"Dog days" got you down? Here are some brief "good news" items to pick you up.
Funds for Research
We are very pleased to report that, thanks to the generosity of so many of you, our Association will be sending a substantial donation to Dr. Ian Lipkin's Microbiome Discovery Project to go toward the completion of this research. We received this "thank you" from Dr. Lipkin's team.
Thank you so much for sharing the amazing news about your fundraising.
Our team is delighted that you've taken an interest in the project, and that you've raised such a significant amount.
We believe that every donation makes a big difference for a couple of reasons:
1. Every donation, no matter what size, demonstrates to Dr Lipkin, and his team, that they have the support of our community, and...
2. If every ME patient in the USA made a donation of just $1, this would fund the entire project.
So, we think that your large donation is wonderful news.
It moves us much closer to a $100,000 total, which we should hit within the next week or two.
Please could you send a big "thank you", on behalf of our team, to your members for their kind efforts. This has really become a great community project.
If you didn't have a chance to donate to help fund this research during our campaign, you can still do so directly if you wish.
10 Lessons From A Great Teacher
by Alida Brill
Most of us have memories of a teacher who influenced our lives. I certainly do. But my greatest teacher has been chronic inflammatory autoimmune disease. Obviously, I use the word great here not as in "wonderful" but as in "of extraordinary importance and weight."
A few years ago a young woman approached me after a talk I gave about living with chronic disease for my entire life (well, from twelve forward, so close enough). She wanted to know precisely what I meant when I said: At the end of it all, it really hasn't been all bad.
Understandably, she wanted to know what wasn't all bad about always being unwell. She had been recently diagnosed with Lupus and saw the life she had known and valued disappearing. She was overwhelmed by the unknown and confused by conflicting medical opinions about treatment options. I said a few things, likely not useful, but her question stuck with me. Precisely what do I mean when I say that?
A selection of recent postings from our Facebook page
IN THE NEWS
The documentary "Canary in a Coal Mine" has been selected as a Sundance Institute Documentary Film Program grantee. Read filmmaker Jen Brea's post about this honor.
Norwegian Cancer Specialist Dr. Olav Mella talks about the upcoming Rituximab study and has this to say about the state of ME research and care: (it is) "... unfortunate (that) it is not the doctors - but the patient groups and political environment that have pushed M.E. forward. I must say that I am disappointed in some of the medical community that have prejudiced the disease and lack the curiosity that a MD should possess when we deal with diseases that we do not understand." (Unless you speak Norwegian , be sure to click the "CC" icon for English closed captioning.)
A new study by State University of New York at Albany will involve molecular epidemiologic investigation to explore the role of genetic predisposition and specific immune factors in the etiology of ME/CFS. The study will also investigate the potential association with Autoimmune Disease and the risk of cancer, including Non-Hodgkins's Lymphoma" in particular among this population. This study is funded by the Special Emphasis Panel at the National Institutes of Health (NIH). Learn more about this study.
Conference videos online
Chronic Fatigue Syndrome Advisory Committee (CFSAC) videos are now available for viewing on-line. We particularly recommend watching the two final segments from the second day:
CFSAC 2014 Spring Meeting: Future Directions
CFSAC 2014 Spring Meeting: Committee Discussion
The March 2014 Symposium at Stanford University brought together ME/CFS researchers and clinicians from all over the world. Videos (audio and slides) of the presentations are now available. Scroll down the page to see the titles of the talks in each of the 5 videos.
The "good news" here is the continued involvement of a dedicated group of advocates. In spite of their often severe illness, these intrepid souls continue to serve as watchdogs and analysts, figuring out what needs to happen and making it happen. Advocates don't win every battle, but they do keep the patient perspective strongly in front of those who are working on our behalf.
Pathways to Prevention is a program created by The National Institutes of Health to provide workshops on a variety of specific topics. A study on ME/CFS is underway with a final report due by the end of December 2014. Jennie Spotila and Mary Dimmock have published a blog about the P2P's failure to ask whether the multiple ME/CFS case definitions capture more than one disease.
This group is also keeping an eye on the timeframe for this study, especially to identify times when public input may be accepted. As this process continues, there may be actions we can take to try to keep the study on the right track. Look for more information on this by the end of September.
A similar P2P process is also underway regarding The Role of Opioids in the Treatment of Chronic Pain with the final workshop scheduled for September. See the meeting website for more information on this topic.
Would you like to participate in the Workgroup to develop a recommendation about the need for Centers of Excellence? There will also be a Workgroup to prepare for publicizing the IOM recommendations. If you as an individual or as a representative of your patient organization would like to be nominated for either of these workgroups, please Contact Us to express your interest.
AHRQ draft report on Fibromyalgia is open for comment
The Agency for Healthcare Research and Quality has issued its draft report entitled "Treatments for Fibromyalgia in Adult Subgroups." Patients and advocates are invited to comment on the draft up until August 19, 2014. Go to: http://content.govdelivery.com/accounts/USAHRQ/bulletins/c5fd09 and follow the appropriate links.
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