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CNS and XMRV

Discussion in 'XMRV Research and Replication Studies' started by usedtobeperkytina, Dec 5, 2009.

  1. flybro

    flybro Senior Member

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    pluto
    Hi CFS----1998
    I promise to learn to use 'mini quotes soon', ya big show-off.

    But, if CFS becomes obsolete what of those that have a current diagnosis of CFS that do not test positive for XMRV, will they be relabled Somaforms.

    The joy of Reeves being taken out of the equation re: validation trials, the trias having gone to the HIV/AIDS department. I beleive this would be pretty much protocol, for the detection and treatment of XMRV.

    Will people that have been diagnosed with MS, become XAND, or MS & XAND?

    Will we become if positive XAND & CFS patients?

    Also people with Autism, same question XAND & Autism, or XAND pstients.

    Somtimes it feels like trying to get your head around quantum mechanics, & I never did.

    Hopefully you can at least tell if my questions make sense.

    Cheers
  2. V99

    V99 *****

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    In a logical world, those ME patients not diagnosed with XMRV, would be not labelled somatoform. As the cause is unknown, and somatoform disorders are impossible to prove.

    Could it be that they have another Retrovirus?

    Research should therefore begin into the biology of the disease or diseases that that group is suffering from.

    Unfortunately, it has been proven that those with a great deal of power in the medical establishment are unable to apply such a cold logic.
  3. cfs since 1998

    cfs since 1998 *****

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    I really don't know. If 100% of Incline patients have XMRV, then I would argue that the people with a diagnosis of CFS that are XMRV negative have the wrong diagnosis. Either they really have something else, or they have a new mystery illness that would need to be named and described in scientific literature.

    I agree with these points.
  4. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Thank

    Thank you for the responses.

    As for other infections, EB showed elevation. Human parvo virus, I showed a previous infection. The doctor who found that said the inflammation I showed ( I suspect she didn't believe in CFS as a separate, organic illness ) may be a hold over from a recent parvo infection. Nope, I didn't buy it. I hadn't had virus symptoms ( respiratory or rash, seen with human parvo) for two and a half years. So, I figure what she was seeing was an activation of the latent virus.

    So that's two for me, that I know about.

    I have my answer. Thank you.

    And as for CFS people having CNS or XMRV, that's just semantics. CFS included XAND people before we knew XAND existed. I would imagine that if 4% of healthy controls have XMRV, that likely a good 70% of those with CFS (even the government definition) have current or previous XMRV infection. I believe, since there is a range, that most of the people diagnosed with CFS are sick from the virus. Some severely, some not so severely. And, others are having mild symptoms, as I did for years, who do not have the CFS diagnosis.

    I think it is much more likely that millions of people diagnosed with depression actually have XAND.

    Tina
  5. _Kim_

    _Kim_ Guest

    [​IMG] The sheet of paper allows you to put QUOTES around a phrase

    Each mini-quote needs to have quote tags at the beginning and end of the text. So, if you're breaking up a longer post, you'll probably have to add some of the tags manually.

    End of text needs a [/quote] tag
    Beginning of text needs a
  6. ramakentesh

    ramakentesh Senior Member

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    My diagnosis of either CFS or POTS related purely to which doctor I went to - an normal doctor and a physician told me I had CFS with abnormal 'hyperadrenergic presentations'.
    I didnt even connect my dizziness to posture because other weird things were happening as well - sensitivities to just about everything and inability to deal with stress or exercise - even busy environments brought out my symptoms.
    I did a tilt table test and got diagnosed with POTS and then just told that all my varied symptoms were now POTS rather than CFS. Another doctor said I had both even though the presentations were prettymuch the same - I am tired all the time, i have visual accommodation issues, sensitivities and brain fog and reduced blood flow to the brain.
    I think that if CFS patients went to dysautonomia specialists chances are many would be diagnosed with these conditions - but its just a new label for the same thing LOL
  7. flybro

    flybro Senior Member

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    Did it work

    Same here ramakentesh
    Cheers for this advice Kim, this is me trying it.


    usedtobeperkytina
    I agree Tina


    if it works I am so going to be showing off my new skill. BIG SMILEY FACE HERE Allthough this post took at least 10 minutes for me to do LOL
  8. Dan

    Dan

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    Depression is no doubt part of CFS and many other conditions/diseases. I wonder what mechanisms a retrovirus like XMRV could employ in causing the type of depression that is mediated biologically, as opposed to the obvious depression that we'd feel from being tired and sick all the time. My conviction that endogenous depression was easily a part of CFS was cemented when i tried interferons for my CFS. The connection between the immune system and our moods became very clear. The side effects of interferon alpha mirrored what I often encountered spontaneously, both physically and mentally. I wonder what potential ways this virus might affect our mood. Through lymphokines and the well known response to a pathogen or in a more direct way? Any ideas?
  9. V99

    V99 *****

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    Dan

    Depression is not a part of ME, it is something a few people will get because of it. I've never had it. It is no different to the depression in patients with MS, cancer, etc
  10. Dan

    Dan

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    Maybe I wasn't clear. I apologize for that because this is also a touchy subject with me. If you search any journal database you will find there is a high incidence of depression in fibromyalgia and in CFS. There is also a high incidence of depression in autoimmune disorders and in infectious diseases. There is an incredibly large body of evidence to show that the immune system, when activated against a pathogen or the host as in autoimmune disease, will result in severe mental depression.

    Never mind the fact that having your life altered by this thing is enough to cause you to be extremely, intractably sad. I'm talking about the direct effect of the immune system or even a virus itself on the vegetative aspects of the brain that control our moods.

    If you think I'm saying that psychogenic depression can cause CFS/ME, you are mistaken. IMHO,to say that depression is a an uncommon experience with CFS is disingenuous and counterproductive to the resolution of what is clearly NOT a psychosomatic disorder. I can't see denying that truth as a means to hide from the ignorance of various psychobabble merchants who cannot comprehend the tight relationship between the immune/endocrine/cns systems.

    One of the only effective ways to fight the ignorance that places etiology of CFS/ME at the psychological mind is to note the landslide of scientific evidence for the interplay between pathogens, innate immunity and mood/affect/"sickness behavior". To try to evade the reality only plays into the hands of people who want to take the easy way out and imply that this physical illness has a psychosomatic origin.
  11. gracenote

    gracenote All shall be well . . .

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    literature on CFS and depression

    Hi Dan,

    I think you make some very good points. Do you have one or two articles you can refer me to that you think describe this in CFS the best?
  12. Dan

    Dan

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    Hi Gracenote,

    There are so many studies linking depression to the immune system that published meta-analysis is probably best to offer. I'll see if I can find a good overview. Here are some decent ones on just the relationship between cytokines and cns function. If you use the search term "cytokine+sickness behavior" you will be lead to hundreds of studies. There is one meta-overview about CFS, in particular that is particularly nice. You may have already seen it..looking for it...

    Cytokines sing the blues: inflammation and the pathogenesis of depression.
    Trends Immunol. 2006; 27(1):24-31 (ISSN: 1471-4906)

    Raison CL; Capuron L; Miller AH
    Department of Psychiatry and Behavioral Sciences, Emory University School of Medicine, 101 Woodruff Circle, Suite 4000, Atlanta, GA 30322, USA.

    http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6W7H-4HNSJM9-1&_user=10&_rdoc=1&_fmt=&_orig=search&_sort=d&_docanchor=&view=c&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=f583d72c5d7b58d80feb20219c24af63

    Twenty Years of Research on Cytokine-Induced Sickness Behavior*
    Robert Dantzer1 and Keith W. Kelley2
    1Integrative Immunology and Behavior Program, Laboratory of Integrative Immunophysiology, Departments of Animal Sciences and Medical Pathology, University of Illinois at Urbana-Champaign, IL, USA
    2Departments of Animal Sciences, University of Illinois at Urbana-Champaign, IL, USA

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1850954/



    Psychol Med. 2004 Oct ;34 (7):1289-97 15697055 (P,S,G,E,B)
    [Cited?]
    Production of pro-inflammatory cytokines correlates with the symptoms of acute sickness behaviour in humans.
    [My paper] U Vollmer-Conna, C Fazou, B Cameron, H Li, C Brennan, L Luck, T Davenport, D Wakefield, I Hickie, A Lloyd
    Department of Human Behaviour, School of Psychiatry, University of New South Wales, Sydney 2052, Australia. ute@unsw.edu.au

    http://lib.bioinfo.pl/pmid:15697055














  13. Dan

    Dan

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    Hi Again Gracenote,

    Here are some that relate to cytokines and cfs and fibromyaliga directly, as well as several more that address cytokine activation and cns symptoms alone. Some of these may not be sufficiently relevant for everyone. Cytokines are proven to be prominent architects of the symptoms of automummine disorders and infectious disease. They are well known mediators of myalgia, fever, tissue destruction and symptoms of depression. They are the first things to be released in response to a viral infection.

    Again, though, I am saying that in a world where such a well established link between the immune system and behavior exists , I'm surprised anyone would argue the idea that psychological pain and its manifestations are not easily not a part of --and not the cause of -- a serious physical illness like CFS/ME/Fibromyalgia/Post Viral Fatigue Syndrome and related conditions.

    Plasma cytokine fluctuations over time in healthy controls and patients with fibromyalgia.
    Exp Biol Med (Maywood). 2009; 234(2):232-40 (ISSN: 1535-3702)

    Togo F; Natelson BH; Adler GK; Ottenweller JE; Goldenberg DL; Struzik ZR; Yamamoto Y
    Pain & Fatigue Study Center, Department of Neurosciences, UMDNJ-New Jersey Medical School, 1618 ADMC, 30 Bergen Street, Newark, NJ 07103, USA.

    Circulating cytokine levels compared to pain in patients with fibromyalgia -- a prospective longitudinal study over 6 months.
    J Rheumatol. 2008; 35(7):1366-70 (ISSN: 0315-162X)

    Wang H; Moser M; Schiltenwolf M; Buchner M
    Department of Orthopaedic Surgery, Ruprecht-Karls-University of Heidelberg, Heidelberg; and SRH Klinikum Karlsbad-Langensteinbach, Karlsbad, Germany. haili.wang@ok.uni-heidelberg.de

    Cytokine and other immunologic markers in chronic fatigue syndrome and their relation to neuropsychological factors.
    Appl Neuropsychol. 2001; 8(1):51-64 (ISSN: 0908-4282)

    Patarca-Montero R; Antoni M; Fletcher MA; Klimas NG
    E. M. Papper Laboratory of Clinical Immunology, Center for Behavioral Medicine Research, Miami Veterans Administration Medical Center, University of Miami School of Medicine, P.O. Box 016960, Miami, FL 33101, USA.

    A first study of cytokine genomic polymorphisms in CFS: Positive association of TNF-857 and IFNgamma 874 rare alleles.
    Clin Exp Rheumatol. 2006; 24(2):179-82 (ISSN: 0392-856X)

    Carlo-Stella N; Badulli C; De Silvestri A; Bazzichi L; Martinetti M; Lorusso L; Bombardieri S; Salvaneschi L; Cuccia M
    Immunogenetics Laboratory, Dept. of Genetics and Microbiology, University of Pavia, Italy. nickics@ipvgen.unipv.it


    Illness, cytokines, and depression.
    Ann N Y Acad Sci. 2000; 917:478-87 (ISSN: 0077-8923)

    Yirmiya R; Pollak Y; Morag M; Reichenberg A; Barak O; Avitsur R; Shavit Y; Ovadia H; Weidenfeld J; Morag A; Newman ME; Pollmcher T
    Department of Psychology, Hebrew University, Hadassah Hospital, Jerusalem, Israel. msrazy@mscc.huji.ac.il


    [Indicators of the persistent pro-inflammatory activation of the immune system in depression]
    Psychiatr Pol. 2006; 40(3):431-44 (ISSN: 0033-2674)

    Cuba?a WJ; Godlewska B; Trzonkowski P; Landowski J
    Klinika Chorb Psychicznych i Zaburze? Nerwicowych Katedry Chorb Psychicznych AM w Gda?sku.
  14. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Well

    Well, the way I see it, psychological is biological. It is the brain. It is chemicals. It is nerve response. And it responds to and has an effect on the other body systems.

    I think it is not scientific to divide between psychological / psychiatric illnesses and neurological.

    Does attitude influence body functions? Yes, high blood pressure and more are affected by mood and attitude. My husband can lower his blood pressure when called on to do so just by thinking of fish in a tank.

    Can biological abnormalities affect mood? Yes, ask any woman who has had PMS. Better yet, ask her while she is in PMS and you will see that biological abnormalities can affect mood.

    But, I don't think attitude causes CFS. I don't think it is personality type. Although I think stress contributes toward it starting or the relapses afterward. But I have always thought my hypothalamus was messed up since birth. Now I think it is XMRV.

    Tina
  15. gracenote

    gracenote All shall be well . . .

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    functional somatic syndromes

    I agree that the mind and body are connected and influence each other for illness and for health. But we need to be able to distinguish between organic causes of disease and psychosocial ones. This is important for research and for treatment. We need a total understanding of the disease of ME/CFS which will include psychological issues that are a result of physiological changes.

    So here is the type of article that makes me want to be very clear that we have adequate research and why the XMRV finding is so exciting.

    Functional Somatic Syndromes
    by Arthur J. Barsky, MD, and Jonathan F. Borus, MD
    Ann Intern Med. 1999 Jun 1;130(11):910-21

    http://www.annals.org/content/130/11/910.full.pdf
    Oh, can't wait to read their six-step strategy to help me get over my "belief that [I have] a serious disease." I just got myself all worked up and it's time for me to go to bed!

    ----------

    Thanks Dan. I saw your article listings. Tomorrow I'll see which ones I can find as full-text in my college database. (There's another thread with a new article by Nancy Klimas on women and cytokines and CFS. Also, you can watch her most recent lecture excellent!)
  16. usedtobeperkytina

    usedtobeperkytina Senior Member

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    agreed

    agreed, neither attitudes or organic should be taken off the table. Study both as aspects of the disease, then trace it back to the cause, which maybe WPI has done.

    I think all agree they are both at play, but the question is what is first cause and what is affect. And is the psychological a biological affect from chemical changes or is it from attitude changes that cause chemical changes, the attitude being the result of desperate circumstances.

    I believe XMRV is the first cause. A trigger turns the virus on and depending on the body's situation at the time, the body may not be able to get control of XMRV. If not, the person may crash into XAND. I think that part of the biological affects may be depression. Just as Fibromyalgia (which I believe to just be another form of XAND) has overstimulated chemical response to pain, other chemical / nerve functions can be depressed or overstimulated, including the parts of the brain affecting mood.

    But I also think attitude (frustration, loss of hope, etc) can cause depression on CFS and FM folks. Maybe the attitude (based on the circumstances) is a trigger to a crash of the fragile biological balance the body is trying to maintain in the mood part of the brain. And that part of the brain is extra fragile because of XMRV.

    As I said, it is all neurological anyway. And treatment should include attitude, lifestyle, diet, supplements and meds. Just as the symptoms and abnormalities include all of them.

    But I agree, must find the first cause. Lacking the will or sophistication to find the biological cause, they chose the psychological, since there is a psychological component. It was just too easy. Much easier than hours in research labs doing trial and error.

    Thank goodness for WPI and others.

    Tina
  17. V99

    V99 *****

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    Dan

    I completely agree with everything you say. :D

    I just wanted to point out that depression is not found in all cases of ME, just like depression in AIDS, or MS.

    If XMRV turns out to be correct, perhaps it hasn't infected the brains of those patients? or maybe the immune system has not been so badly damaged and is able to respond better. There are a lot of options, i just can't think of them all right now.

    I don't have any problem being offered psychological treatments, as long as the treatment is not based on the idea that the patient is imaging they are sick. Here in the UK, I would not put myself though such a wasteful process.
  18. Dan

    Dan

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    Hi V99,

    Thanks for your follow up. Yes I see what you're saying and I agree. Depression is not found in every case. I suppose we are addressing the order in which they appear and the cause and effect more than anything. I know what you mean about being willing to be helped but not wanting to go off that psycho-therapeutic off-ramp to nowhere. As far as XMRV there seem to be a lot of people here who understand viruses and their effect on the CNS.


    It's horrifying enough to feel sick with aching muscles/joints (and the rest), extreme fatigue that makes typing, using a pen or even just thinking about daily tasks difficult or impossible. For me, there are few things that add more insult to that physical challenge than the suggestion that a state of mind, an outlook, or a novel positivity could play anything more than a palliative role in helping the situation. As if we hadn't arrived at this common sense conclusion already :). The mental toughness of CFS/ME suffers I know is second to none. A positive outlook is exactly what maintains us as we keep struggling for an exit from this limbo of disability without proper diagnosis and with limited treatment.

    Dan

  19. Dan

    Dan

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    Exactly

    Hi Tina and thanks for that clarification. I like the caveats you gave in the rest of your post. Sure, the brain is an organ of the body. Sure, the mind has been shown to be able to influence various chemical parameters within the physical brain/body. I can't speak for everyone here but I bet that for most people with CFS/ME (and for that matter MS or any number of diseases which are sometimes subject to exacerbation from stress), all the meditation, introspection or happy events in the world cannot reverse what we know has an organic origin.


    Indeed. This is a crucial distinction.
  20. Dan

    Dan

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    Hi Gracenote,

    Here is a pretty decent discussion on the topic of neuro-immune inflammation and affect published in Nature. You can find the full text at the URL provided.

    Dan


    From inflammation to sickness and
    depression: when the immune system
    subjugates the brain


    Robert Dantzer*‡, Jason C. O’Connor*, Gregory G. Freund*‡, Rodney W. Johnson*and Keith W. Kelley*‡
    Abstract | In response to a peripheral infection, innate immune cells produce pro-inflammatory cytokines that act on the brain to cause sickness behavior. When activation of the peripheral immune system continues unabated, such as during systemic infections, cancer or autoimmune diseases, the ensuing immune signaling to the brain can lead to an exacerbation of sickness and the development of symptoms of depression in vulnerable individuals. These phenomena might account for the increased prevalence of clinical depression in physically ill people.
    Inflammation is therefore an important biological event that might increase the risk of major depressive episodes, much like the more traditional psychosocial factors.

    http://dericbownds.net/uploaded_images/Dantzer.pdf

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