Hot Topics and Readers’ Notes – 05-02-12

NPR Invites Your Input On “What It Means to Be Sick in America”

Seen on the National Public Radio (NPR) Facebook page (, May 1 –

“We’re doing a story on what it means to be sick in America. Have you been hospitalized in the past year? Are you coping with a serious illness? Has it changed your view of U.S. health care? If you’d be willing to talk about your experience, please email with a brief description of your situation. Thanks!”


Help the IACFS/ME Distribute Its New Guide to Doctors

In the Spring IACFS/ME newsletter, President Fred Friedberg, PhD, announced “the upcoming release (probably in May) of the IACFS/ME Primer for Clinical Practitioners. The primer contains basic information on the assessment, diagnosis and treatment of patients with ME/CFS.

“Our goal is to disseminate the primer to general practitioners – particularly general practice physicians who may not be familiar with ME/CFS. Also we would like to make the primer available to government health agencies worldwide including the CDC, NIH, and AHRQ. If you have any ideas on how best to publicize and circulate the primer, please contact me at:

You can read more about the new ME/CFS primer for GPs HERE.

Members of the committee who developed the primer are Rosemary Underhill, Rosamund Vallings, Lucinda Bateman, Alan Gurwitt, Charles Lapp, Alison Bested, Ken Friedman, Leonard Jason, Staci Stevens, and Todd Davenport. It is the organization’s hope that this primer will “help to educate providers wordwide about ME/CFS.”


Possible Savella and Neurontin Safety Risks, FDA Says

The FDA has put Milnacipran HCL (Savella) and Gabapentin HCL (Neurontin) on its list of products for which there are potential signals of serious risks identified Oct-Dec 2011. Inclusion on the list doesn’t mean the FDA has included it has this risk, but that a potential safety issue has been identified for further evaluation.

The nature of the risk listed for milnacipran (Savella) is “homicidal ideation.” The risk for gabapentin is “increase in blood creatine phosphokinase levels and rhabdomyolysis.” Rhabdomyolysis “is the breakdown of muscle fibers that leads to the release of muscle fiber contents (myoglobin) into the bloodstream. Myoglobin is harmful to the kidney and often causes kidney damage.” We suspect that individuals who are concerned about these possible risks should consult their pharmacist and/or physician.


How Even a People Pleaser Can Say ‘No’ –

Last summer, Jen Reynolds wrote a post titled “How to Say ‘No!’ to People When You Are a People Pleaser” on the blog, and this week we found a link to it thanks to the Hunter Hopkins Center Facebook page. Jen’s article begins, “Do you have problems saying ‘No’? Do you constantly do things for others but have a hard time letting people do things for you? If so, you might be a people pleaser. People pleasers spend most of their days pleasing others. Many times they will hold back what their true feelings are to others because… (read the rest here).


Win a Week’s Lodging this Summer or Next (Up to Six Beds), Near Disney World

Read about this juicy opportunity for family or support group fun – “PANDORA Raffle – $20 Can Win WEEK for SIX at Luxury Orlando Resort, Support Reseach Too.”


CFIDS Association Spring Research Fundraiser

Re: “CFIDS Association Spring Research Fundraiser Launches with Jennifer’s Story” 

This fundraising campaign is focused on funding the work of the CFIDS Association’s Research Institute Without Walls, and reminds us that the research is meant to build a better future for young ME/CFS patient Jennifer Wright and the millions who share her struggles.


Third Annual Zuni Mountain 24-Hour Bike Race for CFS

The 3rd Annual ’24 Hours in the Enchanted Forest’ Bike Race in New Mexico’s Zuni Mountains, with 25% of proceeds going to the CFIDS Association’s research program, will be held June 16 & 17. The race, which can accommodate 150 riders, qualifies riders for the national championship. Solo, duo, corporate and other teams up to 10 riders welcome. Registration ends Saturday, Jun 9.

There’s also an ‘Enchanted Land’ casual course for fun seekers, and a large campground with drink, games and swag for all. For information, go to


March British Assoc. for CFS/ME Conference Focused on CBT and GET

On Apr 25, Tate Mitchell posted comments to Co-Cure Listserv from the West Midlands M.E. Groups Consortium website regarding the March 14-15 BACME conference. The focus on CBT and GET as supported by the PACE trial didn’t cut much ice with the consortium. Their comments indicated that, in spite of the ongoing concerns expressed by WMMEG members “and over 50 UK ME Support Groups about accountability, transparency and the inappropriateness of their training and education, this year’s BACME conference was once again unashamedly psychological with little or no reference to anything remotely biomedical.”

To read their summary of the conference and PACE Trial principal investigator Dr. Peter White’s keynote speech, click here.


Simmaron-Related ME/CFS Research Project Gets $831,000 Grant

Researchers at Bond University in Australia have received a landmark grant of $831,000 to continue their ground-breaking research into identifying the cause and possible treatment of Chronic Fatigue Syndrome. Described as “the largest-ever collaborative international ME/CFS project,” the research involves a partnership with Dr. Daniel Peterson’s Simmaron Foundation, Stanford University, and Queensland Health in Australia.

Both lead investigators in the project at Bond will be featured speakers on June 1 in London at the 2012 Invest in ME International Conference. Dr. Donald Staines will present the Key Note Speech (“New Directions for ME/CFS Research”) and Dr. Sonya Marshall-Gradisnik will report on “Current Knowledge of Immunological Biomarkers.” Read more here.


CFSAC Meeting Set for June 13-14 in Washington, DC

According to the announcement on the CFSAC page

The Chronic Fatigue Syndrome Advisory Committee (CFSAC), 2012 spring meeting will be held on Wednesday, June 13, 2012 from 9:00 a.m. to 5:00 p.m. EST and Thursday, June 14, 2012 from 9:00 a.m. to 5:00 p.m. EST.

The meeting will be held at the U.S.  Department of Health and Human Services, Hubert Humphrey Building, 200 Independence Avenue, S.W., Room 800,  Washington, D.C. 20201.  For directions please visit

The meeting will provide a live video stream (webcast) and will be available by audio (listening-only). Additional information and the CFSAC agenda will be posted to the CFSAC website by June 4, 2012.

Instructions for public testimony will be provided at a later date in a Federal Register Notice. We are not accepting requests or testimony at this time. [Italics added.]


International Listing of Links to Multiple Chemical Sensitivity Forums

The May 2012 MCS America newsletter is out (a PDF of it can be found here and you can subscribe to this free newsletter at One of the many interesting features is a linked listing of MCS forums in the US and different countries around the world –


Hunter-Hopkins Facebook’s ‘M’ Collecting Communication Aids for the Isolated

Michele Krisko, the wonderful ‘M’ who inhabits the Hunter-Hopkins Center Facebook page, says she collects and distributes communication aids to patients who are isolated. On April 23 she wrote:
“From time to time I like to bring to everyone’s attention that I personally collect any used laptops, netbooks, e-readers, smartphones and electronic tablets (like I Pads or any brand) and match them to patients who are isolated and could use these devices to have the chance to get in touch with the online patient communities of those with similar diseases, and a chance to feel less isolated and have more coping tools to live as encouraged a life as possible.

“If you have or know of someone who has any of these electronic devices they could donate through me, please private message me – Michele Krisko – either through the message button on the Hunter-Hopkins Center Facebook page or my personal page here on Facebook.” – M


Note: This information has not been evaluated by the FDA. It is general and anecdotal and is not meant to prevent, diagnose, treat or cure any illness, condition or disease. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.

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