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

Discussion in 'XMRV Testing, Treatment and Transmission' started by dean, Jun 11, 2010.

  1. omerbasket

    omerbasket Senior Member

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    I tend to think that almost everyone here who have a positive stand regarding the possibility XMRV as the cause of ME/CFS - want it to be the cause, and almost everyone here who have a negative stand regarding that possibility - want that XMRV would not be the cause. I think that almost everyone's "objective" opinion is related to his wishful thinking. Therefore, regarding your question, "are you the only one who hopes that XMRV is not the cause of ME/CFS?" - I definitley think not, because there are at least a few writers here who seem pesimistic about the possibility that XMRV is the cause. But probably most of us do want it to be the cause, because most of the writers here seems optimistic about that.

    What about me? I think I am in a different position than many of the people here. Why? Because I'm 21 years-old. On the one hand, I want to find solutions to cure me or at least to make me feel better. On the other hand, I'm really arfraid from the possibility of being contagous during intercourse.
    I think that I do tend to want XMRV to be found as the cause of what I have (currently diagnosed with fibromyalgia). the illness is limiting my life, and most of the time I think that it limits it too much, in a way that I would rather have a contagous retrovirus than living with the illness. By the way, ofcourse everyone would like that it would be something much simpler - perhaps a bacteria which we can get rid of with the right antibiotics. But we are realistic - It's hard enough to find the cause of our illnesses during our lifetime - so if it is found, and it's found to be a retrovirus, most of us grab it with 2 hands and say "thank you" (and others don't - and it's totaly fine!).

    My hope is the following: I hope that XMRV would be found as the cause of my illness; That I would treat it successfuly and feel a lot better (to cure it is also my hope, but let's say that right now to feel much much better sounds really good to me too); And that it wouldn't effect me socialy in a bad way - Mostly because I would not be contagous (because XMRV would be found not to be contagous, including during intercourse, and it would be contagous only in situations which I can avoid easily. Or because there would be a vaccine ready in a few years that would work perfectly. Or for other reasons). That would be a dream come true. And I guess that right now none of the human beings can say that it is impossible.
     
  2. JillBohr

    JillBohr Senior Member

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    I do agree with that. I lost two relatives to MS over the past several years and my friend's mother has had it since the late '80's and is in a nursing home. How she has survived so long is beyond me but she has suffered the whole time.
     
  3. grant107

    grant107 Jean

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    I will be very depressed if xmrv is not the cause. In 22 years this is the first real hope I have had.
     
  4. anciendaze

    anciendaze Senior Member

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    MS and CFS

    I think there is a connection between MS and CFS here, though I really doubt it is going to be simple.

    MS has been a very frustrating problem to deal with, but it had the advantage of being associated with a distinctive pathology, sclera on the spinal cord, from the time it was named. Until modern diagnostic tools were available, the only definitive diagnosis was made at autopsy, but then there was little doubt. CFS resembles the early stages of MS, when no such physical lesions are prominent. There does not appear to be a sharp diagnostic distinction between CFS and atypical MS, other than severity. Epidemiology has pointed to an unidentified infection as a precursor to MS.

    CFS has had many reports of pathology, but these were not necessarily unique or consistent. Now, with XMRV, there may well be both a cause and a pathology associated with that cause. Most discussion here focuses on XMRV as the cause. I want to point out that investigation of the pathology may be equally important.

    If only some of us have a disease caused by XMRV, and most do not, it now seems very likely the pathology will share common pathways. Having a single example to trace from source to outcome can reveal all kinds of unsuspected changes which are very hard to extract from statistics after a disease has progressed to the point of putting patients in doctors' offices.

    One recent (controversial) hypothesis about the majority of MS patients is that the lesions are the result of chronic cerebrospinal venous insufficiency. Patients without this problem may still have the inflammation characteristic of MS, but do not have specifically restricted blood flow to the spinal cord. This could be the cause of the lesions, which would still leave the problem of the remaining patients, who would be classified as atypical.

    We now have a possible explanation for different manifestations of this disease which takes us back to the question of what causes the inflammation. This might be XMRV itself, or it might be one of many coinfections caused by immune dysfunctions. We also have multiple groups finding haemodynamic anomalies in CFS patients, so it is not entirely far-fetched to ask if MS is part of a spectrum of pathologies.

    This kind of change is exciting from a research standpoint. For patients, it is a more distant hope, but it is still hope, which has been in very short supply.
     
  5. Mithriel

    Mithriel Senior Member

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    I have followed the research for decades. The majority of work has been looking at symptoms like cardiac problems rather than causes but there have been some of those too and the issue has always been complicated.

    The XMRV work is different. The study is scientifically compelling and meets the highest standards. The work was even done in different labs.

    The most compelling thing is that XMRV accounts for most aspects of the disease because of a cascade of events it can set going.

    If XMRV is not the cause of ME/CFS something very like it is. I believe this because of the biology, not because of any bandwagon or desperation.

    Having said that, CFS is diagnosed in patients where they can't say it is anything else so everyone with a diagnosis of CFS may not have XMRV.

    Mithriel
     
  6. garcia

    garcia Aristocrat Extraordinaire

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    Great posts by Mithriel & Diesel above. Agree totally with you both. This is the first time there has been a plausible cause postulated for this disease. Whether we want it to be true or not is not really the issue. Personally I would rather not have a retrovirus. But if this is what I have then I want to know sooner rather than later.
     
  7. It would be impossible with today's science to currently 'cure' (100% reversible back to previous state) any case of decades long severe ME , due to the tissue damage caused by excessive free radicals. (This would lead to 'lax' skin externally, and premature greying of hair etc - accelerated ageing). Internally it would damage DNA causing a multitude of issues, and one very important one being elevated Cancer risk.

    I saw a presentation that showed oxidative stress in CCC/ME patients, is WORSE AT REST, than an athelete POST EXERCISE!!!!!! That is spectacularly bad news, as it means (as Professor Jill Belch was demonstrating from the Vascular research unit in Scotalnd) that ME patients blood vessles are ''Rusting'' inside at a hugely elevated rate = future heart attack and stroke.

    Before this ME patients complain of attacks of Angina, (CNS derived, chronic heart pain and shortness of breath, even laying flat = evidence of diastolic heart failure. Mix this up with low ATP causing thyroid to run slow and everything just gets worse over time, irrespective of treatment.

    If one was magically 'cured' of ME, this damage would still be done. Maybe severe patients could recover to 75% of former self? Perhaps.
    It may, be possible to 'turn off' Dysautonomia if it were due to an immune driven process,. Same goes for low blood volume. (If we have less
    blood we would never be able to exercise, as we'd go into cardiac failure and die). Hence Cheney says we are forcibly made to sit still by our bodes,
    as a life preservation exercise. Get the blood volume back up to normal, and great things could happen. So that is hopeful.

    However. the consequences of long term severe disease (such as osteoporosis), and changes to skin tissue (damage) cannot be reversed by any science known to man. (If it was possible, none of us would age at all). Free radical damage and oxidative stress makes us age, and ultimately die. If people with ME/CC have this accelerated in the lining of blood vessels, then we're all in deep do doo long term. (Hence a 'cure' or an attempt at one is needed immediately to save lives).

    I am very worried about not be able to reverse Mitchondrial impairment, no mitochondrial disease (biopsy under the microscope) in the history of man has ever been reversed, and so XMRV is the only way this could be made significantly better if lowereing XMRV replication - aids ATP function = more energy for brain and organs (heart is an organ). If heart has more energy, it will pump better = this is very good for us.

    I have spoken personally with a surgeon (who operated on me) and muscle specialist in mitochondrial disease and they have both told me there is no treatment for mitochondrial disease that is effective, one simply 'manages' the patient with High Dose Q10 and other supplements that have minor effect.

    This to me is the crux, and thus (tragically) for this to happen almost fully, one would 'need' XMRV to recover from severe ME (with other anti-virals attacking HHV-6 etc) with CFS patients with proven damage to the body, (not Fukuda CFS) as otherwise there is no other way to recover in any way shape or form. As Komaroff said saying 'I have CFS' means nothing, until a huge array of dysfunctions are found. Without this, no one knows why they are ill.

    I am yet to see one severe ME patient who can show previous of evidence of damage to the body on a vascular, cardiac, immunological level (that is accepted by main stream science) who is now an athelete after 30 years bed ridden with severe ME. Which says everything towards why, and how - this cannot happen. There is a reason people with ME, cannot function on a multi systemic, multi organ reason - and ATP (energy) to cells is the reason as all organs stop working correctly. The 'hope' is this is caused by an immune 'infection' with a defect (genes) rather than a defect only. Infections can be attacked directly. XMRV is an infection and a special kind of one.

    Anti Retroviral treatment for XMRV (or other undiscovered retroviruses) could change this. People given months to live with AIDS, have made incredible recoverys -within 1 year of being on triple drug therapy. Maybe this can happen with XMRV. It 'aint gonna ever happen if no replication study is allowed on XMRV due to politics though and so more people die from lost hope (suicide) or endothelial damage (oxidated lipids inside blood vessels causing heart attacks/strokes) - see above.

    So for me, XMRV has to be the cause or I won't make 40. Started going to the ER by age 21 - which says everything really. Would be impossible to spend entire life span going to ER and make it 70yrs old. People go to ER with ME/CFS for a reason, body is exhausted in all pathways as this has dangerous consequences that can be fatal.

    Without XMRV, there is nothing as huge as a retrovirus that has been found in ME/CFS, hence people's expectations this has to be it, as if it aint it's game over for me, and lots of other people who have found out they're + and are very disabled. There simply isn't any treatment out there other than attempts to attack viral infections such as HHV-6, yet this is not accepted or (in the UK) even allowed. Lastly, we don't know if anyone who recovers of CFS/ME ever had XMRV as they haven't been tested!!!!!! (E.g Dr Lerner's patients).
     
  8. Martlet

    Martlet Senior Member

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    Moderator: Just a gentle reminder that members should not be judging the severity of another's illness.
     
  9. Elliot

    Elliot

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    I'm mixed on it to be honest.
    On one hand I'm reaching my seventh anniversary of having m.e/cfs. My health is just deteriorating more and more as the months go by (most of my seven years of having cfs/m.e were 'moderate'- past year has been moderate-severe) So I'm desperate for a cure or just..to know what the hell I have.

    But.

    Only one paper, and that is the original paper, has been released showing a high correlation between cfs patients and xmrv retroviral indicators. Time will tell if other studies come out showing positive or negative studies. The implications of having a retrovirus wont be fun! And a lot of the antiretrovirals used on hiv patients are rather nasty in themselves. But I think in the end I would accept an XMRV diagnosis compared to a 'we don't know' diagnosis, just so I can get better!
     
  10. Please can you give an example of this for future reference? Thank you.
     
  11. dean

    dean

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    The only way you could ask for this is if you were not as sick as I was.....:D

    (this is a joke)
     
  12. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    I thought there has been a ton of research on MS? At least the amount of money for funding is dramatically more in the US, perhaps this just doe not equate into improvement for patients?!

    Jill, Have you heard of LDN? Lots of MSers are using it.
     
  13. usedtobeperkytina

    usedtobeperkytina Senior Member

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    True, which is all the more making my point. If people fear "catching" the dreaded XmRV.... then we are much better off than even the MS folks.

    If we end up just having a neurological illness, then there we go with MS, only much further back in line. No real imputus to find the answers or cures.

    Tina
     
  14. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I agree.

    I just want to know what causes it and to me retrovirus(es) make the most sense theoretically and empirically (the results of the studies- Lombardi, DeFreitas, etc.) so lets study them!

    The sooner we know the sooner we'll be treated like human beings and get medical treatment.
     
  15. dannybex

    dannybex Senior Member

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    While Dysautonomia (and others) always makes many great points (except for the one where he said no one likes him -- I might not always agree with every single thing you say, but I truly appreciate your posts as I always learn a lot!), I think there will never be A single cause, simply because there are so many other triggers and factors besides viruses and other infections, like environmental toxins (mold, heavy metals, pesticides, chemicals), traumas, prolonged extreme stress (cortisol anyone?) possible genetic issues, etc., that may be all different in each of our cases. And that's IMHO why it's been so hard to treat -- because 99% of docs/HMOs/medicaid/medicare programs won't pay for any of these other tests.

    just my two cents,

    Dan
     
  16. Sean

    Sean Senior Member

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    When I say 'cause', I mean the common underlying pathogenic pathway or process. There may well be a number of initial triggers that lead to a common underlying process, which is amenable to a specific treatment.

    Cancer might be a good comparison on this point. There are a number of know causes of cancer, smoking, radiation, genetics, etc, but they all have uncontrolled cell proliferation in common, and have a small number of treatments in common, chemical, radiological, or surgical therapies.
     
  17. firefly

    firefly

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    Thanks to all for the many good thougths on here. It's a good topic and one that I feel is helpful to process. I love what Ahimsa says about accepting what IS. There is no changing what IS, so worrrying about it is useless. Tough to do though.

    On xmrv. I confess that when I got my positive result I was absolutely devastated. I was not expecting it. My case had not seemed virally driven. My symptoms were mostly orthostatic. And it seemed like I was making very slow but steady progress towards better health. I knew I still wanted to get tested, and the information is redirecting my strategy (more on that elsewhere, some other time). But when I got the + result a few months ago, I curled up on the couch and did not really move much for the next four days. I'm still pretty depressed about it. I don't know whether that is rational or not. I'm just reporting how I've been feeling about it. I do see reasons for hope. Treatment would be amazing. Knowing what to go after could be a very good thing. I look forward to more studies and more research. And yes, it is better than not knowing.

    My greatest fear, as others have expressed, is regarding relationships. I'm single, but had started dating a bit again last year, as I gradually started to feel better. All of that has come to a screeching halt, at least for now. To be perfectly blunt, it kind of feels like the end of sex, the end of carefree dating, and even the end of relationships to some degree. I hope this is not the case and as I learn about how to protect a potential partner, this may change.
     
  18. Mithriel

    Mithriel Senior Member

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    Firefly, I don't know if it will make you feel better, but my husband of thirty seven years does not have ME/CFS despite me being sick when we married.

    Of course, I don't know if he has XMRV (or if I do!) but in all the years I have known patients, I have never come across a couple where one became ill after they got involved. I am not saying it doesn't happen but it is not common. Nowhere like AIDS.

    The normal HIV precautions should be enough. They are sensible anyway for a new relationship because you don't want to get an STD anyway.

    This is such a time of transition it is very difficult for you. In ten years time we will know where we are and there will be guidelines we can follow. I hope that you find a way through it all.

    Mithriel
     
  19. bullybeef

    bullybeef Senior Member

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    The way I see it is, I hope to be negative, not because I don't wish to believe XMRV is the cause or effect, but in the hope that me and my wife haven’t passed it on to my kids.

    However, if someone tells me I am XMRV positive, it will make no difference to how I currently feel in the short term. It will just become another label to define what is wrong with me. But it will change the perception of the disease in regards to how it is treated, meaning better research, which should equal better care and treatment.

    Whether we called it XMRV or something else (XAND?), it will mean little to our daily lives, but it could mean a lot to our recovery in the long term.

    What would be a worry is people diagnosed with ME but are subsequently found to be conclusively XMRV negative. That maybe a big problem in long term.

    The bottom line is, none of us are in a position to decide our own fate, but we can attempt understand the possible ramifications of an either/or scenario, and hopefully look to adapt physcologically to the new definitions of what ails us. Calling the same problem by a different name can become tough to contemplate, especially if the new definition (XMRV/XAND) means a serious mortality change in the understanding of the same problem we have faced for years.

    We have fought ME before XMRV, and we can all support each other in continuing the fight come what may.
     
  20. dannybex

    dannybex Senior Member

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    On another thread I posted a video where Dr. Peterson says in this question and answer session that in general he has not found a strong association when it comes mother to child, or spousal transmission:

    http://www.forums.aboutmecfs.org/sh...mp-XMRV-quot-Not-a-strong-association...-quot
     

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