HTLV-1 / XMRV Conference starts today!

[eric_s]

Hi Francelle, i have a fibrotic band in my lung (scar tissue) and now My M.E doctor thinks i do have bronchiectasis too, mine flares up and down if i have a cold or something, back on antibiotics right now.

Have there ever been any sort of epidemiological studies (if that's the right word) with regards to that kind of pathologies in people with ME/CFS? That might be "interesting".

 

[eric_s]

Hi all,

I had an email-chat last week with one of the organiser/researcher, and asked if 'XMRV was here to stay ?', and the answer was:

"XMRV is a FACT, it's a new human retrovirus. Currently, there's no proof it causes CVS nor prostate cancer. Earlier associations could not be replicated with other, independent research. During the congress there was more talk about contamination and cross-reaction as an explanation for the earlier found associations with CFS and prostate cancer. Currently, there are a number of tests pending to see to what extent the original centers can identify XMRV, in positive and negative samples.

Until now, it looks like these centers suffer from contamination and cross-reaction.

Another question was if low genetic variation as seen with XMRV was possible ? The answer was: I was right, slow replication is not a counter-argument. In other words, it's possible that XMRV mutates slowly.

OS.

Thanks, OS. What i find a bit confusing is that this person in the beginning says that XMRV is a fact and a new human retrovirus and then says that the centers that have found an association between XMRV and ME/CFS or prostate cancer seem to suffer from contamination and cross-reaction. That seems a bit contradictory to me.

 

[Overstressed]

Thanks, OS. What i find a bit confusing is that this person in the beginning says that XMRV is a fact and a new human retrovirus and then says that the centers that have found an association between XMRV and ME/CFS or prostate cancer seem to suffer from contamination and cross-reaction. That seems a bit contradictory to me.

Hi Eric,

well, to me, it looks like XMRV exists, nobody disagrees with that. What they question for the moment, is that it has been found within the cohort of CFS and prostate cancer. So, things are clear: Mikovits'findings need replication among other research labs, otherwise it doesn't exists in CFS/prostate cancer.

But I'm confident, to me it looks science has to run it's course. We're a huge step further if you ask me, XMRV exists!

OS.

 

[Bob]

My interest was piqued by the presentation "Infection with Human T Lymphotropic Virus 1 is associated with bronchiectasis among Indigenous Australians" by Lloyd Einsiedel. Is there an abstract for this paper?

Although I do not know either my HTLV (nor my XMRV contaminated - lol) status, I do have the relatively uncommon condition of Bronchiectasis. This was diagnosed two years ago, which was, just about two years after the start of my M.E. symptoms and my chronic Mycoplasma Pn. infection.

One does wonder how some of these things interlink!

Infection with Human T Lymphotropic Virus 1 is associated with bronchiectasis among Indigenous Australians
Lloyd Einsiedel, Liselle Fernandes, Tim Spelman, Eduardo Gotuzzo

Abstract:

http://www.retrovirology.com/content/8/S1/A38

http://www.retrovirology.com/content/pdf/1742-4690-8-S1-A38.pdf

 

[Countrygirl]

I was diagnosed with bronchiectasis in both lungs many years ago, following a bout of pneumonia. Developing severe ME was a life saver in one sense because it abruptly ended my everlasting bouts of respiratory infections. I haven't had a cold since.

Thank you for posting the link with HTLV. That's very interesting, although I don't think I have the RV, as far as I know.

I wonder how common bronchiectasis is in the ME population?

C.G.

 

[Francelle]

Bronchiectasis!

Jemal no knowledge as to what my HIV status is. Maybe I can front up to my doc and ask for an HTLV and HIV test. I think he would fall off his chair! I tried to do a brief search last night for research papers related to HIV and Bronchiectasis and either I didnt look hard enough or they are not internet accessible. Do you have any links? Apart from possible retroviruses, I know I have a gene deletion for the Cystic Fibrosis DF508 mutation, so how much this contributes to this malady is anyones guess.

Justy sorry to hear about your possible Bronchiectasis. My lungs have been great since I had four months of Azithromycin in 2008/9. I do not get colds since the onset of M.E. so hopefully the lungs will stay clear..forever (thats the only plus of having M.E.). Obviously the Bronchiectasis is always there and is a ticking time-bomb ready to be activated with any infection.

Eric_s - certainly would be very interesting to see what else lurks in M.E. patients besides POTS/OI; IBS; IC; and all the other well documented symptoms.

Bob Thanks for that abstract. I may email Lloyd Einsiedel and ask if he would kindly forward me a full-text copy of his paper if it is indeed in a full-text form.

Countrygirl My Bronchiectasis is also bilateral and like you since I had that terrible initial chest infection when the B. was diagnosed while hospitalised in 2008, I havent had further infections. I dont want to ever feel like that again!!

 

[Jemal]

Jemal no knowledge as to what my HIV status is. Maybe I can front up to my doc and ask for an HTLV and HIV test. I think he would fall off his chair! I tried to do a brief search last night for research papers related to HIV and Bronchiectasis and either I didnt look hard enough or they are not internet accessible. Do you have any links? Apart from possible retroviruses, I know I have a gene deletion for the Cystic Fibrosis DF508 mutation, so how much this contributes to this malady is anyones guess.

I found that quote on Wikipedia:
http://en.wikipedia.org/wiki/Bronchiectasis

It is based on this study I think:
http://chestjournal.chestpubs.org/content/112/5/1202.full.pdf

If you search Google for "+HIV +Bronchiectasis" you will find a lot more papers. Here's some samples:

HIV related bronchiectasis.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC475103/

Risk factors for the development of bronchiectasis in HIV-infected children
http://www.ncbi.nlm.nih.gov/pubmed/17722116

Anyway, I am not saying you have HTLV or HIV, but I think you should test for them to exclude them. My doctor tested me for HIV multiple times, when I approached him with my ME/CFS symptoms. I don't know my HTLV status yet though and I think I will ask for a test.