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Comments on Lombardi, et al in Science

Discussion in 'XMRV Research and Replication Studies' started by subtr4ct, May 13, 2010.

  1. oerganix

    oerganix Senior Member

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    Unfortunately, there is no forum rule against trolling is there?
    Of course, no one can "prove" anything about a troll...that is why they can go about trolling and get away with it.

    Ervish has mischaracterized the products in question as "snake oil" when in fact the study in the press release involved probiotics and parents of autistic children reported a 30% improvement in various symptoms over 3 weeks. VIPdx's only involvement is that they offer a test of some of the "Ig this and Ig that" that were improved during the study.

    None of this has anything to do with this thread. If Ervish wants to discuss homeopathics or their use in the treatment of autism, she should go the homeopatic treatments thread. I personally don't see how homeopathics could work for anything, but the health system of UK pays for such treatments and the Queen of England uses them, so to smear those who want to try them and those who sell them, and an affiliated lab that offers the tests used in their study, in a thread about the WPI paper in Science is nothing more than trolling. Just my opinion. To try to smear Mikovits for speaking at an autism conference when she has found XMRV in 35% of samples from autistic patients is just more trolling. Just my opinion.

    ETA: sorry, I misread the name. I should have said Impish, not Ervish. My apologies for getting it wrong...brain fog.
  2. starryeyes

    starryeyes Senior Member

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    Oh good oerganix. Thank you for clarifying that. In my feverish state I was beginning to get brainwashed but you've set me straight again. :hug:
  3. Gerwyn

    Gerwyn Guest

    I think having looked at the evidence that the apparent inconsistency in cytokine signatures is caused by different diagnostic criterria.

    There is no reason why Fukuda and Oxford would produce patients with abnormal cytokines because they exclude patients with any "signs" of neuroimmune endocrine abnormalities based on abnormal laboratory findings and patient history of self reported symptoms.Therefore holding a trial to look at cytokine levels in patients labelled as having CSF according to those selection criteria is in my view fraudulent
  4. Gerwyn

    Gerwyn Guest

    Given the level of infiltration we now face perhaps we need an objective definition of Trolling based on behaviour and not motive which is far to subjective and difficult to enforce.People who perpetrate the foulest of deeds can adopt a reasonable polite manner when it suits them to do so.Indeed they may even adopt a parental attitude of concern and astonishment when accused of any wrongdoing and claim that they have been misunderstood.Does that remind you of anyone in particular?
  5. Hope123

    Hope123 Senior Member

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    I agree with Kurt.

    No need to be rude to Impish for his different opinion. Sometimes, I see people pile on top of others who disagree and even though I feel like writing an opposing post sometimes, I step back and ask myself, is this really the best use of my energy or should I use it instead to write people or do things outside the forum which might be able to impact CFS research positively in some little way? "Freeze, step away slowly from the ego.":D

    As someone who has contributed to the WPI and has encouraged people to donate to the WPI, public comments about the link between autism and XMRV without good evidence to back it by Dr. Mikovits do not lend credibility to the WPI nor do potential linkages with controversial companies. I am as passionate about solving CFS and getting my life back as anyone but as a scientist, I also try to step back and look at the situation objectively as challenging as it is.
  6. natasa778

    natasa778 Senior Member

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    The best way to test if someone is a troll is to completely ignore their post.

    If he or she is a troll they will

    a) quickly and quietly retrieve back into their neurodiverse shithole

    or

    b) they will try posting on another, unrelated thread, again using several of the following words: “quack”, “snakeoil”, “autism”, “genetic”, “hereditary”. If probed/provoked further they will invariably use at least one of the following, in combination with “autism” or “quack": “no-true-increase-in-incidence”,“anti-vaxx”, “widening-of-diagnostic-criteria”, “playboy-bunny”, “science-has-spoken” “correlation-does-not-equal-causation” and similar (full list can be supplied on request). They cannot help but reveal themselves, as those mantras are reverse-integrated into their DNA and WILL get expressed sooner or later.
  7. natasa778

    natasa778 Senior Member

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    See above. It works, I promise ;)
  8. Adam

    Adam *****

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    Reverse Integrated Mantras

    We have a vacancy.

    Thought you might be interested?

    Head of Pest Control

    No experience/qualifications necessary.
    Applicant must have wits about them.
    Patience of a Saint and sense of humour required.
    Salary (in kind) negotiable (in the range of high level of kudos to hero worship)

    :Retro wink:
  9. Dolphin

    Dolphin Senior Member

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    I don't think the Fukuda really excludes people with any "signs" of neuroimmune endocrine abnormalities. One can find things with it. One should be careful not to believe rubbish from Peter White and co - Peter White also objected to the mention of IBS drugs and neuropathic pain drugs in the NICE guidelines for "CFS/ME" claiming these symptoms were not part of "CFS/ME" (see link in my sig). The CBT School crowd been known to claim that the illness is under F48.0 (mental health section of ICD-10), etc.
  10. Dolphin

    Dolphin Senior Member

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    Stone and Sharpe (who sent in letters)

    I and two others from the ME community had our rapid responses published in BMJ USA which was circulated to 100,000 physicians:

    Nowadays, I know papers to reference so I probably wouldn't write a response like that.

    Unfortunately with Science, they say e-letters won't be considered for consideration to the print journal.
  11. Gerwyn

    Gerwyn Guest

    If you read the original Feduka paper it is clear that it does all possible medical causes of of fatigue are exluded.it specifically uses the word signs to mean objective and subjective exclusion based on clinical tests and symptom reporting.Most FUKUDA presentations do not even include PEM which is not mandatory. You cant exclude all medical causes for fatigue and then run a study checking for cytokine abnormalities when you already know that the patients do not have said abnormalities
  12. Impish

    Impish Senior Member

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    Thanks Hope123. If effect that is all I was trying to say. I have an MBA and a basic tool we use is a SWOT analysis. The idea is that you look at your strengths, weaknesses, opportunities and threats and then figure out a way forward.

    The only weakness I see in the response to the responses is saying that they are trying to not raise hopes. If you look at that statement objectively I don't think it is true. They have done that. If the "other" side is going to come back after WPI and CFS again this is what they are going to target as it is clearly not true. This source of weakness is being made even weaker by presenting un-reviewed results about XMRV and autism.

    If as a community the goal is to get as much money as possible to fund research as well as get as many research labs involved to validate WPI's work as well as look for a cure we need to stay credible and focused. Linking ourselves with companies selling herbal cures is not the way to gain credibility. It seems like a mistake.

    I am very disappointed with the various people calling me a troll "ERVish", etc. If you go and actually look at my posts on ERV's blog you will actually see that I am arguing with her using logic. My goal with this was to actually point out the flaws in certain aspects of what she was doing. If you follow a couple of threads you will notice that by using facts I actually got her to admit that the side publishing the papers not finding XMRV were also acting like "asshats". In my experience the way to win when arguing with people like ERV, or these researchers is to stay ethical, honest and transparent.

    I am interested in XMRV because my sister has had CFS since 1985. She has gone through fighting with insurance companies, being forced into CBT and exercise, etc.

    WPI and the associated researchers are human. They make mistakes. From a strategic perspective I think they are making one with BioRay. Again, if someone on this forum is in contact with them I think it would be a good idea to express concern.

    If you are looking to expand the community of supporters I would suggest not attacking someone for having a different opinion than yours.
  13. Robin

    Robin Guest

    She doesn't. Why bother arguing with her? I never understood why people engage with her -- she's of no significant importance, lacks empathy, and seems to enjoy the drama.

    I'm very sorry to hear about your sister. You should contact the WPI and VIPdx. Seriously, they are open to discussion and if you're concerned about their reputation you should let them know. You can contact them through their site info and they have a presence on facebook.

    To understand the responses to your post you probably need some context in the community. Recently a load of skeptic-types joined this board in response to the Sarah Myhill hearing. I consider myself a skeptic and spend time reading blogs and learning. The behavior of the some of the skeptics was aggressive, accusatory, and snarky to the patients here; I was very disturbed and outraged. A skeptic gets his panties in bunches over homeopathy and stuff like colliadal silver. What they don't realize is that people with ME/CFS face far bigger problems than unproven health advice: people here have written about homelessness, going hungry, impoverishment, abandonment, verbal abuse, not to mention the unrelenting symptoms of pain, exhaustion, and cognitive problems. They often experience horrible treatment at the hands of physicians and health care workers and turn to natural practitioners who offer hope and kindness.

    So, your post pushed a few buttons. Understandable. ;)
  14. Adam

    Adam *****

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    I am very sorry to hear about your sister.

    If you are interested in helping 'our community' to help ourselves, as you appear to suggest, could I make a couple of suggestions?

    1. Get to know people on here by posting in non-controversial threads before launching into wild allegations/criticisms of the WPI.

    2. Choose another username

    ERV has been discussed at length on here. A lot of members, including myself, refrain from giving her oxygen/ boosting her google rating.

    BTW. I am making an exception in replying to you only because you have now told us about your sister. I do not normally address anyone directly who I have misgivings about. If of course, you had posted first telling us about your sister's illness and then gone on to make your allegations/criticisms of the WPI, you would have received a less unfriendly response. But I doubt you would have many PR members slapping you on the back for disrespecting the WPI.

    You could tell your sister that someone on PR who has been ill since 1996, and who has become progressively more disabled (housebound for the last 10 years) is very hopeful that the wonderful Judy M and Co at the WPI are close to nailing the cause(s) of CFS/ME.
  15. oerganix

    oerganix Senior Member

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    Thanks Tom, those are excellent responses and I hope at least some of the 100,000 docs read them and took them to heart.
  16. Adam

    Adam *****

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    Thanks from me as well. You are one of our stalwarts. I wonder where we would be now if it wasn't for the likes of Tom and others like him?
  17. kurt

    kurt Senior Member

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    USA.Earth
    Impish - I agree with Adam here, you are using a troll type name. If you would like to 'reconsider' just PM me, and I can get your user name changed to whatever you like (within reason).

    Clearly you are a forum member with some minority views and I think we need those views here, but without the extra emotional conflicts that can be caused by giving people the wrong impression about your motives, and that name does give people the wrong idea.
  18. oerganix

    oerganix Senior Member

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    Dr Judy Mikovits, "a race horse in a world of plowhorses" - Annette Whittemore

    Impish you said: "I am very disappointed with the various people calling me a troll "ERVish", etc. If you go and actually look at my posts on ERV's blog you will actually see that I am arguing with her using logic. My goal with this was to actually point out the flaws in certain aspects of what she was doing. If you follow a couple of threads you will notice that by using facts I actually got her to admit that the side publishing the papers not finding XMRV were also acting like "asshats". In my experience the way to win when arguing with people like ERV, or these researchers is to stay ethical, honest and transparent. "

    There is nothing that is not ethical, not honest or not transparent about WPI or VIPdx or Dr Mikovits, ERVs foulmouthed adolescent insults notwithstanding. The same cannot be said of he European researchers.

    Your misleading allegations about WPI, VIPdx and Dr Mikovits were stated in the same language as that of ERVs hateful blog, so pardon me if I mistook you for her or a for a promoter of her hate campaign against Dr Mikovits and her associates. (ERV has also called the story of Andrea Whittemore's illness a "sob story" and has called Annette Whittemore a "housewife", although she is the CEO of WPI and a college graduate, a former teacher if I recall. She has testified before Congress re CFS research at least as early as 2005. What has ERV done for anyone lately, or ever? I doubt you'd appreciate anyone calling your sister's experience a "sob story". No one here is going to do that.)

    You say you want respect for WPI from mainstream scientists. Well, they already have it. They ARE mainstream scientists and saying they aren't, or that they don't have respect from mainstream scientists only adds to the misinformation stream, what Ruscetti, another mainstream scientist called the "whisper campaign" against WPI. That Dr Mikovits cares about autism is to her credit. The assertion that she shouldn't address their health issues until there is some "published paper" supporting the possibility of XMRV or other viruses in vaccines is just plain absurd. If Dr Mikovits, or any other researcher of value, waited until someone else published on the subject we'd just have more of the status quo.

    Please see Hillary Johnson's blog here for a more balanced view of Annette Whittemore, Dr Mikovits, Dr Peterson and others who participated in the London conference one year ago: http://www.oslersweb.com/blog.htm?post=623914

    "American speakers outnumbered Europeans at this years conference. John Chia talked about enteroviruses and antivirals, Garth Nicholson about chronic infections and the complexities of studying them. In some part because patients on several continents have so much hope invested in the Whittemore Peterson Institute in Reno, Nevada, and in part because the clinical and scientific presentations from this group seemed so high-powered, the triumvirate from WPI seemed to make the biggest splash.

    Annette Whittemore was invited by the Simpsons to give the keynote speech. Daniel Peterson, a rugged fighter whose clinical expertise is probably unparalleled, gave a wide-ranging presentation about the clinical entity. Judy Mikovits is the WPI's chief scientist whose CV includes a twenty-year career in molecular biology at the National Institutes of Health, years during which she investigated mechanisms by which retroviruses dysregulate cytokines in the immune response, followed by years during which she worked on the development of drugs for HIV and HIV-related malignancies.

    Whittemore compared her to a "race horse in a world of plowhorses," adding, "The rest of us just pretend to keep up with her." - Hillary Johnson, writing in her blog, Oslersweb.com

    People here didn't disagree with your opinion. They disagreed with the misinformation you posted. You repeated it when you linked WPI with BioRay. They are not linked, so why repeat that misinformation and even if they were, so what? Again: VIPdx supplied testing to a study of autistic children using a probiotic product, said study done by BioRay. Parents reported a 30% improvement in their children. VIPdx test showed improvement in IgA and IgM in only 3 weeks. Certainly as worthy of a press release as McClure's statement that she was 1000% sure there is no XMRV in UK CFS patients, but I don't see the WPI bashers jumping on that.

    You inferred that BioRay was trying to sell a product with 18% alcohol to children without mentioning that the dose is in drops and that alcohol is often the medium for homeopathics. Over the counter meds such as Nyquil also contain alcohol. You inferred nuttiness in the use of coloidal silver, but many other applications of coloidal silver have been shown to kill bacteria, which is what the VIPdx test is designed to find and the BioRay product is claimed to treat, without the use of antibiotic drugs.

    Like others here, I don't visit ERVs blog anymore, so won't be reading your comments there. She puts XMRV in her title just to get google to come up with her blog, which is not informative in any way. I am only responding to the comments you made when you first posted in this thread. Those comments were of an entirely different tone from your latest posts, and IMO, they are an improvement.

    As for your advice to other forum users to tell WPI or Dr Judy that you are concerned about her association with "controversial" companies, issues or treatments, why not do that yourself? WPI, Annette Whittemore, Dr Mikovits...they all have published their email addresses and there are numerous examples here on the forum of people emailing them and getting personal responses. Dr Mikovits' email address is listed in the Hillary Johnson article I linked above. I really hope you'll read it. It might put your concerns to rest regarding "the mainstream". WPI and Dr Judy are highly regarded all over the world, with the exception of those who would like to "prove" that CFS/ME are/is a mental illness.

    It's no accident that "Discovery" magazine included WPIs research on XMRV in the top 10 scientific discoveries of 2009.
  19. flybro

    flybro Senior Member

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    Thanks for this Tom

    the 'rapid response team', is this team still in operation?
  20. ixchelkali

    ixchelkali Senior Member

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    I finally got to watch the tape of the meeting last night, and I think Wanda's comment has been misinterpreted. They were talking about whether they needed to add extra meetings this year and/or next because of the XMRV developments. I think that when she said that right now it's XMRV but in 6 months in could be ABCD, she meant that in the future there might be other issues that would be of pressing, urgent importance. It didn't sound to me as though she was dismissing the importance of XMRV. Certainly her other comments during the meeting didn't sound like that.

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