1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Hyperparathyroidism: An Often Overlooked Differential Diagnosis to ME/CFS
Andrew Gladman puts hyperparathyroidism under the microscope, exploring what the disease is, how it can mimic ME/CFS in presentation and how it is treated.
Discuss the article on the Forums.

Newly refined test from the Whittemore Peterson Institute

Discussion in 'XMRV Testing, Treatment and Transmission' started by Abraxas, Jan 14, 2010.

  1. Wayne

    Wayne Senior Member

    Messages:
    2,204
    Likes:
    1,327
    Ashland, Oregon
    WPI Press Release

    Well, I dunno. I don't really understand most of the science that's been discussed. And I really don't understand most of the politics either. Anybody else feel the same way?:Retro smile:

    I guess what I feel while I read all this complicated "stuff" is how grateful I am for WPI. The way I see it, here we have a new and relatively small research institute doing some big stuff. And I suspect this is driving some larger, older, and more prestigious research facilities a little bit crazy. I think I've read that some people think WPI was lucky and stumbled onto their findings. Perhaps that's the case, but wouldn't other research facilities also been lucky if they had just decided to start doing some basic research?

    I just feel WPI was started for the right reasons and though I appreciate Kurt mentioning some of his misgivings about how certain aspects have been handled, I think they're doing just fine. From my perspective, I think I would give them an A for overall effort and performance, and raise it to A+ because I get such a strong feeling for their commitment to PWCs. They are my heroes.

    BTW, does anybody know how many researchers or research facilities have actually done some basic research on ME/CFS? I hear references to Elaine DeFreitus (Sp), but I've not heard references to others.

    Wayne
  2. Kati

    Kati Patient in training

    Messages:
    2,006
    Likes:
    1,420
    Well said Wayne! I concur.
  3. Lelvina

    Lelvina ex-Bookworm

    Messages:
    57
    Likes:
    2
    AZT also treats FeLV which WPI found in the virachip study

    I may be misreading this, but...

    Dr. Coffin on XMRV and Chronic Fatigue Syndrome
    Feline Leukemia Virus, which Dr. Coffin calls 'closely related' (to XMRV, which the above page is all about), was listed as the third ranking virus in the virachip study for CFS/ME by the WPI WPI May 29,2009 presentation (page 13, the right hand side, very small )

    So #3 with Clonal TCRg rearrangments, not sure what that means. It also mentions SLEPR results, and that it's a normalized pool.

    Anyways. So Feline Leukemia Virus is closely related to XMRV, and Feline Leukemia V. is ranked #3 in the virachip study... And what about AZT?

    Googling AZT + Feline Leukemia Virus...

    Cat Fancier's Association (Not the most scientific name!) FeLV = Feline Leukemia Virus
    So the AZT may be working against FeLV which many PWC have! So that may explain feeling better.
  4. reply to kurt with thanks I enjoyed your post look forward to a reply I am having t

    I,m not sure if I,m using this foremat correctly

    Hi Kurt-the tests used in the imperial college study were adapted from tests used to detect htlv 1 and two and HIV-as i ubderstand it the primers used were also specific to these two viruses the effect of these primers and their point of binding on the xmrv rna is not known-Ist variable-- comparing their result to a dna sequence assumed to exist in xmrv is yet another unproven element of their test-i still assert that the tests shown have not yet demonstrated their ability to detect XMRv even if present and need validating against a known sample.i take your point about validating.Replication however does validate the hypothesis that in these conditions XMRV can be detected in these patients diagnosed according to these criterea.What hypothesis was the imperial college study examining.Replication to be scientificly valid should aim to test this hypothesis if not then it is scientifically unvalid if not illiterate.As an aside as a researcher in this field have a look at the controls in the imperial college study the lines are far too faint-they should be off the scale-the test can berely detect in vitro concentrations!lastly the semi structured questionaire used to diagnose cfs patients in the imperial college study is referenced Sharpe et al 1991-On investigation however this study in no way refers to a semi structured questionaire.Perhaps you can obtain a copy this would blow the study clear out of the water as the methodology at the very least is inaccurately referenced and should have been picked up by the peer review process.I also took your point that i misread some of your comments -sorry-before i forget the possibility of cross reactions at the moment is entirely theoretical and it would be for others who dispute the WPI test to demonstrate that we simply dont know.

    very best wishes
    gerwyn
  5. Hi Lelvina, I found this about Dr Peterson's work, that I think it to do with the above..

    ''A subset of patients severely affected with ME/CFS with evidence of viral reactivation has been documented to demonstrate a gamma T-cell clonal rearrangement. Studies are currently underway to determine the monoclonality and antigen specificity of this unusual T-cell rearrangement, as well as intensive studies into the possible role of viruses in development of neoplastic disorders in a subset of chronically affected ME/CFS patients.''

    Source

    I think T-cell clonal rearrangement is linked to Lymphoma, which Dr Peterson has found in patients with CFS in America.
  6. omerbasket

    omerbasket Senior Member

    Messages:
    510
    Likes:
    13
    I very very much agree. I think that the Witthemore-Peterson institute, and the people in there, are an example for people who achieved something because they really wanted to do it. The WPI was established, as I understand it, for very definitive targerts: to bring relief and to find a cure for patients with neuroimmune diseases. And they showed that it is very much possible to find the cause of a illness, and possibly its cure, if you really want to do that. If anyone suggeest that the Withemmore family tried to gain money and be richer by establishing this institute, I think they sholud rethink about it. Annete Witthemore and her husband are just parents who had an ill daughter, had some money and decided to try and do something by themselves to make their daughter better - and not to wait for a miracle by the sceintific community. After all, there are many diseases that wait for such a miracle for many many many years and it doesn't seem that it's coming. Here, the Witthemore family showed that some people may bring the miracle to thmeselves and to many others. And it seems like they picked up some very good and caring people for their medical staff.

    By the way, excuse me for my English mistakes. I'm from Israel, so I'm much better speaking Hebrew...
  7. Different serotypes of XMRV perhaps

    I agree that this could be a possibility -Wessely,s rebuttal of the WPI statement makes interesting reading however He claims that there were no psychiatric patients in the study-The WPI actually stated that there might be patients with PSYCHOLOGICAL problems-The two definitions are not the same, psychiatric in the UK referrs to the psychoses not the neuroses like anxiety and depression.Also the word typical is not used in its normal english context it means typical according to cetain diagnostic criterea.The words typical of CFS patients seen everywhere has no meaning and is not the same as typical of ALL CFS patients.I have years of experience of deciphering this "Scientific legalease".The WPI should publish an appendix of the symptoms reported by its patients and invite wesselly et al to do the same.The hypothesis that they wern,t the same patients can be easily tested.We should not play the labelling game but focus on reported symptoms like any RCT worth its salt would, to enable a baseline comparison to be made, and eliminate yet more variables.I do agree with Kurt that we dont know the extent of variation in the XMRV genome or its mutation rate thats why everyone at the moment should stick to the same test and not one which is generic for retroviruses already known.
  8. Mark

    Mark Acting CEO

    Messages:
    4,527
    Likes:
    2,004
    Sofa, UK
    Imperial Flaws

    Gerwyn's earlier post seems to have had trouble with formatting but has some excellent analysis so I thought it was worth emphasising this post (with my highlights in bold):

    If anyone else favours a new thread specifically to collate and list - concisely - flaws and question marks over the Imperial College Study's methodology and stated conclusions, perhaps they can start one?...
  9. Very OT:

    George - I LOVE your sense of humour. Whenever I see your avatar, your comment 'superior doggie sniffs' about the psych lobby trying to scramble a response to the WPI study, comes into my mind and makes me smile.
    And this plate licking comment was the icing on the cake of hilarity.

    Thanks for the fun... keep posting please...

    Rachel xx
  10. fresh_eyes

    fresh_eyes happy to be here

    Messages:
    900
    Likes:
    5
    mountains of north carolina
    @ parvo and the other optimists on here: Thank you so much for staying positive. :balloons:

    CJB, that is the best expression I've heard in a while. :D

    Kwietsol, thanks for bringing this up. I've see pregnant women with CFS on other fora. Even if XMRV hasn't yet been *proven* to cause disease, it seems imperative to protect babies from infection with it.

    Very interesting link, Levi!

  11. Advocate

    Advocate Senior Member

    Messages:
    506
    Likes:
    14
    U.S.A.
    Mark - I, too, found Gerwyn's early post (make that plural) very helpful, and I, too, reformatted. But I did it only for my personal use and didn't think to share it with everyone in the forum. What you did was terrific! Especially the bold highlighting.
  12. imready

    imready Guest

    After reading everyones comments my mind is just blank. I hate brain fog!!! I read a post and go to the next and can't remember what the first one said.

    Soooooooo my question is, what is this new test? I had the test that cost $650 and it came back negative for both. Is this new test something different? I emailed VIPDX to ask this question.
  13. Mark

    Mark Acting CEO

    Messages:
    4,527
    Likes:
    2,004
    Sofa, UK
    Thanks advocate - I'm keen to encourage people to do more of this sort of thing, we have all this wonderful but raw and scattered information that needs pulling together and editing somehow, it seems to me there should be an organic way of doing it together as we go along somehow...

    As a case in point, please note that on the main 'fight is on' thread, it's already been clarified that the reference to the questionnaire is actually 1997 in the paper, not 1991, so I've now edited that one out - although checking out both papers neither are too clever, as you'd expect...
  14. kurt

    kurt Senior Member

    Messages:
    1,132
    Likes:
    176
    USA.Earth
    You left out a few important women in this drama. Susan Vernon at CAA, and of course Dr Ila Singh (MD and PhD) of Columbia University and now at the U of Utah Med Center who co-discovered XMRV in malignant prostate cancer samples. And of course Mrs Whittimore. Also 75% of PWC are women. That is the most important figure in my opinion.

    But we do need to hear from the males involved also, nobody has a monopoly on CFS research, or treatment. As Dan Peterson says, this is a complicated illness. There are not simple answers, a lot of combined brainpower is needed to solve CFS.

    One more thought, I think the involvement of so many women in the XMRV finding, particularly related to WPI, may be one of the reasons that the PR for this finding has been so successful. As females they perhaps have an easier time empathizing with and understanding the pain of so many females with CFS. So they are doing a better job of communicating and stating the case for CFS than previous researchers have. Maybe this is an insight into how to promote CFS, to help with advocacy. Focus more on the women in the medical system, is there an association of female doctors, for example? Female legislators? Maybe that type of target would be good for advocacy organizations to focus on right now. The men just do not 'get it' about CFS unless they are specializing in CFS, or like me they actually have the illness or have a close family member with CFS (which I also have, someone up there wanted to be certain I 'get it'). Before I got CFS I also was a total disbeliever that the illness was real...

    Update- I just thought of another one, Dr Huber at Tufts, she is studying the connection between HERV activations and CFS, which in my opinion is somehow related to the WPI XMRV finding, although the specific link is not clear yet. If MuLV type HERVs are involved in CFS, that might explain the differences in the studies, and per reports on this forum those differences are likely to continue in other replication/validation studies not yet reported. So I think the HERV angle may grow in importance, to either find the connection or rule that out. Dr Huber's work might be interesting to watch.
  15. Sorry i forgot

    Hi Kurt
    I am not questioning the skill of the researchers merely their assay protocols-they are unproven as far as XMRV is concerned.The study did not follow scientific convention in a number of key areas not least in introducing confounding variables.Initially,as you know the AIDs virus could only be detected using one assay method! and that was only due to its fast replication rate and relative genetic stability.Science abounds with examples where the coclusions and theoretical postulates of one study were validated by replication of results in another-I dont see the conclusions of the WPI as unreasonable in the context of the study.The WPI research may well be early stage but i,ve seen far worse now accepted as mainline science.The stroke study involving slow release persantin for example which has changed prescribing policy in the Uk.We must also ask ourselves whether the imperial college study have been accepted for publication in Science with the amount of peer review it underwent-The answer(as you know the peer review process) is categorically No.Why are we therefore conceding that the two studies have equal scientific merit.Whatever its flaws(and i take many of your points) it is many orders of magnitude closer to the scientific ideal than the one from imperial college
  16. kurt

    kurt Senior Member

    Messages:
    1,132
    Likes:
    176
    USA.Earth
    Correct, XMRV is not endogenous. However, it was probably endogenous in mice at one time, somehow it mutated and crossed over in the recent past. Anyway, the research into endogenous retroviruses is pretty new, in time we may learn that endogenous retrovirus activation can be quite pathogenic.

    In a way, this is a 'what's next' situation. Meaning, we have tried treating CFS with antibiotics and antivirals, and any of those can hit on infections that have not even been identified. So maybe anti-retrovirals are next to try. And even if anti-retrovirals do help PWC, that is not proof that they are acting only against XMRV. Who knows what else we have in us...

    Wayne, I hope people do not get the wrong idea about my analysis of the WPI press release yesterday. I am definitely NOT against WPI, anyway are we choosing teams? I really am impressed with their efforts, just taking us seriously and investing serious hard dollars in CFS like they did was a break-through. Then running the virachip study, why hasn't that been done before? That produced a mountain of data that will probably take years to sort through, look at all the co-infections? Which ones are critical to CFS? And finally getting a study in Science about CFS, wow, nobody has done that before. Even if there were some errors or the study was too rushed, I am impressed, even a fan. But also I am trying to stay objective, I am a former researcher and know that the process of scientific criticism helps to improve research all around, and that is what I am trying to help with. This situation is made more complicated by the political problems with CFS, and I understand why WPI has taken a type of advocacy role. But that combination is risky. My worry is that some parts of the XMRV study in Science are likely to become discredited, that is what happens in this type of early stage research. And I want to at least try to prepare people for that, think through all the issues now, so we can use this debate to refine and improve our response, collectively speaking.

    As far as my own grade, I would give WPI an A for their investment, an A+ for the virachip study, an A- for their Science study and a B- for their defensive handling of controversy thus far, and for not being more clear about potential COI issues. Overall maybe an A-, hopefully that will improve.
  17. usedtobeperkytina

    usedtobeperkytina Senior Member

    Messages:
    1,384
    Likes:
    186
    Clay, Alabama
    Yes, I did neglect to mention the other women.

    I just believe that sexism has a part in some of this. I know there are women on both sides. But considering the doctor attitudes toward the women with the illness, that their being women means it is more likely to be psychological, I wonder if the fact that many of the researchers are women may have some influence on the attitudes toward that research. I think it likely had a big impact on the CDC guys not willing to go to DeFreitas to see her methods. "We can do our own methods. We don't have to go have a woman teach us how to test for viruses." (No one actually said that, as far as I know. Just wondered if that thinking was part of the problem, and is part of the problem.)

    Tina
  18. Robin

    Robin Guest

    Thanks for posting, gerwyn. I learn so much by reading your "take" on things.

    I was wondering the same thing: we're dealing with a patient population which may not be homogeneous, and a retrovirus which may be cross reacting with something else, AND has an unknown mutation rate. There are variables all over the place! I'm just waiting to see what the CDC retrovirologists come up with -- they're working more closely with the WPI and don't have the political baggage of ME/CFS research in the UK. So if they find something, even if it's not XMRV but something, we can go from there.
  19. kurt

    kurt Senior Member

    Messages:
    1,132
    Likes:
    176
    USA.Earth
    I thought HIV was only partly stable, it also mutates constantly, even in a host, right?

    And I agree the WPI study was more complete than the IC study, but disagree about whether the Science study was sufficient to make conclusions that 'the answer is here,' and to launch the subtle campaign for CFS social and political validation that we have seen from WPI and their supporters. I think the science must be very, very solid in a case like CFS, given how tenuous our credibility is politically. If there are problems with the XMRV study, any social and political validation efforts based solely on XMRV could backfire.

    Yes in the early stages like with HIV labs may only have a single method that works for finding a pathogen. But in this case we are talking about a possible pathogenic retrovirus in the blood supply, that requires validation that the XMRV pathogen is a problem.

    The IC study did get results with positive controls in vivo (per a follow-on test), they were capable of reading the test and finding XMRV. Unless XMRV is hiding in cells and there is some undisclosed method for cracking those cells built in to the WPI assay that has not been clarified, the IC study should have found something, at least a faint signal. But there can be other explanations for this besides problems with the IC study, as I am sure you know false positives can be complicated, and in this situation we have known problems with MuLV antibody and HERV interactions, abundant in the literature. Until we see several different types of validation studies, all confirming the presence of the entire XMRV genome, IMHO any claims being made are tenuous.

    Given that WPI is now focusing less on PCR, I think they know that this will be a long process, and I think they are wise to be promoting the more externally validated testing, a culture study using MuLV antibodies, for patients. Of course a positive on that test is not as good as validated PCR test, but it does show that some MuLV type pathogen is present and that is certainly useful knowledge, we should not have any MuLV type retrovirus active in our bodies. But testing firms should call this an MuLV test and not an XMRV test, particularly if there are problems with PCR testing for XMRV, because if that is true there is no way to be certain that an antibody attached itself to XMRV vs. some other MuLV antigen in the cultured sample.
  20. Andrew

    Andrew Senior Member

    Messages:
    1,962
    Likes:
    1,229
    Los Angeles, USA
    This is one of my biggest fears. Not to mention the emotional impact it can have on pwc.

See more popular forum discussions.

Share This Page