Most Exciting Treatment Trial – After years of treating FM patients, Dr. ‘Skip’ Pridgen raises over $3 million dollars to begin a multi-center treatment trial combining Valtrex and Celebrex
Most Out of the Blue Treatment Possibility – citing the work of some Italian doctors, Karen Lee Richards experiments with and does well with Vit B1 – setting the stage for a massive exploration of this affordable option
Best Chance To Provide New Treatment Options NOW – the OMI’s crowdfund attempt to produce a study showing ME/CFS patients with MTHFR mutations respond VERY WELL to B-12/folate supplementation could provide new treatment options for many.
The Most Flagrant, Save-Our-Skin, We’ve Gotta Make This Treatment Work Somehow, Changes to a Study – the authors of the PACE study, trying to save their $8 million dollar study, institute major changes to the study in order to make it look like people actually recovered. (Thank god no-one noticed. Whew!) (See Tom Kindlon’s comment below for more).
Biggest Movement By an Alternative Treatment – studies suggest that Low Dose Naltrexone, which drug companies cannot make money off, may be helpful in FM. Dr. Klimas reports LDN is her first drug for pain in her FM/ME/CFS patients.
Most Exciting Hypothesis – the Vagus Nerve Infection Hypothesis could explain many of the puzzles of ME/CFS including how an infection triggers the disorder and seemingly disappears.
Most Exciting Research Advance – Fibromyalgia -Two small fiber nerve studies suggest that small nerve fibers controlling the autonomic nervous system, blood flows and sensory impulses could be damaged in many people with FM (and perhaps ME/CFS) – opening an entirely new field of investigation
Best Grant Achieved – The Open Medicine Institute scores major grant to study a promising but little studied field in ME/CFS – the HLA genes
Biggest déjà vu Moment – Just after Dr. Julia Newton comes out with a study indicating blood vessel problems in the brain may cause ME/CFS, a researcher at an Autonomic Nervous System conference reports exactly same findings in POTS – making one wonder if the two disorders are simply different variations of the same theme.
Most Confounding Result – The Chronic Fatigue Initiatives Lipkin pathogen study finds almost no viruses (except for Anelloviruses) in the blood of patients, a good subset of which do respond to antivirals.
The Most Overlooked Result – the Lipkin study does find quite a few Anelloviruses – more on that later.
Most Intriguing Grant Not Yet Fully Funded – Forget the viruses…Simmaron Research Institutes becomes the only group to get access to the NIH’s samples for a study to see if tick-borne (hmm- Lyme?) or mosquito-borne (hmm- encephalitis?) illnesses contribute to ME/CFS
Most Dismaying Finding – Research finding suggests that the immunoperoxidase test Dr. Chia used might not always be picking up enteroviruses.
Most Welcome Movement at a Major University – demonstrating that he really is making inroads at Stanford, Dr. Montoya not only gets the University to support the IACFS/ME Biannual Conference, but produces a Symposium on ME/CFS dominated by Stanford researchers
Seemingly Sneakiest Move and Biggest Kerfuffle – The DHHS, without informing anyone, including their own experts, contracts with the IOM to produce a clinical definition for Chronic Fatigue Syndrome. The community unites in dismay like it never has before.
Biggest What’s Wrong with This Picture Situation – while the Norwegian government devotes a considerable amount of its research budget to funding a Rituximab trial, the mighty United States – despite study evidence indicating Rituximab can be effective in ME/CFS – sits on its hands.
Worst Move By a Federal Agency – after an extremely critical hearing the FDA panel in confusing fashion votes that Ampligen is a safe enough for ME/CFS patients to try, but has not been proved effective – so the only drug under review for ME/CFS at the FDA is rejected.
Second Biggest Opportunity Missed – citing several strange reasons, the CDC decides not to include repeat exercise testing in their multi-site study, thus missing the opportunity to prove a metabolic dysfunction underlies the exercise problems in ME/CFS. Dr. Unger takes the hit from the patient community, but some reports suggest the doctors simply weren’t on board.
Biggest Flunk by a Federal Agency Over Time – An analysis indicates that the NIH is spending about as much on chronic fatigue syndrome as it did in 1993.
Best Move By a Federal Agency – The FDA’s ‘Voice of the Patient’ document accurately portrays the voice of the ME/CFS Community
Biggest Turnaround by a Government – approximately six months after the Norwegian government declines to fund a Rituximab trial, they decide to fund one – proving that advocacy and outcries do work.
Best Presentation Before Parliament 🙂 – Dr. Peterson gets down to brass tacks as he addresses the Swedish Parliament on ME/CFS. Meanwhile the Dutch wind up years of effort as they present Parliament with a petition – and a decision to make – as they demand ME/CFS be accepted as a biological disease.
People and Community
Biggest Vision – the Open Medicine Institute brings experts together to agree ME/CFS research and treatment goals, convinces the CDC to upgrade their multi-site experts study, snags a big grant and is building a online system to gather BIG data from ME/CFS patients. It’s all part of the the biggest plan to move ME/CFS and FM forward yet generated.
Most Amazing Recovery Story – Lauren Stiles sudden collapse leads to years of dead ends until she finally finds the right doctor who does the right test and finds the right treatment. After being diagnosed with FM, ME/CFS and multiple other disorders it turns out she has Sjogren’s Syndrome. IVIG does not return her to health, but she does improve greatly.
Most Surprisingly Resignation – Citing family changes, Kim McCleary, the head of the CFIDS Association of America for just about ever, resigns. She quickly lands on her feet and becomes the Director of Strategic Initiatives at FasterCures focused on improving the medical research system to develop faster cures.
Most Disappointing Performance By ME/CFS Professionals – While Dr. Komaroff votes three times to reject Ampligen, several other professionals with no ties to ME/CFS vote to approve the drug. Dr. Unger’s no votes on two of the questions make one wonder what use having ME/CFS professionals on a federal panel is.
Most Incredible Show of Support from the ME/CFS Community – the Canary in a Coal Mine fundraiser for a film on ME/CFS raises an incredible $200,000 in less than a month
Best Hire – Dr. DeMeirleir becomes Medical Director of the Whittemore-Peterson Institute, putting a well known ME/CFS physician and researcher at the helm of an important Institute in the ME/CFS universe.
Most Exciting Advocacy Event – Bob Miller skydives for ME/CFS
Scariest Advocacy Event – Bob Miller goes on a hunger strike for Ampligen approval
Blogs and Books
- Successful Low Dose Naltrexone Fibromyalgia Trial – 12,768
- Changing the Gut Flora through Diet (Ken Lassesen)– 11,465
- Small Nerve Fiber Study in Fibromyalgia – 10,698
- Glutamate -One More Piece of the Puzzle in ME/CFS (Marco) – 10,151
- Are Oxygen Starved Tissues Causing Problems in ME/CFS and FM – 8,593
- B-1 Treatment for Fibromyalgia and Chronic Fatigue Syndrome – 8,346
- Best Diet for Chronic Fatigue Syndrome? (Mediterranean Diet) – 7,883
- Deconditioning, Exercise and Recovery -the CDC Talk by Dr. Klimas – 7,713
- Single Cause for ME/CFS (Dan Neuffler) – 7,582
- Not Fatigue After All (Sensory Gating – Marco) – 7,487
- Lipkin Study Results (Simmaron Rising) – @7,000
Best Blog Series -Tie: Neuroinflammatory Series by Marco, and Carol Lefelt’s series “A Chronic Fatigue Syndrome Chronicle”
Best New Book – Erica Verillo’s massive compedium of ME/CFS treatments (available for download at a cheap price).
Share your pain, make friends, find new treatment options, check out recovery stories and more in the Health Rising ME/CFS, FM and Chronic Pain Forums here