• Join the American Campaign to adopt the Canadian Consensus Document

• Canadian ME/CFS Overview   - 2nd printing in UK
  June 12, 2007
  
  To those interested in buying printed copies of the Canadian Consensus Overview Document.
  
  The original 10,000 copies that were printed in 2006 have all been distributed.  In the future, printed copies will be distributed in the UK by Invest in ME.   If you are interested in ordering copies, please contact:
  info@investinme.org.  It would be very helpful if you could let Invest in ME know how many you would like to purchase in the near future.
  
  Thank you.
  Kind regards,
  Jeff Brown

• Interview with Dr. Dan Peterson, etc. - New ME/CFS & FMS Research Center  - Nevada Newsmakers - April 3, 2007

  Interview with
  Medical Director - Dr. Dan Peterson CFIDS doctor/researcher;
  Founding Director - Annette F. Whittemore
  Research Director - Judy A. Mikovits, PH.D
  There is a research center for M.E. /CFS being built on the campus of the University of Nevada, Reno. Dr. Peterson have found that there is a percentage of patients who come down with viral-induced cancers with this disease, Myalgic Encephalomyelitis/CFS, due to derangements of the immune system.   Since one of the three leading causes of death for Myalgic Encephalomyelitis/CFS is cancer, this is an important finding that has not come to full attention.
• Whittemore/Peterson Institute for Neuro-Immune Disease - New ME/CFS & FMS Center in Nevada is scheduled for completion 2008-2009.
  
• Quality of Life Survey
  Do you believe that doctors and the healthcare system should do more to improve the quality of life of the people that your organisation represents? If you do, one reason why the situation has never really changed before is that the medical profession, healthcare managers, civil servants and politicians cannot always be expected to know what patients mean by 'quality of life'.
  
  This survey hopes to help overcome such a barrier by producing some authoritative definitions of the phrase 'patients' quality of life'. We would like to invite your organisation’s members (whether they are patients or people with a disability) to add their opinions to a worldwide study on what constitutes patients’ quality of life. The results of this survey will help patients from across the world determine the key characteristics behind an improved quality of life.
  
  The study is being conducted by HSCNews International, an independent publication for health advocates, in collaboration with the QALYity Project (a UK-based alliance of prestigious patient groups, medical professionals, academics, and journalists). The Project is trying to develop an index that can measure how effective each individual medical treatment (or form of care/ support) is at improving the quality of life of people with a long-term medical condition (or a disability)—as determined by the individuals themselves, not by clinicians. The results of this international survey, and the tools that emerge from it, will be made publicly available, and will also be presented to the National Institute of Health and Clinical Excellence (NICE), a UK-government-funded body that decides which treatments and care should be paid for by the healthcare system in the UK. Many of the actions taken by NICE are relevant to other countries’ healthcare systems.
  
  In December 2006, the QALYity Project published the results of its first survey, which had collected the views of over 270 patient/disability/carer organisations in one country (England and Wales) [see footnote to this email]. The groups that replied have kindly provided a wealth of potential definitions of the phrase ‘quality of life’. But people are different, and not all of the December 2006 definitions are likely to apply to everyone. This second questionnaire, which is being sent worldwide, is aimed at your members, and should allow individual differences to be collated.
  
  For this reason, we would be most grateful if you could give your members a chance to input their opinions to this quality-of-life survey. The short questionnaire can be filled out online by clicking on the following hyperlink: QUALITY OF LIFE SURVEY.
  
  The administrative costs of this international survey are being paid for by HSCNews International. The QALYity Project is supported by an educational grant from NovoNordisk (a Danish company that manufactures medicines for people with diabetes).
  
  Thank you for your assistance in this matter,
  Alexandra Wyke, CEO, PatientView
  
  For general enquiries about this study, please feel free to contact Dr Wyke at: Woodhouse Place, Upper Woodhouse, Knighton, Powys, LD7 1NG, Wales
  Tel: 0044-(0)1547-520-965  Fax: 0044-(0)1547-528-501  Email: info@patient-view.com  For more information: http://www.patient-view.com
  
  Foot note:  The results of the QALYity Project’s first survey into patients’ quality of life can be read at http://www.patient-view.com/qalyity.htm
  
• Charlotte Talks  2/02/2007
  Listen to the hour-long "Charlotte Talks" (Feb. 1, 2007) dedicated to CFS by NPR Affiliate WFAE - featuring Dr. Charles Lapp, Dr. Laura Black and Kim McCleary.
  http://www.wfae.org/wfae/nav1024.cfm?cat=18&subcat=93
  
• Informal Summary of 2007 IACFS Conference   2/02/2007
  Pat Fero
• The One Click Group Report – The Gibson ‘Inquiry’  Jan 17, 2007
  
• First FDA Approval for FM Treatment Drugs Expected by 2008  Jan.  2007
  
• Genetic Basis for Chronic Pain Conditions Discovered Jan. 2007
  
• Tests to Begin for New Chronic Fatigue Therapy Jan. 15, 2007
  
• Ampligen Phase III trials announced -  Nov. 29, 2006
  
• CFS a public health epidemic says CDC  - Nov. 7, 2006
  
• ME/CFS in the News  UK -  Oct, 2006
  
• Consultant Report Not Needed for Home Schooling - UK - Oct. 2006
  
• World Heath Organization - International Classification of Diseases - September 2006
  
• ME/CFS in the News   USA - Summer 2006
  

This page was last reviewed/modied on 04/2008.