funding their studies. My point is this - DeMeirleir has not been credited for his work, nor has he been funded for further research by the NCF. Indeed, he has been castigated for filing a patent on stat-1 - filing patents is done by any scientist with half a brain who wants to be able to fund his research in the future. Research is terribly expensive. My other point is this - It looks like DeMeirleir tends to think that the underlying causes of cfs are bacterial, not viral. This fits with most research so far indicating that viral infections are opportunistic in cfs unlike AIDS where HIV is causitive. So my conclusion is this - Why not fund research into the bacteria that seem to be quite common in cfs - borrrelia, mycoplasma, bartonella, rickettsia, babesia, erhlichia, perhaps some parasites? We don't have any idea how common these might be in cfs and fms. a Carnes > > The NCF used the research by their own researchers, Knox and Carrigan, > and others, for Stat 1, etc, not Dr. D.. You might want to email and > ask Gail for access to all the links with the supporting documentation, > so that you can be accurate regarding this new finding. . > > I have read most of the supporting documents, which number over 500 > pages. I implore this list to email Gail, directly, with your > questions, and not draw conclusions on a mere press release: > gailronda@... > <http://releases.usnewswire.com/redir.asp? ReleaseID=66663 & Link=mailto:gailronda@...> > > T.S. > > pjeanneus wrote: > > , > > Let me try to make my point again. > > > > 1. The NCF used DeMeirleir's research on Stat 1 and his patent > > information which is public domain knowledge, but did not give him > > any credit - no footnoted link to his studies. > > > > 2. The NCF funded research on a virus which may or may not have much > > to do with causing cfs. > > > > 3. DeMeirleir, who is arguably the foremost researcher along with > > Suhadolnik and Englebienne on this whole question, has not indicated > > that he feels a virus is the responsible infection for the downstream > > destruction of RNaseL or stat 1. Indeed, he gives at least equal > > responsibility to both viruses and bacteria. MY QUESTION ALL ALONG > > HAS BEEN WHY DOESN'T THE NCF LOCATED IN THE HEART OF LYME COUNTRY > > FUND RESEARCH INTO BACTERIAL INFECTIONS THAT COULD DAMAGE THE RNASEL > > PATHWAY? Please note that patients with borrelia often are also > > carrying mycoplasma mentioned by DeMeirleir as affecting RNaseL and > > stat 1. > > > > Cort doesn't go deeply into stat 1 since this was not covered > > in depth in DeMeirleir's book. DeMeirleir does mention repeatedly > > that the virus infections found in cfs may be opportunistic and that > > bacteria such as mycoplasma can alter the RNaseL pathway. Also, in > > DeMeirleir's treatment protocol he used both Ampligen and antibiotics > > alternating each 4 months at a time. I don't think he uses Ampligen > > at all anymore, probably because it causes further degradation of > > stat 1 - again this LOOKS LIKE a virus is not the cause according to > > DeMeirleir as Ampligen is used to treat viral infections. Hemespherix > > has started researching the use of Ampligen for AIDS after all. > > > > Here is another quote from Cort's summary just to make the point > > again. > > > > http://www.phoenix-cfs.org/The%20SITE/CFSABAVI.htm > > > > " Another possible factor in the apoptotic disregulation seen is the > > high number of opportunistic infections CFS patients have. Viruses, > > chlamydia and mycoplasma are all able to inhibit apoptosis. (We will > > see later that mycoplasmas also appear to be able to fragment RNase > > L. Opportunistic infections can also aggravate the pathogenic > > process in CFS by disrupting metabolic pathways and cytokine > > production. G-actin cleavage undoubtedly negatively effects antigen > > presentation and phagocytosis. " > > > > a Carnes Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2006 Report Share Posted June 5, 2006 a, I do not understand why you are yelling on this list, about what you think the NCF should be doing with their limited funds, just when people want to discuss what they just now announce that they HAVE been doing. We have just, again, as in many years past, spent weeks discussing all of your pet theories and topics with all who agree with you, or who want to discuss it, and you can not even give the light of day to other discussions of a new announcement of interest to many other patients. I also do not know why you were challenging Beach about his name. What in the H difference does that make, or the one that you use, or anyone uses, just to talk as patients about research? It seemed to be either a change the topic, or attempt to intimidate. That is not a good precedent to set, since you know very well that people use nicknames for a variety of reasons, including privacy for they and family, or connected to jobs, insurance, disabilty cases, and other reasons that are none of anyone's business. Please give the respect and space to others' interests that are given to yours. Katrina > > > , > > > Let me try to make my point again. > > > > > > 1. The NCF used DeMeirleir's research on Stat 1 and his patent > > > information which is public domain knowledge, but did not give him > > > any credit - no footnoted link to his studies. > > > > > > 2. The NCF funded research on a virus which may or may not have > much > > > to do with causing cfs. > > > > > > 3. DeMeirleir, who is arguably the foremost researcher along with > > > Suhadolnik and Englebienne on this whole question, has not > indicated > > > that he feels a virus is the responsible infection for the > downstream > > > destruction of RNaseL or stat 1. Indeed, he gives at least equal > > > responsibility to both viruses and bacteria. MY QUESTION ALL ALONG > > > HAS BEEN WHY DOESN'T THE NCF LOCATED IN THE HEART OF LYME COUNTRY > > > FUND RESEARCH INTO BACTERIAL INFECTIONS THAT COULD DAMAGE THE > RNASEL > > > PATHWAY? Please note that patients with borrelia often are also > > > carrying mycoplasma mentioned by DeMeirleir as affecting RNaseL > and > > > stat 1. > > > > > > Cort doesn't go deeply into stat 1 since this was not > covered > > > in depth in DeMeirleir's book. DeMeirleir does mention repeatedly > > > that the virus infections found in cfs may be opportunistic and > that > > > bacteria such as mycoplasma can alter the RNaseL pathway. Also, in > > > DeMeirleir's treatment protocol he used both Ampligen and > antibiotics > > > alternating each 4 months at a time. I don't think he uses > Ampligen > > > at all anymore, probably because it causes further degradation of > > > stat 1 - again this LOOKS LIKE a virus is not the cause according > to > > > DeMeirleir as Ampligen is used to treat viral infections. > Hemespherix > > > has started researching the use of Ampligen for AIDS after all. > > > > > > Here is another quote from Cort's summary just to make the point > > > again. > > > > > > http://www.phoenix-cfs.org/The%20SITE/CFSABAVI.htm > > > > > > " Another possible factor in the apoptotic disregulation seen is > the > > > high number of opportunistic infections CFS patients have. > Viruses, > > > chlamydia and mycoplasma are all able to inhibit apoptosis. (We > will > > > see later that mycoplasmas also appear to be able to fragment > RNase > > > L. Opportunistic infections can also aggravate the pathogenic > > > process in CFS by disrupting metabolic pathways and cytokine > > > production. G-actin cleavage undoubtedly negatively effects > antigen > > > presentation and phagocytosis. " > > > > > > a Carnes > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2006 Report Share Posted June 5, 2006 Excellent post Kat. Covers alot of areas - and could be applicable to any of us at any time we forget why we're here. Barb > > > > , > > > > Let me try to make my point again. > > > > > > > > 1. The NCF used DeMeirleir's research on Stat 1 and his patent > > > > information which is public domain knowledge, but did not give him > > > > any credit - no footnoted link to his studies. > > > > > > > > 2. The NCF funded research on a virus which may or may not have > > much > > > > to do with causing cfs. > > > > > > > > 3. DeMeirleir, who is arguably the foremost researcher along with > > > > Suhadolnik and Englebienne on this whole question, has not > > indicated > > > > that he feels a virus is the responsible infection for the > > downstream > > > > destruction of RNaseL or stat 1. Indeed, he gives at least equal > > > > responsibility to both viruses and bacteria. MY QUESTION ALL ALONG > > > > HAS BEEN WHY DOESN'T THE NCF LOCATED IN THE HEART OF LYME COUNTRY > > > > FUND RESEARCH INTO BACTERIAL INFECTIONS THAT COULD DAMAGE THE > > RNASEL > > > > PATHWAY? Please note that patients with borrelia often are also > > > > carrying mycoplasma mentioned by DeMeirleir as affecting RNaseL > > and > > > > stat 1. > > > > > > > > Cort doesn't go deeply into stat 1 since this was not > > covered > > > > in depth in DeMeirleir's book. DeMeirleir does mention repeatedly > > > > that the virus infections found in cfs may be opportunistic and > > that > > > > bacteria such as mycoplasma can alter the RNaseL pathway. Also, in > > > > DeMeirleir's treatment protocol he used both Ampligen and > > antibiotics > > > > alternating each 4 months at a time. I don't think he uses > > Ampligen > > > > at all anymore, probably because it causes further degradation of > > > > stat 1 - again this LOOKS LIKE a virus is not the cause according > > to > > > > DeMeirleir as Ampligen is used to treat viral infections. > > Hemespherix > > > > has started researching the use of Ampligen for AIDS after all. > > > > > > > > Here is another quote from Cort's summary just to make the point > > > > again. > > > > > > > > http://www.phoenix-cfs.org/The%20SITE/CFSABAVI.htm > > > > > > > > " Another possible factor in the apoptotic disregulation seen is > > the > > > > high number of opportunistic infections CFS patients have. > > Viruses, > > > > chlamydia and mycoplasma are all able to inhibit apoptosis. (We > > will > > > > see later that mycoplasmas also appear to be able to fragment > > RNase > > > > L. Opportunistic infections can also aggravate the pathogenic > > > > process in CFS by disrupting metabolic pathways and cytokine > > > > production. G-actin cleavage undoubtedly negatively effects > > antigen > > > > presentation and phagocytosis. " > > > > > > > > a Carnes > > > Quote Link to comment Share on other sites More sharing options...
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