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
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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
