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5th Invest in ME/CFS Conference - Programme May 24 2010

Discussion in 'XMRV Research and Replication Studies' started by shrewsbury, May 23, 2010.

  1. kurt

    kurt Senior Member

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    Some ART therapy is known to help with Herpes infection, unless you are measuring viral levels and carefully tracking immune function during treatment there is no way to know what exactly is being helped by the antiretrovirals. We do know that antivirals in general often help CFS patients, as do some anticancer drugs, and sometimes antibiotics, so there could be many possible explanations.

    Not certain what that comment about putting antibodies means, do you mean giving ART causes XMRV antibodies to increase? That would be hard to explain any other way than die-off from an active infection, I agree. But which infection? Those antibodies are often very cross-reactive, including with HERVs as well as multiple MuLV type retroviruses and maybe others. Until that situation is reviewed by experts, who knows.
     
  2. My tests without Mikovits knowing: XMRV+, Low T-Cell, Deranged Natural Killer Cell, Inflammation and I have a neuro immune disease.

    Mikovits Claim: XMRV in 98% of CCC/ME & XMRV Infects T-Cells, Infects NKC cells, causes neuro immune disease.

    Additionally we know MULV class virus (XMRV is one) can impair mitochondrial function. I tested positive for that too.

    I'd say all bets are on for folk with CCC/ME.

    The chances of her 'guessing' I have XMRV, and me then testing positive for XMRV with my previous medical history which mirrors her claims, is about nil. Hence Kilmas (who has 4 professorships) is backing XMRV. Coffin said there's no contamination at WPI, and the Cleaveland Clinic and NCI also confirmed WPI's results which where then double checked by the CDC who re-confirmed no contamination after the SCIENCE paper.

    Mikovits has got it, for sure. The problem is a huge proportion of people with CFS who think they have a neuro immune disease, don't have one as they never had any tests. These people have been tricked by the CDC as much as people with neuro immune disease. Both sides were used and taken advantage of in a on-going game of 'hide the new human retrovirus'. (A bit like playing 'pin the tail on the donkey', and then hiding the tail in a cupboard for 25 years).

    Lets say I had diagnosed HIV not from testing but by saying 'I think you have HIV'. When a test comes out, loads of folk are left scratching their heads and some believe HIV can't exist as they aren't positive.

    That wouldn't mean HIV doesn't cause what it causes, just that there was never a diagnostic test.
    Additionally CFS doesn't mean anything but not knowing why people have a syndrome (collection of symptoms) of 'Chronic Fatigue' and was a word used to deny ME (Myalgic Encephalomyeltis) exists which causes brain inflammation - which Klimas can show happens in people who are told they have 'CFS' in America.

    Does XMRV cause CFS? No.

    XMRV causes neuro immune disease, in which people given the label ME or CFS often have - who have evidence of neuro immune disease.
    XMRV can never cause all cases of CFS, the criteria are too weak and there are approximately 9 different diagnostic criteria for CFS. The WPI did repeat the other day in a press release just this fact, that they never said XMRV causes CFS. (The media did). Infact,I believe they initially floated the idea of XAND. (X-associated neuro immune disease).
     
  3. kurt

    kurt Senior Member

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    I think this is the most interesting argument for XMRV being a passenger virus, showing up in the sickest CFS patients only, but not the entire field of patients. But your point is well taken, that is a problem for the contamination hypothesis, unless there is some other virus, HERV, or retrovirus present in the Canadian Consensus Def. patients exclusively that triggers false positives due to reagent contaminant interaction.

    This HAS happened before, a reagent contaminant that showed up in some studies and not others in a retrovirus hunt, and turned out the labs using one commercial reagent brand were getting false results due to a cell line contaminant (Rabbit cells I believe). That is documented somewhere in that long 'Rumor Viruses' article I have mentioned several times here (too much brain fog today to look that up though, that is slow reading).

    Reagent contamination comes from outside the lab, from commercial cell lines, and can be undiscovered until someone checks for that specifically. Apparently that happened to Huber.
     
  4. Cort

    Cort Phoenix Rising Founder

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    That's amazing - good for them :)
     
  5. Cort

    Cort Phoenix Rising Founder

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    I don't think I've met a more genuinely nice guy amongst all these researchers then Dr. Chia. He is a gem! He came to this illness because his son got sick. He's doing important work. I'm sure it's a little frustrating for him to have it be kind of overshadowed with all the excitement about XMRV. Glad to hear that he's helping you out. :)
     
  6. Cort

    Cort Phoenix Rising Founder

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    That is too bad - I hope she just has a cold. I met her for the first time really at the CFSAC meeting. She was a very dynamic lady, a real bundle of energy - I think after that she was going right to some other meeting. She's giving it her all. I'm sure she'll be okay - she just seemed like a very capable woman to me.
     
  7. Knackered

    Knackered Guest

    That's based on everyone with "CFS" having the same condition, they do not, you either have CCC/CCD or you don't. We need to get out of the mindset in thinking everyone with "CFS" is the same. It's not people who are more ill with "CFS" who are testing positive, it's people with CCD/CCC.

    Also: What DysautonomiaXMRV said.
     
  8. Cort

    Cort Phoenix Rising Founder

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    Thanks V99 - very interesting particular in light of the Lerner study that just came out on EBV. That would be big big news.
     
  9. Otis

    Otis SeƱor Mumbler

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    A friend who is a patient of Dr. Chia's (living 80-90% after help from him despite dealing with breast cancer along the way!) said he confided he did feel a bit frustrated with the XMRV excitement, but it's obvious he continues research and helping patients.
     
  10. Cort

    Cort Phoenix Rising Founder

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    I think there's no stopping Dr. Chia; he did his work in the shadows for many years without anyone paying any attention really - he's committed! :victory:
     
  11. Kati

    Kati Patient in training

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    I must say it is very brave of Dr Huber to come up in front of a patient crowd and announce that 0 samples were positive for XMRV. I would love to hear what the mood was like at that time and the tone of the presentation.

    I would also love to know how many people, approximately were in attendance, and perhaps the percentage of patients vs scientists.

    Thanks, Kati
     
  12. usedtobeperkytina

    usedtobeperkytina Senior Member

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    well, they didn't have to look at my cells to know I have no cleavage.

    Tina
     
  13. ixchelkali

    ixchelkali Senior Member

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    :D:D:D:D

    Gives a whole new meaning to "used to be perky."
     
  14. Kati

    Kati Patient in training

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    LOL @ TIna! Thanks for the good laugh!

    :tear::innocent1::D:eek::rolleyes:
     
  15. jackie

    jackie Senior Member

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    Thanks cort! yep..he's helping all right! The thing about Dr. Chia that makes him so unique is that he TALKS to you...he really wants to make sure you understand (as MUCH as you can).

    He doesn't stand aside and throw a prescription your way now and then...he makes you feel that you are involved in the discovery process. Because to him this disease is simply a mystery that has yet to be solved...and he is like a dog with a bone. It WILL be solved! He speaks with great certainty that finding the "cause" is close. (now to a scientist, who knows what "close" really is!? I'm learning patience)

    Every new move forward, every clue that comes his way - he's so willing to share. He makes you feel that he's in the middle of this disease WITH you - if that makes sense. (I guess this attitude comes in part because of his son)

    He commiserates - genuinely - when things are going bad and he celebrates every little victory in your treatment. I've had him call me at home (him, not his staff), to go over test results and patiently go over them and what they might mean, again and again - until HE is assured that I understand.

    Most importantly he doesn't sugar coat the facts...ours is a very serious disease with potentially serious complications - but one that he believes can be sucessfully treated (one way or another), in many cases. I know it helps his research that he worked with hiv patients for quite a while before switching to me/cfs....his background is perfect for dealing with "us".

    And he values a patients input (he never discounts a symptom that someone describes), as he understands, unlike so many other docs - that WE know our bodies and what it's like to exist with the disease better than anyone else.

    If you've ever had that nagging doubt that you really ARE ill (for those in the early stages)...or whether me/cfs is a real disease (usually put there by dismissive doctors!)...one session with chia will put your mind at ease.

    I read that his portion of the "lecture" went very well - (I'm looking forward to watching the dvd with my family - we feel we owe him a lot.)

    j
     
  16. Kate_UK

    Kate_UK Senior Member

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    Here are some more of my notes. I'm not too sure of their accuracy, I don't want to be misquoting people, so if you see a mistake or misunderstanding on my part please point it out.

    Professor Jason talked about a revised Canadian Adult Definition. My notes say

    original - severity
    new - severity and frequency

    Level 2 - self report
    Level 1 - biological documentation

    Dr Chia talked about taking a detailed history. Enteroviruses can mimic other things e.g. allergies, chicken pox. He talked about Th1 and Th2, the balance between them determining outcome of intracellular infections. Under Th2 I have written atopic, steroids, two weeks before periods, pregnancy, vigorous exercise, vaccination, prior infections. Also a note about Th2 shifts and illness starting at puberty.

    Dr Cheney - diastolic dysfunction. Orthostatic intolerance is the clinical clue to diastolic dysfunction. He talked about a simulated climb of Everest (altitude induced hypoxia) having similar results on the heart as CFS - so tried giving CFS patients some oxygen - but it made them worse.
    Later he said he wasn't keen on ribose. Dr Myhill was in the audience, when ribose came up she said you need to have a digesting gut instead of a fermenting gut for it to work.
     
  17. Gerwyn

    Gerwyn Guest

    No Kurt the science study did not run any PCr without at least amplyfying the samples.All exogenous retroviruses ativate the expression of all Hervs as they are part of the intrinsic defence.Any viral infection will do the same. journals are actually judged on the quality of their peer review process.This is how they become dominant in the first place.There are many journals which merely concentrate on the replicitivity of the methodology to"speed up peer review"Jama,Plos one and the BMJ spring to mind.If hubers work does not satisfy their criteria then methodology must be an issue.She used PCR initially and could not find the virus.She then repeated the procedure with another technique and then could.She then concluded that the second run must have been due to contamination.If however her technique in the first place had been sensitive enough she would have picked up said "contamination" initially.Dr lerners study patently demonstrated that EBV caused Chronic disability as was already known before hand.What Hubers work actually showed is that if you use the right technique you will find XMRV if you do not you wont
     
  18. natasa778

    natasa778 Senior Member

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    by "we cannot put antibodies into people" (in reply to criticism re contamination) Judy probably referred to their new antibody test, due out very soon. they must have run it against their known positives....
     
  19. Knackered

    Knackered Guest

    I was told western blot's out in the summer, do you have any idea when?
     
  20. natasa778

    natasa778 Senior Member

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