News

Posted by Cort Johnson

ME/CFS Buzz: News of the Week – a New Feature From Phoenix Rising (weekly short takes on ME/CFS research, treatment and news)

 

RESEARCH

 

Fear and Loathing….An Exercise Study 


Kinesiophobia, catastrophizing and anticipated symptoms before stair climbing in chronic fatigue syndrome: an experimental study.Nijs J, Meeus M, Heins M, Knoop H, Moorkens G, Bleijenberg G.

Nijs has been studying exercise and pain in ME/CFS and other disorders in Belgium for years. In this study, the first with CBT specialist Bleijenberg, Nijs noted that kinesphobia (fear of movement) and catastrophizing (expecting the worst) were common in ME/CFS and tested how they effected physical performance and activity levels.… Read More

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Tales From the Edge: the Chronic Fatigue Syndrome (ME/CFS) Story Edition

The end of the year story edition of Phoenix Rising presents three remarkably different stories; a Canadian now almost completely disabled by the this disease but still participating as much as fiercely as she can, a Nevadan who’s story illustrates the physical and emotional challenges ME/CFS can pose to an entire family, and a ME/CFS patient who emerged in complete health after from many years of suffering. Plus we have a blog from me about a ‘breakthrough’ that suggests a new trigger for ME/CFS that may provide some hope for some.

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Phoenix Rising – An ME/CFS/FM Newsletter by Cort Johnson (Jan 2006)

Phoenix Rising is a monthly newsletter committed to elucidating current CFS research, describing important events, telling patient stories, suggesting alternate treatments for CFS patients, etc. Please contribute to Phoenix Rising.

CONTENTS

NEWS -A Goodbye To Jason Breckenridge/New Ampligen Trial / New U.K. CFS Website and Newsletter / AACFS Changes Name and Message From the President / Dr. Puri Talks /Dr. Natelson Talks / Diagnosing CFS/ME clarified / Patient Stories From RemedyFind / Maximize Your Contributions

MEDIA DESK - Ignoring ME in Britain – the Cost

RESEARCH - Immune Cells ‘Burned Out’ in CFS patients / No Orthostatic Intolerance in CFS?

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Phoenix Rising: Vol.1, No. 6, Feb. 2006 By Cort Johnson

(Please send submissions, comments and/or clarifications toPhoenixcfs@yahoo.com)

Phoenix Rising is a monthly newsletter committed to elucidating current CFS research, describing important events, telling patient stories, etc. Please contribute to Phoenix Rising.

NEWS

The CFIDS Association of America publishes Special Issue on the Science and Research of Chronic Fatigue Syndrome. This is the kind of thing only a national organization like the CAA can produce – it’s chock full of insights straight from many of the top CFS researchers. Its a great way to get up to date on the latest research in CFS.

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Phoenix Rising: A Chronic Fatigue Syndrome (ME/CFS) Newsletter (Dec 2008)CFIDS Association of America / CDC: Round II By Cort Johnson

Chronic Fatigue Syndrome (ME/CFS) News

Dubbo Studies in the News – On the heels of a possible breakthrough in our understanding what happens in early stages of this disease Dubbo researchers got some rare television airtime on ABC news in Australia. (A transcript is also available). An interview with Dr. Voller-Conna about this study and the Dubbo groups ideas on ME/CFS is in the works.

New Physician Training Program Enjoys Amazing Success! – Not satisfied with the CDC’s physician education program the CFIDS Association of America created one of its own and got Medscape to host it in October.

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PHOENIX RISING: A CFS/ME Newsletter By Cort Johnson (December, 2005)

(Please send submissions, comments and/or clarifications to Phoenixcfs@yahoo.com)

Phoenix Rising is a monthly newsletter committed to elucidating CFS research, describing important events, telling patient stories, suggesting alternate treatments for CFS patients, etc. Please contribute to Phoenix Rising.

CONTENTS

NEWS - Spence Lecture on CFS / ME Conference in London announced / Brain Phospholipid Conference in U.K. /Maximize Your Contribution to CFS Research / REDLABUSA opens new website / New MCS website launched / Wessely Shows up in Wikipedia and elsewhere

RESEARCH - Protein Study of Cerebral Spinal Fluid Finds Biomarker? / Novel Enterovirus Theory Explicated by Chia / Exercise Induces Immune Activation in CFS

SPECIAL REPORT: Making the Breakthrough or More or the Same?

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Phoenix Rising- A Chronic Fatigue Syndrome (ME/CFS/FM) Newsletter (Feb 2008)

The Centers For Disease Control Edition

by Cort Johnson

Chronic Fatigue Syndrome (ME/CFS) News

Dr. Holtorf on WebMD – WebMD – one of the largest medical information sources on the web – featured a story on low dose hormone (cortisol) supplementation by Dr. Holtorf, the founder of the Holtorf Medical Center. Dr. Holtorf developed the protocol the Fibro-Fatigue Centers use.

E-medicine ME/CFS section largely characterizes ME/CFS as an immune disease.

Jury Slams Insurance Company in CFS Lawsuit! – a San Diego jury slammed Prudential Insurance company for terminating a CFS/FM/Lupus patient’s disability payments.

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Phoenix Rising: A Chronic Fatigue Syndrome (ME/CFS) Newsletter (August 2008)

May Day! The Feds and ME/CFS: the Congressional Briefing, Lobby Day and the CFSAC Meeting

By Cort Johnson

Chronic Fatigue Syndrome (ME/CFS) News

Overview of MERUK’s New Horizon’s 2-day ME/CFS Conference – Meruk has posted some excellent overviews of the recent big 2-day ME/CFS conference in London

The MERUK Health Care Professional DVD Package – Have a copy of the 4 DVD set of the International MERUK Conference on ME/CFS Biomedical Research sent to your health care professional or medical library free with a cover letter from MERUK. (May only apply to UK residents?)

Dorothy Walls Reviews ‘Insomniac’- One of our foremost ME/CFS authors finds a book she really likes.

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Phoenix Rising – An ME/CFS/FM Newsletter by Cort Johnson (August 2006)

Please Subscribe to Phoenix Rising

Phoenix Rising is a monthly newsletter committed to elucidating current CFS research, describing important events, telling patient stories, suggesting alternate treatments for CFS patients, etc. Please contribute to Phoenix Rising. Please send submissions, comments and/or clarifications to Phoenixcfs@yahoo.com)

NEWS

Free Canadian CFS/FM Legal Resource – FM-CFS Canada announces the launch of a new resource for patients and lawyers. The Law Zone: will give you 1) Free legal research, 2) Expert Questions & Answer, 3) Informative Links http://fm-cfs.ca/law/Legal-Index.html

FM-CFS Canada, Canadian lawyers, and law students are reviewing FM & ME/CFS cases in Canada.

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Phoenix Rising – An ME/CFS/FM Newsletter by Cort Johnson (April 2006)

NEWS

Reports From the London CFS/ME Conference -Mary Schweitzer and Melanie Jameson have given us reports from the London Conference we’ve been looking forward to for awhile. You can access Mary’s Report at

http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0605c&L=co-cure&T=0&P=777

And Melanie’s report at http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0605c&L=co-cure&T=0&P=3291

Pat Fero Testifies to CFSAC regarding the truly pitiful level of NIH funding for CFS and the layers of obfuscation she has encountered. Why our advocacy groups haven’t taken this on with the vigor Pat has is entirely unclear to me. The NIH funding for CFS is a travesty; thanks to Pat’s work we are uncovering how just how bad things are.

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Phoenix Rising: The Cortisol Edition (Sept 2008) by Cort Johnson

News

Exciting News From The Whittemore-Peterson-Institute Check out this video from Channel 2 News in Reno. In it Dr. Judy Mikovits stated that a blood test measuring immune agents to diagnose chronic fatigue syndrome (ME/CFS) could be ready within a year. The WPI is also in the process of identifying a new virus that is present and may cause or contribute to the disease. Heady stuff!

Click on Major Medical Breakthroughs at the bottom of the page to access the interview.

Dr. Natelson Talks! – Dr. Natelson is his energetic self in this hour-long radio interview.

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Phoenix Rising Special Edition: 2005 – THE YEAR IN REVIEW by Cort Johnson

This paper looks at the general trends in CFS research over the year, highlights the ‘Paper of the Year’, and summarizes the top 10 research papers.

Evaluating CFS Research

According to PubMed (and including the Journal of Chronic Fatigue Syndrome) about 126 papers were published on CFS in 2005. This was about a 15% drop from 2004 but is about average for the past five years (Click here). A division of the papers into several general categories indicates that the immunology and psychology are still the primary research interests in CFS and there is moderate interest in the brain, endocrine system and the metabolism.

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“Listen To M.E.” : An ME/CFS Patient Recovers (May, 2009)

The next thing I expected to hear about this person was that he was dead. His case of ME/CFS had progressed far, far beyond what most people face, and quite frankly, I shuddered to think of what he was going through. I’d offered my feeble idea’s- which he gently brushed aside – and then he disappeared. That was over a year ago. About three weeks ago I got an e-mail from him. This is what he told me..

LISTEN TO M.E.

Yea I had asthma, good amount of anxiety, chest infections twice a year just in time for fall and spring.

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Proteins on the Brain: Spinal Tapping for ME/CFS (March, 2010) by Cort Johnson

In 2008 I participated in Dr. Baraniuk’s spinal tap study at Georgetown University in Washington, D.C. Some readers mayamyloids, CFS and the brain remember how exciting Dr. Baraniuk’s first proteome study was; it was the easy winner of the 2006 Phoenix Rising Paper of the Year. The study suggested that chronic fatigue syndrome (ME/CFS) patients had unusual proteins in their cerebral spinal fluid.

These results suggested that clumps of abnormally folded proteins could be causing small punctures in the blood vessels of ME/CFS patients brains. These punctures, in turn, could cause blood to leak out into the brain causing the symptoms of ME/CFS.

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News

March 6, 2011

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