April 2011
CFIDSLink—e-Newsletter 

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In This Issue

FROM THE CEO'S DESK
XMRV NEWS
JOURNAL HIGHLIGHTS
OTHER RESEARCH NEWS
POLICY MATTERS
OTHER MEDIA COVERAGE
ASSOCIATION NEWS
UPCOMING EVENTS

FROM THE CEO'S DESK

CEO Kim McCleary draws attention to three key stories in this month's CFIDSLink, as we follow-through on commitments to transform our research, policy and communications programs.

XMRV NEWS

Amy Dockser Marcus extended the Wall Street Journal's coverage of developments in the contested association of XMRV to CFS with an April 8 story that reported on presentations made by Judy Mikovits of the Whittemore Peterson Institute (WPI) and John Coffin of Tufts University on the first day of the NIH ME/CFS State of the Knowledge Workshop. "At NIH Conference on CFS, XMRV Debate Heats Up" was the WSJ's 33rd Health Blog post about XMRV.

XMRV was among the topics discussed at a March 29 symposium sponsored by the New York Academy of Sciences, "Pathogens in the Blood Supply." Judy Mikovits provided an update on the WPI's studies and Columbia's Ian Lipkin gave an update on the XMRV/CFS study he is coordinating for the National Institute of Allergy and Infectious Diseases.

Researchers at UMDNJ published data on cerebrospinal fluid samples obtained from 43 CFS patients that were tested for XMRV using PCR. No evidence of XMRV, other murine leukemia virus-like viruses, or a variety of other pathogens was found. They also sent samples to VIP Diagnostics, the clinical laboratory owned by the Whittemore Peterson Institute, for testing by PCR and co-culture. VIP Diagnostics performed the testing on blinded pairs, using a permissive LNCaP cell line that had not been exposed to XMRV as a control. VIP Diagnostics' results were negative as well. (Annals of Neurology, Apr. 5, 2011)

Three new studies of XMRV in other populations found no evidence of the agent in a group of 540 HIV-positive subjects in London, 110 prostate cancer tissue samples or 200 blood samples obtained from individuals with prostate cancer. None of the samples obtained from control subjects were found to be positive either.

A letter published in the Lancet Infectious Diseases raises questions about XMRV and recent publications suggesting it arose from a laboratory recombinant.

Several other studies and abstracts providing insights on the basic biology of XMRV have been published recently. Upcoming scientific meetings feature sections on XMRV. Updates are regularly posted to our XMRV resources page and conferences and meetings page.

JOURNAL HIGHLIGHTS

MODEL FOR ETIOLOGY: Dr. Leonard Jason's group at DePaul University builds on earlier publications that propose kindling as a model for ME/CFS. Kindling occurs when an organism is exposed repeatedly to an initially sub-threshold stimulus resulting in hypersensitivity and spontaneous seizure-like activity. The authors propose that seizure activity spreads to nearby areas in the brain, leading to the varied symptoms that occur among patients with ME/CFS. Kindling may also be responsible for high levels of oxidative stress, which has been found in patients with ME/CFS. (Neuroscience & Medicine, March 2011; open access.)

OXIDATIVE STRESS: Michael Maes et al provided evidence from a study of 56 patients with ME/CFS and 37 healthy controls that plasma peroxide concentrations in the blood were higher in patients than normals. There was also a trend toward higher levels of a lipoprotein called oxLDL in patients compared to controls. Using both measures, the investigators could distinguish cases from controls and they hypothesize that ME/CFS is characterized by increased oxidative stress based on these measurements and other published studies. (Medical Science Monitor, April 1, 2011)

POST-SARS CFS-LIKE SYNDROME: In 2003, Severe Acute Respiratory Syndrome (SARS) spread from southeast Asia to North America causing a public health panic and many deaths. Fever, cough, muscle pain and air hunger were the primary presenting symptoms, and many people who did not die from the acute infection failed to recover. There has been little long-term follow-up of post-SARS cases. Moldofsky and Patcai compared 21 health care workers who had documented SARS and were not well enough to return to work 1-3 years later to 7 healthy females and 21 females who met fibromyalgia (FM) criteria. They found that the chronic post-SARS syndrome shares clinical and sleep features with CFS and FM. A longer term, large scale study is needed to establish the contribution of epidemic and pandemic viral disease to the disordered sleep, chronic fatigue and other symptoms of CFS/FM. (BMC Neurology, March 24, 2011)

OTHER RESEARCH NEWS

The CFIDS Association issued a new Request for Applications (RFA) on April 6, 2011, soliciting research proposals for studies that will advance diagnostics and treatments for CFS. The RFA is being widely circulated in the research community. Letters of Intent are due on June 3, 2011.

The National Institutes of Health (NIH) ME/CFS State of the Knowledge Workshop was held on April 7-8, 2011. NIH Director Francis Collins addressed the meeting and several other top Department of Health and Human Services and NIH staff attended all or part of the workshop. Secretary Kathleen Sebelius expressed her support in a letter sent to workshop participants. Resources from the meeting are gathered here.

British Columbia's Ministry of Health has announced funding of $2 million for a clinical and research study will help patients with a variety of complex chronic diseases, such as chronic Lyme disease, fibromyalgia, and CFS, with screening, diagnosis and treatment. Details are expected later this summer.

In the April 15, 2011 issue of the journal Transplantation, Rajeev Desai and James Neuberger of the NHS Blood and Transplant (United Kingdom) report the results of a small retrospective study of 10 deceased solid organ donors who had been diagnosed with CFS (as defined by Fukuda) and the health of the recipients of their organs. In a Letter to the Editor, Desai and Neuberger state that none of the 18 organ recipients had developed CFS in the post-transplant follow-up period (average 38 months, range 15-71 months). The donors had donated a total of 27 organs: 17 kidneys, 6 livers, 2 lungs, 1 heart and 1 pancreas. They conclude with the suggestion that there is no justification for excluding those with CFS from organ donation, due to the shortage of organs and significant mortality of those awaiting transplants. The authors acknowledge the conflicting evidence for XMRV infection in CFS and indicate that transmission of viruses by solid-organ transplantation is well-recognized in cases of hepatitis B and C and HIV. There is generally more aggressive disease in the recipient than there was in the donor due to immunosuppression. This study was aimed at whether organ transplants could transmit CFS and the report does not reflect testing either donors or recipients for XMRV. (Transplantation, April 15, 2011)

The NIH Pain Consortium will hold its annual conference on April 14 on the NIH campus. Association CEO Kim McCleary and other representatives of the Chronic Pain Research Alliance will be in attendance.

POLICY MATTERS

President Obama Commits to Learn More About CFS Research
From: Robert Miller and family
Contact: bobmiller42@msn.com

Last week, President Obama made a promise to all ME/CFS patients and their families at a Town Hall meeting in Reno. (See CNN article: http://content.usatoday.com/communities/theoval/post/2011/04/obama-will-root-out-manipulation-of-gas-prices/1 and YouTube video of event: http://www.youtube.com/watch?v=U2IFtkXofss#t=47m01s)

Mr. Obama stated: "Now, I will confess to you that, although I've heard of chronic fatigue syndrome, I don't have expertise in it. But based on the story that you told me, (Courtney Miller) what I promise I will do when I get back is I will have the National Institute of Health explain to me what they're currently doing and start seeing if they can do more on this particular ailment. Okay?

So, it's time to let President Obama know we appreciate his personal attention and promise by sending him a brief thank you for looking into our ignored illness. The more he hears from us, the more he will understand the gravity of our situation. We ask patients, their families, friends and loved ones to email President Obama at this link: http://www.whitehouse.gov/contact. It is a "Fill-In Page" which makes it easy. Select "Health Care" for the subject.

Please make your letter brief and to the point. I have provided an example below:

Dear Mr. President,

I wish to thank you for your promise to Chronic Fatigue Syndrome (ME/CFS) patients at the recent Reno Town Hall Meeting, when you said that you will ask NIH to explain what the institutes are doing to research our illness and encourage them to do more. I believe that scientific research on biomedical causes can restore my life.

Sincerely,
Name: John Doe
Location: Miami, FL
Registered Voter (if applicable)
Time Ill: 12 years

The federal CFS Advisory Committee will meet May 10-11, 2011 in Washington, D.C. The meeting agenda will be posted to the committee website. The meeting is open to the public. Written testimony and requests to present oral testimony should be sent to cfsac@hhh.gov by April 18, 2011.

Lawmakers avoided a government shut-down by reaching a deal to cut $38 billion in spending from FY2011 appropriations. Here's an article from The Nation on how it will impact medical research. Research! America has issued an action alert to contact Congress about the cuts.

Several organizations are planning policy-related events to engage lawmakers on May 12, International CFS/CFIDS/ME Awareness Day. P.A.N.D.O.R.A. and Speak About M.E. will host a May 12 Capitol Hill Lobby Day to support recommendations of the CFS Advisory Committee.

New rules for the Americans with Disabilities Act were issued on Apr. 2, 2011, broadening the scope of workplace protections for those with disabilities. This White House blog by senior advisor Valerie Jarrett explains the changes and their impact.

OTHER MEDIA COVERAGE

Page D4 of the April 12, 2011 edition of the Wall Street Journal featured an article by Amy Dockser Marcus about research into remnants of ancient viruses that may play a role in human diseases like CFS, MS and lymphoma. Research initially funded by the CFIDS Association in the lab of Brigitte Huber to investigate an endogenous retrovirus called HERVK18 was featured in the article.

Host Llewelyn King featured a panel discussion of CFS on his PBS program, "The White House Chronicle" that aired April 12, 2011. Guests were Leonard Jason, PhD (DePaul University); Amy Dockser Marcus (Wall Street Journal); Frances Sellers (Washington Post); and Deborah Waroff (author/patient).

Former law professor and author Toni Bernhard, JD, launched a new blog for Psychology Today in which she explores Buddhist themes of coping with chronic illness, Turning Straw Into Gold. Her third post, "The Stigma of CFS," resonated with many readers with a variety of diagnoses, from CFS to MS to lupus.

BioTechniques, the journal of life science methods, examined the research published in February 2011 by six labs led by Dr. Stephen Schutzer that identified a group of 738 protein markers in the spinal fluid of CFS patients. The news article was published online on April 6. (For more details on the research, see the Association's analysis of the study.)

ASSOCIATION NEWS

How do you use the internet?
A recent survey released by the National Research Corporation polled nearly 23,000 patients with a variety of diagnoses and found that 41% of them use social media sites to look for health information. Of those, nearly 94% said Facebook was their site of choice. According to the Pew Internet and American Life Project, in 2009, 39% of online patients (diagnosed with various health conditions) used social media sites. Of those, only 12% have gotten health information from those sites.

To follow up on these general surveys, the CFIDS Association would like your input on how you use the Internet to obtain information about chronic fatigue syndrome (CFS, also known as ME/CFS and CFIDS). By responding to our short, 10-item survey you will help us better serve your information needs.

All responses are completely anonymous and voluntary. Results will be reported in the aggregate only. Only one response is permitted per computer. The survey will close on April 28, 2011. Please share this link with others who use the Internet to get information about CFS: https://www.surveymonkey.com/s/OnlineInfoSurvey

CHASE Giving
Vote for the CFIDS Association in the Chase Community Giving challenge!

Chase Community Giving was introduced in 2009 as a new way forward for giving. This unique program lets fans of Chase Community Giving vote to help determine where Chase donates millions of dollars. In total, millions of people have helped Chase donate $10 million to 300 winning charities in 35 states. The CFIDS Association of America is eligible to participate in the Spring 2011 challenge and we want your vote!

Here's how it works: Chase Community Giving Spring 2011 will have two rounds of voting. Round 1 will begin on April 21 and run until May 4, 2011. The 100 eligible charities with the most votes will win $25,000 and move on to Round 2. Based on the votes received in Round 2, which goes from May 19 until May 25, 2011, these charities may be able to receive up to $500,000 in additional donations!

Everyone who becomes a part of Chase Community Giving on Facebook gets 10 votes to use during Round 1 and five votes during Round 2. You can only vote for each eligible charity only once, although you can get your friends to rally behind your favorites by sharing them through Facebook and Twitter. Visit Chase's FAQ section for more details on Chase Community Giving.

Beginning tomorrow, April 21, you can cast your vote for the CFIDS Association of America at http://apps.facebook.com/chasecommunitygiving/?src=badge - search for "CFIDS Association." We'll send reminders throughout Round 1 and will update you on our position on the leader board. Please cast one of your votes for the CFIDS Association!

"Take Five" with scientific director Suzanne Vernon, PhD, addresses questions that followed the April 7-8, 2011, State of the Knowledge Workshop at NIH.

The CFIDS Association of America has long recommended that CFS patients not donate either blood or organs. Here is our statement and other information about these important issues.

UPCOMING EVENTS

The Massachusetts CFIDS/ME & FM Association is pleased to announce the first 2011 educational forum. Dr. David Bell will speak about "The Current Status of XMRV Research with Comments on the NIH State of Knowledge Conference" on Apr. 16. For further information, details and to register please visit: http://www.masscfids.org.

The National ME/FM Action Network is hosting a public lecture on May 1, 2011, in Calgary, Canada featuring Daniel L. Peterson, MD, and Dr. Logan Chamberlain. Learn more about this and other events in Calgary.

The sixth annual Invest in ME international biomedical conference on ME/CFS will be held May 20, 2011 in Westminster, London.

Click here for a complete listing of upcoming events.