The Immune System! The ever-present, ever complex immune system – a place of so many hopes in CFS and such a tough nut to crack. In his opening address for the Infectious Pathogens section Dr. Montoya pointed out how inconsistent study results have made it difficult to get a handle on what’s going on. The natural killer cell dysfunction findings are solid and there’s a good deal of evidence for an inhibited Th1 and a dominant Th2 response but inconsistent results across major parts of the immune system (T-cells, tumor necrosis factor (TNF-a), IgG levels, IFN-y) have made it difficult to understand the role the immune system plays.… Read More
Just fours days after the editors of Science took it upon themselves to retract the 2008 Science paper, Lo/Alter, the authors of the FDA study at one time championed as proof that a family of XMRV-like viruses was present in ME/CFS, have retracted their PNAS findings as well.
In their conclusion to be published next week they stated
Although a more definitive, National Institute of Allergy and Infectious Diseases (NIAID)–sponsored, coded panel of samples from 150 well-characterized and geographically diverse CFS patients and controls is being assembled for further study, in consideration of the aggregate data from our own laboratory and that of others, it is our current view that the association of murine gamma retroviruses with CFS has not withstood the test of time or of independent verification and that this association is now tenuous.
Ottawa Conference Reports III: The Most Expensive Disorder: Clauw on the Fibromyalgia and CFS-ness of Chronic Illness
Clauw is a fascinating figure. Clauw comes from the fibromyalgia side but if you don’t have FM don’t think there’s not something here for you as well. Clauw believes a very large group of people with chronic illnesses suffer from an undiagnosed and untreated FM/CFS-like illness and he’s not alone. The creation of a high-level working group at the NIH composed of FM, IBS, interstitial cytisus, CFS and other researchers indicates considerable cross-fertilization is occurring between these formerly separate disciplines and this is good news. … Read More
(Evidence for a heritable predisposition to Chronic Fatigue Syndrome. Albright F, Light K, Light A, Bateman L, Cannon-Albright LA. BMC Neurol. 2011 May 27;11:62. Pharmacotherapy Outcomes Research Center, Department of Pharmacotherapy, College of Pharmacy, University of Utah, USA. firstname.lastname@example.org)
The ‘wastebasket diagnosis’ hypothesis has bedeviled the chronic fatigue syndrome field for years. That hypothesis subscribes to the idea that ME/CFS is simply a dumping ground for physicians who don’t know what else to do with their ‘problem’ patients. To some degree that’s true – it’s clear that inexperienced and knowledgeable physicians do tend to dump patients into the CFS category.… Read More
(My apologies! (Another CFS moment…) The last blog contained a draft on the first story – not the completed version. Thanks for your patience….)
When it rains it pours. Events regarding XMRV, Dr. Mikovits and the WPI have come hot and heavy during the last week.
WPI’s Civil Lawsuit Against Dr. Mikovits – First some background. Dr. Mikovits was terminated from the WPI in late Sept for refusing to share a cell line with Dr. Lombardi. According to spokesperson from the WPI’s legal team Dr. Mikovits was terminated not because she refused to share her cell line with Dr.… Read More
Chapter 4 of How to Be Sick – The Universal Law of Impermanence
There’s just no getting around universal laws. They’re like gravity – you cannot like gravity, you can protest against gravity, you can pretend gravity doesn’t exist but as soon as you roll out of bed there it is – gravity.
The Buddhist law of impermanence – that nothing is permanent – that everything changes – is like that. Is suggests that you can’t count on anything…and you really shouldn’t try because at some point it’s all going to disappear anyway. Your health, for instance, is going to disappear completely at some point.… Read More
I can promise we will be providing cutting edge research and care, and educating providers like never before.
Dr. Nancy Klimas
Dr. Klimas recently left the University of Miami to head up a new Institute dedicated to researching chronic fatigue syndrome (ME/CFS) and Gulf War Illness at Nova Southeastern University. Dr. Klimas worked at the Univ. of Miami for 27 years; they gave her a space and a platform for her ME/CFS research, and for that we must be grateful, but they were never an eager partner. Nova Southeastern University (NSU), however, sounds like it’s eager to make a difference in this field.… Read More
Only two days to go in the ‘Mom’s on a Mission’ Contest to win 5K for NIDA to provide research funds for ME/CFS. The newest ME/CFS Foundation in the block, NIDA, is raising funds for one of the newest (one of the busiest) CFS research efforts; Dr. Peterson’s Simmaron Foundation. The Simmaron Foundation is engaged in a number of research efforts to understand the neuro-immune dysfunctions driving ME/CFS.
Check out the NIDA Alliance here. Formed just this year by the Tannenbaum’s, a California couple whose 16 year old daughter fell ill in 2005, NIDA is focused entirely on raising money for Simmaron.… Read More
Our apologies for hitting you with two Support Phoenix Rising letters in one day but we discovered that a crucial link -the one time donation link – in the first letter did not work. This time it does. Thanks for your patience and understanding.
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ME/CFS can be isolating but people with ME/CFS do not have to be isolated and Phoenix Rising is a big reason why. If John in Los Angeles wants to get the latest info on GcMAf; if Pat in Miami needs to get the latest research news, if Mary in the UK just wants to chat – they know where to go.
Every day about 300 users post several hundred posts to the Phoenix Rising Forum. With over 200,000 posts on any topic under the sun, the Phoenix Rising Forums covers ME/CFS. With new articles on research, treatment and advocacy published every week, Phoenix Rising is the place to go for accurate, objective information on our disorder.… Read More
This site provides information on Suicide Prevention Centers around the world. Its an amazing resource…..
Last week a notice from the University of Miami stating that after 27 years Dr. Klimas’s doors at the University would close sent something of a shock wave through the ME/CFS community. The idea that a significant CFS researcher, physician and advocate had perhaps lost her academic base was more than disturbing – but that announcement turned out to be nothing but a prelude to the really big news; it turned out that University of Miami didn’t let her go at all – Dr. Klimas left them for greener, much greener pastures.
Corinne’s fifth blog of her visits to Dr. Peterson is her most comprehensive yet. First, an improving Corinne gives a summary of her work to date with Dr. P, then we get a blow by blow of her visit, and lastly the ‘Queen of Questions’ hits up Dr. Peterson with her long list of questions, and as always, he responds.
Let me begin with a summary of my first four visits with Dr. P.
June 2009: I traveled by RV (my husband drove) because I was partially bedridden and wanted to “stop and smell the roses” along the way. This visit was stretched out over ten days and quite intensive, involving numerous tests including a lumbar puncture, MRI, Spect Scan, exercise stress test, 24-hour HR/BP monitor and multiple lab work.… Read More