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News

Most Welcome New Book – Melinda Malott produces a book that explains FM and ME/CFS to kids – How Many Marbles Do YOU Have? A Children’s Chronic Fatigue Syndrome and Fibromyalgia Book

Longest Wait – In a contest between three highly anticipated events:

  • the Rituximab Trial (started in late 2014 to wrap up in 2017)
  • the Canary in a Coal Mine film (begun in 2013, due to wrap in 2017/18)
  • SolveCFS’s drug repurposing results (identified in June, 2013… revealed in ???)

the Canary takes the prize. The good news is that it will surely be worth the wait (it’s being expanded) because the team has made the

The Best Video – Hands down – Jenn Brea’s Canary in a Coal Mine video – still as vivid and engrossing as the day it was released.

Biggest Media Splash – Zeineh’s brain MRI findings prompt the media to report that Chronic Fatigue Syndrome is Real – Stanford Brain Study Sparks Media Reports – “Chronic Fatigue Syndrome is Real”

stanford-chronic-fatigue

The depth of Stanford’s work surprises in 2014

Best Conference – The Stanford Symposium provides a higher percentage of hot presentations than any other conference in memory. Most gratifying is the fact that most come from Stanford researchers, demonstrating that Dr. Montoya has been very effective in getting other faculty involved. Tweeting the Stanford Symposium for Chronic Fatigue Syndrome 

  • Gene expression results indicate ME/CFS is a close match to “systemic inflammatory syndrome.”
  • Brain MRI findings highlight basal ganglia dysfunction and may provide a biomarker.
  • The Zinns find ME/CFS patients’ brains are asleep when they should be awake and suggest a “limbic encephalopathy” may be present.
  • Younger’s “Good-day, Bad-Day” study suggests problems with leptin may cause microglial activation and trigger an immune cascade.
  • Cytokines suggest ME/CFS patients have a unique inflammatory and autoimmune profile.

Research

Most Jaw-Dropping Study – it will take a year to run all 600 samples through Davis’s mighty Immune profiling machine at Stanford’s Human Immune Monitoring Center. By the time it’s done, you can expect biomarkers, subsets, and a lot more to come out of the biggest study ever done on ME/CFS: Comprehensive, Rigorous and Deep: Is Stanford Going to Solve Chronic Fatigue Syndrome?

stanford-me-cfs study

The biggest ME/CFS study ever – is underway Stanford

Biggest Fall to Earth – Norwegian researcher and doctor Brun Wyller thought he had it all figured out – even going so far as to coin his own definition – but two disappointing studies put the kibosh on his sustained arousal hypothesis, including one in which his medication of choice – Clonidine – actually made patients worse.   Unfulfilled Expectations – Wyller’s Sustained Arousal Hypothesis Takes Another Hit

Nicest Replication– small fiber neuropathy finding are duplicated in every fibromyalgia study done – indicating that somewhere around 40% of FM patients have damage to the nerves  in their skin (and perhaps other places).  The ‘Body’ is Back in Fibromyalgia: Small Nerve Fiber Damage Found

Biggest Potential Paradigm Changing  Result – Dr. Pridgen’s long-awaited Phase II trial results that indicate that Famvir plus Celebrex produces solid results in relieving FM patients’ pain implicates herpesviruses in a “central pain disorder” –Drug Combo in Pridgen Antiviral Fibromyalgia Trial Identified – Some Results Available

leptin chronic fatigue

Younger’s small ME/CFS study suggests all roads could lead to leptin…

Best Image – Jarred Younger’s small “Good-Day Bad-Day” study suggests that all roads in ME/CFS lead to leptin….

Second-Biggest Potential Paradigm Changing Result –  A study suggests that POTS, in many cases, may be caused by an autoimmune disorder – Problems Standing? Studies Suggest Autoimmunity Causes Orthostatic Intolerance: Implications For Chronic Fatigue Syndrome

Most Rewarding Finding – Andrew Miller ties in the fatigue in ME/CFS with other neurological disorders as he implicates inflammation, the basal ganglia, dopamine, the microglia, and reduced “reward” pathways in the brain in ME/CFS patients – Unrewarding Reward: The Basal Ganglia, Inflammation and Fatigue In Chronic Fatigue Syndrome

EBV-chronic-fatigue-syndrome

Demonstrating that it’s tough to keep a good virus down, EBV takes a hit and then pops back up again

Biggest Comeback – Epstein-Barr Virus – not long after Ian Lipkin finds no evidence at all of EBV in ME/CFS, German researchers looking in a different compartment of the blood find that EBV is present – in spades – and uncover some intriguing immune holes as well. EBV Back Front and Center: German Group Finds Immune Holes and Increased Levels of Epstein-Barr Virus in Chronic Fatigue Syndrome

Biggest Pathogen Controversy – Ian Lipkin’s inability to find any evidence of our favorite ME/CFS virus in his large study leaves some to question if he’s looking in the wrong place. Lipkin is now looking for pathogens in white blood cells.

Most Intriguing ME/CFS and FM Hypothesis – the same Japanese researchers who uncovered the neuroinflammation in ME/CFS posit that a “fatigue inhibition system” stops signals traveling from the brain that tell the muscles to become activated, thereby causing fatigue – Fatigue Explained? Japanese Assert Brain Damage Causes Fatigue in Chronic Fatigue Syndrome

Best Reminder That Chronic Fatigue Syndrome is Different… Very Different – The Lights’ exercise study showing that multiple sclerosis patients are VERY fatigued but tolerate exercise pretty well, while ME/CFS patients are a bit less fatigued but fall apart when they exercise – demonstrates there’s more to fatigue than “fatigue”.  A “Fatigue” Disorder No More? – What Multiple Sclerosis Taught Us About Fatigue and Chronic Fatigue Syndrome

precisioni

Zeineh’s oh so precise brain findings suggest he may have found a brain biomaker

Greatest Precision –Zeineh’s finding problems in one very small part of the brain in almost all the ME/CFS patients in his study and none of the healthy controls sparks media reports that ME/CFS is real, and suggests this Stanford researcher may have found a brain biomarker – Stanford Brain Study Sparks Media Reports – “Chronic Fatigue Syndrome is Real”

Most Inflammatory Result – Japanese researchers find evidence that neuroinflammation in the brain is present and possibly widespread in ME/CFS – Neuroinflammation: Putting the ‘itis’ back into Myalgic Encephalomyelitis – Back to the Future For Chronic Fatigue Syndrome?

Second Most Inflammatory Result – Gene expression study at Stanford (unpublished) indicates that the gene activity in chronic fatigue syndrome suggests it’s most like “systemic inflammatory syndrome” and other inflammatory disorders.

pressure-gauge

High intracranial pressure may be causing problems

Highest Pressure Result – Study suggests that increased intracranial spinal fluid pressure may be contributing to ME/CFS – Pressure Building? Study Suggests Cerebral Spinal Fluid Pressure May Be Causing Problems in Chronic Fatigue Syndrome

Most Intriguing Biomarker – Japanese researchers think they may have found the ever-elusive biomarker for fatigue; not surprisingly it involves the autonomic nervous system – Biomarker for Fatigue Could Help Validate Chronic Fatigue Syndrome

Biggest Wake-up Call –  AHRQ report eliminates so many studies from consideration that all it can really say about diagnosis and treatment is that it really can’t say anything – How to Kiss 200 Million Dollars Good-Bye – Report Decries State of ME/CFS Research

Best Reminder that It’s Not All About Fatigue and Pain – Study finds a unique brain abnormality that is associated  not with pain but with sensory distress in FM – Sensory Distress: The Other Side of Fibromyalgia

Treatment and Diagnosis

Biggest Missing Diagnosis  – Study suggests that some people with fibromyalgia may have hyperparathyroidism, a treatable condition – Missing Diagnosis: From Fibromyalgia to Hyperparathyroidism – Could You Have An Entirely Treatable Condition?

Most Striking Recovery Story – To her shock (and profound relief)  Julie Rehmeyer recovers substantial functioning through rigorous mold avoidance – Constant Vigilance: Julie Rehmeyer’s Chronic Fatigue Syndrome Recovery Story

herb-SIBO

Herbs prove to be as effective as antibiotics in treating SIBO in one study

Most Welcome Low-Cost Treatment Finding – Study finds that herbs are as or more effective than antibiotics at treating small intestinal bacterial overgrowth – Cheaper, Safer, Better: the Herbal Approach To Small Intestinal Bacterial Overgrowth

Most Astonishing Treatment Result – Researchers are able to banish all problems with symptoms and cognition in POTS patients WHO ARE BEING TILTED by injecting them with a drug that enhances blood flow to the brain (in a blog coming up soon).

Strangest New Treatment Possibility – Electrical stimulation of the ear may be able to tune up the vagus nerve and turn down that always “on” fight or flight system found in fibromyalgia and ME/CFS – System Reset: New Way To Reduce Fight or Flight Response Found

Most Intriguing Supplement Statement – In an interview with ME/CFS Alert, Jarred Younger states tests in his lab suggest some supplements (mostly herbs) may be better at lowering microglial activation than low dose naltrexone (LDN) – New Chronic Fatigue Syndrome and Fibromyalgia Lab Opens: Jarred Younger Talks

Biggest Definition Letdown and Advance – Lenny Jason discovers that the CCC and ICC definitions misdiagnose from 15-20% of healthy people as having ME/CFS, but a statistical analysis finds that a research definition with just three symptoms may be good enough to do the job. New Era In Creating a Chronic Fatigue Syndrome Definition Opens

Most Possibilities for Treatment –  Jarred Younger presents a long, long (long) list of potentially effective microglial inhibiting drugs and herbs – Microglial Inhibiting Drugs – Providing Hope for Fibromyalgia and Chronic Fatigue Syndrome (ME/CFS)?

Biggest Sleep Surprise – Health Rising’s sleep survey finds that the most consistently effective sleep aid is none other than a really good mattress – The Chronic Fatigue Syndrome and Fibromyalgia Sleep Survey Results

doctor-baffled

A psychologist finds that many of the treatment resistant adolescents aren’t depressed and respond well to antivirals

The Study Most Psychologists Should Read – A Denver psychologist not only finds that many of the adolescents referred to him for treatment resistant depression don’t have depression at all, but have chronic fatigue syndrome – and respond well to antivirals- – Depression in Adolescence – Is it Really Chronic Fatigue Syndrome?

Survey Results Doctors Should  Take Note Of – Almost 80% of those polled said a negative experience involving a ME/CFS or FM diagnosis has put them off from seeing a doctor later. Sixty percent experienced negative consequences and then put off seeing a doctor, and seventy-four percent suspected their diagnosis had led them to receive substandard care. Should You Tell Your Doctor You Have Chronic Fatigue Syndrome or Fibromyalgia?

Biggest Deja Vu – Corinne returns to the Mayo Clinic after twenty years and gets much the same result – Coming Full Circle – The Mayo Clinic – Twenty Three Years Later: Corinne At Dr. Peterson

Most Hopeful Preliminary Treatment Finding – after announcing that ME/CFS patients have 20 times the normal levels of acids in their muscles, Dr Newton notes they are reversible in the labHigh Muscle Acid Accumulations in Chronic Fatigue Syndrome May Be Reversible

chronic-pain-autoimmune-therapies

Workshop suggests immune therapies can work very well in some chronic pain patients

Second-Biggest Possible Paradigm Changer – preliminary results suggest that some people with chronic pain get excellent results from immune therapies – Autoimmune Research Opening Up New Options for Chronic Pain Sufferers

Best Recommendation – The Simmaron Research Initiative’s Immunology Workshop gets immunologists and physicians to agree that immunology tests should be part of a standard diagnostic workup for ME/CFS. Simmaron Foundation’s Immunology Workshop: the Forefront of Diagnosing and Treating ME/CFS

Best Testing Advance – Someone finally comes up with an easy and accurate way to measure blood volume – Measuring Blood Volume in Chronic Fatigue Syndrome the Daxor Way

Most Creative Treatment Combination – The Synergy trial pairs immune and mitochondrial enhancing supplements with methylphenidate in an attempt to boost ME/CFS patients’ energy levels.  Results are due this year – Stimulating Energy: Enhancing the Mitochondria in the Synergy Clinical Trial for Chronic Fatigue Syndrome

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Esther finds that antibiotics for her gut improve her brain functioning!

Most Tantalizing Gut Connection – After decades of struggling with ME/CFS, Esther finds her orthostatic intolerance, depression, and cognitive problems gone and her energy greatly improved with Xafaxin – an antibiotic targeting her gut flora – From the Gut to the Brain: Esther’s Amazing Chronic Fatigue Syndrome Xifaxin Story

Best Reason Not to Over Exercise –In his SolveME/CFS webinar Dane Cook’s brain imaging study shows that not only can you visibly see ME/CFS patients brains get worse after rigorous exercise but that they fall apart on post-exercise cognitive tests as well – A Chronic Fatigue Syndrome Brain on Exercise – Not a Pretty Sight

Most Intriguing Diagnostic Advance – Dr. Peter Rowe finding that simply elongating the muscles during normal activity is causing pain and other problems in adolescents with ME/CFS. This could explain much about the activity restrictions in this disorder – Unrestrained: Dr. Peter Rowe on Neuromuscular Strain in Chronic Fatigue Syndrome (ME/CFS)

Efforts

Most Ambitious Effort One Can Only Hope Succeeds – The End ME/CFS project run by  Ron Davis with two Nobel prize winners on board seeks five million dollars a year to comprehensively and rigorously investigate ME/CFS – “End ME/CFS” Mega Chronic Fatigue Syndrome Project Begins

solvecfs biobank attracts new researchers

SolveCFS BioBank entices 8 researchers new to ME/CFS to study – for the cost of shipping

Best Return on Investment –  Suzanne Vernon and the SolveCFS BioBank somehow manage to entice eight new researchers to study ME/CFS – for the price of shipping them samples!  – They Built It and They Are Coming: Effort Attracts New Researchers To ME/CFS Field

Least publicized/Most Valuable Effort – In the background the Chronic Fatigue Initiative goes on pouring money into every ‘-omics’ study they can think of and making a move to focus on mitochondria. Expect 2015 to be an exciting year as their studies start getting published.

Best Crowdfunder – A bunch of ME/CFS patients build a spectacular website and then rake in over $150,000 to help Ian Lipkin fund his microbiome study in the Microbe Discovery Project

Stories

chronic-fatigue-syndrome-locked-in room

Anne’s world has diminished greatly

Most Weighty Story on Health Rising – A former weightlifter and athletic trainer, Jamison describes his transition from uber-jock to couch potato after a bout of mononucleosis in Carrying That Weight: A Weightlifter’s Chronic Fatigue Syndrome Story

Biggest Change In Perspective –International traveler Anne Ortegren ends up locked within the walls of her apartment after getting a severe case of  ME/CFS – From International Traveler to 43 Square Meters: An ME/CFS Story From Sweden

Feds

CFS grant application denied twice

NIH denies Lipkins grant application…twice

Worst Start – Best Finish – Jennie Spotila uncovers yet another government-funded ME/CFS project that no one knew about until it was underway which was, to boot, to be produced entirely by non-experts. The Pathways to Progress (P2P) project raises fears, but surprisingly turns out to be pretty darn good with its recommendation that biomedical research is “urgently” needed in ME/CFS.  The IOM report is next. Pathway to Progess Indeed – Federal Report for ME/CFS Surprises: Part I

Best Start – Worst Finish – The FDA wows everyone with its Voices of the Patient document and helps out greatly with its statements that ME/CFS is a serious disorder, but then does nothing to address the hurdles it faces with drug development.

P2P report chronic fatigue syndrome provides hope

But for the first time in decades a federal report provides hope for the future at the NIH

Best Reminder of How Screwed Up the NIH Is – Not once — but twice — famed virologist Ian Lipkin’s grant proposal to study the microbiome in ME/CFS is rejected (for different reasons each time).

Most Viewed Video Presentation – Dr. Batemen puts two and two and two together and comes up with a unifying theory of ME/CFS in the most viewed post (>15,000 page views) on Health Rising last year – A Mystery No Longer? The Big Picture Emerging In Chronic Fatigue Syndrome – Dr. Bateman Talks

Most Surprising Website Results

Gender-2014--Health-RisingThe Other Gender…Bias – Despite the report predominance of women to men in about 20% more men than women use Health Rising

AgeAge Differential – despite the fact that ME/CFS and FM most often occur in middle-aged people most of Health Rising’s users are under 34.

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