1995 what they knew about virus/retrovirus

[heapsreal]

This is a link about what they knew about different viruses, retroviruses, spumavirus, enteroviruses etc back in 1995.

http://www.ncf-net.org/library/jcfsvirus95.htm

With this sort of evidence why hasnt more research money gone into cfs, why are the same questions being asked 15 years later. Was xmrv one of those retroviral type particles found prior to 1994??

If nothing comes of the latest findings with xmrv, is it going to be another 15 plus years before we go through all this again and invent another wheel. How many wheels do we need to invent.

 

[ukxmrv]

Thanks Heapsreal,

I had ME at the time of the last retroviral saga and I don't want to see it happen again. Followed it closely at the time. That's why I would like to see XMRV and the HGR's followed and well researched. Losing nearly 30 years of my life to this disease is bad enough.

 

[alex3619]

Hi, this is the relevant bit from the report, my bolding:

RETROVIRUS-LIKE PARTICLES

At the CFS Research and Clinical Conference 1994, Diack et al. (61) reported the identification of retrovirus particles from the pe ripheral blood lymphocytes of 10/34 CPS patients and none of the controls. The majority of viral particles were similar to the ultra structure of visna virus (lentivirus) and murine leukemia virus. According to the authors, virus-like structures were compatible with various maturation stages of lentivirus. No reverse transcrip tion activity or possible target cell phenotype was found. Considerable work is needed to prove that these ultra-structures resembling a retrovirus are not artifacts.

Bye, Alex, with a special thanks to heapsreal for posting this link.

 

[ukxmrv]

Visna Virus was what Dr Holmes in NZ said his virus looked like then (electron microscope photos)

 

[insearchof]

Hi Heaps

Thanks for posting this article. A nice find and summary.

Diak et al's MLV finding or suggestion, jumped out at me as well.

But no mention there of Dr Michael Holmes, who was believed to have found a retrovirus in CFS in or around 1987

 

[heapsreal]

Heres another link/summary of immune abnormalities in cfs/me,

http://hoopermedical.intodit.com/page/documented-immune-system-abnormalities-in-me-cfs

2007



Recent research has evaluated genetic signatures, described biologic subgroups, and suggested potential targeted treatments. Acute viral infection studies found that initial infection severity was the single best predictor of persistent fatigue. Studies of immune dysfunction (have) extended observations of natural killer cytotoxic cell dysfunction of the cytotoxic T cell through quantitative evaluation of intracellular perforins and granzymes. Other research has focused on a subgroup of patients with reactivated viral infection. Our expanded understanding of the genomics of (ME)CFS has reinforced the evidence that the illness is rooted in a biologic pathogenesis that involves cellular dysfunction and interactions between the physiologic stress response and inflammation. A large body of evidence links (ME)CFS to a persistent viral infection. (ME)CFS patients exhibited a distinct immune profile compared with fatigued and non-fatigued individuals. These patients displayed increased anti-inflammatory cytokines. Investigators noted the tropism with brain and muscle and suggested that the neuroinflammation seen in neuroimaging studies of a subgroup of CFS patients may result from enteroviral infection. The clinical implications are consistent with an immune system that may allow viral reactivation and raises a concern for tumour surveillance as well. The preponderance of available research confirms that immune dysregulation is a primary characteristic of (ME)CFS. These advances should result in targeted therapies that impact immune function, hypothalamic-pituitary-adrenal axis regulation, and persistent viral reactivation (Nancy G Klimas et al. Current Rheumatology Reports 2007:9:6:482-487).

The above is just but one summary of that link. So its just not viruses/retroviruses they are finding but also immune abnormalities consistant with chronic ongoing infections. Theres enough eveidence in the last 2 links for the health authorities to pump funding into some series research into cfs, but it always seems to het overlooked, why??

cheers!!!

 

[August59]

These mostly single entity studies are done with results that are not totally conclusive, but very informative and most likely relevant to a future studies. However, 5 years down the road when another study is done that could tie into these earlier ones it has been forgotten.

Somehow having all these studies compiled into a database would, to me anyway, seem invaluable. We know our disease is a multi-system malfunction, but research always looks at one portion at a time and the results never gets tied back into earlier research. It feels like we are missing the boat!

Connecting the past research studies could very well shape the future of research. I don't know if it is even possible, but I'm confident that it would be relevent.

 

[heapsreal]

These mostly single entity studies are done with results that are not totally conclusive, but very informative and most likely relevant to a future studies. However, 5 years down the road when another study is done that could tie into these earlier ones it has been forgotten.

Somehow having all these studies compiled into a database would, to me anyway, seem invaluable. We know our disease is a multi-system malfunction, but research always looks at one portion at a time and the results never gets tied back into earlier research. It feels like we are missing the boat!

Connecting the past research studies could very well shape the future of research. I don't know if it is even possible, but I'm confident that it would be relevent.

Thats a great idea august, a data base. I think someone mentioned it about ME research pre 1980s but maybe someone with the smarts could create one for PR.

cheers!!!

 

[Grape Funk]

I havent read the link yet, but am about 500/700 pgs deep in old Oslers web. There is no doubt to me this is a type of virus that affects B cells (alex i know you say something like this too). Whether retrovirus or not, there are too many researchers coming up with a novel type of microbe looking into their microscope. Im far from a molecular biologist, but come on, it doesnt take ingeniousness to figure EBV lives in B cells dormant forever, the same virus that was reactivated in so many of these outbreaks.

Btw heapsreal, not that u particularly give a shit!! but i decided on famcyclovir 500mg and working my way up to 1500mg and staying on 3g day of valacyclovir as well. Its only been a month so far, im planning to give it a go for at least 6-7 months.

 

[heapsreal]

I havent read the link yet, but am about 500/700 pgs deep in old Oslers web. There is no doubt to me this is a type of virus that affects B cells (alex i know you say something like this too). Whether retrovirus or not, there are too many researchers coming up with a novel type of microbe looking into their microscope. Im far from a molecular biologist, but come on, it doesnt take ingeniousness to figure EBV lives in B cells dormant forever, the same virus that was reactivated in so many of these outbreaks.

Btw heapsreal, not that u particularly give a shit!! but i decided on famcyclovir 500mg and working my way up to 1500mg and staying on 3g day of valacyclovir as well. Its only been a month so far, im planning to give it a go for at least 6-7 months.

Hey! give a shit! I think its great your trying famvir, they are my biggest sponsers. I actual have a famvir pen i use for work. Im also thinking of adding valtrex to the mix but its a $$ thing at the moment. If i could add valcyte i would too.

Oslers web is a big read, in the end it just made me very frustrated as its just a repeat of whats going on now with xmrv. Its all about politics and trying to get research grants. cfs research grants arent worth much, it seems the money is in the popular illnesses like cancer etc the govt throw money at people researching cancer.

 

[taniaaust1]

These mostly single entity studies are done with results that are not totally conclusive, but very informative and most likely relevant to a future studies. However, 5 years down the road when another study is done that could tie into these earlier ones it has been forgotten.

Somehow having all these studies compiled into a database would, to me anyway, seem invaluable. We know our disease is a multi-system malfunction, but research always looks at one portion at a time and the results never gets tied back into earlier research. It feels like we are missing the boat!

Connecting the past research studies could very well shape the future of research. I don't know if it is even possible, but I'm confident that it would be relevent.

I think that is a huge factor which adds to our issues... and something the ME/CFS communities need to work to fix, we need to gather, sort and preserve studies. We need to have easy study info available to us in which people can easily look up various aspects of ME/CFS and see all the research. Important studies are being forgotten and lost... links may be being missed due to not having all the info right before one.

This is one of the reasons Ive started a while ago trying to gather ME studies (starting with Australia ones) and placing them on the PR wiki.. (so far Ive just got a large list of them on the Australian CFS history and events page but they need to be put onto their own page soon as there is now enough listed to probably do so).

 

[heapsreal]

I think that is a huge factor which adds to our issues... and something the ME/CFS communities need to work to fix, we need to gather, sort and preserve studies. We need to have easy study info available to us in which people can easily look up various aspects of ME/CFS and see all the research. Important studies are being forgotten and lost... links may be being missed due to not having all the info right before one.

This is one of the reasons Ive started a while ago trying to gather ME studies (starting with Australia ones) and placing them on the PR wiki.. (so far Ive just got a large list of them on the Australian CFS history and events page but they need to be put onto their own page soon as there is now enough listed to probably do so).

Good work Tania, how can we make a sticky on PR of cfs/me studies, maybe broken down into things like viruses, bacteria, immune system, ME etc

cheers!!!

 

[coolron33]

That's because you ain't dead, only half dead!