Diagnose Support

The new communication manual in Spanish published for health professionals on ME/CFS, Fibromyalgia and MCS;

“New challenges in the doctor’s office: What to do with Fibromyalgia, ME/Chronic Fatigue Syndrome and Multiple Chemical Sensitivities. A communication manual” (Bilbao, Spain: ONEditorial 2009). (The version on paper is being distributed, by the company that paid the printing, to 10,000 primary care doctors in Spain. But we, the authors, have rights to the digital form).

We hope it will be of use to all of you who work with Spanish-speaking patients and that you will feel free to publish it on your websites and e-mail it to patients, doctors, etc.

Although this book is mainly on how to communicate efficiently with the patient and on the social impact of these illnesses, we have included a chapter on the medical/scientific aspects of each one of these illnesses.

Click the image to download the book, click 'READ MORE' for the table of contents in English. 

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
  
  
  

State Secretary Jet Bussemaker of the Ministry of Health, Welfare and Sport (VWS) has accepted the advice of the Taskforce “Linschoten” to acknowledge Chronic Fatigue Syndrome (CFS, also known as ME) as a chronic illness. If the Dutch Parliament accepts her proposal (motion), all CFS patients in the Netherlands will finally be eligible for reimbursements in the framework of the WMO and the Law "Compensation For the Sick and Disabled" (WTCG – Dutch abbreviation).

After a long silence in the Danish media, on the 12th of January there was a fairly ok radiocomment on the differences between the WPI and the Kings College XMRV findings. Suggesting, that both could be right because of "geographical subtypes". (That would not be my first choice of explanation.) Hear the Danish radiocomment at the link below.

Sent in by Helle Rasmussen

• http://www.dr.dk/P1/orientering/indslag/2010/01/12/155752.htm

Det kaldes kronisk træthedssyndrom. Det er uvist, hvad det skyldes, for bedst som man troede, at et virus var fundet, er der nu sået tvivl om det.

• 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

Wordt lid van onze Facebook en/of Hyves pagina en help de bewustwording omtrent XMRV en de implicaties voor X-gerelateerde aandoeningen als CVS, ME, Fibromyalgie, Autisme, MS, etc. te verbeteren in Nederland en België.

• Facebook pagina: XMRV campagne voor CVS,ME,FM,MS,Autisme,Etc. in Nederland & België
• Hyves: Diagnose Support 4 XMRV in Nederland & België

   

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