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Xmas card WPI appeal

Discussion in 'Action Alerts and Advocacy' started by jace, Dec 3, 2010.

  1. jace

    jace Off the fence

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    England
    This year I'm sending all my dear friends and family a Christmas Card with the following printed on the reverse - you know, those A4 fold once, fold again kind. I set it to print at 60% grey on 100 gram/1/4 oz paper and they look quite cool. You are welcome to use, chop, change or adapt my words if they are any use to you

    ----------------------------------​

    As you may know, I've had the neuro-immune disease, ME/CFS (Myalgic encephalomyelitis / Chronic Fatigue Syndrome), since February 2009. It's been an exciting time in the history of the illness, with novel authoritative research (1,2) showing a link to the retrovirus XMRV which works in a similar way to HIV by disregulating the immune system and allowing normally latent and harmless viruses such as Herpes and Human Papilloma to cause chaos in our bodies. XMRV was first found in aggressive prostate cancers 3 and is thought to inhabit reproductive and brain tissue.

    Medical research on ME has been starved of funds or buried since the 1980's when the looming AIDS epidemic was taking so much money and attention. After all, we don't die in a hurry like AIDS people. But our life expectancy is 25 years less than average (4), and of the 300 strong Incline Village outbreak cohort of CFS, 77 were found to have contracted Mantle Cell Leukemia. To put this in perspective, the normal occurrence is 0.015%. It was this fact that first set Judy Mikovits of the Whittemore Peterson Institute on the hunt for a pathogen, and XMRV was what she found (1). If I told you that XMRV seems to be in 3-7% (1,2) of the general population, while HIV is in 0.06% (USA, Nationmaster.com) you will see what this delay has cost us already.

    Now with the world wide web, it's harder to suppress information, and there are many active groups working to try to understand the relationships between XMRV, low natural killer cells, abnormal cytokine assays and damaged mitochondria, which are all found in ME. There are similarities with MND, Alzheimers, Autism and Multiple Sclerosis, all also neuro-immune conditions.

    There have been many attempts to hang on to the current wisdom, that ME patients are neurotic, just "tired all the time" (I wish!) and that ME is a somataform disorder. Their attempts are laughable, with one study rushed out in three weeks flat (5,6), and given only four days for peer review. However, the XMRV deniers have the ear of the press, here in the UK, via the Science Media Centre, a department of the Royal Institution. There are a lot of vested interests intent on retaining the status quo. In the US these developments are scaring the insurance industry and the medical profession.

    Since the October 2009 WPI Science study, the Institute has made six further grant applications. They have all been refused. They have a sheaf of privately funded studies and are struggling to get them accepted for publication. One of them looked at the incidence of XMRV in the UK, and I provided one of the samples. I am not allowed to publicise my status, so as not to prejudice eventual publication.

    The WPI are in need of funds, in order to continue their valuable work and move forward to understanding the disease mechanisms and treatment options for people with ME/CFS. I'm writing this to ask you that if you were thinking of spending any money on me this Christmas, please donate instead to the WPI - their paypal donation page can be found here: http://wpinstitute.org/help/help_donation.html The best present you can give me is to enable the Whittemore Peterson Institute to continue their work of unravelling and understanding, and one day even curing Myalgic Encephalomyelitis.


    1. VC Lombardi, FW Ruscetti, J Das Gupta, MA Pfost, KS Hagen, DL Peterson, SK Ruscetti, RK Bagni, C Petrow-Sadowski, B Gold, M Dean, RH Silverman and JA Mikovits Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome Science 23 October 2009: Vol. 326 no. 5952 pp. 585-589 DOI: 10.1126/science.1179052

    2. Shyh-Ching Lo, N Pripuzova, Bingjie Li, AL Komaroff, Guo-Chiuan Hung, R Wang, and HJ Alter: Detection of MLV-related virus gene sequences in blood of patients with chronic fatigue syndrome and healthy blood donors: PNAS August 23, 2010 doi: 10.1073/pnas.1006901107

    3. Fischer N, Hellwinkel O, Schulz C, Chun FK, Huland H, Aepfelbacher M, Schlomm T: Prevalence of human gammaretrovirus XMRV in sporadic prostate cancer. J Clin Virol. 2008 Nov; 43(3):277-83. Epub 2008 Sep 27. PMID:18823818

    4. Jason et al 2006; Causes of Death Among Patients With Chronic Fatigue Syndrome: HCW 27;615-626 DOI: 10.1080/07/07399330600803766

    5. O Erlwein, S Kaye, MO McClure, J Weber, G Wills, D Collier, S Wessely, and A Cleare: Failure to Detect the Novel Retrovirus XMRV in Chronic Fatigue Syndrome: PLoS One. 2010; 5(1): e8519.. doi: 10.1371/journal.pone.0008519.

    6. WM Switzer, H Jia , O Hohn , HQ Zheng, S Tang, A Shankar, N Bannert, G Simmons, RM Hendry, VR Falkenberg, WC Reeves and W Heneine: Absence of evidence of Xenotropic Murine Leukemia Virus-related virus infection in persons with Chronic Fatigue Syndrome and healthy controls in the United States Retrovirology 2010, 7:57doi:10.1186/1742-4690-7-57
    Further reading:
    http://www.guardian.co.uk/society/2010/may/13/me-chronic-fatigue-syndrome
    http://www.investinme.org/index.html
    http://www.mecfsforums.com/wiki/Encyclopedia
  2. Mark

    Mark Acting CEO

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    Sofa, UK
    Thanks Jace, I might well use this as the basis for my own mailing.

    Thanks too for reminding us of the way the WPI seems to be being frozen out of the process: it would be a disgrace if history was rewritten and the researchers who actually made this groundbreaking discovery were denied the recognition they deserved.

    There's some optimism to be found in that Dr Mikovits is scheduled to appear alongside Dr Lipkin at the blood screening announcement in March. The WPI are very much involved in the process behind the scenes. But why can't all their studies be published?

    Anyway, the patient community won't allow them to be forgotten. A reminder for all of us then, that when the news finally does break in the press, one of the messages to ram home, if we can, is to say: this is NOT the authorities that have delivered this breakthrough: this is all thanks to the WPI and it would never have happened without them.

    It took a privately-funded independent startup rooted in tragic personal experience to deliver a breakthrough where the vastly greater resources of the mainstream scientific community delivered less than nothing for decades, and that's what they don't like to admit.
  3. jace

    jace Off the fence

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    England
    Glad to be of use, Mark. Personally, I think we are reaching critical mass. Have you checked out Peggy Munson's Exit Project? There's something in that that is do-able by all of us bar the very sickest (blessings be upon them).

    I've added a sentence to my piece above, to the third paragraph. I've bolded the addition here. I think these stats (of reasonable quality) are telling:

    Medical research on ME has been starved of funds or buried since the 1980's when the looming AIDS epidemic was taking so much money and attention. After all, we don't die in a hurry like AIDS people. But our life expectancy is 25 years less than average (4), and of the 300 strong Incline Village outbreak cohort of CFS, 77 were found to have contracted Mantle Cell Leukemia. To put this in perspective, the normal occurance is 0.015%. It was this fact that first set Judy Mikovits of the Whittemore Peterson Institute on the hunt for a pathogen, and XMRV was what she found (1). If I told you that XMRV seems to be in 3-7% (1,2) of the general population, while HIV is in 0.06% (USA, Nationmaster.com) you will see what this delay has cost us already.

    You might remember I had ME threads running on big forums elsewhere a while ago. In all we got something like 5,000 views and 276 replies. I've used a version of the above to do it again, and if you feel like helping me keep the threads near the top of the boards, here are the links. You will need to be registered to post.

    Mumsnet
    Yachting and Boating World
    Money Saving Expert

    If you are a member of any other forums, feel free to adapt and start threads elsewhere. You could copy from my threads, linked above.
  4. jace

    jace Off the fence

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    England
    Bumping this thread - no comments from anybody ?!?

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