2011 Research and News

XMRV updates and information can be found here as well as below

"The November Factor": Dr. Bell on ME/CFS & the Flu that Isn't Flu - ProHealth.com by Dr. David S Bell, MD

Avoiding the Disability Claim' Brush-Off' - What You Need to Know - ProHealth

Dr. Charles Lapp's Recommendations on Supplements for ME/CFS and Fibromyalgia - ProHealth

To the heroes - Chronic Fatigue Syndrome: A Salute To 10 Kinds of Heroes - EmpowHer.com 

6 Tips for College Students with CFS - Careers and classes.com

Fibromyalgia: Diagnosing Fibromyalgia: Common Misdiagnoses - WebMD

CFS in teens not common but very serious & under-diagnosed by GPs - ProHealth

Facing Surgery With Fibromyalgia & Chronic Fatigue Syndrome - Adrienne Dellwo - About.com

Assessment of a 44 gene classifier for the evaluation of chronic fatigue syndrome from peripheral blood mononuclear cell gene expression - ProHealth

New Genetics Discoveries in Fibromyalgia - Adrienne Dellwo - About.com

Video - The White House Chronicles - CFS - an orphan epidemicGuests: Amy Marcus, The WSJ; Frances Stead Sellers, The W. Post; Deborah Waroff; and Dr. Leonard Jason

CFS Proves Chronically Mysterious -  My Health News Daily

Video - What is it like having ME/CFS? - GetWellFromME
 

March 2011

Proteins found in spinal fluid may lead to biomarker - stories below:
 

A Step Closer to Tests for Chronic Fatigue Syndrome and Lyme Disease - Amy Dockster Marcus

New Center of Excellence:

Stanford University and Dr. Montoya has launched CFS center of excellence initiative - website
 

Wall Street Journal Articles:

Unlocking Chronic Fatigue Syndrome - Amy Dockster Marcus - This article was featured in the print edition WSJ Personal Journal section

The Puzzle of Chronic Fatigue - Amy Dockster Marcus

Rural NY Town Becomes Chronic Fatigue Laboratory - Jason Bellini - Must see video complimenting "The puzzle" article above

Amid War on a Mystery Disease, Patients Clash With Scientists - Amy Dockster Marcus  - This article was featured on the front page of the WSJ.  

Chronic Fatigue Syndrome in the Spotlight - Katherine Hobson

An Illness That's Hard To Live With-Or Define - Dr. Lenny Jason

XMRV and the Blood Supply: More Study Needed - Amy Dockster Marcus

XMRV: Study Shows Virus Can Cause 'Persistent Infection' in Monkeys - Amy Dockster Marcus

New York Times Article:  

Defining an Illness Is Fodder for Debate - David Tuller - featured in the NY Times printed edition health section  

Other:

National Fibromyalgia & Chronic Pain Association (NFMCPA) launches 

Dr. Lapp on XMRV & Ampligen - Information that may "change the field of medicine forever"

Living well: Help for fibromyalgia - FOX 25 Morning News video

A brain MRI study of chronic fatigue syndrome: Evidence of brainstem dysfunction and altered homeostasis - ProHealth

OFFER launches Youtube channel for educational videos - It will feature their monthly CFS & FM educational meeting videos
 

January 2011

RMCFA and the ME/CFS World Patient Alliance join forces

Chronic Fatigue Syndrome Patients Run First-ever Ad in The Washington Post

RMCFA has joined the ME/CFS World Patient Alliance, Pandora, Vermont CFIDS Association, Rescind and the Wisconsin ME/CFS Association in an awareness campaign. The 1/2 page ad ran in the Washington Post Monday December 6th. You can see the ad here.. Read more about the campaign here.

The ad is out! Read the PRnewswire press release 

RMCFA Press release

Campaign message delivered to NY Times square - "ME/CFS patients are invisible no more"

• 2011: A Look at the Year Ahead For ME/CFS - Cort Johnson
• Exhausted by Illness, and Doubts - D. Tiller - The NY Times
• Myofascial Release for Fibromyalgia Pain & Other Symptoms Adrienne Dellwo - about.com
• Physician Attitudes about Fibromyalgia - Fibro Network
• CAA recap of four papers released on XMRV published in Retrovirology
• XMRV: Raising the Issue of Contamination - Amy Dockser Marcus - WSJ
• Laura Hillenbrand - Interview - Sports Illistrated
• FDA panel: Patients with CFS barred from donating blood Amy Dockser Marcus - WSJ
• XMRV: Testing the Blood Supply - Amy Dockser Marcus

Videos and webinars:

• Update of Blood XMRV Working Group Activities - FDA Blood working group on XMRV Phase 2
• Donnica Moore talks blood donation, CFS & XMRV on Good Morning America
• Annette Whittemore and Judy Mikovits Of WPI - Nevada Newsmakers 12/22/2010 - YouTube
• CFS and the CDC on Primetime Live (1996) - Remembering Skye Dailor, the outbreaks,  and how little has changed at the CDC.

FDA advisory committee recommending that people with ME/CFS be barred from donating blood
 

The American Red Cross has made a policy change for CFS Donors

To protect the blood supply ARC will defer CFS patients and distribute handout (left)

Read the statement here

Click to see full size poster

December 2010

• Invisible' Patient Activists Whipping Up Media Attention - Prohealth
• American Red Cross has banned CFS patients from donating blood - Wash Post article here.
  AMR statement here - AMR Handout here
• Elevated Protein in FM shows it's not depression -  Fibro Network
• Elevated Inflammatory H Pylori  Found in FM Patients- Prohealth
• Of Mice and Men: The X-MLV's and XMRV - Cort Johnson
• Validation in a Virus? - Newsweek
• FDA Blood Products Advisory Committee Meeting - December 14th - Nine presentations on XMRV & related MLV's
• Thyroid autoimmunity predisposition for the development of FM? ProH
• Chronic Fatigue Syndrome Patients Grow Weary of Doubt - ABC
• What About Me Documentary trailers
• Seeking New Blood-Supply Test - WSJ

Webinars:

• CAA's-Managing Orthostatic Intolerance - Speaker: Peter Rowe, M.D.
• CAA's Treating CFS & FM: The Stepwise Approach - Speaker: Charles W. Lapp, M.D.
• CAA's Minimizing Relapses: Pacing Yourself Through the Holidays - Speakers: Dr. Bruce Campbell and Dr. Dane B. Cook

November 2010

• The AmericanCollegeof Rheumatology Preliminary Diagnostic Criteria for Fibromyalgia
• TheStars Begin to Align at the NIH: A CFS Review Panel.... For CFS
• Gearing Up for the Big Search for XMRV - WSJ
• NIH Invests $3.4M in MichiganTeam's Fibromyalgia Research - Prohealth
• AHA:Orthostatic Hypotension Requires Attention
• Seabiscuit' author Hillenbrand back with true tale 'Unbroken' USA Today

Archive News

2008 News

August

             (Thanks to Cort Johnson for providing this content and these links.) 

• Dr. Ken Friedman on the Federal Response to ME/CFS - click here
• Dr. Ken Friedman on the ME/CFS Research: Roadblocks and Opportunities - click here
• Mad About FM/CFS: RESCIND Founder and Awareness Day Founder Tom Hennessey - click here
• The Immune System, Treatment and Hope for the Future: Focus on Dr. Nancy Klimas - click here
• The Symposium on Viruses in Chronic Fatigue Syndrome (ME/CFS) - a two part overview - click here
• A Patient Returns: An Interview with author Martha Kilcoyne - click here

 May/June

      View/Listen - TV and Radio CFS Public Service Announcements (PSA's)

• Science of CFS: Past, Present and Future- webinar w/S. Vernon - click here
• Muscle Pain in Chronic Fatigue Syndrome (ME/CFS) - click here
• FDA Approves Cymbalta (Duloxetine) for Fibromyalgia - click here
• Research Roundup - 3 fascinating studies - click here
• CFS being caused by a rare brain infection? - click here
• Study measured metabolic dysfunction of hippocampus in FM - click here
• Alternative (to) Exercise - click here
• CFS/Looking for a Breakthrough - CFIDS chronicle/winter 2008 - click here
• Wichita Study of Cortisol and Interleukin 6 - click here
• Conference to Examine Viral Infections in CFS - click here
• Special Series: The Biology of Sleep - click here
• Newly-recognized syndrome may exist in ME/CFS subset - click here
• Low magnesium & zinc associated w/FM pain, fatigue levels - click here
• A profile/survey of ME/CFS Patients - click here
• Study suggests ME/CFS subsets with different sleep patterns - click here

February

• Q&A Session with Nancy G. Klimas, MD  - click here
• Q&A Session with Charles Lapp, ME - Authority on ME/CFS/FM - click here
• Name Change Website Launched - click here
• Educational DVD on Fibromyalgia - Watch It Online- click here
• Cortisol Concentrations in a CFS Population - click here 

2007 News

November 2007

• Dr. Suzanne Vernon named scientific director at the CFIDS Association of America - click here
• CFS name change moves ahead - click here
• CFS Heart Rate Dysfunction Persists in Sleep - click here
• FDA Approval for Ampligen Sought - click here
• Can Staph vaccine treatment improve CFS & FM symptoms?- click here
• Antidepressant trials review suggests duloxetine safe & effective for FM - click here
• Update on Antiviral Medication and Comprehensive CFIDS Management  - click here
• Charles W. Lapp, MD - CFS Pioneer, Researcher, and Clinician - click here
• Bright Light Treatment of Winter Depression - click here
• Fibromyalgia: Looking Back Over the Last Ten Years - click here
• The World FM Community - click here
• Treatment blocks pain without disrupting other functions - click here

October 2007

• • New Study Links CFS to Enterovirus Infection - click here
  •  Dr. Clauw's Golden Rules for CFS and Fibromyalgia Patients - click here
  • Q&A Session with ME/CFS and Fibromyalgia Dr. Lucinda Bateman, MD - click here
  • NIH Announces RFA for Chronic Pain Syndromes, Including CFS - click here
  • Controlling Pain - Benjamin Natelson, MD - click here
  • CFS Researcher Gets Grant from NIH to Study Retrovirus - click here
  • Dr. David Bell publishes new book - Cellular Hypoxia & Neuro-Immune Fatigue - click here
  • CFS HHV-6-Possible Cure? Physicians Encouraged by Valcyte - click here
  • CFS photo exhibit will be in Denver - October 11- 14 at Park Meadows Mall
  • Dr. David Bell's -Cellular Hypoxia in Neuro-Immune Fatigue - click here
  • Live Q&A session with Dr. Bateman - Friday. September 7th - click here
  • CFS and the Exercise Conundrum- Dr. Bateman - click here
  • Two New Studies Invite Fibromyalgia Patients' Participation - click here
  • Chronic Fatigue Syndrome' Name Challenged- - click here
  • FMS New Paradigm: Neural Sensitization and Its Implications for Treatment - click here
  • Management of patients with Fibromyalgia using biofeedback: A randomized control trial - click here
  • CDC scientists publish CFS Georgia population study - click here
  • FDA approves Lyrica (pregabalin) for Fibromyalgia - click here
  • The New York Times "Chronic Fatigue No Longer 'Yuppie Flu' "-click here
  • Two reports: "Genes Linked to Postinfective CFS" & "The infection Connection"- click here - click here
  • Causes of death among patients with CFS - click here
  •  Blood supply dysregulation cause of Fibromyalgia pain? - click here
  • Dr. Pall - New Explanation for CFS and Fibromyalgia - click here
  • Hypoglycemia a problem for CFS and Fibromyalgia patients - click here
  •  
  • "The Changing Science of Pain" (Newsweek article) - click here
  • Pediatric CFS Case Definition Published- click here
  • CFS Advisory Committee Meeting Report - click here
  • DePaul study - Functioning with multiple diagnosis" click here
  • Psychological distress and recurrence of upper respiratory tract infections in CFS" click here
  • Fibromyalgia Myth Busting " click here
  • Cal State Fulerton opens Fibromyalgia Research and Education Center
  • 2007 IACFS conference overview - click here
  • Cognitive Behavioral Therapy - click here
  • Chronic Fatigue Syndrome in Young People: Myths & Special Considerations - click here
  • Neuroimaging Tracks Mental Fatigue in CFS " click here
  • American College of Physicians article - "Putting chronic fatigue syndrome's myths to bed" click here
  • Research!America distributes flier about CFS to Capitol Hill, health agency leaders, public health officials, research academics, governors, state legislators and media professionals. " click here
  • Cellular and Genetic Studies Under Way" click here
  • Recent Drug Trials Offer Hope- click here Whittemore Peterson Institute for Neuroimmune Research website - click here  Dr. Bell - Lydonville News - November 2006 e-news Dr Cheney lecture - CFS and heart dysfunction - download
  • Dale Guyer, MD, Discusses the Integrative and Molecular Treatment of Chronic Fatigue Syndrome and Fibromyalgia -
    click here
  • Jury Awards FM/CFS Patient $15.4 Million in Disability Suit - - click here
  • Sleep Dysfunction in CFS - click here
  • Preliminary Awareness Campaign Statistics - click here
  • Kent Holtorf, MD, on Treating Chronic Fatigue Syndrome & Fibromyalgia - An Update - click here
  •  
  • View IACFS Conference Summary By Anthony Komaroff, M.D. Professor of Medicine, Harvard Medical School - - click here
  • IACFS lecture "Making the Most of Your Doctors' Appointments" by Lucinda Batemen - click here
  • Laymen's Guide/Recap to the 8th IACFS Professional Conference - Four part series by Cort Johnson - click here
    Pregabalin (Lyrica) Offers Pain Relief Option For Fibromyalgia in Long Term Study- click here
  • CFS name change - What Is An Encephalopathy? - click here
  • Exercise Testing Uncovers Abnormalities in CFS -click here
  • The Disability Paradox, and How a Fibromyalgia Specialist Can Help Patients Preserve Gainful Employment - Dr. Mark J. Pellegrino, MD - click here
  • Sleep Is Vital For Good Health - In CFS and FM by Dr. Sarah Myhill, MD - click here
  • Whole-Genome ME/CFS Study Resumes: Recruits Subjects - click here
  • Politics and CFS Research- click here
  • Valganciclovir (Valcyte) shows promise in some CFS patients
  • National Fibromyalgia Association publishes brain study of Fibromyalgia patients
  • Overwhelming Evidence Legitimizes Fibromyalgia Pain
  • Journal of the American Medical Association (JAMA) recognizes CFS - click here
  • American Medical Association (AMA) validates CFS to Physicians - click here
  • NIH Announces 7 Grants for CFS Research Valganciclovir (Valcyte) shows promise in some CFS patients
  • National Fibromyalgia Association publishes brain study of Fibromyalgia patients
  • Overwhelming Evidence Legitimizes Fibromyalgia Pain
  • Journal of the American Medical Association (JAMA) recognizes CFS - click here
  • American Medical Association (AMA) validates CFS to Physicians
Studies Explore Childhood Fatigue and CFS- -

2006 News

• NIH Announces 7 Grants for CFS Research
• CFS Advisory Committee meeting report - click here
• CDC CFS press Conference - click here
• View 6 minute video file from the press conference - click here
• NBC affiliate in Rochester NY - Excellent 6 minute video report featuring Dr. Bell - click here
• NBC Nightly News story about the campaign - CFS! -  click to view story and replay video
• CBS News report - click here
• Additional media coverage - click here
•  
• Dr. Cheney - CFS & Cardiac Issues
• Patent Application for CFS Diagnostic Test
• Dr. Bell - Lydonville News - September 2006 e-news
• OFFER 2007 Patient/Provider conference May 4th and 5th
• 2006 Houston Fibromyalgia Patient Conference
• CFIDS in the news  - Oprah and other CFIDS coverage
• Photo Exhit "The Faces of CFS"
• Dr. Reeves, Dr. Kind and Laura Hillenbrand on Minnesota Public Radio
• CAMDA Challenge (Duke University) Witchita survey analysis analysis
• CAMDA Challange papers
• Report on the July 17, 2006 Meeting of the DHHS CFS Advisory Committee 
• 8th International IACFS Conference on CFS and Fibromyalgia January 12-14 2007
• CDC's new CFIDS website
• CFIDS Association of America new "Sparks!" awareness campaign website
• CDC announcement "Computational Challenge" Witchita gene study/webcast
• CFIDS Association "Computational Challenge" Witchita gene study announcement
• CFIDS Association of America's 65 page special edition Chronicle "The Science and Research of CFIDS"
• CDC and The CFIDS Association of America launch $4 million national awareness campaign

• CFS Gene Study Targets Serotonin Function - click here
• FDA approvals of FM drugs increasing awareness - click here
• Updated estimate of U.S. FM prevalence released - click here
•  DHHS CFS Advisory Committee report- click here
• The Gene Teams - CFS Computational Challenge - click here
• CFIDS Assoc names Suzanne Vernon SD - click here
• CFS Heart Rate Dysfunction Persists in Sleep - click here
• CFS News from Capitol Hill - click here
• Q&A Session with R. Paul St. Amand, MD - click here
• Mayo first test diagnosing Chronic Myofascial Pain - click here
• Significant improvement with growth hormone in FM - click here
• UK genomic profilers identify 7 ME/CFS subsets - click here
• Brain scans sensory grey matter increase in FM patients - click here
• Forest Labs/Cypress Submitt NDA For Milnacipran For Treatment Of FM - click here

• RMCFA featured in Prohealth article - click here

• Taking Stock: ME/CFS Advocacy Making Headway - click here

• Fibromyalgia: A Disorder of the Brain? - click here

• More evidence that FM turns up sensory signal 'volume' - click here

• Science and Legal News on Postexertional Malaise - click here

• Study Shows Low Cortisol in Women with CFS - click here

• Could B-12 Deficiency Be Causing Symptoms? - click here

• Multiple Chemical Sensitivity (MCS) - What Is It? - click here

• Missouri Bill Targets Help for Fibromyalgia Patients - click here

• May 12, 2008 - FM awareness day - click here

• Hypothyroidism Testing Controversy & Therapies - click here

• IBS Linked to Abnormal Brain Activity - click here

• Chronic Pain Harms the Brain - click here

• ME/CFS as a Mitochondrial Disease -Dr. David S. Bell, MD, FAAP - click here 
  &  NEW April 2008 Lyndonville newsletter - click here
• Pain level in Fibromyalgia linked to neurotransmitter glutamate - click hereMuscle Cell Fatigue w/Exercise Similar to Heart Failure Fatigue - click here

• FM patients get less stage 2 sleep - and duration correlates with pain - click here

• Etiology, Exercise and CFS By Suzanne Vernon, Phd - click here

• The Research/Advocacy Connection - click here

•  

• Early-life health problems unique to those developing ME/CFS? - click here

• Cardiac tests differ in CFS & Fibromyalgia - click here

• Dopamine Theory' doctor finds another piece of the FM puzzle - click here

• More evidence of abnormal cortisol rhythms in ME/CFS - click here

• Impact of ME/CFS on U.S. economy tops $18 billion a year - click here

• Stress strong predictor of ME/CFS after parvovirus infection - click here

• Your Immune System & How it Works/ William Collinge, PhD - click here

• CFS Advisory Committee to Meet May 5-6 - click here

• Recently Published CFS Studies - click here

• Q&A with Scientific Director Suzanne Vernon -  CFIDS Association - click here