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defreitas question

knackers323

Senior Member
Messages
1,625
so has the DeFreitas work ever been followed through to its conclusion? or is it possible that it might turn out that xmrv isnt our underlying problem but the virus she found is, and nothing is being done about it?

does anyone know the answer to this?
 

ukxmrv

Senior Member
Messages
4,413
Location
London
Depends what you mean "to it's conclusion". After the failed blind studies and then Dr DF's accident and the hurricane it stopped. No one could get funding even if they were interested.

It would be great if someone could pick up all the old story and see if it is worth investigating again. Using todays methods it may have turned out to be different.

The same goes for Holmes in NZ. The blood samples were destroyed 2 years ago but many of the other materials remain.

Scientists today may not want to look at a virus that someone else discovered just to see if they were right. That's really unfair on patients - especially those who were tested in those studies. All of our hopes were raised in those days and we quickly went from suffering from a possible retrovirus to being labelled as mentally ill instead.
 

Sam Carter

Guest
Messages
435
does anyone know the answer to this?

If a novel HTLV-like virus was present in a significant proportion of ME / CFS patients the WPI would almost certainly have found it when they were screening patients blood with DeRisi's Virochip (the process that culminated in them discovering the high prevalence of XMRV infection). However, HTLV incidence is very geographically scattered and it's possible that, by chance, the cohort Elaine DeFreitas studied really did harbour a new virus. The only way to know for sure would be to test them again.
 

Frank

Senior Member
Messages
850
Location
Europe
If the XMRV thing turns out to me a major player, maybe we can do a thankyou Elaine De Freitas project.
 

muffin

Senior Member
Messages
940
Frank: Dr. Defreitas should be thanked a thousand times over for her hard work on Retrovirus research as it is. She lost a great deal because of this research: her career, reputation and health. She is one of the unsung heros in this sordid history. Thankfully, Osler's Web won't allow her and her efforts to be forgotten.
 

xrayspex

Senior Member
Messages
1,111
Location
u.s.a.
lots of food for thought here, thanks y'all
wish my brain was more organized w/info I do gather

mithriel, what do you think of Edward Hoopers book? Its not tht I dont think cfs-type problems existed before vax, I know they did, but Tom Curtis and Edward Hooper seemed to raise some very interesting questions and it looked to me in my reading on it that Fauci stomped out hooper before more investigation really got going postbook
 

knackers323

Senior Member
Messages
1,625
Depends what you mean "to it's conclusion". After the failed blind studies and then Dr DF's accident and the hurricane it stopped. No one could get funding even if they were interested.

It would be great if someone could pick up all the old story and see if it is worth investigating again. Using todays methods it may have turned out to be different.

The same goes for Holmes in NZ. The blood samples were destroyed 2 years ago but many of the other materials remain.

Scientists today may not want to look at a virus that someone else discovered just to see if they were right. That's really unfair on patients - especially those who were tested in those studies. All of our hopes were raised in those days and we quickly went from suffering from a possible retrovirus to being labelled as mentally ill instead.

by concusion, I mean has this virus been ruled out as a factor in the cause of cfs or any other disease?
 

xrayspex

Senior Member
Messages
1,111
Location
u.s.a.
someone posted this @ PH:


Endogenous retroviruses as potential hazards for vaccines.
Miyazawa T.

Laboratory of Signal Transduction, Department of Cell Biology, Institute for Virus Research, Kyoto University, 53 Shogoin-Kawaracho, Sakyo-ku, Kyoto 606-8507, Japan. takavet@gmail.com

Abstract
Retroviruses are classified as exogenous or endogenous according to their mode of transmission. Generally, endogenous retroviruses (ERVs) are not pathogenic in their original hosts; however, some ERVs induce diseases. In humans, a novel gammaretrovirus was discovered in patients with prostate cancer or chronic fatigue syndrome. This virus was closely related to xenotropic murine leukemia virus (X-MLV) and designated as xenotropic murine leukemia virus-related virus (XMRV). The origin and transmission route of XMRV are still unknown at present; however, XMRV may be derived from ERVs of rodents because X-MLVs are ERVs of inbred and wild mice. ****Many live attenuated vaccines for animals are manufactured by using cell lines from animals, which are known to produce infectious ERVs; however, the risks of infection by ERVs from xenospecies through vaccination have been ignored.**** This brief review gives an overview of ERVs in cats, the potential risks of ERV infection by vaccination, the biological characteristics of RD-114 virus (a feline ERV), which possibly contaminates vaccines for companion animals, and the methods for detection of infectious RD-114 virus. 2010 The International Association for Biologicals. Published by Elsevier Ltd. All rights reserved.

PMID: 20378372 [PubMed - in process]

Biologicals. 2010 May;38(3):371-6. Epub 2010 Apr 8.

http://www.ncbi.nlm.nih.gov/pubmed/2037837
 

Cort

Phoenix Rising Founder
If a novel HTLV-like virus was present in a significant proportion of ME / CFS patients the WPI would almost certainly have found it when they were screening patients blood with DeRisi's Virochip (the process that culminated in them discovering the high prevalence of XMRV infection). However, HTLV incidence is very geographically scattered and it's possible that, by chance, the cohort Elaine DeFreitas studied really did harbour a new virus. The only way to know for sure would be to test them again.

Actually that may already have happened. After the CDC meltdown the CAA funded a last trial - this time with Dr. Bell's patients - which was one of the groups that she used in her original paper. She was unable, however, to differentiate them from the healthy controls using her test.

I don't think you can say De Freitas herself brought her experiments to a conclusion. She never had enough money and she felt, later, that too much was asked of her at the time for the money she had. She felt that she really needed a lot more money than order to iron everything out. However the NCF did fund a study looking for evidence of an HTLV like virus in CFS and didn't find any and, as Sam mentioned, it should've shown up in spades in the WPI's big pathogen arrays.
 

acer2000

Senior Member
Messages
818
Actually that may already have happened. After the CDC meltdown the CAA funded a last trial - this time with Dr. Bell's patients - which was one of the groups that she used in her original paper. She was unable, however, to differentiate them from the healthy controls using her test.

I don't think you can say De Freitas herself brought her experiments to a conclusion. She never had enough money and she felt, later, that too much was asked of her at the time for the money she had. She felt that she really needed a lot more money than order to iron everything out. However the NCF did fund a study looking for evidence of an HTLV like virus in CFS and didn't find any and, as Sam mentioned, it should've shown up in spades in the WPI's big pathogen arrays.

Should it have? The virus would have had to been added to the array to begin with for the array to have tested for it. If the virus was never acknowledged as a pathogen, it might not have been entered into the array. Does anyone have a list of what pathogens are tested for by the array?