Prolific and diverse, Dr. Newton is at the forefront of autonomic nervous system research in ME/CFS

Prolific and diverse, Dr. Newton is at the forefront of autonomic nervous system research in ME/CFS


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.

Biggest Plans

The OMI's plans include...well, almost everything :); treatment trials, international research efforts, physician networks....

The OMI’s plans include…well, almost everything :); treatment trials, international research efforts, physician networks….

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.

Best Networking

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.

Biggest Mismatch

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.

Despite his pensive look Pres. Obama moves forward in ME/CFS...

Despite his pensive look Pres. Obama moves forward in ME/CFS…

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

Norway shows breakthroughs can happen anywhere attentive researchers are found

The biggest potential breakthrough comes from Norway..not the U.S.

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

See above.

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.

CAA wins top prize in Sanofi competition

CAA wins top prize in Sanofi competition

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.

MIAThe Missing In Action  Awards – The two winners for the most long awaited studies…

  • 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.

Oddest Moment

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.


Rich’s contributions and support will not be forgotten.

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..


A charismatic figure, Patrick’s death caused dismay community-wide

Most Gut Wrenching Moment

Inspiration to many, long term chronic fatigue syndrome patient Patrick Kelley takes his life after many years of illness.

Blogger Award

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.

Dr. Komaroff is one of  the 5  members (of 13) to vote no on every Ampligen vote

Dr. Komaroff is one of the 5 members (of 13) to vote no on every Ampligen vote

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.

Big shoes go unfilled at CFSAC and the NIH for ME/CFS

Big shoes go unfilled at CFSAC and the NIH for ME/CFS

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..

Closest Loss

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.

Big Book...BIG Accomplishment

Big Book…BIG Accomplishment

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”.

Newest Website

Four days old…just a baby…that would be this one :)




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