The Best, Worst, Biggest, Least…2008 in a Nutshell

April 10, 2009

Posted by Cort Johnson


petersonwhittemoreMost Remarkable Achievement (of the Decade)
- As funding at the NIH and CDC plummets a major research/treatment center, the Whittemore-Peterson Neuro-Immune Institute – begins to rise out of the deserts of Nevada just over the hill from Incline Village. The WPI is a testament to the tenacious commitment of three people; Annette and Harvey Whittemore and Dr. Dan Peterson.

mcclearywebMost Dramatic Moment: Kim McCleary of the CFIDS Association of America stands up in a federal advisory committee meeting (CFSAC) and rakes the CDC’s CFS research program over the coals for mismanagement, for squandering funds and poor productivity.

Best Conference - After years of seeing the viral element in ME/CFS downplayed the HHV-6 Foundation hosts the first Conference (well a Symposium) devoted entirely to viruses in ME/CFS.

vernonwBest Job Shift/Best Job Hire: In a startling move the head of the CDC’s CFS laboratory, Dr. Suzanne Vernon, jumps ship and becomes the Research Director at the CFIDS Association of America. She publishes 6 papers, runs a successful Research Initiative, brings several new high level researchers to the field and at the IACFS/ME a year later she receives a standing ovation as she accepts an award for her services. Meanwhile she begins an effort to overhaul how ME/CFS research is done.

Least Bang for the Buck: Tagged the ‘Research to Nowhere’ program by Kim Mc Cleary the CDC ‘s CFS research program spends millions of dollars on paper projects even as they cut off funding for outside projects leaving other researchers to scramble for funds.

Biggest Break With the Past – The Whittemore-Peterson Neuro-immune Institute comes out with its fists flying – stating that ME/CFS (not chronic fatigue syndrome) is more serious and rarer than CDC estimates proclaim and is primarily immune mediated. The WPI announces the existence of a cancer cluster, asserts it has identified a documentable subset, and immediately begins the most extensive array of immune studies ever done on the disease.

danrenojpgBest New ME/CFS Website: ME/CFS patient and internet marketing expert Dan Moricoli begins  ME-CFSCommunity Center, the first interactive social networking and it’s companion CFSKnowledgeCenter. ME/CFS patients respond to this new opportunity with an astonishing depth of communication.

See A Conversation with Dan Moricoli

Most Successful Effort: the CFIDS Association of America holds it’s breath and goes for the gold; thinking that their million dollar Research Initiative will probably take two years the ME/CFS community vigorously responds and the money is raised in less than a year.

caaresearchcampaignwebBest Timing: the CFIDS Association of America begins its biggest Research effort ever just as economy starts teetering and finishes it up shortly before it completely tanks.

Worst Timing: the CFIDS Association of America starts its annual fundraising effort to pay for its everyday functioning just after it’s tapped its donors for the Research Initiative and just as the economy goes into a freefall. Funding shortfall’s force the organization to cut back in several areas.

reevesMost Revealing Comment – Dr. Bill Reeves of the CDC states that ME/CFS is not a disease but a disorder that may lead to a (real) disease and characterizes chronic fatigue syndrome patients as being in a state of ‘unwellness’.

Biggest Little WebsiteDr. Bateman’s OFFER which contains  hidden with its archives, video after video of prominent ME/CFS researchers and physicians talking about ME/CFS at the OFFER Conferences.

Biggest Break With Reality – Random sampling studies by the CDC using their new empirical definition reveal that 25% of the study participants have never seen a doctor for their illness. Rather than questioning whether the definition might be a bit too lax the CDC plows ahead setting the stage for a radical leveling down of the illness.

april-6-029Most Startling Research Advance – The Pacific Fatigue Lab publishes a paper indicating that ME/CFS patients exhibit a unique metabolic dysfunction in repeat exercise tests – thus potentially validating for the first time ME/CFS patient’s reports of post-exertional malaise. The Pacific Lab backs up those claims with new data at the 2008 IACFS/ME conference.

Biggest Treatment Shock – Several severely ill patients claim that two programs, the Amygdala Retraining Program and the Lightning Process , which utilize neurolinguistic reprogramming and techniques, have provided them significant benefits.

reevesResearcher Most Rapidly Sawing Off the Branch He’s Sitting On – Dr. Bill Reeves for determining – and then telling the world – that he’s using taxpayer dollars to study ‘unwellness’ and that the disorder he’s studying is not a disease at all (but may be a precursor to a disease).

Toughest Knocks The Dubbo project uncovers the first evidence of what’s occurring as ME/CFS patients become ill…..and fails three times to get grant funding. 

thelmalouiseBest Thelma and Louise Imitation - Suzanne Vernon and Kim McCleary of the CFIDS Association of America hit the road travelling to the Washington DC, Denver, California and to Japan as they break out the CAA’s Research Initiative.

Biggest Letdown - In the first external review in ten years several prominent ME/CFS researchers present a mild critique of the CDC’s CFS research program just as it gets hit by a major scandal. They ignore the scandal thus giving the program the seal of approval it needs for ‘business as usual’ to prevail. The reviewers also endorse the Empirical definition and tag the CDC as the lead agency in providing medical advice even as an improved CFIDS Association of America provider education program appears. The CDC immediately posts their review prominently on their website.

Biggest Treatment Disappointment – After posting amazing results in a preliminary trial Valcyte produces decidedly less than exciting results in Dr. Montoya’s full-blown study at Stanford.

Least Appreciated Breakthrough – The CFIDS Association of America supplants the tired Physician toolkit on the CDC website with its new Doctor Education program on Medscape. Participation in the program receives rave reviews from Medscapes officials .. but is greeted mostly with silence in the patient community.

Biggest Breakthrough Still Waiting to Happen – Fifteen years after the first effort to get Ampligen approved FDA finally announces it’s ready to do a final review of Ampligen….and then pushes it back again. Meanwhile Hemispherx stock reportedly drops to 37 cents.

ssimonwebBest Cry: Scott Simon of National Public Radio brings the house down when breaks into tears as he describes the plight of his good friend Lauren Hillenbrandt at the CFIDS Association of America’s Congressional briefing.

Most Astonishing Verbal Ability – Dr. Mikovit’s ability to lay out complex topics in paragraph form and then segue between them in a seemingly effortless fashion all the while not appearing to draw a breath.

Most Glaring Absence – after having his arm twisted to show up at Symposium on Viruses on CFS (and then quickly disappearing) Dr. Reeves fails to show up at the big bi-annual International Conference on ME/CFS in Reno. The CDC’s participation, consisting of efforts by junior researchers, suggests the largest ME/CFS research program is lacking in relevance and coherence.

2 comments

{ 2 comments… read them below or add one }

Anita Patton April 20, 2009 at 2:30 pm

Hi Cort! I truly appreciate your writings, and the thorough reports that you give. Your information is wonderful, thank you so much!

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Michelle April 20, 2009 at 11:53 pm

Great review. Had me nodding and letting out “yep” and “definitely” a lot. ;-)

For Best Patient Presentation, I would nominate the presentation that the Pacific Fatigue Lab did at a conference in Canada. I’ve been raving about it since I saw it and have been sharing it far and wide as I found it so empowering. It gave a clear explanation about metabolic dysfunction and how to manage our condition.

As for the Medscape CME presentation the CFIDS Association facilitated, I’m not sure what, as a patient, I could do with that aside from share it with my doctor. It was definitely superior to CDC’s “toolkit”.

And Bill Reeves…well, I think the telling moment for me was realizing the new “Empirical definition” prevalence figures were remarkably the same as those of the Wessley-inspired prevalence numbers from 1997 (Oxford definition, I think). Just too remarkable a coincidence. “Mind-body condition” indeed.

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