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Spanish XMRV researchers to report Dec 9 on immune dysfunction

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by eric_s, Dec 7, 2010.

  1. eric_s

    eric_s Senior Member

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    Hi

    I've found this, don't see it anywhere else on the forum yet, so i'm posting it.
    Seems interesting to me. Things are moving. Let's keep it up.



    http://www.prohealth.com/library/showarticle.cfm?libid=15773

    Spanish XMRV researchers to report Dec 9 on immune dysfunction theyve found in all CFS/ME patients[emphasis added]
    December 6, 2010


    Following is a news release posted Dec 6 via Co-Cure by Clara Valverde on behalf of the Spanish CFS League Liga SFC. (Expect initial reports/recordings to be in Spanish/Catalan.)
    ______

    This Thursday, December 9, we are organizing a big event here, in Barcelona, in which the Spanish XMRV researchers will explain their findings of XMRV in the Spanish CFS/ME population.

    They will explain their findings regarding the XMRV, and more importantly, they will explain the common immune dysfunction they have found in all CFS/ME patients: immune deficiency due to the CD8 cells (for comparison's sake: HIV is an disease in which there is immune deficiency due to CD4 cells, and we are immune deficient because of the low CD8s).

    They will also explain to the patients who will be present (we have invited patient associations, primarily) how we should live until there is a treatment for XMRV.

    In the same event, we, the Liga SFC (http://www.ligasfc.org), will launch a new association of health professionals in support of ME (ASSSEM - will be at http://www.asssem.org, under construction) which will present a document we have written for patients to take to their family doctors and other doctors.

    ASSSEM's strategy is to bypass the CFS units the goverment has set up (which are "fibro-parkings": they only park you with useless medication and cognitive behavior therapy) and go directly to the experts:
    Immunologists (not many in Spain),
    Infectious disease specialists,
    Virologists,
    HIV doctors, etc.

    Here is the announcement of the Dec.9 event in Spanish: http://www.ligasfc.org/index.php?name=News&file=article&sid=376 [click the Translate button for a rough English version].

    The document we have put together goes beyond the Canadian Criteria because the findings of the past year or so go WAY beyond Carruthers et al. We hope bad health will not interfere too much with our translating the document to English in the next month or so.

    The Dec. 9 event will be taped (in Spanish and Catalan) and posted in our website, along with the Spanish version of the document http://www.ligasfc.org.

    We (the Liga SFC and ASSSEM) have made ourselves T-shirts that say: "CFS = Immune deficiency related to the CD8 cells".

    Last week, the members of the Liga SFC and leaders of the main Catalonian CFS/ME and FMS associations were given an award by the ACAF (the biggest CFS/ME, FMS and MCS association in Europe, with over 4000 members, based here, in Catalonia and which only takes Catalan members) for all our activism, in the ACAF's 10 anniversary event.

    Greetings and good wishes from Barcelona, Spain,

    Clara Valverde
    Liga SFC
    ASSSEM
  2. Sasha

    Sasha Fine, thank you

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    Very interesting, Eric, thanks for posting - good to see something like this happening in Europe.

    I particularly like this: "They will also explain to the patients who will be present (we have invited patient associations, primarily) how we should live until there is a treatment for XMRV." I think that's what we're all asking ourselves.

    I see they're claiming "CFS = Immune deficiency related to the CD8 cells". Does this fit with the views of other researchers? Does XMRV cause CD8 cell problems, do we know?
  3. busybee

    busybee Senior Member

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    Thank you for this eric_s, looking forward to hearing more.
  4. Cloud

    Cloud Guest

    I was first diagnosed with CFS 16 years ago based on labs showing an up-regulated TH2, CD4/CD8 imbalance. This particular immune dysfunction has been known as characteristic of CFS for many years....it just hasn't been accepted as diagnostic bio-markers by the powers that be. Perfect timing for this study....they are more likely to listen now.
  5. eric_s

    eric_s Senior Member

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    Yes, i like this too. I've been asking myself that question every now and then, how to live. That we should try to keep ourselves in as good as possible physical shape until we can get a treatment. So for me that means as much sleep as possible, not more physical activity than is good for me and no drugs (i mean the prescribed ones, the other ones too, of course). No smoking and i also hardly ever drink and try to avoid junk food.

    Also probably we will have to decide how early we want to jump on the train (if it comes), i guess the treatments will change over time, as there is more knowledge and experience and maybe new drugs. Probably some people can't wait to start and will want to participate in trials and others will wait in order to avoid side effects of early stage treatments. I think it's a personal choice, depends on a lot of personal cirumstances.

    I have no idea about CD8 cells. But i guess after this event there will be reactions by other scientists that we can read. It sounds very interesting.
  6. xrayspex

    xrayspex Senior Member

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    this sounds good!
  7. Sasha

    Sasha Fine, thank you

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    I think that's the key dilemma - strive for early treatment or wait. I wonder how soon any helpful info about treatments would become apparent during trials - whether we'd be waiting six months, a year, two years to have to see how things were panning out before we dared dive in (assuming we could afford to wait).

    I've been thinking how weird this waiting period is. If you suspect you have HIV, you go to a clinic, get some blood drawn and have an anxious few weeks waiting for the results, hoping for them to be negative. If you suspect, at this moment, that you have XMRV (like we almost all do, I imagine), we've already waited over a year for a robust diagnostic test to become available - it still isn't - and then we also have to wait for a demo of XMRV = CFS, then we have to get tested ourselves, then we have to wait for treatments to come online. Waiting, waiting, waiting; and all so stressful.
  8. free at last

    free at last Senior Member

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    This seems big, i hope its as big as it seems, wonder who the researchers are ? they say all with ME/CFS have this dysfunction, does that mean all tested postive for XMRV that both had ME diagnosis and this immune dysfunction i wonder. Why hasnt anyone else picked up this particular problem before. I thought these cells had been looked at before ? Also wonder if they are suggesting that XMRV is causing the low cd8 count. It seems like they are suggesting so. If they are, correction this isnt big its MASSIVE. roll on the 9th
  9. Jemal

    Jemal Senior Member

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    It's good that things are moving. I am not expecting earth shattering news from this event, though. We'll see...
  10. George

    George waitin' fer rabbits

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    HIV was linked to AIDS or gay immune deficiency in 1983 the first trials weren't started until 1987 and they lost nearly as many as they saved. It was 1989 before a few well tolerated drugs went to trials and even then success rates we not great because they were starting to figure out that HIV was becoming drug resistaint. It was 1993 before a pretty well tolerated drug program was in place and available for the masses. Since then the have refined it and refined it more so that people live more or less normal lives. But there are still side effects, sky high costs, and problems created by the virus itself. So it's not as pretty a picture as many think.

    I think you are right about staying in the best shape possible. It will probably help with dealing with IRIS and side effects during early trials. I don't think there will be any quick fixes or magic bullets (at least in my future,grins), I don't think we will be able to go "back" but, I do think we will get treatments that will bring up our function and over time with careful eating, exercising I think we will get a lot better.

    I'm really hoping the Spanish are going to be the first to come out and official say that XMRV is "IT". That would start the ball rolling nicely for next year! here's hoping!!!!!
  11. eric_s

    eric_s Senior Member

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    If XMRV is it, then i really hope things will go much faster than with HIV. And i think we have good reasons to assume they will. Because we are a larger number and from all parts of society. And a lot of healthy people have it. They don't want to get sick and they don't want their family members to become sick. And governments don't want it to spread.
    Ok, this does not kill people, at least not quickly, so there might be less sense of urgency in people that are not afflicted in any way, but nevertheless...

    And then i'm always thinking the same thing. We are probably a couple of millions. Everyone should be able to give 100 Dollars or Euros a year. With that budget that we have available if we really get up from our ;):D:angel:es and unite and coordinate ourselves in some way, i can't believe we can't get a good treatment in relatively short time. I mean how many WPIs can you run with 100m Dollars a year? I don't know, but i think a couple of them for sure. Or don't you think? Seriously now, does anybody know the budget of such an institute? What do they need per year? What does it take to start it?
  12. Sasha

    Sasha Fine, thank you

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    I think it was started up with a couple of million $$.

    I'm also optimistic about funding. It has been frustrating that so little money for research has come from PWC, even taking into account how many of us are broke; there are still loads able to work, recovered, or supported by spouses who could give but I believe that they don't because they mostly aren't aware of the CFS community. I think most don't get diagnosed and of those who do, they just get poor info from their doctor and don't realise that there are research groups to fund.

    But XMRV would be different. You'd get a positive blood test and you'd have a clear identity; and you'd know that research must be happening so you'd have a look and find it easily. And the vast majority of XMRV+ people are still healthy and working; they can afford to give.

    And I agree that HIV has given us a head start; I hope we'll see effective treatments much faster.
  13. jackson

    jackson

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    CD8

    Unless they are defining a specific subgroup with altered CD8 T cell numbers then it would be inappropriate to say M.E. has diagnostically speaking higher or lower CD8 T cells. They could also be refering to CD8 T cell function and not numbers.

    There is a subgroup of M.E. patients known as HIV negative AIDS / Idiopathic CD4 lymphopenia who's CD4 count brings them into AIDS ranges and that obviously doesn't fit into the high CD4/CD8 Ratio category discussed above.
  14. Cloud

    Cloud Guest

    I looked at some old immune labwork and it lists the % and # of CD8+CD11b+. Both are bottomed out low. This is a quote from that lab result: "The percentage and number of CD8+CD11b+ are decreased in active CFIDS". That lab is 10 years old and doesn't say a lot, but the doc used that, the low NK cell count and function, the activated EBV, and clinical presentation, to diagnose CFS.
  15. upnorth

    upnorth

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    Interesting finding, I can't wait to see (read) more about this. Just because I'm bored I looked at my old lab for a flow cytometry done in 2005 on lymphcytes and it seems I fit the pattern. The three subsets I was low on were the three CD8 categories.

    CD8CD11B% (normal 23-91) I was 20
    CD8HLADR% (normal 10-45) I was 4
    CD8CD38% (normal 39-75) I was 32
  16. urbantravels

    urbantravels disjecta membra

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    Is there a paper somewhere in the Library that discusses CD8 cells?

    I have a T cell panel that was done in January, but of course it doesn't give a separate number for CD8 cells. It *appears* that I have normal CD3 and possibly low CD8, but I don't know how to derive CD8 from the numbers I have.

    Component -- Your result -- Standard range -- Units
    WBC COUNT -- 5100 -- (nothing listed) -- /CUMM
    LYMPHOCYTES % -- 28 -- 16-47 -- %
    LYMPHOCYTES COUNT, FLOW CYTOMETRY -- 1428 -- 1053-3179 -- /CUMM
    CD3/100 CELLS -- 76 -- 56-85 -- %
    CD3 COUNT -- 1085 -- 669 - 2286 -- /CUMM
    CD3+CD4+/100 CELLS -- 64 -- 28-59 -- %
    CD3+CD4+ -- 913 -- 428-1401 -- /CUMM
    CD3+CD8+/100 CELLS -- 12 -- 10-35 -- %
    CD3+CD8+ -- 171 -- 176-608 -- /CUMM
    HELPER/SUPPRESSOR T CELL RATIO -- 5.33 >=0.9

    So the only one where I'm out of the "standard range" is the CD3+CD8+ count, and that just a *little* low ... but I have no idea how to solve for CD8 out of what's given here.
  17. Hope123

    Hope123 Senior Member

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    I am part of the latter group --e.g. low CD4 and CD8 -- so I try to follow the data on this. I was told by an ME/CFS expert that 20% of ME/CFS folks have low CD4 but no comment on the CD8. We don't know full details until the study comes out but I think NK cell dysfunction will be a better marker based on past reading. There have been multiple papers looking at CD4, CD8 counts and CD4/CD8 ratios in the past and low CD4, CD8 counts are seen but so are high and normal counts in ME/CFS subjects. These were papers done by such people as Klimas, Natelson, and more recently, Jason.

    Also as mentioned above, it depends on the type of CD8 cells also. I'm running on what little memory I have here but CD4 and CD8 both have CD3 surface markers so when they go through the scanner, they get separated out based on that first. The stuff with CD3+CD38+, CD3+CDXX+, etc. are subsets of CD3.
  18. August59

    August59 Daughters High School Graduation

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    Do we have anyone attending or access to webcast, tweets and/or notes?
  19. urbantravels

    urbantravels disjecta membra

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    That's what I'd like to know!
  20. eric_s

    eric_s Senior Member

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    I read a spanish CFS forum about 2 hours ago, because i wanted to see if they already have news from that event.
    There was nothing, but if i understood correctly, they will record it.

    Actually now i'm only about 3 hours away from where they met. I haven't thought about it before, but i could have went, if i had changed my plans a bit. What a shame... But ok, i was quite busy the last couple of days.

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