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Dr. Teitlebaum and WPI

Discussion in 'Latest ME/CFS Research' started by ndrmda, Nov 27, 2009.

  1. ndrmda

    ndrmda Guest

    Well, Happy Thanksgiving to us.

    WPI has just recently acknowledged, using an editorial the NCF put out moons ago, that DeFritas' CAV does not equal XMRV. For a month and a half, the conjecture's been allowed to mushroom in cyberspace. We've read third-party reports that Dr. Mikovits intended to prove the exact opposite; we've read second-hand statements that NCF thinks XMRV is both important and irrelevant. Now, it appears Hillary Johnson was foolish to bring up DeFritas in her NYT editorial - but too late.

    This isn't really the "bad" news, though. Since NCF has been brought into the picture, perhaps its time to find out just what "they" officially think. Then we will know whether to throw our funds toward WPI, blue-green algae research, or the Fibro and Fatigue Clinics.

    Cort also reported that WPI stumbled onto XMRV via the RNase L defect by luck, and posted the revelation by GMA, a holistic medical practice in Santa Rosa, CA, that through their RNase L testing on 38 CFS patients, there is no connection between XMRV and RNase L: dismissed. This practice, comprised of two MDs, a DO, and three Naturopaths, claims not only to have proudly supplied samples to WPI, but to have welcomed Judy Mikovits to their April 2009 symposium of the greatest minds in neuro-immune disease, an operative known as the Sonoma Working Group. Indeed, from here, it appears some rather interesting minds are purportedly melding under the guidance of someone who has already taken a patient lashing for essentially dismissing XMRV as causative in Psychology Today.

    Yes, that is Dr. Teitlebaum of who says of the Sonoma Working Group, " We have also been offered what may be the largest CFS research grant [from whom is unstated] ever given, with our instructions being to explore the causes of CFS and to determine how to treat it effectively. I am honored to be the Chairman of the Protocols Committee for this study." Of course, he is already dispensing instructions to the naturopaths at the Fibro and Fatigue clinics.

    I would like to think, for my sanity and others, that I will awake very soon and realize I was writing this in a nightmare.

    Unless someone is really fabricating something here or gotten their reporting wrong, this suggests some of the "best minds" have time and money to play the game with whomever and let peer-reviewed Science take a back seat. What will WPI's "center of excellence" truly offer? The SHINE protocol of un-insured vitamins and hormones, thrown at patients like the kitchen sink? Will it be staffed with real doctors? Of course, there are readers here who believe WPI should be an alternative medical clinic. Others, however, will be left scratching their heads over whom to donate to, unless some answers come soon over just how that money will be spent.
     
  2. hvs

    hvs Senior Member

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    Welcome, ndrmda. Congratulations on your first post.

    I admit that I find it hard to follow what you're arguing. Could be my fault, not yours.

    If I understand your final paragraph, you suggest that the WPI will become another Fibro and Fatigue Center. You seem to offer evidence for this in earlier paragraphs, but I can't seem to track it.

    Um, I guess I would suggest that since Dr. Peterson is an officer at the WPI it is highly, highly unlikely that it will start issuing vitamins left and right. Peterson, as you probably know, is probably the world expert on this disease along with a few others and really, really does not recommend supplements to his patients. Peterson has no time whatsoever for the Teitelbaums. The WPI is indeed "staffed with real doctors."

    I would also suggest that we have a pretty clear picture of how donations to the WPI are spent. We have good evidence that it is spent on some pretty darn rigorous science. We also know that the Cleveland Clinic has partnered with the WPI and that they don't "do" alternative medicine.

    Does this help? Is there something in your argument that I'm not addressing?
     
  3. anne

    anne Guest

    All the people at the WPI have time and money for is solving and treating CFS. They are not playing games with anyone.

    I guess I'm having trouble tracking what you're saying as well. Mikovits gave a paper at a nearby CFS symposium of which Teitlebaum is chair of the "protocols" committee? She's a virologist--perhaps they invited her to talk about viruses and CFIDS. I think we can have a pretty good idea what the WPI centers will do given what they and Dr. Peterson have done--the WPI is looking at viruses and retroviruses (as evidenced by their hiring of M.). Dr. Peterson looks at lab results and suggests medications based on those labs.

    Teitelbaum himself seems to report everything in a way that is designed to glorify himself and sell supplements, so I don't really take his reporting on an issue, nor do I think Mikovits is going to align herself with someone who so readily and misleadingly dismisses her own discovery and likens XMRV to "just another virus." I doubt she has a lot of patience for his pseudoscience. The CFS community is small--all these people are going to cross paths. It doesn't bother me if they let this practice submit samples--the samples all met certain criteria, it doesn't really matter who did the submitting.

    We know our money is going to research at the WPI, real, rigorous, peer-reviewed research, because that's what they've done before. They made every effort to make this as credible as possible and are staking their reputations and the entire institution on this. Going to a conference to learn from other experts is hardly "playing games." We know she's testing antiretroviral drugs on XMRV, not supplements.
     
  4. George

    George Guest

    Connecting the dots

    HI
    Welcome and congrats on your first post. I think I've followed the dots that you laid out. I can see where you got to where your conclusions took you but I think the path you took leaves out wide roads in other directions.

    I agree that all of the speculation, rumor and opinion is pretty much par for the course. The science will eventually "will out" and the answers found. The reality is that we are all just grumbling and shouting while we try to wait patiently for what is really important, the treatments that will move us out of this illness. None of it really means anything. Wait for the science.

    The National CFIDS Foundation is not exactly the definitive authority on CFS/ME. Only the science will give us what we need to really get ahead. The WPI is not associated with the NCF nor are they (WPI) affiliated with the Gordon Medical Associates. Neither group has any influence on what goes on at the WPI. The people right now who are trying to steer the currents of research are the National Cancer Institute and to a lesser degree The National Institute of Health (These are the people with the money and the clout). Watch them for "real" information.

    (While Dr. T certainly builds himself up I can't find a factual reference to this, maybe you could post were you found it???)
    In regards to the Gordon Medical Associates yeah, I read their PDF file too


    (1*Dr. Mikovits attends most of the forums on CFS/ME and listens to what is going on however, she is not a member of the SWG)

    (2*It is a group of doctors, clinicians and researchers who have actually acknowledge that CFS/ME is real. We may not always agree with them but it's the group that has at least stayed in the game.)


    (3*In others words she asked for their patient files and as the Goddess of CFS/ME research they got down on their hands and knees and say " Oh great goddess how may we assist you, may we ride on your coat tails to understanding and fame".)

    (4*In order to prove XMRV is causative the WPI will have to use blood and tissue samples from the general population of diagnosed CFS/ME persons not just outbreak patients, nothing too sinister in all that. The samples have to come from somewhere and they will be coming from other groups around the country as well. One of the reasons I suspect the WPI was asking for DR.'s NPI numbers in their recent data collections.)

    Dr. Teitlebaum is a doctor in good standing with AMA. He has done nothing criminal or negligent. He believes absolutely and whole heartedly in what he sells. But he is not driving the bus on anything important. The entire meeting took place on Sept. 29-30, before the news broke regarding the XMRV. As for the funding. Write and ask Dr. Teitlebaum from who, to who, and what roll he plays. See what comes back. People write things to inspire confidence, gain importance, back established set ups. The words are often Not Lies but are not what they are represented to be either. When the NCI actually gives Dr. Teitlebaum a grant for something I might get worried. Till then it's just hype.

    I have to say that while you have followed a trail of information you may be at a dead end. You can draw suggestions from any set of data. Doesn't mean that it's the correct one. Follow some of the other trails, the WPI, the NCI, the NIH, Dr. Coffin, and many others who are the "major players".

    Human nature is to jump on the wagon of any group that's going to the "right" place. To play up our importance and knowledge to those around us. When egos and money is at stake it gets harder for the average human to say "I was wrong or hey let's do this a different way".

    Anyway I hope this leaves you a cheerier road to explore.
     
  5. Andrew

    Andrew Senior Member

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    Just a thought. I think an organization can support WPI XMRV research without giving them money. For example, Coffin is supporting them by doing a replication. NCI supported them by running tests for them. And, of course, I want WPI to have more money. I'm only suggesting that we not shoot everyone who does not hand over cash.
     
  6. dannybex

    dannybex Senior Member

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    Thanks George for your balanced assessment. Teitlebaum is a good man, and has helped some patients, despite the ridiculous title of his book, his flawed study and the silly (SHINE) acronym for his protocol. He's not Dr. Evil.

    And again, he does not make a cent on the supplements he has his name on.

    Finally, just to clarify, that meeting was on Sept. 29-30, 2008.
     
  7. gracenote

    gracenote All shall be well . . .

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    privately funded

    One of the results of this "research grant" was an unpublished study titled "Laboratory Data Collection in a Sample of Chronically Ill Patients" for the purpose of a "preliminary data collection project." This is where the RNase-L information came from. As a participant in this study, I have a copy of the results.

    "The purpose of this preliminary data collection effort was to generate hypotheses for future study in the laboratory testing and treatment of persistently-ill but incompletely diagnosed patients."

    Extensive laboratory tests were performed.

    As far as I can tell, Teitelbaum is the only one of the group who has posted anything about the Sonoma Working Group. And as far as I can tell, he is a lesser player. He is also the most vocal.

    This grant is privately funded by someone who has been impacted by ME/CFS and wishes to remain anonymous.

    ----------
    They also met in April, 2009, according to Susan Friedl, Research Coordinator at GMA.
     
  8. calzy

    calzy Senior Member

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    off the subject..sorry

    anyone else taken by how intelligent and bright CFS'ers are? in spite of brain fog...ummmm?
     
  9. Andrew

    Andrew Senior Member

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    You should have seen us before brain fog.
     
  10. ndrmda

    ndrmda Guest

    WPI and Dr. T - follow-up

    I thank many of you for putting in some thought. Yes, my post was inflammatory, and no one more than I hopes it leads to dead ends, though by Gracenote, we're at least learning something.

    1) Gordon Medical Associates (GMA)

    Looking at their web site, they're not the mainstream science cream of the crop, basically an FFC copy - WPI's polar opposite. Yet they've been provided this extra opportunity here to insinuate themselves as side-by-side players with WPI. Beyond donating blood to WPI (many of us want to), this is by making a big deal of Mikovits attending one meeting (we hope, or I hope) and implying she's part of a larger effort of theirs. Then it's by publishing their own "study" on WPI's RNaseL panel:

    "Some patients have also asked about the test available for RNASE panels at VIP lab, which tests for the original immune defect that pointed to XMRV. We found this test does not have clinical value, nor does it seem to show whether a patient is likely to have XMRV. A recent study of 38 CFS patients at GMA, tested with the RNASE panel, found it was not helpful in directing treatment at this time. Dr. Mikovits study on CFS patients also found the RNASE panel did not indicate who would have XMRV. We do not recommend that you spend money on this test."

    Wow - "no clinical value." That alone DeMerlier, Suhadolnik, and Lombardi/WPI especially would all love us to read. Is WPI unable to run a dependable RNase-L test? Whoa - of course they can; there's just supposedly no correlation, and even Mikovits allegedly agrees. Is that non-correlation in healthy XMRV controls (logically), or even in the sickest? And if RNase-L is useless for the sickest, wouldn't we have known this years ago, and why would WPI have even gone down that avenue? (Why also would NCF funded Knox/Carrigan to study the precondition for RNase-L malfunction of Stat 1 deficiency, which they allege DeMerlier already knew?) GMA also makes it sound like WPI already knows they're not going to find XMRV in everyone with "CFS," at least as GMA defines it.

    This heretofore obscure holistic private practice makes it sound like RNase-L is irrelevant, and WPI has already reached the conclusions it's seeking. It's word may not pass for "science" for many of you; we're not getting the whole story straight from the horse's mouth, but they're getting the extra mouse clicks here nevertheless. I really wonder if Dr. Mikovits would agree if WPI was "more lucky than right," according to Cort, in pursuing RNase-L. If she agrees with Cort, well, she looks a bit like a mass-media clown for continuing to play that angle.

    (So far as paying for RNase-L tests, I did two out of Immunosciences. I don't know what pathogen was the driver, or if the valve was stuck open sort of speak, but it was more evidence I was still pretty sick from something after two years. I'm not GMA's client, but I'm glad I spent the money.)

    2) Dr. Teitelbaum

    I recognize some here give him a lot more slack than I would. His degree of self-promotion, which some of you are admitting to, makes him the kind I'd want no link to whatsoever - certainly if I'm WPI. So I'm assured by many here that there is none. I don't know who or what they know, or whether they're making logical deductions of their own. (These deductions about even peer-published M.D.s don't always hold up; John Martin, case-in-point.) I can only hope their right. I guess we'll know for certain come August 2010.

    By the way, his statements about XMRV can be navigated to through this site:

    http://forums.aboutmecfs.org/showthread.php?p=14737

    Seeing as Rich VK's methylation theories were presented to Dr. Teitlebaum, who described them as "on the mark" without mentioning anything about a double-blind study, before or coming, I'd be interested in Richard's take on this Sonoma Group of new mystique. Unless, of course, he happens to be totally disconnected from the project, which Garth Nicolson, a WPI associate, is apparently not. Is that a mortal sin in itself? No - even Dr. Pall consults with Dr. T. Which makes one wonder why so many of us have wasted so much money on vitamins and remained sick, if this media superstar and his practices have such a fountain of knowledge to offer. At least Rich and Dr. Paul have original thoughts of their own without parroting everyone else. (And Dr. T is not making money on vitamins? Maybe not - at this point, he probably doesn't have to.)
     
  11. anne

    anne Guest

    I really wish you'd delete your post on the WPI Facebook page and apologize to Andrea. Andrea manages the site and she's very ill. The motives of her family and organization are completely transparent. Dr M's attendance at a conference is evidence of nothing but that she's being thorough. Dr. T sneered at the WPI's work. I don't care if they got their samples from Mickey Mouse, the samples all met a specific diagnostic criteria. There is nothing fishy about any of this, and to imply otherwise is offensive to people who have gone a great deal of work for the rest of us. Andrea's giving up a lot of herself to talk to people on that page. I really wish you'd apologize to her. She's a doll.
     
  12. gracenote

    gracenote All shall be well . . .

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    information that we all want to see

    ndrmda, I think you are trying to connect dots where no dots exist.

    GMA was asked to participate in a PRIVATELY funded gathering of "experts," both researchers and clinicians, in order to generate "preliminary data" that could be used to forward our knowledge of ME/CFS. It was a fact finding mission. This benefactor PAID out of their OWN POCKET to gather these experts together, and then PAID for numerous tests to be run on thirty-five patients to see if any valuable information could be generated.

    It sounds like you are criticizing this effort that was funded privately. It sounds like you are criticizing the medical clinic that this private funder chose to head up this effort. And it further sounds like you are criticizing them when they are offering some of the information they gathered as a result of this effort.
    They did not go looking for this opportunity. The response that Cort has published was originally sent to their patients in response to the numerous calls for testing of XMRV came in.
    How is dispensing information that we all want to see considered "making a big deal?" GMA is currently involved in a new study, collaborating with the WPI, involving testing all their patients for XMRV to add further to research efforts.
    They didn't "publish" their own study on WPIs RNaseL. GMA had already done this study. They simply put out the information so that those who are interested would benefit by what they had learned. This is information that we all want to see. And how is this "WPI's RNaseL?"
    An FFC copy? Are you speaking of Fibromyalgia and Fatigue Centers? If so, I can tell you that you absolutely don't know what you're talking about. There is NO connection. They have very different practices. The fact that Teitelbaum is involved with the FFC and also attended (and posted about) the Sonoma Working Group does not at all support your claim.

    In the spirit of full disclosure, I am currently, and have been for a very long time, a patient of GMA. I was part of the study you speak of. I am also part of the new study that is being done in collaboration with WPI on XMRV.

    I think you are putting out misinformation and I don't understand your purpose. I suggest you do a little more research before jumping to such unwarranted conclusions.
     
  13. anne

    anne Guest

    Gracenote, thanks for that post. I didn't know anything about that practice, but I would put great faith in anyone Drs M and P trusts enough to work with on this. It's very cool that you are one of the studied!
     
  14. Ampligen is synthetic RNA, a pre-cursor to having Ampligen is you have to have the RN-aseL defect, or at least you did as I have a letter from a doctor in my posession stating this.

    Andrea was/is on Ampligen wasn't she? So I am confused to how RN-aseL is now being classed as irrelevent to CFS. Didn't Dan Peterson name RN-aseL defect along with NKC dysfunction in his recent CFSAC speech?

    A search brings up this that may interest you guys:

    Source: Link

    Remember this was written before the XMRV discovery, yet look at the important points mentioned that we are told are XMRV specific.

    INTERFERON SYSTEM DYSREGULATIONS IN CHRONIC FATIGUE SYNDROME

    Interferons are key immune regulators that are induced following a viral infection

    Interferons will promote the production of a number of anti-viral enzymes including Ribonuclease L (RNase L), 2'-5' oligodenylate synthetase (2-5OAS), and the double-stranded RNA-dependent kinase, PKR.

    2-5 oligoadenylate synthetase recognizes double-stranded RNA of viral origin, and subsequently produces a messenger molecule, 2-5 oligoadenylate (2-5A). 2-5A will activate latent RNase L; activated RNase L then proceeds to cleave viral RNA.

    This process ultimately results in viral destruction and programmed death of the infected cells.

    Likewise, PKR is activated upon binding viral double-stranded RNA. Activated PKR will in turn initiate a number of cellular pathways, ultimately leading to programmed cell death of infected cells (through the translation factor eIF2alpha), and to the synthesis of a potent immune modulator, Nitric Oxide (a response mediated by the transcription factor NF-kappaB).

    In a properly functioning immune system, these pathways are tightly regulated to contain a viral infection. In some stress situations however, the cells may produce odd RNA/DNA fragments that will lead to an improper, non-regulated activation of the 2-5A/RNase L/PKR system.

    This odd RNA/DNA may result from the reactivation of endogenous retroviruses sequences; from the release of DNA/RNA fragments following cell damage; from the release of chemically modified RNA/DNA fragments due to toxic chemicals/heavy metals exposure.

    Improper activation of the 2-5A/RNase L/PKR pathway is associated with various cellular and immune dysfunctions

    Cleavage of RNase L by the inflammatory protease, elastase

    Upon excessive inflammatory response, inflammatory proteases such as elastase can cleave RNase L, producing a truncated form of the enzyme. This truncated enzyme is observed in a subset of CFS patients, and can be used as a marker to characterize the disease.

    It was shown that activated RNase L, bound to the 2-5A messenger, is less sensitive to cleavage; but in case of 2-5OASL dysfunction the correct 2-5A molecules are not produced, and cannot exert their protective function.

    RNase L cleavage in CFS therefore results from the combination of two events: production of elastase as part of an inflammatory response, and dysfunction of the 2-5OASL pathway.

    Increased, uncontrolled activity of RNase L results from the cleavage

    The truncated form of RNase L still present ribonuclease activity, but this activity is uncontrolled. Excessive RNA cleavage leads to the apoptosis of immune cells, and thereby to a general dysfunction of the immune system. Opportunistic infections (herpesviruses, mycoplasma, chlamydia...) will develop more easily in CFS patients, and contribute to the severity and persistence of the disease.

    RNase L fragments at the origin of channelopathies

    RNase L fragments have the ability to interfere with ion channels function, resulting in channelopathy, which, in turn, results in a host of symptoms such as unexplained sweats, transient hypoglycemia, reduction in pain sensitivity threshold, depression, visual problems, and hypersensitivity to toxic chemicals.
    Activation of PKR and excess production of NO

    PKR dysregulation leads to an increased production of Nitric Oxide. Nitric oxide (NO) is an important cellular messenger and its dysregulation has many detrimental effects in the immune system.

    When PKR and Nitric Oxide are in excess, Natural Killer and T-lymphocyte cells activities are decreased, which may favor the development of opportunistic infections.

    On the other hand, excess NO will contribute to the maintenance of a chronic inflammatory condition. Excess NO also favors the production of peroxynitrite, a very potent oxidative compound that causes significant oxidative damage, which is a hallmark of CFS.

    Interferon-induced proteins interfere with the thyroid hormone system

    Chronic activation of the interferon system may finally interfere with thyroid hormone function. Some members of the 2-5OAS family of proteins indeed share structural homologies with the thyroid receptor, and have the ability to repress or suppress its cellular effects. This will lead to thyroid hormone resistance, with effects similar to hypothyroidism (explaining the extreme fatigue), although patients present normal levels of thyroid hormone.

    Immune dysregulation is a hallmark of CFS

    The involvement of elastase in the pathogenesis of the disease indicates that CFS is to a large extent an inflammatory disorder. The underlying cause of inflammation, however, remains unclear. Among the factors that could contribute to the onset or maintenance of a chronic inflammatory condition, R.E.D. Laboratories scientists are particularly interested in the consequences of intestinal dysfunctions, as well as in the role of persistent viral infections (see Intestinal Dysfunction and Viral Infections pages).
     
  15. ramakentesh

    ramakentesh Senior Member

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    And there you have it, chronic inflammation results in the vascular abnormalities associated with orthostatic intolerance in many CFS patients through a variety of proven mechanisms.
     
  16. starryeyes

    starryeyes Senior Member

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    Thank you Cold Taste of Tears, I recall reading that information many years ago in the NCF and feeling like it accurately describes what is going on with CFS. It's cool it ties in now with XMRV. Reading it just now I felt that same recognition again. I can't say I understand all of it but I did once look up every word of it I didn't know in the dictionary and I tried to comprehend it.

    It's interesting that they state that chronic activation of the interferon system lead to problems with the thyroid resulting in hypothyroidism and yet our thyroid tests fine as they note. My thyroid tests fine yet I have all the symptoms of hypo- and sometimes hyper-thyroidism as most PWC I know do.

    That's cool. Maybe that means that they could tell ahead of time if we're a good candidate for Ampligen or not. My fingers are crossed that they can.
     
  17. Hi, thank you for the reply it's very interesting. I had no idea you'd seen Dr Judy, and hence I'm months behind you on the knowledge - even if I do have an OCD of viewing this website too many times a day. :cool:

    So basically, laymans terms - the WPI have other tests in the pipeline - to screen people with XMRV who have CFS? And maybe these will form part of their diagnostic screening later?

    A bit like having a test for cancer (e.g. XMRV), and then needing many others to determine what subset, what it's done to the body, and what to do next? (This is me guessing here).

    If so, that's pretty exciting isn't it! :) That we won't be left out in the cold with 'just' a positive XMRV test within the nexy year, but XMRV with NEW un-announced tests also.

    What we've always needed as patients. Maybe Christmas 2010 will bring this closer to reality? ;)

    XMRV looks like to be the first big step, but in no means the end soulution into getting treatment that is effective and tailormade to the patient I guess, as we're all unique.

    No wonder Annette Whittemore asked Obama for many more WPI's in the United States.

    Thanks for the update and reply, if only we had telepathic skills and could really know what goes on behind closed doors.
     
  18. Hi, nice to hear from you. Yes the thyroid is really worrying isn't it? We all walk around eating plastic in order not to be clinically obese, which only adds to our misery! I've got the problems you have too, and inflammation of the thyroid gland also for 'un-known' causes. Or maybe it's interferon/XMRV.

    It's worrying that with testing when we stick to 'conventional' thyroid testing like you mentioned we are told we are A1 perfect condition, yet dig a little deeper and things show up.

    The only thing I've not tested for relating to thyroid is Iodine deficiency.
    I ran out of IGF-1 in my 20's and had the levels of a really old dude apparenty. I think IGF-1 is linked to thyroid also. Insulin like growth factor......

    Thanks again for new thinking about Interferon.
     
  19. dannybex

    dannybex Senior Member

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    Andrea / NCF ...

    Cold Taste -- It's my recollection (which ain't so reliable) that Andrea was Ampligen years ago, helped her get to about 60%, but it eventually stopped working at some point.

    But checking the WPI page, it sounds like she's giving it another try...as of November 5th.

    Re thyroid: Besides iodine, have you had your ferritin levels checked? Sometimes hypothyroidism can be related to iron deficiency...


    TeeJKay: "I recall reading that information many years ago in the NCF and feeling like it accurately describes what is going on with CFS."

    Ironically, or maybe not, although they haven't issued a statement publicly, I've heard from a friend who's a member, that they were pretty dismissive of the XMRV findings...

    best,

    db.
     
  20. starryeyes

    starryeyes Senior Member

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    Cold -- we eat plastic? I used to.. do u mean margarine? lol I'm back to butter now myself.

    Dannybex -- I was told that they don't believe that XMRV causes CFS or that it's even important really. We'll have to see what they say officially whenever they do one of these days. I've said this before and I'll say it again: If the NCF had found XMRV in PWC they would have been shouting BREAKTHROUGH from the rooftops.

    tee
     

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