Sunday, February 27, 2011

Is XMRV Research Dying?

The recent weeks have left one to wonder - is XMRV becoming a dead issue like all other previous "causes" of Chronic Fatigue Syndrome?  On the other hand, the neuropsychiatric psychobabble has begun to drown out good science.

10 comments:

  1. Well less noise is good less politics too from the nay sayers but this research is brilliant for ME/CFS and/or Lyme patients.

    Distinct Cerebrospinal Fluid Proteomes Differentiate Post-Treatment Lyme Disease from Chronic Fatigue Syndrome

    http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0017287

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  2. XMRV research is far from a dead issue - until the nay-sayers can actually demonstrate contamination in positive samples from the Whitimore Peterson Institute study and explain why so many CFS/ME samples are positive and so few control samples are, these negative studies are just a lot of noise signifying nothing.

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  3. Does this mean you don't believe in xmrv anymore??

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  4. Dr. Alter said to a CFS patient:" 'Keep the Faith' The truth will come out guys.

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  5. I agree with the comment above. My motto is 'truth will out'. It will happen in our lifetime - I know it. It is the only thing that is keeping me going. The WPI are continuing with their efforts and finally they will overcome the doubters. They will produce too much evidence in the end. It will take a while but we are on the right path - we have to continue being patient and God knows, we are all used to being patient!!

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  6. I want so much to believe that XMRV is the cause of this sh*tty illness so we could finally start to find treatments and get our lives back, and i did believe until recently however the contamination evidence seems to be building. I don't have the cognitive ability and education to know who to believe and weigh up the evidence in a meaningful way. I will accept the outcome of the blood working group study and really hope that there is no controversy. If XMRV isn't a new human retrovirus causing disease then i hope no more effort/money is spent on a dead end. I'm worried we'll end up in a similar situation to the MMR/Autism debacle.

    regards, Neal

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  7. pretty well dead. but maybe there's some related human gamma retroviruses. they'll have to publish the deep sequences so they can be analyzed by the scientific community

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  8. I started on Viread and Isentress in February . My doctor says my blood work has shown an improvement in months that would take an AIDS patient 2 years. I've had ME/CFS for 18 1/2 years. I am HIV neg., so my response to the drugs is most likely due to a retrovirus. If it isn't XMRV/MLV it's got to be something similar. I'm not the only one to have taken these drugs off label and gotten the same results.
    This issue is far from dead. The Lipkin and one other study will hopefully make the breakthrough in Dec. or Jan.
    What I'm not clear on is why the RNase-L factor is not a standardized test for ME/CFS ?

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  9. HOW CAN I BE A PART OF YOUR RESEARCH?????? HAVE NO INSURANCE. I WAS A PATIENT OF DR. JOHN CHIA AND HE HELPED ME ENORMOUSLY, HOWEVER i HAVE GOTTEN DIVORCED AND HAVE NO, NADAN NONE HEALTH INSURANCE SO ALL THE PAIN AND TREATMENTS HAT I ENDURED HAS NOW BEEN FOR NOT AS I CANNOT AFFORD TO SEE DR CHIA OR EVEN PAY FOR MEDICATIONS, THEREFORE I HAVE RELAPSED. I AM SUICIDAL, EXPREMELY DEPRESSED AND JUST FLAT DONT GIVE A FUCK ABOUT MYSELF. I GOT INJURED AT WORK AND ALL THE WORK I HAD DONE TO GET HEALTHY AND TO GO INTO REMISSION HAS OF COURSE DIED AND I AM BACK WHERE I STARTED. LIVING IN A SELF-HATERED HELL.
    IS THERE ANYONE THAT CAN HELP ME?????? WHEN I WAS IN REMISSION AND FEELING BETTER THEN I HAVE EVER FELT IN MY LIFE , I MET A WONDERFUL MAN, BUT NOW I AM AFRAID I AM GOING TO LOSE HIM DUE TO MY ANGER, DEPRESSION, AND CONSTANT AGITATION AND ESPECIALLY MEMORY LOSS. MOST DAYS I FEEL LIKE I WANT IT TO BE THE LAST. I DONT WANT TO LOSE HIM BUT I KNOW THAT I AM PUSHING HIM AWAY. I NEED SOME SERIOUS SERIOUS HELP. CAN ANYONE HELP ME?????? BECAUSE I FEEL THAT I AM ON MY LAST LEG.

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  10. I have Chronic Fatigue Immune Dysfunction Syndrome (CFS/CFIDS/ME) and NON-HIV AIDS, idiopathic CD lymphocytopenia. With these two clinical diagnoses, I believe that makes me living proof that the AIDS-like CFIDS/ME is transmissible, something that the medical establishment seems unable to admit or to acknowledge. I also believe it makes me living proof that CFIDS and NON-HIV AIDS are basically the same mysterious immune disorder.

    Three years ago, after a heterosexual sexual encounter, I became seriously ill with what looks like the natural disease progression of AIDS. After an "acute infection" and a "period of asymptomatic health," I have fallen extremely ill to an unrelenting, progressively-worsening AIDS-like demise. I can pinpoint exactly when I was infected with my "chronic viral syndrome of unknown etiology" and because the "acute infection" stage was so distinguishable, I can also pinpoint exactly when my undiagnosed pathogen left my body and infected yet another host.

    Whatever I am currently dealing with, it strongly resembles classic textbook HIV/AIDS. But, to add to my inquiry, I also clinically satisfy the CDC's criteria for the diagnosis of Chronic Fatigue Syndrome.

    Increasingly, I have become concerned that my systemic diagnosis is caught up in the treacherous politics of CFIDS/ME and AIDS. Most people with CFIDS/ME do not like to talk about the many symptoms and immune abnormalities that they share with AIDS patients. I also suspect that most ailing patients would rather be told that they have the very mysterious CFS than to be told that they have AIDS.

    I have a Master's degree. I am a director at my firm. I used to be a triathlete. I have never used IV drugs. I have never traveled abroad. I can count my sexual partners on two hands. Statistically speaking, I know that my undiagnosed infectious and communicable disease is not rare...so, you tell me, if they are not in the miscellaneous CFIDS/ME category, where are all these other immunosuppressed people?

    Anyone with CFS, who does not consider the possibility that CFIDS/ME will eventually progress to a NON-HIV AIDS diagnosis, is very well trumping their own ability to diagnosis the root cause of their illness.

    Why isn't CFIDS/ME a reportable disease overseen by our public health department? Why are ME and CFS (i.e., the same exact disorder) suspiciously categorized as two separate illnesses on a worldwide level (i.e., by ICD codes)? Doesn't anyone else but me, very clearly see, the catastrophic cover-up going on here?

    Why are we not reading about Non-HIV AIDS cases (and/or the AIDS-like nature of CFIDS) on the front pages of every newspaper in the world? And if CFIDS/ME is Non-HIV AIDS, then, depending on who you believe, there are anywhere between 500,000 - 14,000,000 Americans out there with a transmissible illness. If that is what it truly is, our new form of AIDS dwarfs the ‘original’ AIDS pandemic ---> TENFOLD.

    I am not afraid to say that I have AIDS without HIV -- idiopathic CD lymphocytopenia -- my second official clinical diagnosis. I am equally as unafraid of saying the most obvious thing about CFIDS/ME: IT SURE DOES LOOK LIKE AIDS TO ME.

    If it takes courage to think and to say the things that I do, I hope that there will be a miraculous outbreak of bravery from coast-to-coast. I stopped fighting for myself a long, long time ago. I fight for humanity.

    Simply google "non hiv AIDS"

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