Best Chronic Fatigue Syndrome Research Effort
With five chronic fatigue syndrome (ME/CFS) studies last year and three more in 2011, Dr .Julia Newton of the University of Newcastle in the UK has been on a roll. With her emphasis on autonomic nervous system and metabolic issues in disorders ranging from ME/CFS to liver disease to HIV, she could be uncovering the roots of fatigue and orthostatic intolerance in several disease.
Most Exciting ‘New’ Research Endeavor
PHANU in Australia makes a big splash at the Ottawa conference, collaborates with Dr Peterson/Simmaron Research, wins a big grant, and then gets an offer they can’t refuse and moves from their already fine facility to a newer and better one. Expect to hear much more from PHANU…
Most Exciting New ME/CFS Study
The Mt Sinai ME/CFS Research Center, with Dr. Enlander at the helm, starts it’s research program off with a bang with a major post-exertional study looking at the cardiovascular functioning, the immune system, gene expression, gut biology, and pathogens (and I could be missing something :))…this is a biggie.
The Open Medicine Institute opens its new website to reveal a commitment to bring a ‘big data’ focus to produce research and treatment breakthroughs in complex disorders such as chronic fatigue syndrome. Among other things a top ten list of research priorities, a patient registry, a biobank and a bioinformatics platform has or is being produced and more is on the way. This is thinking big on a big scale :). An interview with Dr. Kogelnik is coming up shortly.
No less than 28 major ME/CFS figures participated in OMI’s OMI-MERIT’s initiative to prioritize and fund critical research needs. The OMI also enlisted major ME/CFS physicians to participate in the CDC’s diagnostic assessment trial which is being expanded this year.
CDC Toolkit vs IACFS/ME Primer – in the contest between the ‘brochure’ and the ‘Primer’, the IACFS/ME primer wins hands down. With the Primer in hand, the CFS Federal Advisory Committee (CFSAC) immediately voted to request that the CDC can the Toolkit.
Most Unlooked For and Exciting Political Moment
Courtney Alexander’s public moment with President Obama results in a top political adviser meeting with the NIH (for the first time with any disease) and promising to elevate chronic fatigue syndrome’s importance.
Biggest ME/CFS Bummer
The hope that the FDA was going to use Ampligen as a poster child for its commitment to get drugs to needy patients more quickly faded as an FDA Advisory Committee followed a decidedly negative FDA presentation and mostly voted the drug down. We await the FDA ruling on Feb 2nd for the final determination.
Second Biggest ME’/CFS Bummer
XMRV is second biggest bummer for 2012 only because the big hits the finding had taken in 2011 made it’s eventual fate seem likely. Still, the negatives were huge with Dr. Mikovits and the WPI both taking big hits to their reps. On the positive side, the press coverage and research bring ME/CFS to the fore in a way it had never been before.
Biggest General Health Care Implications
In a surprise the Supreme Court upholds an Affordable Health Care Act that outlaws penalties for pre-existing conditions and promises to provide better health insurance opportunities for people with lower incomes
Biggest Impact by Smallest Country
Norway, (that’s the ‘Kingdom of Norway’ , thank you), population 5,000,000, becomes the center of ME/CFS patients hopes as two oncologists doggedly pursue and ultimate publish a study suggesting that Rituximab, a chemotherapy/autoimmune drug, of all things, produces fantastic results in some people with this disorder.
Most Exciting Moment
Most Untimely Grant Denial
Just months after the Rituximab trial results are published, the Congressionally Mandated Defense Program not only fails to fund the CFIDS Associations multi-center, autoimmune autoantibody grant proposal backed by numerous high-level researchers, but reportedly shreds it in the process of doing so.
Biggest Odds Beater
The CFIDS Association of America beats out hundreds of other proposals to place two proposals in the top four. One of their proposals is the top winner.
Biggest Say What? Moment
Poised with the opportunity to turn the chronic fatigue syndrome world on its head (and win a small country ever-lasting glory, at least in the ME/CFS world) , the Norwegian Research Council votes not to fund a definitive multi-center Rituximab study, leaving Norwegian befuddled and wondering what went wrong.
- See the Rituximab Watch for more
- The long awaited Baraniuk spinal fluid followup study – finished enough to be on posters at Ottawa a year ago- doesn’t make to publication last year.
- The double blinded Valycte Montoya Study begun when….err….way back then…remains in limbo.
Materials disappear shortly after Dr. Mikovits is let go from the WPI, lawsuits are filed, a research assistant fesses up, and Dr. Mikovits spends a few nights in jail.
Most Graceful ‘Retreat’
After forcefully defending the WMRV discovery to the point of calling the motives of other researchers into question, Dr. Mikovits calmly puts the XMRV discovery to bed at the Lipkin press conference.
Biggest Shock / Community Loss
Devoted supporter, theorist and developer of the Methylation protocol used by many, Rich Van Konynenburg dies in his sleep.
Biggest Advocacy Loss
Marly Silverman, the founder of PANDORA and numerous other efforts ‘retires’ , removing one of the most dynamic voices from the community.
Biggest Advocacy Win
Advocates, somehow, prod the FDA into holding the first stakeholders meeting for an individual disease since HIV..An advocacy Teleconference is held and a Stakeholders Meeting is on tap for Spring, 2013..
Most Gut Wrenching Moment
Inspiration to many, long term chronic fatigue syndrome patient Patrick Kelley takes his life after many years of illness.
The Year of the King – Llewelyn King and Deborah Warof travel across the country interviewing patients and professionals fpr their ME/CFS Alert page. You can find interviews with Dr. Peterson, Dr. Chia, Dr. Kogelnik, Bob and Courtney Miller, the Whittemores and more at ME/CFS Alert.
Most Published Patient
Tom Kindlon easily wins the award by writing strong enough rebuttals and analyses of CBT/GET trials to get him cited on medical indexes.
Biggest Individual Disappointment
Long time ME/CFS champion, FDA Advisory Committee member Dr. Komaroff votes no on every question for Ampligen, sparking memories of his enthusiastic review of the Dr. Reeves CDC CFS program, not long before Dr. Reeves was canned.
Least Looked Forward to Decision
The FDA, taking the votes of the Advisory Committee, into account, announces Ampligen’s fate on Feb 2nd.
Biggest Shoes Not Filled
A tie between Dr. Nancy Lee of CFSAC and Dr. Maier of the NIH following in the steps of two particularly dynamic individuals, Dr. Wanda Jones and Dr. Dennnis Mangan - who end up being sorely, sorely missed..
After pulling into first place the ME/CFS Community Center runs out of gas in the last two days of the Citgo Gas Refueling contest and just misses winning $5,000 in gas cards for the ME/CFS Community
Biggest Contest Win
NIDA pulls out 20K and Phoenix Rising comes roaring back in the last day to win 10K in Chase Community Giving Contest. (Runnerup – just after that CFS Solutions of Michigan brings in $5,000 in Citgo gas cards in the Citgo Refueling contest.)
Best Community Effort
FDA says they are ‘delighted and overwhelmed’ by the 750 comments they receive for the Ampligen hearing. The ME/CFS community then delights them more by overwhelming FDA servers during the hearing…and then comes the patient testimony….If the panel didn’t get it by then they never will.
Most Comprehensive ME/CFS Book
In a year featuring a bevy of chronic fatigue syndrome treatment books (to be reviewed later) Erica Verillo’s new ebook stood out in its size and comprehensiveness.
Best Mind/Body Resource Blog for ME/CFS
Johannes Starkes new CFS Recovery Project blog promises to provide all manner of exercises designed to relax and rejuvenate.
Biggest Individual Reversal
Many stories could fit this category but the testimony I read at the FDA Advisory Committee meeting in Dec. 2011, from Mary Dimmock’s son, dating back a few years, really struck me. Mary’s son went from treking solo across China, Nepal and other parts of Asia. to being often bed ridden in almost a flash. What a huge reversal for that young man.
First ME/CFS Murder Mystery!
It’s a mystery in more ways than one as a bedbound ME/CFS sleuth investigates an old murder when he returns home to try and recover in “The Missing Room”.
Four days old…just a baby…that would be this one
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