New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
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Life After XMRV?

Discussion in 'XMRV Research and Replication Studies' started by Marco, Aug 18, 2010.

  1. Marco

    Marco Grrrrrrr!

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    Possibly a little premature, but I've been wondering what the likely lie of the land will be 'post-XMRV'?

    For the sake of discussion, let's get two assumptions out of the way immediately :

    That's XMRV is strongly associated with XMRV;

    That XMRV is wholly or partially causative.

    The first assumption now appears to be confirmed while there are strong hints that confirmation of the latter will follow soon. We can only wait and see.


    In the meantime, two related issues have been bothering me :

    Is XMRV+ a diagnosis of ME/CFS?, and

    What happens to those diagnosed with CFS who do not test positive for XMRV?


    Is XMRV+ a diagnosis of ME/CFS?

    We all know the issues of case definitions and prevalence so no need for me to repeat them. If we assume that the Canadian Criteria prevalence rate equates to around 0.5% of the population, that the prevalence rate using the CDC's empirical criteria is around 2%, and that the approximately 95% XMRV+ rate for a CCD cohort is correct, then approximately a possible one quarter of all patients currently diagnosed with 'CFS' will test positive for XMRV.

    But XMRV has also been linked with prostate cancer, possibly NH Lymphoma and may be implicated it other illness such as autism, atypical MS etc not to mention the possibility that 3-7% of the population as a whole may test positive for XMRV. There is also the suspicion that XMRV may lie latent until triggered by something else.

    So :

    (a) the rate of XMRV causing diseases of any kind in the population is likely to be much higher than the 0.5% of accounted for by those diagnosed with CCD CFS;

    (b) testing positive for XMRV only represents a risk factor for developing a range of illnesses. It is the presence of XMRV plus the typical symptoms that determines whether you have XMRV mediated 'CFS', XMRV mediated prostate cancer etc.


    What happens to those diagnosed with CFS who do not test positive for XMRV?

    Clearly this is weighing on many people's minds, particularly those of use with mild/moderate symptoms or who don't recall a viral onset. On the other hand, lets face it, we have been banging on for years that lax case definitions have led to researchers studying patient cohorts that have a possibly large proportion of people who 'do not have real ME/CFS'.

    The problem is that losing one quarter of their patients to XMRV is a setback, but not a disaster for the psych lobby. In fact, without wishing to scaremonger, the position for XMRV- CFS patients may become worse. Rather that 'CFS' being complex and unexplained for which the 'pragmatic' treatment is CBT and GET, the psychs can say there you are they found the pathogen that causes 'ME' and you don't have it you have CFS, a somatoform illness, period. I think we can see this process at work already with the CDC's claims that they never studied ME and supposedly innocent questions cropping up on 'other science forums' like are ME and CFS the same thing. There's also the danger that the best researchers will inevitably be drawn to the XMRV+ cohort to the detriment of others.

    What I would hope would happen would be that, once XMRV is proven to cause ME/CFS, that this is enough to strongly suggest that other unidentified pathogens should be considered as the default assumption in investigating those who share the symptoms of ME/CFS under strict diagnostic criteria but who do not test XMRV+.

    In fact I'd go further to suggest that another pathogen should be considered likely for anyone falling within the broader definition of CFS, including those who may be suspected of having clinical depression or other 'psychiatric' illnesses. The recently discussed 'massive parallel pathogen arrays' (excuse me if the terminology is wrong -I hope you know what I mean) may be the type of tool that can relatively rapidly screen a wide range illnesses.

    Hopefully also the immunological findings coming from WPI will start to drill deeper into how pathogens like XMRV cause the myriad symptoms found in XMRV, including psychological symptoms, and these finding cast a little more light on 'psychiatric' and other 'medically unexplained illnesses'.

    Without wishing to delay the research and hopefully treatment for those found to be XMRV+, I'd like to see the approach and techniques used by WPI applied to a much broader population as early as possible.

    Otherwise, I feel many of us are in for 'interesting times' as the Chinese would say.
     
  2. Esther12

    Esther12 Senior Member

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    Even if XMRV is only significant for a tiny sub-section of CFS patients, it will be great for helping us clear out some of the psychological quackery that has been around. People will be far less willing to give them the benefit of the doubt just because they know how to speak in academicese. I quite agree about interesting times. I wonder how it's all going to turn out?

    (Just to be clear - I expect that some people with CFS will need psychological help - but I don't think they've benefited from the psychological quackery that's surrounded CFS. Hopefully there will be a real improvement in the way all CFS patients are treated, whatever the cause of their illness).
     
  3. sphynx on roundabouts

    sphynx on roundabouts

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    Thank you very much Marco for articulating the fears that I am too tired to record. I am very severely affected and had a viral-type sudden onset and this fear is weighing on my mind too. I've seen people on other threads of this forum that, without a single doubt, have ME/CFS but they have tested negative in VIPDX and Red Labs. I hope we can all unite and remain one community in the near future when we could be in danger of being split into the x-positive group and the undefined x-negative who nonetheless have the same illness. It seems like too much of a dream for me that after decades of progressing illness with only medical indifference, I could test positive for something that has potential treatments.

    Good luck to you for whenever you will be tested.
     
  4. urbantravels

    urbantravels disjecta membra

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    I like to believe that even the XMRV negative will benefit greatly from the new avenues of research that have now been opened up. My feeling is that there will be a knock-on benefit to all PWCs when the overall illness is understood better, due to more research dollars being poured into it and renewed interest within the research community. And it is quite possible that anti-retrovirals will not be the only, or perhaps even the best, treatment for ME/CFS, even for the XMRV+.

    I see a huge public perception shift coming that *will* benefit all PWCs in numerous non-medical ways, too.
     
  5. SOC

    SOC Senior Member

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    Interesting discussion topic!

    I don't think we can include the CDC empirical patients universally as "ME/CFS" patients. That criteria simply includes too many people who clearly don't have the same illness we do. I'm willing to accept that the number of true ME/CFS patients (as opposed to true psychiatric patients roped in by the CDC empirical) is double the CCD chort, or 1% of the population.

    That might mean that 50% of us will turn out to be XMRV-, which seems more likely than 75%. I suspect, though, that a fair number of non-CCD ME/CFS patients will be XMRV+, too.

    I'd say (mostly guesswork) that it's more likely that 80% of us will be XMRV+, leaving an unfortunately small 20% left stranded, to be roped into the psychiatric cohort. This would be VERY BAD.
    Agreed!

    I wonder if XMRV is not so much a risk factor as a definite precursor to illness, similar to the way people can be symptomless HIV+ for many years and are only defined as an AIDS patients once one (or more?) of certain secondary illnesses develop. See AIDS defining clinical conditions http://en.wikipedia.org/wiki/AIDS_defining_clinical_condition

    If there is a similarity to HIV-AIDS, a person could be XMRV+ without obvious symptoms (like many HIV patients), but once s/he develops some defined set of "XAND defining conditions", s/he woud be classified as an XAND patient. Some of the AIDS defining conditions themselves are also quite possible in ME/CFS patients -- candidiasis, CMV disease, recurrent pneumonia, or " bronchitis, pneumonitis, or esophagitis", for example. If XMRV works this way, XMRV patients would probably have their own set including, for example, recurrent herpesvirus infections, fibromyalgia, prostate cancer, lymphomas, or symptoms of what is now called MS, just to name a few.

    XMRV may not work that way, of course. :Retro smile:

    Yes, this is a huge concern for me. It would be so easy to let that subset of us fall between the cracks.

    Agreed, except that I think the psych lobby is going to lose something closer to 50-75% of their CDC empirical cohort, which they're not going to like. That makes me worry that they'll hang on all the harder to their XMRV-, "true" ME/CFS patients.

    I think we (XMRV+ and XMRV-) need to push hard for that process. All the previous work done on so-called ME/CFS (or CFS) needs to be reconsidered in the light of the new patient group. It will be all too easy for someone (CDC, for example) to say, "We've already proved that pathogen Y (EBV, HHV-6, enteroviruses, etc) is not causal for CFS, so now that we've eliminated XMRV+ patients, we know the remaining people have no organic illness." Wrong! All the old data is undoubtedly cluttered with XMRV+ patients whose results skew the data so badly that no conclusions can now be drawn from it. It could be that the so-called insignificant number of Fukuda PWCs with enteroviruses may be the patients who are ill, but don't have XMRV, for example. That "insignificant" number could be 90% of the XMRV- Fukuda PWCs.

    Data from these massive pathogen arrays needs to be analyzed in a variety of ways, but very importantly, we need to look for patterns in the XMRV- population ME/CFS population -- and, as you say, patients diagnosed with similar symptoms who have been officially classified as having clear psychiatric presentations such as clinical depression.

    Absolutely! I think the emergence of knowledge of XMRV could have a huge impact on medicine overall. Many patient populations should be tested for XMRV, and probably will be. Most likely the unexplained illnesses cohort will come early in the testing, but I hope researchers consider all kinds of sporadic illnesses. Inversely, I'd like to see the XMRV+ control populations studied for patterns of illness other than ME/CFS -- clinical depression, diabetes... who knows what might show up?
     
  6. Wayne

    Wayne Senior Member

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    Paradigm Shift in the Making ?

    I think this is all going to take years to sort out, and I try not to get too far ahead of things. I do however believe that the those with bona fida CFS symptoms not testing XMRV positive will benefit enormously from the information coming out. I suspect there will be a pretty major "paradigm shift" regarding heretofore undetected viruses/retroviruses; how difficult they are to find, and how they may be responsible for a variety of illnesses.

    I hope this will eventually lead to researchers going back to the De Freitas retro-viral findings, and pursue her research more diligently. It seems clear she was on to something, and I would be surprised (shocked) if there were no association between it and CFS. I suspect various bacteria could eventually be shown to cause various types of CFS-type immune system abnormalities as well. Lyme and moycplasma come to mind.

    It's hard to predict how this may all play out, but I suspect the CDC could be in for some very tough questioning as this all unfolds. Like, how could you have been so clueless and negligent over the past 30 years as the ME/CFS story played out? Plus many, many more questions. I think a big part of the paradigm shift that could occur from the current XMRV research will be a result of the "powers that be" holding CDC's feet to the fire and demanding reform at the higher echelons of the organization.

    Best, Wayne
     
  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    When it comes down to the definition of cfs, its an illness where they cant find anything, so if u end up with xmrv, u jump out of the cfs class and into the xmrv, just like if now someone with cfs was idagnosed with ms they would then suffer ms not cfs. The whole definition thing of cfs was messed up when they got rid of ME and it became a sub set of cfs. Drop the fatigue because just about every illness has fatigue and call it chronic immune defiencey which could be diagnosed now through NK cell function test. I think neuro-immune disorders is another appropriate name because i dont think everyone under the cfs label will have xmrv, mainly because of dr lerners recent study treating cfs patients with evidence of herpes infections and being successful(although testing them for xmrv would be interesting) and then some of montoyas group of hhv6 patients recovered on valcyte, i know the percentages arent that high but some did recover.

    So i suppose what im saying is get rid of cfs, lets call it a neuro-immune disordered which can be cause by a number of infections like xmrv, ebv, cmv, hhv6, mycoplasma etc and those with no apparent immune disorder classed as cfs for now and we have to try not to leave these people behind but to keep encouraging research to help these people and save them from the psych's.

    cheers!!!
     
  8. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    I have had my symptoms for nigh on 20 years. I will be very disappointed if I am tested XMRV- almost to the extent that I may never get tested. I would like to hear some of the XMRV- people contribute to this thread. How do they feel at the moment?
     
  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    One of our board members has tested negative but she has alot of evidence from past tests (L RNase??etc)that her immune system is fighting stuff as well as high viral titres to herpes infections etc. mxrv testing available to the lay person at the moment isnt concrete yet anyway.

    Im suprised at how many brissy people i have come accross lately here, good to find another one rusty.

    cheers!!!!
     
  10. SOC

    SOC Senior Member

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    It's about time I asked this question: What exactly is the difference between CCD CFS and ME? I've heard a lot of people complain about mixing CFS and ME patients in study sets and treatments, but when it gets right down to it, I don't really understand the precise difference.
     
  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    ME is suppose to be able to be diagnosed from symptoms where cfs is diagnosed from excluding things and a waiting period of 6 months. In ME neurological symptoms are of importance in diagnoses where fatigue isnt for a diagnoses of ME, although it would probably be present as it is in most illnesses. I think the differences in the definition between ME and CFS is what makes this illness so hard to study because cfs encompasses every man and his dog and also there is nothing mentioned about dysfunctional immune system in cfs, which i think should be one of the main criteria, which is where they got cfids-chronic fatigue immune dysfunction from. I must admitt, the water is pretty muddy on this subject but if interested here is a link(long read) explaining this, http://www.nightingale.ca/documents/Nightingale_ME_Definition_en.pdf in a previous article by these people they do say all bets are of until xmrv is sorted out.
     
  12. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    Small world. Good to hear from you too. I don't look at the avatars much to see where people are from, so I didn't know you were from Brisvegas until now. Cheers to you too.
     
  13. Marco

    Marco Grrrrrrr!

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    That's also my take on it. A neuro-immune disorder that may be caused by a number of pathogens. That's why, even as the XMRV story has been unfolding, that I've been arguing that what we really needed was to be able to describe the neuro-immune dysfunction sufficiently to establish that as the core of the illness. The ability or not to find the specific pathogen then becomes less of an issue in dispelling the biopsychosocial theory.

    Of course, IF, similar immune dysfunction was found in CFS patients and in those with depression for example (and I know there are distinct differences in symptomology, response to exercise etc), there could be an argument whether CFS is just another form of depression or whether depression is a neuro-immune disorder. At least if XMRV is found to cause the immune dysfunction in a sunset of patients, this would strongly favour the latter regardless of the presence or absence of XMRV in a particular patent. Finding XMRV in a high proportion of depression patients would really stir it up.

    As for paradigm shifts, we can only hope so, but there's an awful lot of inertia to overcome.

    I'm not intending to drag people down when things are starting to look so good. What I'm talking about is strategic planning, part of which is examining the worst case scenario, downside risks or whatever alphabet soup management consultants use these days.

    Every successful organisation does the same and I can bet that the opposition have been doing it at least since the Science paper was published.

    Please be happy but lets not rest on our laurels yet.
     
  14. Ash

    Ash aka @smashman42 'SortaDerpy' on Twitter

    I'm scared of DSM V & Complex Somatic Symptom Disorder - will the rest of us who end up XMRV- be in Wessely/Reeves town forever?

    The whole CDC & Wessely neglect thing being exposed should change how everyone looks at it, but will it? I mean, look at MS/hysterical paralysis - that didn't wake the medical and/or scientific world up so why would ME/XMRV?
     
  15. urbantravels

    urbantravels disjecta membra

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    It looks as though there are a whole host of other physical findings getting found now besides the presence of XMRV. If they can pinpoint the immune dysfunctions and develop treatments to specifically address that, it won't matter enormously whether or not you are XMRV+. Heck, antiretrovirals may not even be the linchpin of treatment for the XMRV+. We simply don't know yet.

    Call me a crazy dreamer, but I can foresee a scenario where the very existence of XAND changes the paradigm so much, with other biomarkers being found and widely accepted, that XMRV- people presenting with the same symptoms will not be left out in the cold. The default assumption will be that they have an organic disease and it is probably "XAND-like," with the pathogen either really well-hidden or there being some other pathogen at work. The XMRV- might find themselves treated empirically, or based on the other biomarkers.
     
  16. taniaaust1

    taniaaust1 Senior Member

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    Ive been thinking of that too lately. Those who are diagnosed negative probably will have a huge battle on their hands but focus needs to be kept on the positives of things too, this means a big subgroup has been taken out the CFS mix.... allowing it more clearly to be seen what is left and study those subgroups left. All research on CFS will need to be started all over again and hopefully there will be more clarity.

    Those left need to look at their symptoms more closely too and try to figure out if they possibly have been misdiagosed as a big group of what is left probably has been (I'd put a guess at probably 30% are misdiagnosed as as we all know doctors so often do get diagnoses wrong and there are so many rare things out there, doctors tend to mostly just test for common things). Some here will be misdiagosed Celiac disease or other major food issues causing their symptoms, some will be misdiagosed/undiagnosed POTS patients (one can have POTS alone without having CFS, POTS symptoms can be very close to CFS ones), others possibly rare autoimmune issues eg Systemic mastocytosis, Addisons disease, hashimotos, immune defects, undiagnosed lyme, chronic depression (that can give some symptoms!) etc.

    I personally think the amount of ones left are going to be smaller then many realise.. remember the Georgia?? studies.. where they recruited CFSers by phone. Many of those werent very sick at all.. hadnt even bothered to go to the doctors about it and many fully recovered.. umm was it a year later??? Most of those in that study would of recovered without even ever getting a CFS diagonses if it wasnt for that study.. and from that study they come up with the CFS estimates of numbers. Most of those at websites due to being quite sick (are ones which do tend to go to doctors).. probably would meet the CC CFS guidelines so a very high percent from places like this.. will be found to have XMRV

    Any found to be negative.. it may pay to look at symptoms from scatch and work out "could this be being caused by something else?" I myself have never believed in many of the CFS definations which were just "made up" by governments. The only thing correct, is that those people are sick with something(s) and have often been thrown into the doctor too hard basket.
     
  17. *GG*

    *GG* Senior Member

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    I think if people have tested Negative at this point, perhaps the Improved test will show that they are postive?

    I should find out in a week, but they might need more blood to find, so it could be a couple more weeks. I have heard that the more functional that you are, the harder it is to find, (I still work, so I guess that makes me rather functional) not sure how true this is, we are still in the early stages.

    So hang in there just a little longer, and hopefully we will turn a Major corner very soon!
     
  18. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    thats interesting, how functional? I still work fulltime, somehow? crash on days off, but antivrals and sleep meds help keep me going, if i couldnt get good sleep regularly i would be house bound for sure, plus the Mrs and the kids keep me going. I do have immune abnormalities show up in blood tests. Even if i tested negative to xmrv , my doc still says i have some sort of immunodefiency.
    we shall wait and see.
    Im looking forward to seeing the faces of all these docs who once thought we were all crazy, find out it is an infectious disease, mmmm i would like to give them the aussie official sign language, 2 fingers, up your buddy! Thats not to harsh is it, it helps release frustration, lol

    cheers!!!!
     
  19. ixchelkali

    ixchelkali Senior Member

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    You've described what I think when I'm in an optimistic frame of mind. Marco touched on my nightmare fears. I wonder if there's a single one of us who has not yet been tested, who doesn't wonder, what if I'm negative? What then? The higher the percentage of patients who test positive, the harder it will be on those who don't. The scariest idea to me isn't that I'll be negative, it's that some young, severely-affected, bedridden patients will be, and it will push them over the edge into despair.

    I'd like to think that those who test positive will stand by those who don't, that having been discounted and disparaged, we would stick together. But frankly, I doubt it. I've seen what happens when someone says "I did thus-and-such and I recovered." Immediately, those who are still sick are inclined to say "You must not have had CFS to begin with. You must have just been depressed." I'm afraid we --collectively, those who are XMRV-positive-- will be all too ready to say that those who test negative never had "real" ME/CFS. They were probably depressed. That's my 2:00am secret pessimism.

    I hope I'm wrong. I hope that Wayne is right about this leading to a paradigm shift in medical science.
     
  20. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    if u have goals and dreams and think if your body can get out of this mess called cfs, then your not depressed. Depressed people have no goals or dreams, nothing to hang onto. After saying that, depression is common with cfs as it takes our lives away. i think we can diagnose our selves better then most docs. If cfs was depression then antidepressants would help us alot more. As i told a doctor once, antidepressants make u feel better about feeling like sh-t! they help u put up with lying in bed looking at the ceiling, where if it was just depression with no cfs u would be up and about getting into stuff.

    cheers!!!
     

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