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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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Does a normal brain MRI mean NO XMRV?

Discussion in 'XMRV Research and Replication Studies' started by roma, Nov 8, 2010.

  1. roma

    roma

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    we all know XMRV is a retrovirus which replicates and infects the brain cells and that's why people have lesions one could say that the virus is eating the brain which makes me think that people that have had CFS for years but have normal brain MRI probably don't have XMRV otherwise it would show some sort lesion or white spot on the brain MRI this is just a thought im not sure if this makes sense, another thing im having a hard time understanding is how can some healthy people have XMRV as shown by the study, how can one have this virus and not be sick or have some sort of symptoms while other are bedridden.
  2. Jemal

    Jemal Senior Member

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    It doesn't mean you don't have XMRV. There are no standard physical tests yet that definitely prove if someone has CFS/XMRV, unfortunately. This is a curse, as even after about thirty years, there's still discussion if someone is just depressed or has CFS!
    It's true that a MRI does seem to show some weird lesions in some CFS patients, but certainly not all.

    We don't know yet how this virus works and where it likes to hang out in the body. We do know from other viruses that they can cause different symptoms in different people. There are also many examples of people infected with a virus, who don't develop symptoms.

    Take HIV for example: there are people who can control the virus, because their immune system is somehow able to supress the virus. Also one person infected with HIV can get AIDS within a year, while another might get AIDS only after seven years. Factors like the immune system, genetics, our diet, coninfections, etc play a very big role.

    Another example is Epstein Barr virus. About 95% of the adult population is infected with this virus, but only a small percentage has had symptoms.

    As a general rule of thumb:
    If a virus has infected a larger population group, you will be seeing more people with symptoms.
    If a virus only causes disease in 1% of the population, it makes a big difference if 5% of the population is infected or 50%.
  3. George

    George waitin' fer rabbits

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    Can I ask where you are getting your information please? I don't mean to sound contentious so please take this with kind thoughts. I haven't seen any science showing that XMRV is in the brain at this time. There is knowledge that this virus does code a protein that is capable of crossing the blood brain barrier in MICE and has the potential to get stuck on neurons in the brain. The sticking activates the cleaner "glial" cells that come to try to clean up the neuron. In MICE the protein is often to large to clean and so more and more glial cells converge eventually killing that particular neuron. However, the brain can and does produce more neurons over time. Your statement above that "we all know" worries me cause we don't know anything like this at all. And if you are taking it as conventional wisdom then others are too and it just ain't so. (grins)

    Brain lesion normally show up on SPECT scans and not so much on MRI's. The studies on lesion in ME/CFS show that they shift over time which would be in keeping with XMRV model. (PVC-211 mouse model) however there is no scientific work to show the lesions are a result of XMRV just a lot of speculation. If you read up on MLV's and what they do in mice you would probably just ask the government to shoot you cause MLV's "can" be nasty. But we know from our community that ME/CFS affects all of differently and while we may not like what we end up with we do manage adapt and survive.

    On a speculative note there has been consideration that XMRV, if it causes the lesions via the PVC-211 mouse model, may show up more severely in those who have a higher viral load. If every person has a different immune system rating from 0 (dead) to 10 (genetically healthy and healthy lifestyle) then XMRV may affect people differently. XMRV in a 10 would get wiped out and the person would go on and never know they came in contact with it. One the other hand someone who has a poor (4) immune system or one that's been hit recently with stress, illness or has a lower response due to genetics may not be able to fight XMRV and so it goes in and is able to replicate creating illness symptoms and eventually cross the Blood brain barrier with large amounts of viral proteins that gum of the brain works.

    Right now we don't even have confirmation that XMRV is causal for ME/CFS and nothing on how it affects people at all only a lot of hypothesis.

    I hope that helps with the understanding stuff. If I've made a hash of it let me know and I'll try to be more clear.
  4. LJS

    LJS Insert Witty Comment Here

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    I have had three brain MRI's, all normal and I tested positive for XMRV. I think we are getting ahead of ourselves, we still know basically nothing about XMRV, if it causes disease, and most importantly how to properly test for it. It is important to note that XMRV may not cause any disease, it may just be one of the thousands of viruses we carry around.
  5. omerbasket

    omerbasket Senior Member

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    It is possible, but if the numbers of the WPI and the NIH/FDA (MLV-related viruses) studies (98% ME/CFS patients with XMRV, only 3.7% of the healthy people with XMRV; 86.5% ME/CFS patients with XMRV, only 6.8% of the healthy people with XMRV) are even somewhat close to be correct, I think that it is highly unlikely that it is just an innocent passenger. It's true that people with ME/CFS have a dysfunction in their immune system, but I don't really remember such numbers being found regarding any of the other pathogens that were looked at in ME/CFS patients (what's important here is the gap between the percentage in the ME/CFS patients and the percentage in the healthy people, because even if, let's say, 98% of ME/CFS patients have EBV - 95% of all people have it, so the gap is just 3%, not 94.3%/79.7% like we have in those two studies). Do you know of any other studies about ME/CFS that found such gaps?
    Besides - XMRV is a retroviirus (and the two other human retroviruses known today can cause serious diseases), and MLVs in mice cause serious diseases - although it is true that these are just clues, not more than that.
  6. roma

    roma

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    you are right!

    yeah you are totally right we do not know enough about this virus yet i was merely speculating and assuming that since it is in fact a retrovirus like HIV and HTLV and both of these infect brain cells then i am just assuming that XMRV would do the exact same thing i have read in several places that most people that have CFS and if it's in fact caused by XMRV have some sort of neurological problem which means the virus most likely is in the brain, while i admit that i am getting ahead i can tell you that XMRV does in fact cause health problems maybe some people for some reason keep the virus in check but for others it is a daily battle, i know of at least a few people that thought they had been infected with HIV after having unprotected sex and kept testing negative for HIV after many months sometimes even years thinking they had some sort of weird new HIV strain because they have had many health problems including OIs and finally this year tested positive for XMRV so i can assure you XMRV does cause problems, i haven't tested for XMRV yet mainly because im still trying to convince my doctors that there's something wrong with me because apparently i don't look sick but when i test and if i come back positive i will let you know how i got infected and all the symptoms and health problems this has giving me which i had never seen or felt in my life before..
  7. HowToEscape?

    HowToEscape? Senior Member

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    Whatever the cause, lack of brain damage is something to feel good about!
  8. Jemal

    Jemal Senior Member

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    True. Brain damage fortunately does not seem to be a symptom amongst CFS patients.

    At the moment there's a very thin connection between XMRV and certain forms of Alzheimer's however. And XMRV and autism. So it's possible that XMRV does cause problems in the brain.
  9. garcia

    garcia Aristocrat Extraordinaire

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    Highly, highly unlikely give everything we know about retroviruses and murine retroviruses in particular. Neither HIV nor HTLV (the other two exogenous human retroviruses) are benign. Murine retroviruses have been studied for decades. We have a good body of knowledge about them. They are anything but benign.
  10. MarxyGrouch

    MarxyGrouch *****

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    yeah,

    Not only are they NOT benign, they also tend to cause a disease prgression that is eerily similar to CCC ME/CFS. Too much so to be mere coincidence. Too bad people spouting theories of opportunistic infection are too lazy to actually look at the huge body of research on CCC ME/CFS and the real deficiencies and abnormalities that have been found, and then compare to MuLV research.

    Calling all scientists that are not lazy and corrupt please!
  11. ukxmrv

    ukxmrv Senior Member

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    I am XMRV+ and have an abnormal QEEG reading. Maybe this would be somewhere that potential brain damage would be shown?
  12. shannah

    shannah Senior Member

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    I have numerous brain lesions as evidenced on MRI's with severe cognitive dysfunctiion all with what appears to be an essentially normal SPECT scan (although they did say that all anomalies may not have been picked up).

    I've always been of the understanding that abnormal MRI's and SPECTs were common with us. Anyone else?
  13. Jemal

    Jemal Senior Member

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    I never had a MRI before. The doctors have done a lot of basic tests on me and didn't find anything spectacular. I have stomach ulcers, I had a vitamin D deficiency and I had low levels of B12 (but not deficient). I think the low vitamin D and B12 levels are something that do popup regularly? Stomach problems also seem to be a symptom that pop ups now and then.
    Also I have the idea my testosterone levels are low and will push to get that tested. I have heard that many men with CFS have low testosterone levels. If XMRV is involved this would make sense as the body will produce less testosterone, when a pathogen is detected by the immune system. The energy conserved by not producing testosterone is then used by the immune system to fight the pathogen.
  14. ukxmrv

    ukxmrv Senior Member

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    Shannah, I've not been able to get a SPECT here in the UK, however I was a patient of Prof Brostoff. He published a paper on abnormal SPECTS in CFS.

    There's a bit about SPECT's on this page, inlcuding this from Komaroff et al

    Summary: "This study shows that CFS (ME) shares some similarities on SPECT imaging with AIDS Dementia Complex acute changes in radionuclide uptake in the younger population may be caused by inflammatory processes at the cellular or micro vascular level .... the findings in CFS (ME) are consistent with the hypothesis that CFS (ME) ... results from a viral infection of neurons, glia or vasculature .....viral infection can provoke neurological dysfunction by interfering with intra-cellular mechanisms or membrane transport systems .... or by cerebral hypo perfusion due to vasculitis".

    http://fm-cfs.ca/CFS_spect_scans.html

    =====


    I've met other patients with abnormal puncate lesions on MRI's as well. Professor Puri at Hammersmtih has been doing some work but I think that his major MRI study has been stalled?
  15. Enid

    Enid Senior Member

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    Lack of brain damage sounds something to celebrate (my scan high signal changes and enormous cognitive problems - since reversed - so resolves with nothing permanent) Viral, viral, viral.
  16. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Maybe way it is read also. I think I remember reading in Osler's Web that some who read the MRIs of CFs patients in 80s thought nothing of the lesions. They were small and not thought of as abnormal since the lesions can also be seen in people in their 70s. Problem was, this was occurring in people in their 30s. Because these little lesions occasionally occur in what is thought of as healthy people, they didn't label it as abnormal. Makes you wonder if those people who were healthy but have these little lesions are infected with virus also. How many absent-minded professors are infected?

    So just because someone says yours is normal does not mean it is. If the person reading it doesn't recognize it as associated with disease, they will not say it shows disease.

    Tina
  17. shannah

    shannah Senior Member

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    Jemal,

    Interesting ... my son's is extremely low. Is this published somewhere? Do you have a reference or link available to this information?
  18. shannah

    shannah Senior Member

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  19. Recovery Soon

    Recovery Soon Senior Member

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    Lesions on the brain are the hallmark symptom of MS. I didn't show any when I had an MRI with contrast when my CFS acutely onset 4 years ago. My brother and sister both have MS- so I will be having another MRI soon to rule it out again.
  20. shannah

    shannah Senior Member

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    They may be the hallmark symptom of MS but after seeing 2 different MS specialists (neurologists), both ruled out (85% certain) MS for me syaing that my brain lesions were in the 'wrong place' - not typically the same areas of the brain where the lesions in MS appear. I do have a lot of MS symptoms though.

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