Posted by Cort Johnson Discuss this article on the forums Written by Kelvin Lord Treatment #1 The adventure begins. I arrived at the Doctor’s office a few minutes late because of bad planning on my part, so I was a little stressed to begin with. It took them about a minute to get me set up in a nice reclining
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Dr Judy Mikovits On XMRV and CFS from Prohealth; Part I
Written by thefreeprisoner Thanks to ‘thefreeprisoner‘ from the Phoenix Rising Forums for transcribing the first part of Dr. Mikovits talk on Prohealth on Jan 22nd. Annette Whittemore: Dr. Mikovits Prohealth/HHV-6 Fdtn XMRV Lecture Part I Part II Part III Part IV …happy to see that the ProHealth organisation was able to get this online so a lot of patients who
ContinueA Visit to Dr. Peterson: Part IV: Spinal Tap, Costs and On the Road Again by Corinne
Discuss this article on the forums Day 7 (Mon) – The Dreaded Lumbar Puncture My L.P. is scheduled first thing in the morning. I am prepped by Dr. P.’s wonderful nurse of 17 years. Her voice, her actions, everything about her is calming. The test is done in a regular exam room, nothing exceptional is done and street clothes remain
ContinueA Visit to Dr. Peterson: Part I
Discuss this article on the forums Let me begin by listing my reasons for writing this. To share my experiences with everyone who’s interested but may never intend to see Dr. Peterson.To give some insight to anyone who might be considering making an appointment but may have concerns regarding what it may entailTo help someone prepare for a scheduled appointment
Continue2009 : Looking Back
Posted by Cort Johnson Discuss this article on the forums EVENTS Biggest Event – what else? XMRV takes the spotlight as no research finding has before, retrovirologists across the world clamor for samples, worry mounts about a tainted blood supply, Hilary Johnson blows into the New York Times Op Ed section, and patients gasp and cross their fingers in hopes
ContinueMy Cooperative Diagnostics Test
Posted by Cort Johnson Discuss this article on the forums I received my test result back from Cooperative Diagnostics. I was, like everyone else who has taken the poll thus far, tested negative. I was able to get the test done because I was part of an XMRV study CD is doing. Given the results of the Imperial College tests
ContinueRecovery, Relapse And Recovery (The Recovery/Recovering Stories #III)
Posted by Cort Johnson The Recovery/Recovering Stories – stories from ME/CFS patients who have experienced significant recoveries. The diversity of recovery stories indicates that ME/CFS is indeed a very heterogeneous disorder; any story may or may not apply to a given individual. Martha Kilcoyne detailed how she fully recovered from a severe case of chronic fatigue syndrome in ‘Defeat Chronic
ContinueA Personal Lesson in Humility
A Guest Blog By Laurel (Laurel, a young woman with magna cum laude from Tuft’s University, has a severe case of ME/CFS. In this poignant blog she talks about some of hard lessons she learned (which everyone with this disorder should contemplate) and provides a personal look from the world of the severely afflicted. The CFIDS Association of America recently
ContinueThe Roar Mounts: Professionals Call For New Leadership at CDC
Posted by Cort Johnson They came one after another. First came the call from IACFS/ME President Fred Friedberg. Their first recommendation – Dr. Reeves should go. Then came the CFSAC , after virtually no discussion ( a real rarity in this group) – new leadership is needed at the CDC. My mouth gaped open. I heard Robert Millers wife Courtney softly
Continue“They Should Know!” – the ME-CFS Community Story Contest
Posted by Cort Johnson ME-CFS Community – my favorite new website – is sponsoring a contest that, I think, can make a difference. We patients don’t have much influence on the research or even (unfortunately) on governmental policies. We’re not simply strong enough as a community to strongly effect either of those things. But we’re very strong as individuals because
ContinueOn the Clock Pt II: The Winners and Losers in the NIH Money Game
Posted by Cort Johnson Dr. Hanna at the NIH has repeatedly said that given the tight budgetary times there’s just no money for ME/CFS. A look at NIH funding across the past few years suggests, however, there’s more to the issue than she suggests. Underneath the seemingly placid surface of a stable budget a fierce fight goes on every year
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