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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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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. girlinthesnow

    girlinthesnow Senior Member

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    Yup, that's what I saw too from 3 rows from the front, Judy looked at one person, sitting in the front row, while making all her critical points.

    She methodically and in the nicest possible way chopped through all the shocked silence post Huber talk to restore hope and happiness to everyone else in the audience.

    And then we gave her a standing ovation,. FAB!
  2. VillageLife

    VillageLife Senior Member

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    And she's the COOLEST Ninja that ever was!!:cool:
  3. garcia

    garcia Aristocrat Extraordinaire

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    Yes I agree with girlinthesnow. I was sitting two seats back from Judy just before she got up to give her presentation. She directed all her points (it's not contamination because X,Y,Z) towards one person in the front row - namely Huber. You might not be able to pick that up from the DVD.

    From what it says on Chris's excellent patient advocate blog Huber had had a heated exchange with Judy the day before in the brain-storming session. Huber had apparently promised not to reveal her premature negative results at the conference and had left the brain-storming session early. But afterwards Huber changed her mind and presented the results anyway.

    It must have been like a sucker-punch to Judy, but she took it on the chin like a champ.

    I think both her and Annette had some kind of virus as Annette had left to go back to the hotel, and Judy looked ill.

    At the end of her talk Judy mentioned the postcards she had received from the patient community for her birthday and said it was the best thing ever. She was clearly overcome with emotion as she left the stage. Many of us responded by giving her a standing ovation, and the longest applause of the night by far.
  4. garcia

    garcia Aristocrat Extraordinaire

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    I have to say I haven't been a huge fan of the enterovirus work, since my ME/CFS was EBV-triggered, so it always left me a bit cold.

    However having just watched Dr Chia at the conference, I was blown away. The guy oozes humanity. I had the worst nights sleep ever before the conf and was pretty much brain-dead in the morning. I then saw Chia's talk and it was like a shot of caffeine in the arm. I could listen to him speak all day.

    I still think XMRV (or some other retrovirus) is the big causal element in this disease, but I have nothing but respect for Dr Chia and the work he does. You guys in the US are lucky to have him.
  5. natasa778

    natasa778 Senior Member

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    Same here, and I believe that his enterovirus (or herpesviruses for that matter) and xmrv theories are mutually inclusive, actually if you remember Nora Chapman work is all about EVs mutating into forms that can establish permanency, if/when they are not cleared by the immune system in the acute/initial stage of illness.

    In most people EVs are cleared after 5-7 days of acute illness, but in some cases that does not happen, the virus THEN loses parts of its genetic code that enables it to hide for good (well hopefully not for good :worried:) and cause long-term effects by messing up cellular metabolism in more ways than one. It also expresses proteins and replicates in this mutated form…

    This is exactly what she has been observing in mice cardiac muscle tissue, she did mention in conversation that it could well be happening in other parts of the body but sadly this is underresearched area.

    Now XMRV or similar could well be the factors that stop the immune system from clearing Evs in acute stages, therefore the two theories are quite compatible imho!!


    Btw she also said EVs are masters of recombination… the part of their genetic code that they lose on purpose, they can later easily borrow from other viruses (or viral fragments from contaminated vaccines :confused:)
  6. Gemini

    Gemini Senior Member

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    gracenote,

    thank you for posting this excellent conference review!

    beautifully written perspective by someone with great insight into ME/CFS.

    Gemini
  7. Jenny

    Jenny Senior Member

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    Did Dr Chia say anything about whether he still thinks people with auto-immune tendencies shouldn't try oxymatrine?

    Jenny
  8. fred

    fred The game is afoot

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    Cheney's medication protocol

    From the 'question and answer' session at the end of the day: Dr Cheney's 'medication protocol'.

    Klonopin to modulate sleep and block redox
    Doxepin Elixir to modulate sleep and block redox
    Magnesium by injection or sublingually, not orally
    B12 (hydroxycobalamin)
    Artesunate for redox modulation
    Colovita high grade organic olive oil (couple of tablespoons)

    Cheney said Omega-3 is vulnerable to oxidisation and so not good for people with ME. Omega-6 is better but you need both 3 and 6. He observed the effect of various sources of combined Omega-3 and 6 on patients via an echo terrain map (which shows positive and negative redox) and found the Colovita oilve oil to be the most efficacious.
  9. This interested me from the blog posted above.

    :eek:

    Well that about knocks it on the head doesn't it? 80.8% of this group who 'believe' (have no evidence - ME/CFS has no biomarker) they all share a common symptom cascade and share the same label ME/CFS- very highly share the same severe life long retroviral infection.

    Statistically speaking, that is a very high number indeed to detect XMRV at. No different to 80% of patients who think they may have something called 'MS' which was classified as hysteria needing CBT/GE/Pacing by the government. Then years later 80% of these folk turn out to have demyelination of the spinal cord/brain changes on MRI - which is later confirmed as linked to causing MS symptoms. (If we knew what causes MS outright, we could cure it, same as Cancer). And it doesn't stop at 80%, other methods (e.g. Antibody) weren't used. The figure could well be higher than 80%, just like the SCIENCE paper that found in 98% of people (using 4 methods to detect XMRV). What if Cheney had used 4 methods? What about when a finalised test comes out? Figures will surely rise.

    Low and behold, just using Culture method alone, 80% of Cheney's patients with 'dysfunctional illness beliefs' (What the CDC thinks ME/CFS is) are correct. No wonder Kilmas is so excited about XMRV, all her work with NKC cells and immunity in CFS was worth it. Both Kimas and Mikovits are friendly geniuses. :tongue:
  10. VillageLife

    VillageLife Senior Member

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    Yep all we need now is that positive paper which is due out and everything will change, will be very interesting to hear the techniques used.
  11. fred

    fred The game is afoot

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    That Huber presentation

    Huber used a Taqman qRT-PCR for XMRV integrase developed from Ila Singh and a cell line from the WPI. I note that one of Judy's slides refered to Ila Singh's use of PCR and proteins and wonder if this means that Huber used the former and not the latter (PCR 101 required, here).

    [EDIT: Judy quoted patient 1118 who tested negative by qPCR but positive in protein expressions. I'm assuming that Huber used the former from Ila Singh but did not look in protein expressions.]

    In her build up charts, Huber went to great lengths to defend the accuracy of her test method and so we knew what was she was going to say before she said it.

    Her reference to contamination was very unclear to me and perhaps others may have a more accurate recollection of what she actually said. I thought she said that 100% of her samples had been found to be contaminated which is why they were, in essence, negative. Others believe she was implying that the WPI's 97% figure must have been due to contamination.

    Nancy Klimas was asked about the findings afterwards and said that looking for one in a couple of 100k cells was not refined enough and that you have to look in a million, at least.

    My personal opinion is that Huber is wedded to her theory that HERV-K18 + EBV causes ME. She has a five year grant from the NIH to study whether the level of HERV-K18 correlates with ME severity and does not want it to be derailed by XMRV.

    She has used a psychologist, Renee Taylor, to recruit people with ME to this study and made no mention of the criteria which are being used. She said that a physician has to validate the diagnosis but that, in practice, three physicians validate it, although she didn't name any.

    She has recruited 53 patients with ME who were exposed to EBV as adolescents but whose symptoms did not resolve and 47 patients with ME whose symptoms were triggered by something else. She has not recruited people with EBV who do not have ME which seems to me to be a glaring statistical omission.

    Interestingly, when discussing HERV-K18 being a risk factor for MS, she quoted a population study of ~1,000 samples. She said that such large scale studies are not possible for ME because it is not possible to recruit that many ME patients.
  12. fred

    fred The game is afoot

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    Cheney also made the point that his patients are testing positive within family groups which would imply that XMRV can be transmitted easily between family members.
  13. Bob

    Bob

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    Wow... this seems very significant.
  14. flex

    flex *****

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    No natasa I don't believe it was your eyesight. I made exactly the same observation and Dr J literally shot Huber down into a shrinking wreck in her seat, her backside was almost on the floor as she tried to hide. Huber was then reported to approach people outside asking whether she was badly received. Which she was!!!

    Like has been said in the above blog, there are a lot of docs panicking that they are going to be out of a job soon as their theories and protocols go down the pan. Huber looked like she was chewing a wasp throughout the whole thing and had the audacity to claim the Science paper was due to contamination. Of course she keeps missing the fact that "contamination" is only happening in 3-4% of healthy controls but up to 98% in people with ME. She also referred to the "extremely sensitive" PCR methods she used in her testing, which incidentally was so sensitive it couldn't even find one XMRV positive even though she admits it exists in the general population. That was her logic for concluding that the WPI findings are due to contamination.

    She acted like some kind of Fairy Godmother issuing a "warning" about XMRV, when during her whole lecture, and believe me it was a lecture, she kept referring to the illness as chronic fatigue or fatigue. This was after admitting that she works with a psychologist and she is a believer in the "virus come virus go" theory. So that just leaves people who had a virus like mono, its gone, but they are still "tired".

    And to think I actually paid to hear that crap. Judy Got a standing Ovation, Huber should have got a slow hand clap!!

    Now, lastly, I stuck around at the end when nearly everyone was gone and saw Huber at the back of the hall being interviewed and videoed in full flight. I say being interviewed but actually it looked like she was just motor mouthing ten to the dozen. I would really like to know who it was filming her, and was this some kind of sound bite propaganda being prepared or was it part of the conference DVD in which case she was probably given just enough rope to hang herself. It is ironic that she carried out a study and had a chance to disprove the WPI paper but the best she could come up with was a verbal attack using the already disproved contamination nonsense. I am not even sure if in her study using "extremely sensitive" PCR testing she proved that she could find XMRV in a blinded spiked sample before she went on not to find any in "chronic fatigue" patients or healthy controls after testing over 200 samples.

    I believe her paper was also refused publication, perhaps someone could clarify that? Perhaps all of the above is an explanation as to why she appeared to be chewing a wasp throughout the whole episode. During Dr Judys presentation she was looking straight down at the floor and when Judy addressed all her nonsense looking straight at her she couldn't bare to make eye contact and slumped down into her chair for the duration of the conference.

    She was not an impressive woman and regardless of the outcome of XMRV she is immensely threatened by any advancement in the field of ME, that was plain for anyone to see!!
  15. bullybeef

    bullybeef Senior Member

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    Does anyone know if Huber's study has been accepted yet, or are her results just anecdotal?
  16. jackie

    jackie Senior Member

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    note to jenny: i will ask dr. chia for you (re: oxymatrine and auto-immune diseases/tendencies) when i see him again next week, hope that will help you...he's very good about answering all q's - in particular if he's asked in person - he will spend a good deal of time getting his point across)

    garcia... "oozing humanity" is such a perfect way to descibe him! he really IS this way...this is his whole life and it baffles me (and I know it does him...but he doesn't seem to let it derail him from his focus) why his work isn't investigated more closely and taken more seriously...i truly believe it holds MANY of the answers for us! (one nih study years ago that didn't find "something" and all the work in this area is tainted?...dont understand...but he isn't giving up)
    imo he could use a bigger following to rally round him and kick interest up a notch or two!

    do any of you know what he said (specifically) regarding XMRV?

    (Interesting side note, especially for those of you who have a high degree of pain....he explained that with vzv there can be a high degree of pain even when the "classic" shingles dont even appear (they may be in the muscle, along nerve pathways inside...and this answered a lot of MY questions re pain)

    strangely foggy this am - sorry if im not being more articulate...so glad to hear that he presented so well! and thanks again to all of you who are bringing this home to those of us in the U.S.!jackie:D

    BTW, in case any of you that are interested havent seen it...his "EV MED Research" site is available on a thread here (Kim put it up some time back). not sure how up to date it is...but it does have a lot of basic facts about viruses...and his theories (EV's, herpes and others)
  17. fred

    fred The game is afoot

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    I don't remember him mentioning XMRV at all but he did end his session by saying that ME is a curable illness which might imply that he does not believe it is caused by a retrovirus.
  18. jackie

    jackie Senior Member

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    what a mental image you've given me flex! "chewing a wasp"! (well, AND shrinking into her seat with her backside touching the floor wasn't bad either!)

    my first good laugh of the day, thanks! j


    Thanks for the info, Fred (like your avatar...been watching that very series on netflix for the past few months! I hear Bretts "Sherlock" voice in my sleep now! especially that explosive burst of a laugh he has... "HA!!!")
  19. fred

    fred The game is afoot

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    There has been talk of this for many years, long before XMRV, and nothing has transpired as yet.

    More worryingly, the Uni of East Anglia collaborates with AfME on the 'ME Observatory' which was granted 500k in 2006 by the Big Lottery Fund.

    http://www.uea.ac.uk/mac/comm/media/press/2009/apr/cfs

    http://meagenda.wordpress.com/category/me-observatory/
  20. fred

    fred The game is afoot

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    Which could mean that upregulated HERV-K18 is associated with activated EBV but not ME.

    She needs to monitor people with activated EBV but without ME to complete the picture.

    If HERV-K18 is upregulated in people with ME+EBV and EBV on its own but not in ME on its own, it would challenge her theory that this retrovirus is a marker for, or cause of, ME.

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