Canada joins in XMRV ME/CFS research. Could we become a significant player?

[leelaplay]

As I was wandering through and posting recent research, this synthesis of thoughts emerged. Not sure if this is the right section, if not, mods, please feel free to move.

Thought I would share my hopes with you:

(sorry - the formatting didn't transfer over. I'll do waht I can, but haven't got much energy left. It might be easier to view it here http://www.facebook.com/notes/xmrv-...ould-we-become-a-significant-pla/433892711796 )
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The idea that Canada may be ready to join in XMRV ME/CFS research to a significant level is pure inference, speculation and hope on my part.



I first noticed that one of the 3-part package that PNAS published with the FDA/NIH/Harvard paper included a commentary from French researchers and one Canadian, Andrew L Mason from the University of Alberta, and I experienced some patriotic hope that Canada would be entering the research story more fully. This hope is also selfish - I'm hoping for a study I can join that will hopefully fast-track my return to health.



In the article, this group states that it is appropriate now to:

1. determine the frequency of MLV infection in patients with CFS.

2. determine the human to human transmission potential

3. start antiretroviral trials

4. determine if XMRV causes ME/CFS

Mouse retroviruses and chronic fatigue syndrome:

Does X (or P) mark the spot?

Valerie Courgnauda, Jean-Luc Battinia, Marc Sitbona,1, and Andrew L. Masonb,1

aInstitut de Gntique Molculaire de Montpellier, Centre National de la Recherche Scientifique, Unit Mixte de Recherche 5535, Universite Montpellier 1 and 2, F-34293 Montpellier Cedex 5, France; and bDepartment of Medicine, University of Alberta, Edmonton, AB, Canada T6G 2E1



At this juncture, it would seem reasonable to conduct extensive case-control studies in North America, as suggested by Lo et al (6), using coded control samples from subjects with inflammatory disease to determine the frequency of MLV infection in patients with CFS.



The potential transmission of MLV-related sequences from human to human should also be epidemiologically evaluated.



As we currently lack postulates to prove a causal association with a prevalent agent and a chronic disease with genetic predisposition, it would also be appropriate to conduct interventional studies. Indeed, the Helicobacter pylori hypothesis of peptic ulcer disease was only accepted after Barry Marshall showed that bacterial eradication with antibiotics cured peptic ulcer disease (21). Studies to gain proof of principle have been performed with antivirals in other chronic, idiopathic diseases linked to retroviral infection, such as primary biliary cirrhosis associated with mouse mammary tumor virus, another possible murine zoonosis (22). Trials using a combination of reverse transcriptase inhibitors led to significant improvements in clinical, histological, and biochemical outcomes in these patients, albeit with some evidence of viral resistance to therapy (23). Such studies are now feasible for CFS, because reverse-transcriptase inhibitors, such as tenofovir and emtracitabine, and the integrase inhibitor raltegravir can inhibit XMRV (24).



The caveats for conducting clinical trials in patients with CFS and MLV infection are that the potential benefits of treatment should outweigh the risks; also, studies should be conducted as randomized controlled trials with meaningful and feasible endpoints using robust therapies. At this juncture, studies to establish proof of principle are justified to determine



whether safe antiviral regimens can impact on CFS



and to determine whether xenotropic or polytropic MLV is causally associatedwith this debilitating disease.



http://www.pnas.org/content/early/2010/08/16/1007944107.full.pdf+html

And then I noticed that for Dr Stein's new study, trying to determine if XMRV is the cause of ME/CFS, she will be joined by

Dr. Lorne Tyrrell, founding director of the Li Ka Shing Institute of Virology in Edmonton, and Dr. Michael Houghton of the University of Alberta, who holds the Canada Excellence Research Chair in Virology for a preliminary study next month.,..



http://www.calgarysun.com/news/alberta/2010/08/26/15154261.html

I looked into M Houghton, and found that he is an eminent scientist. He discovered the hepatitus C virus. http://www.cerc.gc.ca/chairholders-titulaires/houghton-eng.shtml And the Canada Excellence Research Chair position brings $10 million a year to his program. http://www.expressnews.ualberta.ca/...wardedfourCanadaExcellenceResearchChairs.aspx



This partnership also intrigued me as I remembered lightly researching the Li Ka Shing Institute of Virology in the spring, when word of this study first came out, and hoping that it would engage in ME/CFS research. So I found the article below to refresh my memory.

The Power of Partnership: Li Ka Shing Foundation gift and Government of Alberta funding to establish virology institute at University of Alberta



April 23, 2010 Steven Heipel, director of public affairs



EdmontonThe University of Alberta will take a big step forward in its efforts to treat and cure virus-based diseases thanks to a $28-million gift from the Li Ka Shing (Canada) Foundation and $52.5 million in new related funding from the Government of Alberta. The donationthe largest cash gift in the universitys historywill help establish the Li Ka Shing Institute of Virology and add the U of A to a global health science research network facilitated by the Li Ka Shing Foundation (LKSF).



This generous gift, along with the funding from the Government of Alberta, represents a truly transformative moment in the U of As history, said Indira Samarasekera, president and vice-chancellor of the university. Our researchers have been at the forefront of virology research for decades, including Dr. Lorne Tyrrell and his work developing a treatment for hepatitis B. The Li Ka Shing Institute of Virology will provide a state-of-the-art home to some of the worlds very best researchers in virus-based diseases and will help place the university in its rightful place among top centres of such work.



Along with developing new drugs and vaccines, the institute will seek to attract significant private sector collaboration with multinational pharmaceutical and life sciences companies.



http://www.ualberta.ca/SIGNATURE/LiKaShingCentre.html

http://www.lksf.org/eng/media/press/20100423.shtml

On looking a bit deeper though, A L Mason, of the PNAS article

is supported by the Alberta Heritage Foundation for Medical Research, Broad Foundation, Canadian Liver Foundation, and Canadian Institute of Health Research.

So it seems that the University of Alberta has 2 different incursions into XMRV research



1. A L Mason through the Dept of Medicine and the above funders urging looking at trialling antiretrovirals, and finding causation, transmission and prevalence. I hope that this PNAS article indicates that they are ready to undertake some of these studies themselves.



2. LTyrrell & M Houghton in the Li Ka Shing Institute of Virology at U of A, along with E Stein, seeing if XMRV is causal. And, given the people involved in this study, the words for a preliminary study next month in the news article, the funding that the Chair of Excellence & the Li Ka Shing Institute bring, and the intentions of the U of A and the LKS Institute to be world leaders in 'virus-based diseases' - it seems quite hopeful that further studies into XMRV will start soon out and that U of A may ride the crest of this emerging new disease research field.







And then there is Paul Jolicouer, one of Canadas virologists, at the University of Montreal. I found information from 2001 that he was looking at MAIDS

Jolicur hopes his probing into retroviruses will give him insight into both HIV and another AIDS-like virus known as MAIDS. This is a mouse retrovirus that causes a mild immune deficiency and lymphoma -caused by an infection of the B-cells.



http://www.chairs-chaires.gc.ca/chairholders-titulaires/profile-eng.aspx?profileID=376

After that, all I can track is rumours; rumours that he did a study looking for XMRC in ME/CFS patients last winter that came up negative, and rumours that he was not discouraged and was proceeding with another study. However, when I found his faculty listing, there is no mention of this in his list of current studies.

Theme(s)

Studies on the pathogenesis of AIDS

Oncogenes involved in leukemia and breast cancer

1- Identification and characterization of new oncogenes: The murine leukemia viruses (MuLV) frequently induce leukemia in inoculated mice. Their provirus act as insertional mutagens and activate endogenous proto-oncogenes or inactivate tumor suppressor genes. We are using this mutagenic approach to identify and characterize novel oncogenes involved in T cell leukemia.

2- Role of NOTCH1 in mammary tumor development: We use Tg mice expressing an activated oncogene (Notch1) in the mammary gland and developing mammary tumors to study the role of the cancer stem cells in tumor growth.

3- AIDS: We study an AIDS-like disease in Tg mice expressing HIV genes. Our work aims at identifying the contribution of distinct immune cell populations to the different phenotypes observed in these Tg mice. Moreover, our studies aim at identifying the host signaling pathways required for the development of this syndrome.

http://www.biochimie.umontreal.ca/bottin411/Enseignants/jolicoeur_p.html

So I am hopeful that the rumours are true, and that with the global race to be the first in on XMRV & family research, P Jolicoeur will get funding to examine XMRV et al and ME/CFS.

 

[Rrrr]

go canada!!

 

[awol]

shrewsbury,

Where are you located? Do you know about the Calgary/Edmonton study that is recruiting?

 

[Gemini]

The idea that Canada may be ready to join in XMRV ME/CFS research to a significant level is pure inference, speculation and hope on my part.

shrewsbury,

very informative summary. thanks for posting.

wonder if Mason might be looking for ME/CFS patient
volunteers for future XMRV research studies?

Gemini

 

[leelaplay]

shrewsbury,

Where are you located? Do you know about the Calgary/Edmonton study that is recruiting?

Thanks awol, I know. I'm too far away. But if this all keeps up, I wonder how feasible moving would be.

 

[shannah]

Are you east or west shrewsbury? I emailed Jolicoeur a few weeks ago and he said he'd try to fit us in his next study - didn't say when that would be though.

 

[Daffodil]

i thought jolicoeur didnt find anything in his 1st study. is he doing another one?

 

[glenp]

All Canadians, make sure you are joined up at http://www.mefmaction.net/ The link to sign on to volunteer for research purposes does not seem to be working. You can contact your local provincial director, not to be confused with other cfs/fm support groups. I contacted the webmaster and said that the link wasnt working, perhaps others contacting will also help? It is important that you put May 12 in the title when you email them. They get so much spam. They are sick like us, but volunteer and do the best they can, so now only open email that has May 12 in the title.

glen

Vancouverites hang on a bit, we got to be next!!

I think Canadas might be good. Jollicoeur made NO big deal of his negative study, THAT IS DEFINITELY IN OUR FAVOR. He wants to find it.

 

[leelaplay]

Gemini, thanks.

Good question re: Mason. Maybe if one of us contacted him, asked, and reported back? I'm such an old worry-wart - I always worry about flooding some poor researcher with all our emails.

 

[leelaplay]

What great news for you Shannah! Unfortunately (in this sense), I'm west.

 

[leelaplay]

Great advice re contacting mefmaction.net glenp.

While some things are slow with them, they still managed to be part of getting the Canadian Consensus Document funded, written, and published, with help from Helath Canada; funded Dr Stein and the Calgary 2006 conference with Klimas and S Stephens amongst others, and now are hosting the IACFSME conference next fall ......

It would be great if west were next.

I wonder if this is another slim possibility - St Paul's hospital in Vancouver is one of the world leaders in HIV/AIDS. If money shows up, they might be able transition that expertise into XMRV et al / ME/CFS

Dr. Julio Montaner and his team at the B.C. Centre for Excellence in HIV/AIDS at St. Pauls Hospital.

Fifteen years ago, the Centre, along with partners around the world, developed todays gold standard for HIV medication: highly active anti-retroviral therapy (HAART).

 

[shannah]

All Canadians, make sure you are joined up at http://www.mefmaction.net/ The link to sign on to volunteer for research purposes does not seem to be working. You can contact your local provincial director, not to be confused with other cfs/fm support groups. I contacted the webmaster and said that the link wasnt working, perhaps others contacting will also help? It is important that you put May 12 in the title when you email them. They get so much spam. They are sick like us, but volunteer and do the best they can, so now only open email that has May 12 in the title.

glen

RESEARCH STUDY, VOLUNTEERS NEEDED - INCLUDING THE SEVERELY ILL

The only link I see Glen is about half way down the home page and the link takes you to the Alberta Study info. Is there another for other possible studies?

 

[pamb]

Oh, heck. Bad planning. Such a tale of bad planning...

My husband became ill in 2001 while we lived in Calgary, by 2003 he was being seen by several top nuerologists and neurosurgeons at the U of C, all of us wondering if the severe headache and orthostatic intolerance was CSF leak related. It was not and by summer 2004 - (when was the CCC written?) they had pretty much all given up. And of course every Dr. I asked said, no, couldn't be chronic fatigue - they mostly had it mixed up with fibro and needing to have certain pain points. nope, not the case. end of conversation.

Before John became ill we had planned to move to France to enjoy riding our bicycles (it's what we did, both of us raced internationally at one time and for a cyclist France is nirvana - they actually like cyclists here) before we were too old, and I could work as well from here as Alberta. So, Sept 2004 we upped stakes, lock, stock and barrel and moved to France, figuring the health care system was good and either John would find out what was wrong or he'd be dead soon enough (you all know the feeling) and at least we would have had a bit of our dream before what appeared to be his imminent premature death.

You can guess the rest. It's six years now, no help here of course, despite 6 hospitals and many more neurologists and finally the kiss of death, somataform. Now my home town, Edmonton, is a hotbed for CFS research. Go figure. And no way we can afford to move back as the real estate did not really crash there as it has elsewhere and has about doubled in price since we left in 2004. Ah, well. God willing we can get treatment in France in another year or so. At least a few of the hotshots are from a French University, but working in Edmonton, where the oil money still is.

hmmmm. I may keep pondering this one. If we took about a week, with lots of small legs to the journey and a day of rest between each, I could get him there. Like a 10 yr CFS patient has the money left for a trip like that. Oh, well. C'est la vie. I do love living in France. The French people are lovely and they like Canadians.

Thank you again to WPI for blowing this whole thing open so we can even dream of next year being different

 

[glenp]

Kati kindly started a BC group here. I always have trouble finding it lol!!! Make sure you join up if you are in BC. I think it would be a good idea if others in other provinces put their own groups on here too, that way when you hear of specific studies or happenings in your area you can let each other know without having to post on the board and researchers getting swamped

If you go to the National ME/FM Action network in Canada, I can?t seem to find the link now, where you could click to sign up for research. The link wasn't working, i did email and phone them. All I see there now is the sign up for research in Alberta. Perhaps they will post other resarches there as they come up. I have previously signed up there for research.

Its sad, I have heard there are many trying to get into the one in Alberta, so many left behind?

glen

 

[leelaplay]

Yes glen, but they plan to use the data from this preliminary study to apply for a larger grant by Sept 15 2010! so hopefully many will be included then.

Shannah found it on the mefmaction.net site

We have an ambitious time line. The study will go before the U of Alberta ethics committee on July 23. If approved we want to have blood samples collected and analyzed by August 30th so that we are in a position to use whatever information we find to apply for a bigger grant to do more detailed research. The grant application deadline is September 15th, 2010.

 

[glenp]

Yes glen, but they plan to use the data from this preliminary study to apply for a larger grant by Sept 15 2010! so hopefully many will be included then.

Shannah found it on the mefmaction.net site

Ok I see. So they do something kind of quick first? Makes moire sense

I wondered why I saw it posted here a couple months back, then nothing and now again. So I wonder if they did a few back when it was posted?
Sorry my cognition is not good

glen

 

[boomer]

Here is a letter I received in January this year from the Minister of Health who says in the third paragraph the Canadian government would welcome applications for funding for research for xmrv and cfs. (Please note that this is not my real name on the letter.)

 

[sensing progress]

I looked into M Houghton, and found that he is an eminent scientist. He discovered the hepatitus C virus. http://www.cerc.gc.ca/chairholders-t...hton-eng.shtml And the Canada Excellence Research Chair position brings $10 million a year to his program. http://www.expressnews.ualberta.ca/e...rchChairs.aspx

Shrewsbury,

Dr. Alter, co-author of the recent PNAS study, was also involved in the discovery of the Hep C virus. Perhaps they know each other and Dr. Alter has gotten Houghton interested in the XMRV/MLV and CFS connection?

Anyway, thanks for sharing all this. It does look very promising with top-notch researchers.

 

[leelaplay]

hi sp -

here's what I found in a brief bio

Dr. Michael Houghton is an internationally recognized expert in hepatitis virology. Along with fellow researchers at world-leading blood diagnostics company Chiron (now part of the multinational pharmaceutical company Novartis) and the United States Centers for Disease Control and Prevention, he was the first to successfully identify and clone the hepatitis C virus (HCV). The breakthrough allowed him to develop new blood-screening tests able to detect the virus. These techniques are now used worldwide to keep patients safe by ensuring that blood supplies are HCV-free. His work also led to the identification of important new drug targets for hepatitis C, which are being pursued by many groups around the world.

Alter is NIH - not sure if he was ever at CDC, but it is a small world & one would think that they know of if not know one another.

Boomer - great letter! Hope all likely applicants know that "the Canadian government would welcome applications for funding for research for xmrv and cfs."

Glen - your cognition is working on this topic. I don't understand either. News of the study was leaked in the spring I think, and we swamped them with applications. The info about the study had to be withdrawn everywhere. And we haven't heard anything til now.

I guess they weren't ready to go at that point. They sure are trying to cram a lot into a short time-frame now. I wish them great success. We need research here. Now.

 

[Chris]

Hi--there are signs of life, but I would not put much faith in that letter from the Minister, I'm afraid, though attitudes may be changing. Alberta has become a hot spot, though--Eleanor Stein in Calgary, and a whole bunch in Edmonton. Nancy Klimas's presentation in the IiME this year gives a lot of credit to a "genius" (her word) there, and this latest research project shows the two are cooperating. There may be something brewing at the University of British Columbia, Glen reports, and Jolicoeur is doing another study at the U de Montreal. But I don't think I want to move to Edmonton from Victoria, and currently plan to get the serology test from VIX, and if positive wait for more news from Klimas and others on paths to follow, and then try to persuade an Infectious Diseases doc to prescribe. But maybe that larger Alberta study will ask for blood from outside that province, and that would be great! Let's hope...

Like others I could not get through that "register" button on the website--the whole site seems pretty dead to me. Best, Chris