The Other Spanish XMRV Study - Stalled

[eric_s]

Hi

Here is some more information. Clara Valverde has confirmed to me that all the money donated to the account mentioned in the first post, with the text "Estudio XMRV SFC", goes to XMRV research.

Also IrsiCaixa researchers will make an official presentation at CROI in Boston soon (that conference starts late in February) http://retroconference.org/2011/

 

[Overstressed]

Hi all,

lately you read a lot on the forum to donate money here and there, and I was thinking of that, more particularly to whom we should donate. As it is now, and I think this is a huge thread to our health in general, is that the Pharma Industries sponsor research. That's a very bad thing, we know what HIV has brought us. No attempts to get rid of the virus, just to control it.

Research in general is actually to gain knowledge. That's why you become a researcher, and not a doctor. They're goals are different. So, investing in those kinds of research will bring no benefits directly, unless you live a 100 years. Most of us, don't have the time, so we need to invest in translational research, where research is done with a clear goal in mind: how can we help the patient asap. Therefore, you need to have research going directly to the point, and translate this to drugs, asap.

Now, the only institute planning to do this, at least that I know of, is the WPI. If there are any others, we should list them here. To my humble opinion, that's we way we need to invest, because we will benefit of it. In all other cases, the researcher will benefit. KDM is also doing some kind of translational research.

This has nothing much to do with the Spanish study in this topic, but is more general, and the admin can maybe move my post to a more appropriate place.

But it's something to think of...

OS.

 

[eric_s]

I bet if anyone on this planet knew how to eliminate a retrovirus from the body there would be a pharma company that would love to develop a drug that does that...

This is copied from the IrsiCaixa website:

The IrsiCaixa Institute for AIDS Research is an internationally-recognized oraganization with the aim of contributing to improving understanding of the disease, its prevention and treatments of HIV and AIDS with the ultimate goal of eradicating the epidemic.
It was founded in 1995 as a prvate non-profit making foundation by the Fundaci La Caixa and the Department of Health of the autonomous Catalan government, and is located at the Germans Triuas i Pujol Hospital in Badalona.

Directed by Dr Bonaventura Clotet, IrsiCaixa consists of over 50 researchers who focus their activities on basic research into understanding HIV infection mechanisms and developing new therapies and vaccines. At the same time, the foundation participates in clinical studies to evaluate new therapeutic strategies, and cooperate with developing countries, collaborating in the fight against the pandemic on a global scale.

I think IrsiCaixa do exactly the type of research we need, for HIV, so i guess they are a good choice to try to do the same for XMRV.

I agree the WPI is very good and to me they are number 1, but it's good to not have only one center. I think it would be great to keep up this research in Europe, so that it can spread from IrsiCaixa to other European groups.

We need doctors too, but KDM and the American CFS docs have been working for a very long time and unfortunately they can't help everybody. How should they be able to, if the underlying problem is not known and understood. I'm no scientist or MD but this is my take...

 

[aruschima]

I have watched the drama now since month: a few people in the ME/CFS cyber space have managed to spread paranoia and many just parrot along and bubble away in the same tune !

I am sick and tired from it, literally :In bed:!

Stop speculation, inform your self, check the facts, and than comment ! Do not just follow blindly some people and parrot their paranoia over forums.

Use google for god sake ! Or go on XMRV globla action, face book, and you will find tons of info.

Just one sample here http://cfschronicles.blogspot.com/2011/02/what-independent-advocacy-means-to-me.html

There are many post on this important research done in Spain, and is at the only one in Europe which is serious. The retrovirology researchers of Barcelonas IrsiCaixa lab, Dr Cecilia Cabrera and Dr Julian Blanco, who have been working on HIV with the Director of IrsiCaixa, world-renoun HIV researcher, Dr B Clotet, have concluded a study on the presence of retrovirus XMRV in patients with ME/CFS. They found the retrovirus (and this was presented at the first XMRV International meeting in September 2010 in the USA).

They also determined a pattern, in all patients with ME/CFS which consists of a clear dysregulation of the immune system: high levels of CD5 cells in the CD8 lymphocites and low levels of CD57 cells in the Natural Killer cells (NK), which puts in evidence the low activity of both types of cells in people with ME/CFS. These abnormal patterns would explain the health problems of people with ME/CFS, which include high levels of viral reactivation and of cancer. The team at IrsiCaixa have collaborated with Dr Judy Mikovits during their study.

The WPI cooperated in the first study, and the WPI needs good independent studies out, which support their findings ! And we in Europe are in desperate need of researcher and doctors getting serious. This is what the CFS Liga and ASSSAM is doing, in cooperation with IrsiCaixa.

More about ASSSAM here http://www.asssem.org/

These people are harder hitting than any other organisation I have ever seen: they are going to speak to the senate, considering going to court, they published a manual on ME/CFS/XMRV to by pass mis-information by the governments and health institutions, and have, in a very short time, distributed more than 10 manual's to doctors, hospitals nurses and so forth and keep getting request's.

They do not spend precious time and energy on attacking each other, or attacking other organisations. They go to work !

If anybody dares to starts to tarnish this incredible people, or undermines raising funds for this very important research, I WILL GO IN ATTACK MODE

 

[cigana]

I have made a donation. Sounds like it could be very helpful for us if this work gets to be published...

Mark

 

[Esther12]

I agree with aruschima that, for those wanting to donate money for XMRV research, this does look like a sensible choice. I feel sceptical about these big claims that are floating about without having been properly published.... but that certainly doesn't mean that there's anything wrong with that.

 

[Cort]

I agree with aruschima that, for those wanting to donate money for XMRV research, this does look like a sensible choice. I feel sceptical about these big claims that are floating about without having been properly published.... but that certainly doesn't mean that there's anything wrong with that.

It probably is. As Aruschima notes what XMRV really needs is for an independent lab to find it; that's what will turn the research communities heads around..If they seem to have found it - then supporting them would make sense to me. The fact that they're an HIV lab is reassuring - it gives them alot of credibility.

That will be a fascinating presentation.

 

[Cort]

I got this from Clara - if you want to look at their presentations. The posters by IrsiCAixa in this abstract book are numbers P 05, P 07, P 18.

Here's the presentation of posters among which are the 3 posters of Irsi Caixa.

http://regist2.virology-education.com/abstractbook/2010_8.pdf

They will make the official presentation at CROI in Boston next week.http://retroconference.org/2011/

Asssem will hold a meeting with IrsiCaixa (J. White and C. Cabrera) at the turn of CROIto determine a line of work in relation to XMRV, and immunological dysfunctions found in11 patients with CFS. We will keep you informed.

Only one XMRV presentation that I can see - XMRV: New Findings and
Controversies - I guess that is them.

There is a poster: XMRV and GBV Virus-Host Interaction

At the 2010 CROI conference there were 7 presentations on XMRV including one plenary session...

 

[Snow Leopard]

I think perhaps there is more to this story that we don't know.

How likely is the continuing of this study, how much further funding do they actually need?

 

[aruschima]

http://www.theoneclickgroup.co.uk/news.php?id=4312&sms_ss=facebook&at_xt=4d5ab6aa27062198,0#newspost

http://www.thebodypro.com/content/art39610.html

Eric,

Can you please ask them for more detailed scientific information; testing methods, study design, and if there is any pharma company involved , if , which one and exact purpose of the study. There is conflicting information out there, maybe lost in translation, and just needs direct clarification.

That would be really helpful ....

 

[eric_s]

Hi Aruschima

I have started a question & answers thread for questions about those studies. It's here http://forums.aboutmecfs.org/showth...siCaixa)-Stalled-Questions-amp-Answers-Thread.
There people can find Clara Valverde's email adress. I think it's better people can ask her directly. Please post your questions and answers to the thread, if Clara Valverde agrees with that, so that questions don't get asked multiple times, if possible.

Thanks

 

[eric_s]

In case anyone needs the bank's name and adress for the account for international donations it is:

Caja Ahorros Pensiones De Barcelona
Av De Prat De La Riba, 13
08915 Badalona

 

[aruschima]

Hi all,

I have received the following pm from somebody who speaks spanish and has been in contact.
(Since i do not speak Spanish , I cannot contact them my self.)

The first pilot study was done with ONLY 12 patients, and now they wanted to increase the sample of patients to make it statistically significant and move on pathology to find out what XMRV is doing in the immune system of these patients where they already found diferent immune abnormalities: CD57 low in NK cells, CD5 bright high in CD8 cells, etc...If the study is accomplished they will publish it yes, probably in CROI next year or somewhere else...I asked them to include paypal, but they told me that the Irsi Caixa foundation does not approve paypal for security reasons.

If anybody has any more questions, they can contact Clara Valverde, or as Eric said.

 

[eric_s]

Clara Valverde speaks English, so it's no problem to contact her. Just please remember she is only human too (and with ME/CFS), so check this thread http://forums.aboutmecfs.org/showth...siCaixa)-Stalled-Questions-amp-Answers-Thread first and post your questions and answers there, if she agrees, so the same questions don't get asked over and over again.

Btw, if anyone is wondering how IrsiCaixa is pronounced, it's more or less like "Eersee Caeesha". Caixa is from "La Caixa" (the name of the bank that founded the foundation that founded IrsiCaixa). It's Catalan (caja in Spanish) and is the way they call savings banks.

 

[eric_s]

Hi all

I was a bit disappointed that we didn't hear anything new from IrsiCaixa's researchers at the CROI. But from what i've heard now, i don't think we have to worry. CROI is a conference about retroviruses and opportunistic infections, so it was not the right place to present work regarding a biomarker for ME/CFS. This is not IrsiCaixa's fault.

So i guess we have to have some more patience, unfortunately. As far as i'm concerned, i still think they are doing good work and will donate to them again, when i can. But of course we should donate to other places as well, they are only one of many good possibilities.