Diagnose Support

Chronic Fatigue Syndrome research project:

XMRV as a potential cause of chronic fatigue syndrome - on the indicative research project list for 2010

Currently there is no diagnostic test for Chronic Fatigue Syndrome (CFS) although millions world wide are affected with the syndrome. A very recent Science paper (9.10.09) has linked CFS with a rodent retrovirus XMRV (rather like HIV-1) that can as well cause aggressive prostate cancer. About 70% of the affected group had evidence of the virus compared with only 4% of the control population. My lab has done developmental work on a rogue RNAse L cleavage fragment for a biomarker since it is claimed to be specific for CFS and indirectly to deplete affected cells of 50% of their ATP. We would like to examine the virus and its translational mechanisms as a potential drug target and establish the RNAse L fragment as a biomarker.

• Department of Biochemistry Otago school of medical sciences 
• Staff members
• Biochemistry 400-level. Honours, DipSci and MSc, indicative projects for 2010
  
  
  

The role of XMRV in modulation of NK cell cytotoxicity and NK cell gene abnormalities in ME/CFS patients and normal blood donors

The project will be carried out by Dr Jonathan Kerr and his team from St. George's University, London, and Dr Amolak Bansal of the Department of Immunology, Epsom & St Helier University Hospitals NHS Trust.

Field: Molecular Biology & Genetics
Department: Molecular Biology & Genetics - AG

Description: The Department of Molecular Biology and Genetics seeks a postdoctoral research associate to study the role of the newly discovered retrovirus XMRV in chronic fatigue syndrome (CFS).  Blood from a cohort of CFS patients and controls in upstate New York will be examined for the presence of virus, viral proteins, and antibodies to viral proteins.  Sequences of XMRV from different patients will be obtained in order to characterize the diversity of viruses in the population.  Whether virus sequences correlate with functional status of CFS patients will be determined.  This project will be undertaken in collaboration with the Whittemore-Peterson Institute in Reno, Nevada and the Columbia University Center for Infection and Immunity as well as with several physicians treating CFS patients. 

CERBA de España ya a es posible realizar el estudio de PCR del XMRV

http://www.cerba.com/index.rxml

En los laboratorios CERBA de España ya a es posible realizar el estudio de PCR del XMRV. El coste será aproximado de 275€. El plazo de entrega puede variar entre 3 y 4 semanas ahora y menos más adelante.

Cerba tiene un acuerdo de colaboración en Madrid en Bravo Murillo 81

CERBA laboratories of Spain is already testing XMRV PCR. The cost will be approximately € 275. The delivery time may vary between 3 and 4 weeks now and less later. In Madrid they have an agreement in the lab located in Bravo Murillo 81.

Their website provides information in Spanish and English.

This information is yet unconfirmed. Please cal the lab for more details and to have the procedures published on their website.

Laboratory supervisor: Prof Greg Towers

Clinical supervisor: Prof Deenan Pillay

Xenotropic murine retrovirus (XMRV) has recently been associated with chronic fatigue syndrome as well as prostate carcinoma in humans (1-3). XMRV is a murine endogenous virus found in the genome of mice and until recently has been thought to be absent from the human population. It is now becoming clear that XMRV has transmitted to humans by a process of zoonosis, presumably from mice, and appears to be associated with a variety of diseases not previously associated with viral infection. 
 

• http://www.institutferran.org/investigacion.htm
• http://www.institutferran.org/fatiga_cronica.htm

Second validation of the presence of retrovirus XMRV in patients with Syndrome of serious Chronic Fatigue (Fukuda criteria and Canadian positives - certificates by an expert doctor, demonstrable neurocognitivo impact and tests of effort test-retest (24h) with fall superior to 25% in a second and minimum of an analytical alteration of immune profile), and healthy population.

For those of you in Spain: The National Institute of Health Carlos III (+34) 91 822 30 00 (Microbiology) I said this morning that they are receiving many calls asking for XMRV detection test present in prostate cancer and SFC (Sindrome Fatiga Chronica) .

For this reason they are preparing a test, which could be ready for spring 2010, and in theory covered by Social Security.

Please call this number and ask all who follow me the test to create social demand and actually do it and give it priority.

• Petition for The Netherlands - (international signatures accepted)
• Petition for Spain - (citizens only)
• Petition international - (international signatures accepted)
• Petition for the UK - (citizens only)

Please find below a list of patient questionnaires. The information you will provide will be directly send to the research group that is listed in the url and/or the questionnaire. Diagnose Support will not see the information.

Some questionnaires accept international submissions. We are assuming the information will be distributed amongst scientists globally. Some questionnaires are only used to collect information, others are simultaneously a registration for participation in research programs and/or clinical trials. Please note that filling in the questionnaires does not obligate you to participate should you be selected. At any time you are allowed to withraw without explanation.

• Whittemore Peterson Institute Patient Volunteer Form (international applications)
• Dr. Nancy Klimas, M.D. of the University of Miami ME/CFS Case Definition Survey

The discovery of the XMRV virus being linked to Chronic Fatigue syndrome I think will shed a lot of light on why so many folks are so exhausted. And it’s a retrovirus. Teach us a little bit about why this is such a big deal......

0.08

This is a real game changer in our understanding of Chronic Fatigue Syndrome. For the first time we can look at the millions of women and men with chronic fatigue syndrome and say with confidence: “We know this is not all in your head, we know you don’t have depression and we know you don’t have a midlife energy crisis. What we do know is that this is a serious , potentially debilitating, neuro-immune disease that has an infectious component.” 

Support the patients in The Netherlands and sign the official petition at Petities.nl  

Please click here for instructions in English how to sign the Dutch petition. 

PETITION TEXT, a google translate from Dutch:
An estimated number of 200,000 patients in the Netherlands with typical MS-A, Non-genetic Autism, Alzheimers Youth, Malignant Lymphoma, Prostate Cancer, difficult to define complaints,  CFS / ME (Chronic fatigue) and Fibromyalgia - also known as X-AND patients note:

1. That the Dutch government, the UWV and the medical community in the Netherlands international vision has not yet taken the aforementioned problems of Neuro-Immune diseases should be classified. As a result, insufficient funds and interest in Dutch medical research centers to participate in the international biomedical research leading to improved living conditions of the above patient groups may result.

STEP 1
 
Open the petition website.
 
At the bottom of the petition (scroll down), please fill in :
Ik _________________ = Your name
Wonende te _________ = Where you live
e-mailadres _________ = valid email address for confirmation email
Box = CHECK the box if you want your name to appear on the list, leave unchecked if you want to vote anonymously
Press "Onderteken!" = sign.
  (please click read more for step 2)

Soon, if not already, theories as to which treatments against XMRV might be successful will arise. We will try to inform you about which treatments are discussed in the press, expert blogs and research papers. We strongly advice you NOT to proceed to start any treatment before more news regarding the causality/contributing factors is out and/or without consulting a knowledgeable physician.

• Links to XMRV Treatment information
• Overview Testing for XMRV

Petition link here, for UK citizens only, Submitted by Joe Ennis – Deadline to sign up by: 12 October 2010 – Signatures: 759:

We the undersigned petition the Prime Minister to provide funding to research further and better particulars of the breakthrough in the understanding of chronic fatigue Syndrom/M.E.