ME/CFS and the Change of Seasons: How Does This Affect You?
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Discussion in 'XMRV Research and Replication Studies' started by usedtobeperkytina, Dec 5, 2009.

  1. usedtobeperkytina

    usedtobeperkytina Senior Member

    Clay, Alabama
    I need some help please. Many of you know a lot more about the science of CFS than I do.

    My sister is sick also. She was diagnosed with CFS in late 1980s / early 1990s. She later determined she has depression. Now she says she has dysautonomia and depression. When I talk to her about CFS, she doesn't embrace it. I think that when she got sick, there was so little known and she was told there is nothing that can be done, so that she just doesn't want to go back there again. But I have tried to inform her of the many discoveries and therefore, therapies have come about in the last few years. It's a different CFS today than back when she was diagnosed. I told her about XMRV discovery. She said, "But that's not me. What I have I have had since I was born." She said she remembers having trouble with fatigue as a teenager. She also got angry bladder problems as a teenager. So she doesn't think she caught something later, late 1980s, after she married. But it did seem to get worse then.

    Now, for me, I have had vasovagal hypotension since I was five. I faint when I am under sudden and severe embarrassment or pain. And I can look back and see subtle signs that something wasn't right for a long time. I had TMJ in my 30s such that I couldn't open my mouth but just enough to slide a fork in. I had depression in my late 20s. I had itchy rash on my knuckles for months that my doctor said was an immune response to dish washer soap, likely. I have had adult acne all my adult life. But it wasn't until I was 38 that I caught the virus that wouldn't go away, and fatigue problems started afterward. At first, the manifestation was associated with my periods. Two years later, I suddenly plummeted with signs of fibromyalgia also.

    So, I am trying to figure out if I had this from birth or very early childhood (because of the vasovagal thing) or did I catch the virus later.

    So you layman scientists, please explain to me how XMRV fits into the central nervous system problems. Mikovitz said XMRV can explain all the symptoms of CFS. But I wonder how the virus can explain the central nervous system problems. I understand how it can explain all the rest.

  2. usedtobeperkytina

    usedtobeperkytina Senior Member

    Clay, Alabama


  3. Senior Member

    It is thought that XMRV keeps latent viruses "awake." Many of those viruses are in the herpes family. EBV, CMV, HHV-6, HSV, etc... Those viruses are neurotropic, meaning they infect the nerve cells. When those viruses are reactivated in people with CFS, that can cause the neurological symptoms. For example, headaches, numbness and tingling, neuralgia.

    And hello... this is my first post here. I'm an RN, specializing in neuroscience. I'm wishing you good luck and good health.
  4. starryeyes

    starryeyes Senior Member

    Bay Area, California
    Hi faith, Welcome to the forum. :)

    Hi tina, I've been looking back more and more at my childhood too. I also used to faint from bad dizzy spells. I was blood tested throughout a full day when I was 5, my parents suspected that I had Epilepsy. All the docs found was low blood sugar.

    I used to get strange, itchy rashes on my fingers from time to time throughout my life. I've had insomnia since I was a toddler. I've had acne all my life since I was 13. I had strange fatigue issues starting at the age of 13 as well. All my life, out of the blue, I would suddenly feel very sick and my adrenaline would start rushing. This usually happened when I was away from home and eating foods I wasn't used to. I came down with chronic EBV after catching a flu when I was 20.

    Your question about how XMRV causes CNS problems is a good one. I can't find anything explaining it. Maybe someone here can.

  5. Lily

    Lily *Believe*

    Another nurse here, Tina

    Hard to say my dear, but if I was a betting person - I'd probably bet that your sister has CSF - dysautonomia really isn't usually part of depression. Ongoing fatigue, chronic cytitis and dysautonomic symptoms can certainly effect your quality of life and cause depression. Back then, I imagine that's all anyone had to suggest to your sister. Perhaps she feels there is less stigma with a depression diagnosis, than CFS, and at the moment it may be an important part of her coping mechanism. Maybe if anything comes of XMRV she will be more open to your urgings to review the diagnosis.

    As far as you - it's really hard to venture a guess with what little information you've have a lot of symptoms too that could stand on their own or could easily be part of fibromyalgia syndrome or CFS. For instance perhaps your vaso-vagal symptoms were really a form of dysautonomia. Hormones can also effect latent viruses. TMJ is often associated with FM. Sounds like the viral syndrome you had really jump started a cascade including fibro and morphing on into CFS. Not unusual from what I understand.

    I had a virus and never returned to my previous level of functioning....about 85% though, and sleep changed forever - not something a lot of people would notice other than me.....but within several months additional, more subtle, things changed - blood pressure, ankle edema, some OI, and within 2 years sudden full blown fibromyalgia - OUCHIE!....after about 9 months a sudden serious neurological development prompted a diagnosis of MS, and then continued decline into CFS (without any further MS episodes or lesions). All very fast - 2 years from virus to fibro, then 1 year to MS and I think I was slipping into CFS then, but in 3 more years I could no longer work. But not because of MS. Totally CFS.

    It's always possible you had something going from childhood, but the decline after the obvious virus you had makes the most sense to me as a starting point based on what you have said, but there would be lots more questions to ask.

    So there you go - hopefully some of the science gurus will chime in for you. Maybe you can elaborate a little more on symptoms. Ever have abnormal thyroid levels? Mono?

    From what I've read on here and from what I remember on ProHealth, you are still hanging in there - pushing through. I know you feel yourself declining though, and I know what that feels like. It's just something you feel...others can't see it as easily. It's scary, huh.

    We'll be here for you,

  6. Hi everyone.

    I wanted to ask whilst we're on the topic of viruses and neurology........

    Do 'High Titres' against viruses for HHV-6, CMV, EBV, Entero etc show an infection? (E.g levels way above allowed maxium in normal range).

    I had this result for HHV-6b (PCR) at RedLabs, and when I showed my GP I was told it was nothing and everyone has it.

    Looking at HHV-6 foundation, they say.........

    ''There are two distinct variants of HHV-6. HHV-6A is the strain most likely to be found in MS, CFS and AIDS and cancer patients. HHV-6B causes roseola, febrile illnesses and encephalitis in infants and reactivates in transplant patients, causing complications such as encephalitis, pneumonitis and liver failure. HHV-6B infects close to 100% of children by the age of two, causing mild flu-like symptoms and rash in some, but occasionally progresses to high fever, encephalitis and seizures. In most cases, the virus goes into latency. However, in patients with impaired immune function, the virus may persist in its active state at low levels for years.''

    HHV-6 is neuro invasive and I've got a neuro disease and Dysautonomia/POTS.
    I'd like to fantasise that HHV-6 in me could be causing an issue and treated with anti viral drugs.

    As I'm sure everyone else who has positive test results for 'common infections' wants for themselves also.
    (If they could find a doctor and have tests).

    Thank you,
    Yours in numb feet-face-ness..
  7. Alesh

    Alesh Senior Member

    Czech Republic, EU
    From my personal experience with CFS I think the WHO classification of CFS as a neurological disease is correct. If the causative role of XMRV in CFS is true I would say I have XMRV-related encephalopathy as it is so much similar to HIV-related encephalopathy.
  8. usedtobeperkytina

    usedtobeperkytina Senior Member

    Clay, Alabama

    Well, I know that the dysautonomia, which I know I have had since five is highly associated with CFS (see Komaroff's study, I think published in 2005). So my thought, pre-XMRV discovery, was that the core original defect was somewhere in the central nervous system. My thought was that I was born with the CNS defect. And the manifestations were mild, until I was 38 and got the virus, which pushed my weak system into CFS, gradually declining until two years later when I developed FM.

    But, now I wondered if the CNS problems have nothing to do with it and I just caught XMRV when I was 38.

    But now, my theory is this:

    I either got XMRV from my mother (most likely), a vaccine or the virus itself when I was a child. My sister got the XMRV also. It first caused problems in my central nervous system. But I was energetic. So I would be like the many of people who now have XMRV but don't have any symptoms that are not just ranges of what healthy people get, adult acne, rash every once in a while, TMJ, etc. Then, another virus, along with the hormone situation of my age and the stress I was under caused the virus to make me much sicker. But that doesn't mean that is when I caught the virus. But it is when the virus made me severely sick.

    So, I think for my sister, who got sick at a much earlier age, I think she too was likely born with it.

    Or it is possible we acquired it soon after birth, but it didn't do much.

    I think the key is that they (and you know who "they" are) say that many have the virus and show no symptoms. Maybe they do, like I did, including fainting, acne, etc, but they don't have the CFS symptoms.

    Well, that's my theory, and I'm sticking to it.

    And, I am trying not to push myself. I was recovering well until I got the flu in October. A week later I had a CFS relapse. Before that, I could go out, run errands, etc. for five hours, then do computer work the next day and light housework. Occasionally, like once every two weeks, I would have a bad fatigue all day, day, but I was better the next day. And then I would have bad fatigue days, about three, with my period.

    But, in October, I had a week and a half where I was down for the count. You know, in bed all day, dragging, etc.

    But I think I am beginning to climb out of it now. My goal is to stay home two days for every one day I am out and about. And take at least, sometimes two, rest periods each day of no sensory input, just on the bed eyes closed with my rest buddy, Little Kitty.

    Thank you for your responses, especially the nurse that explained about the weakened immune system allowing other viruses that do affect the CNS to flourish.

  9. Navid

    Navid Senior Member

    Great Summary Levi


    Wow, this is a great summary...and exactly how my condition progressed....altho knock on wood i haven't had huge problems with brain fog... i don't put my brain to the tests that it use to have while working full time.

    i got a little chuckle when you said no just lose biggie, right : )

    when i i was first dx'd w/cfs...i scorned the dx...since there was no treatment and no explanation as to what caused it. that sent me down the road of a lyme disease dx...i tested inconclusively w/igenix...but accdg to llmd's had clinical symptoms...altho i never recalled a tick bite. i grabbed onto this dx w/gusto because there was treatment and a root cause. in hindsight...this was a big mistake the 2+ years of various iv abx only made me sicker. now i'm back to the cfid's dx...i also match:):) the profile of a cfid's person better than a lyme here's to finding the root cause and a treatment : )

    regards, lisa
  10. kurt

    kurt Senior Member

    Not everyone who is sick will buy into the CFS explanation. There are so many conflicting views in medicine, I think sometimes people are not ready to accept the truth.

    Anyway, I would not try to sell anyone on the idea that the XMRV finding somehow validates CFS, or use XMRV as a tool to sell the idea of CFS to someone. CFS has been validated many times over the past 6-7 years, without XMRV. Also, I am very skeptical of the XMRV explanation and believe it will eventually fail. We do not even know if XMRV is fully represented in the CFS population. One early replication report (From Berlin) suggests it is not.

    I realize that Mikovitz believes XMRV can explain the WPI findings on the virachip (They found a cluster of HHV viruses in most PWC, which would require an immune dysfunction of some sort). But there could be other explanations as well.

    Anyway, since you asked, I know of one possible direct mechanism for the CNS if XMRV or a similar retrovirus really is involved. Right after the Science article I studied the prostate cancer studies, and one study suggested that XMRV infects neuroendocrine tissues in the prostate. That might be the 'smoking gun' if XMRV turns out to be part of CFS, because the CFS research community has known for a long time that there is an unexplainable HPA failure in CFS, and those systems all contain neuroendocrine tissues.

    The idea that some part of CFS is in-born makes a lot of sense. And my guess would be that the in-born part of the pathology is in the HPA system, particularly in the hypothalamus, in the brain. The hypothalamus regulates part of the immune system and controls pretty much every major body system that provides symptoms in CFS. Somehow the hypothalamus is involved in CFS, either as a direct cause or through a dysfunction due to various triggers to the HPA. What if many PWC have some type of deformity of the hypothalamus? That would be pretty invisible to us externally.
  11. ramakentesh

    ramakentesh Senior Member

    Actually it is far from clear how XMRV - assuming it is eventually proven to be a causal factor in CFS may impair the autonomic nervous system or even if we are talking about dysautonomia.

    The criteria used by the Whittlemore clinic for their CFS patients included autonomic dysfunction (including forms of dysautonomia such as POTS or NMH) and/or exercise intolerance so there is a possibility that some peopke with primary autonomic disfunction may have tested positive to XMRV in the study.

    There are many mechanisms that may cause dysautonomia but they are really on conjectural at this stage - no causal factor for presentations like POTs have been proven - therefore its hard to demonstrate how a retrovirus could cause these problems.

    Direct damage to the sympathetic/parasympathetic systems through receptor damage is unlikely. Autoantibodies to a3 Acetylacholine receptors have been identified in 15% OF patients with POTS but chronic inflammation can result in the release of a variety of vasoactive chemicals such as Tumour Necrosis factor alpha, substance P and C-reactive protein, all w
    Which can result in abnormal circulatory control at the endothelial level.
    Impaired norepinephrine reuptake is implicated in POTS and to a lesser extent CFS. Hypermethylation of the Norepinephrine transporter gene has been implicated in this form of POTS. If this were the case, its possible that XMRV causes an epigenetic change to the NET gene in the same way that HIV has been found to cause epigenetic changes to the NET gene.
    Increased chronic inflammation can also cause reduced catabolism of angiotensin II, lowering blood volume and potentiating the effects of norepinephrine to orthostatic challenge.

    In short, any one who is suggesting how XMRV effects the central / autonomic nervous system is jumping the gun on three levels:

    1. its not proven XMRV causes CFS
    2. its not proven that CFS results in the circulatory abnormalities found in POTS/NMH in all cases or that these are the same entities, and:
    3. its unknown what causes POTS/NMH
  12. parvofighter

    parvofighter Senior Member

    XMRV and CNS Dysfunction - the INDIRECT route

    @rama - you're quite right in stating that the XMRV/CNS link is still nebulous.
    However, there are known and abundantly documented linkages to CNS dysfunction from the opportunistic infections associated with ME/CFS - that may in turn prove to be chronically "reactivated" by XMRV. And of course XMRV may have its own potpourri of impacts on the CNS. Strictly speaking, there is no XMRV/CNS link - yet. Although I agree your answer is technically accurate, your quote below misstates the reality that ME/CFS IS currently associated with neuro abnormalities:
    @usedtobeperky: Have you been tested for opportunistic infections? There are several associated with CNS involvement, and one known mechanism is through endothelial inflammation - inflammation of the inner lining of your blood vessels. But there are many others. For a little more on viral CNS involvement - particularly viruses associated with ME/CFS, here are a few links, representing just the tip of the iceberg in this well documented field:

    In other words, indirectly, the ME/CFS link with CNS dysfunction is compelling and abundant, has been known for years - through the research on opportunistic viruses. Keep in mind also that the spectrum of severity is profound. It's easy to get freaked out by the the viral/CNS research.

    More helpful perhaps is to keep methodically moving forward. Get tested for XMRV when you're convinced of the science. Rule out/diagnose opportunistic infections. Get treated. This is all coming down the pipe for XMRV (if it is proven to be causal in ME/CFS), and in the case of opportunistic infections, there are already some treatments available.
  13. XMRV doesn't cause CFS by definition of what CFS is. CFS is a syndrome (not a disease), meaning we don't know why people suffer from 'long term tiredness'. There are millions of reasons to suffer from long term tiredness - both physical and psychological.

    XMRV cannot possibly explain CFS. No one is expecting it to. :p
    XMRV explains some people - with the misdiagnosis of CFS? Yes.
    Because once the cause of their disease is know, it's no longer unexplained!

    As CFS is unexplained, XMRX+ patient, cannot have CFS - by logic and by clinical diagnosis.
    XMRV is linked to serious and degenerative neuro immune disease and cancer, and studies are on-going. XMRV infects cells, we know T&B Cells and probably brain cells.. We need autopsies.

    CFS is a heterogenous disorder, including mental illness.
    XMRV is a retrovirus and nothing to do with mental illness.

    Oxford 1991 CFS Criteria used in UK for 2009 'CFS/ME'

    'A syndrome characterized as 'fatigue' as the principal symptom'.

    'No Specific Symptoms'.

    Patients with Schizophrenia, manic depression, drug addiction, anorexia, hyperventilation syndrome depression, anxiety disorders - are not 'necessarily reasons for exclusion'.

    The symptom of fatigue, should have been present for at least half of the time in the last 6 months.

    'There are no clinical signs characteristic of the condition.'

    That cannot, or ever be XMRV.
    That cannot be used also to describe CNS dysfunction or Dysautonomia.
    As Hilary Johnson correctly says, you need the correct cohort.

    However, in 'CFS' there is no correct cohort, as 'CFS' is not a single
    disease caused by a single pathogen. XAND is. It's 'X' associated,
    and the 'X' comes from XMRV - from a blood test, not a theory.

    I am increasingly sure the people annoyed at each other
    (XAND patients Vs those who have CFS and like having CFS label and agree to the label CFS) will soon be getting a divorce!!!! :eek::cool:

    We disagree we each other, because we don't have the same condition, pathology or disease.

    Dysautonomia and CNS dysfunction is seen in diseases from Diabetes to Primary Biliary Cirrhosis, traumatic brain injury - to those told they have 'CFS/ME' - who will end up having XAND.

    Dysautonomia is a clinical diagnosis of neurological dysfunction that requires a TILT test in a hospital. If you have Dysautonomia (which copies practically every single symptom of 'CFS/ME') - then you don't have CFS/ME.

    CFS is just one symptom of Dysautonomia.
    You could argue, CFS is one symptom of XAND. :rolleyes:

    But if you did, you'd be arguing a collection of symptoms due to a disease process of XMRV. And so XMRV, could never be CFS. So there's no point waiting for any study to 'prove' XMRV causes CFS, due to info just given.

    As I've said so many times before, all the stress, arguments, disagreements and bad feeling between people on here - is due to Psychiatry, illegally occupying people's human rights, who don't have CFS.

    If this had never happened, we could leave CFS as a theory, and leave patients free to 'theorize' they have a mental health issue -without getting upset about it because we have a potentially fatal disease that destroys our immune system, and even abilty to stand up, never mind get out the front door. :(

    Mixing theory with retroviruses was always going to end in tears, for all of us.
    Yet some peoples tears are more dangerous than others.
  14. Navid

    Navid Senior Member

    I am increasingly sure the people annoyed at each other
    (XAND patients Vs those who have CFS and like having CFS label and agree to the label CFS) will soon be getting a divorce!!!!

    pretty funny...but i'm sure oh so true.

    i never wanted to be married to "cfid's" it was an arranged or shotgun that i may soon find my true soul partner, i will have to leave my old "man" behind...sorry, but you never were who i wanted anyway.

    (i even cheated on cfid's w/lyme for awhile but the treatments lyme brought with him made me much, much worse. so i went begrudgingly back to my first mate.)

    i was told because i had:

    unexplainable fatigue
    unrefreshing sleep
    early morning anxiety
    diastolic dysfunction
    and a myriad of other strange symptoms

    that cfid's was my guy......we however will soon part ways.

    hopefully my new partner... will come w/some new treatments to help me feel better again.

    can't wait for my divorce to become final : )

    this note is meant to be funny...hope noone takes offense...somtimes it's hard to get the tone in email...i think i read somewhere that there should be a sarcasm font for email...good idea!!!!
  15. Alesh

    Alesh Senior Member

    Czech Republic, EU
    Yes, but we should not forget that all major so called "mental diseases", like schizophrenia, major depressive disorder, bipolar disorder, OCD, are in fact neurological diseases, by other words organic brain diseases. In fact the very word "psychiatry" is not consistent with scientific knowledge. The word "psych" denotes the "soul". But no branch of any biomedical science knows of any "soul".
  16. Lily

    Lily *Believe*


    Well I thought it was funny and quite clever!!!! thank you!!:D:D
  17. lebowski


    "XMRV is a retrovirus and nothing to do with mental illness"

    u cant know this yet .. no one does .. what they do know is when they give interferon for hepatitis some patients kill themselves due to med/inflammation related depression and they can control this with antidepressants .. i d read much about chronic inflammation - depression causation long ago , i think that info is still on web for anyone who wish to explore .. for me the most reasonable theory that explained depression was the sickness behaviour theory ..

    so saying that depression is a kind of me/cfids is not putting anyone in the psychiatric waste basket but to take those mentally ill ppl out of " nothing can be done for u other than tranquilizing u " basket ..
  18. cfs since 1998

    cfs since 1998

    You keep saying this over and over like a broken record. Sorry, but if the Incline Village cohort is found to have XMRV then CFS *IS* XMRV. If you don't have XMRV then you don't have CFS. A faulty criteria is just that; a faulty criteria. The name goes to the illness which received the name. You can't rewrite history, you can't make up a disease and then try to fit people to it.
  19. flybro

    flybro Senior Member

    I'm scared I'm going to get squashed with this but here goes.

    'You can't rewrite history, you can't make up a disease and then try to fit people to it' I thought this is what the CDC did do.

    It certainly seems to be what the psychiatric lobby in the UK are doing.

    The 'CFS' label seems to be a holding pen, for Medically Unexpalined Symptoms.

    If the original Incline cohort all have XMRV, they will be taken out of the CFS 'holding pen and put into a treatment pen labeled XAND where they will get treatment for XAND.

    All the people that don't test positive for XMRV will still be left in the CFS holding pen which there is no treatment for in the UK apart from GET & CBT.

    Also new people will continue to be added to the CFS holding pen, after they have been excluded from being XMRV positive.

    I beleive CFS will remain the holding pen for a diagnosis of exclution leaving only ppl with Mediacaly Unexplained Symptoms.

    Squash me gently if I've got it wrong.

    Running around chucking everyone a hug, and now ducking......
  20. cfs since 1998

    cfs since 1998

    What I meant was, "The CDC and UK psychiatric lobby can't rewrite history or make up a disease and fit people to it, so we shouldn't let them."

    No, let's not say that CFS can be whatever politics wants it to be. The disease of the Incline Village patients was named CFS. The Incline patients have CFS by definition because CFS was coined to name the disease the Incline patients have. If those patients have XMRV, then we can say CFS is caused by XMRV, and CFS will be a deprecated, obsolete name for XAND.

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