Last Updated: 29 December 2015 29 December 2015
Recently some very BIG news was released by the new Whittemore Peterson Institute in Reno (along with the Cleveland Clinic and the National Cancer Institute). This group has found a relatively new retrovirus (xenotropic murine leukemia virus-related virus, or XMRV) in a group of CFS/ME patients. Whether this retrovirus is a causative agent or simply an opportunistic virus is not yet clear. There will be answers to that important question in the future but what is clear, considering the very impressive media response to the announcement, is that CFS/ME is now both more visible and more believably a biologically caused illness. There is a lot of new interest on the part of scientists and clinicians. Hopefully, new funding will be forthcoming as more researchers get involved in clarifying the nature of the XMRV virus. There is much work to be done but a major step has just occurred.
We have some important Association news of our own! We have been hard at work organizing our membership drive. Membership solicitation will occur in several phases beginning in early November but this announcement enables you to join now! We have described the process below.
Of course a key question is: Why become a member? There are many reasons but we will touch on those we think are key.
- With one major exception (Japan), government support of needed research on and education about CFS/ME, nationally and internationally, has been sadly lacking. We can hope that this will change but many around the world have concluded that CFS/ME patients have waited long enough. Individual and collective efforts, including advocacy and fund raising for research and education, can make a difference. The privately funded Whittemore Peterson Institute, mentioned above, is a wonderful example of what can happen when the CFS/ME community pulls together.
- We are a volunteer organization but in order to carry out our work there are a number of expenses, for example: telephone service for our Information Line, postage and post office box, telephone conference calling for our committees, and occasional website technical assistance. In order to continue our services–the Info Line, physician referral, support groups, dissemination of information and advocacy–we need to receive both membership dues and donations.
- While we hope to contribute to the national efforts, we here in Massachusetts also have a chance to be heard and to have a significant impact on the legislature, our four medical schools, our departments of health and education, and the media. For this to occur we must grow. The first thing legislators and agencies ask is "how big is your group." The more members we have the greater our voice and potential impact.
- We have received many requests to sponsor lectures and panels as we did in the past. Not only was much information provided, doing so gave us all an opportunity to meet with each other, to give and get feedback, to discuss important issues, and to vote for your officers and Board. As there are a number of new developments as well as a number of potential interesting speakers, reviving the lectures/meetings is natural next step. Our membership will be notified first. We have just asked one of our Board members to head up a committee to restart our lectures/meetings. We will keep you posted.
Now that we have updated our computer systems, including the website, applying for membership is easy. Just click on the link below and fill out the simple form. The requested membership donation ($25) can be paid online. Your donation is tax deductible. We don't want to exclude anyone because of financial hardship, so, if necessary, request the fee waiver which will provide criteria and instructions.
Please join us today! Becoming a member is a positive action that can benefit you.
Alan Gurwitt, M.D.