November 2010

Posted by Cort Johnson

Make the Turnips Dance – Raise Money for Phoenix Rising!

via Chronic Fatigue Syndrome ME/CFS News From Phoenix Rising – Make the Turnips Dance – Raise Money for Phoenix Rising!.… Read More

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  • Dr. Cheney Reports - in his latest newsletter – or at least that part of which is available for free – Dr. Cheney reports news on the serology tests emanating from VIP Dx. Earlier Dr. Mikovits noted that antibody tests picked up more positives than PCR tests.Dr. Cheney noted that 2 out of the three people who tested negative by PCR later tested positive by antibody tests. Overall 83% of his 47 patients have tested positive. He expects the percentage to rise to 90% when all the serology results are in – putting the number right about where Annette Whittemore suggested when XMRV broke.
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4523-PastFuture..jpg(This letter was sent to me by someone who wishes to remain anonymous. He advocated for CFS 20 or so years ago and, like so many others, re-emerged with the XMRV announcement. Looking at the CFSAC meeting was like deja vu for him in too many ways. He is certainly not alone. Mindy Kitei bemoaned the lack of urgency she felt she saw at the meeting and I thought back to when the CFSAC panel refused to endorse the CFIDS Associations call for Dr. Reeves removal – until after he left the panel.Read More

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The Next Cancer for XMRV? – JMK on the MECFS Forums snuffed out Dr. Singh’s XMRV patent application and then XMRV Global Action highlighted the most relevant sections and here we are with what is easily the most exciting news for XMRV since the Science paper was published in October of last year. The patent application states Dr. Singh has found XMRV in 25% of 178 samples from patients with breast cancer – a finding that will surely send a shock through Cancer research community. Tellingly, XMRV was not found in the tissues just surrounding the cancer as originally appeared with prostate cancer – it was found smack dab in the middle of the malignant breast tissues.… Read More

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4516-LipkinNYTimes..jpg(The New York Times article on Dr. Ian Lipkin – the man chosen by the NIH to lead their hunt for XMRV in CFS – portrays a man at the top of his field.)

http://www.nytimes.com/2010/11/23/science/23prof.html?emc=tnt&tntemail0=y

Dr. W. Ian Lipkin was spending the afternoon prowling his empire of viruses. The Center for Infection and Immunity, which he directs, occupies three floors of the Mailman School of Public Health at Columbia University. Rather than wait for the elevator, Dr. Lipkin ran up and down the back stairs to move from floor to floor, leaning into the doorways of labs and glass-walled offices to get updates from a platoon of scientists.… Read More

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The XMRV Buzz -short takes on the world of XMRV – will now be appearing regularly on the “Bringing the Heat” Blog

Unbroken – the Louis Zamperini and Laura Hillenbrand Story - no it’s not about XMRV but it is about Lauren Hillenbrand and that means CFS. She is a great spokeswoman for CFS and Louis Zamperini was a great vehicle for her next book, seven years in the making and which she says both brought her life and cost her physically.

A Mouse Model for XMRV - And now to one of the more interesting twists – developing a mouse model for an er…mouse derived virus?… Read More

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(Now to the meat of it – Lannie finds out her test results and explains what they mean. Are we getting to the heart of the exertional problems in ME/CFS? At least for Lannie we appear to be. Read deeply – this is important stuff. Thanks again to Lannie for sharing this. Check our her blog here.

4495-Ann..jpgNow, what I’d been waiting for… the results! Well, the preliminary ones at least. Below provides a scan of the chart received at the end of a two-day cardiopulmonary exercise stress test at the University of the Pacific Fatigue Lab.… Read More

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4482-Friedberg..jpg(Dr. Friedberg is an intriguing figure; a psychologist questions the effectiveness of CBT and who, as President of the IACFS/ME, has taken the CDC to task for beginning CBT trials yet someone who is also believes that pacing and ‘stress management’ can pay real dividends for some people with ME/CFS.

In this long interview he talks about the differences he sees between people with ME/CFS and FM, men and women with ME/CFS, the importance, in the absence of a cure of accepting ‘half a loaf and creating joy and pleasure, how improved health does not necessarily result in increased activity, why the cognitive in CBT may be over-emphasized, what he has done as a person with CFS that has helped and more.Read More

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Written by Cort

(Marly Silverman is the co-founder of PANDORA, a Florida organization devoted to improving the lives of people with ME/CFS and other NEID’s (neuroendocrineimmune disorders). Marly granted permission to post her blog here.))

4462-Marly..jpgI haven’t been blogging lately. Because of the time, stamina and physical efforts allocated for personal medical issues, it is not a priority for me. I do admire those who can do blog and share their voice. It is a special gift that they have indeed.

As I recently laid in bed trying to recoup from a trip the CFS Advisory Committeeand to the New Jersey CFS Association Fall Conference, I wondered whether what I do really matters.

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I haven’t been blogging lately. Because of the time, stamina and physical efforts allocated for personal medical issues, it is not a priority for me. I do admire those who can do blog and share their voice. It is a special gift that they have indeed.

As I recently laid in bed trying to recoup from a trip the CFS Advisory Committee and to the New Jersey CFS Association Fall Conference, I wondered whether what I do really matters. Does it create change? Does it make a difference? Does it have an impact on quality of life of the chronic ill?… Read More

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(People with ME/CFS often return back from a doctor’s office with a handful of negative and unhelpful test results. There are a few tests, though, that often do show abnormalities for the doctors experienced enough to use them and the Steven’s protocol is one of them. Thanks to Lannie for allowing us to publish her experiences undergoing one of the most intriguing and unique tests for ME/CFS – the repeat exercise tests measuring aerobic functioning.)

Check our her blog here).

I arrived at The University of the Pacific for day one of my cardiopulmonary exercise stress test .… Read More

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Written by Cort

4451-dancing-veggies2__46.jpgThe IGIVE video contest is an easy way to get Phoenix Rising and another non-profit some much needed cash. (The other non-profit, which we will vote on, will get 25% of the winnings.)

Now that was exciting! It reminded me of the Chase Community Giving project when we pulled it out at the last minute for PANDORA last year.

We did indeed ‘rise from the ashes’ at the last minute. Two days before the contest ended IGIVE docked us about 40% of our votes – pushing us to 9th place and out of the $250 slot.
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4449-Stop..jpgI submitted an Freedom of Information Act (FOIA) request in 2007 out of frustration at the low number of CFS studies funded by the NIH. The goal was to figure out where the roadblocks in the CFS grant funding process at the NIH were.

The request was complicated a bit because it included the period when an NIH approved RFA for Neuroimmune research into CFS was in effect. In an RFA the NIH states they will provide X number of dollars to research a subject and grants entered under an RFA typically have much higher success rates than those entered under the normal ‘program announcements’, which have no guaranteed funding.
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Stars Align for ME/CFS at the NIHA Head-Splitter – Of all the problems at the NIH the makeup of the panel that reviews and scores ME/CFS grants – called the CFS SEP – may have been the most head-splittingly frustrating. No subject is guaranteed to raise blood pressure levels more quickly and perhaps, no other group has been more effective at throttling the life out of nascent CFS research efforts. For many researchers the CFS SEP was ground zero for what was wrong with the NIH.

The panel is composed of researchers who review and rate ME/CFS grant applications. A poor score means months of grant preparation is thrown out the window.

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Oct 13 Testimony to the CFSAC

Whenever the CFS community asks for funding we always hear are that ‘money is tight’ – too tight to help out with CFS – as if doing so would somehow break the budget.

Money for CFS research at the NIH?The truth is there’s always money for the NIH to do what it wants to do. Every year even in the tightest budgets many diseases get substantial increases in funding. You can go down the list…over the past three years funding for Alzheimer’s has shot up $68 million, arthritis $37 million, asthma $64 million, atherosclerosis -$62 million, COPD $26 million….and – I’ve just gotten to the C’s….… Read More

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4440-hillenbrandx..jpgBy Deirdre Donahue, USA Today (click here for the original article - hopefully USA Today will indulge our printing their review)

“My books are my way of speaking to the world.”

WASHINGTON — Writer Laura Hillenbrand doesn’t write about what she knows. She writes about what she can never have in this life.

“I write about people and animals in motion,” says Hillenbrand, seated on a chair in the house she almost never leaves. Chronic fatigue syndrome (CFS), a mysterious and debilitating malady with a trivial-sounding name, has turned the 43-year-old into an unwilling recluse, a modern-day Emily Dickinson.… Read More

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(The repeat exercise tests for ME/CFS developed by Staci Stevens are beginning to transform the research field with growing numbers of researchers understanding that the abnormalities of ME/CFS patients reveal themselves fully only when they are put under stress. Phoenix Rising has been graced by two series of articles elucidating different aspects of the all important post-exertional-malaise (PEM) experienced in ME/CFS; Jennie Spotila’s four part series and now Lannie’s personal account of her repeat exercise tests and what she learned from them.

You can find Lannie’s original blog here
as well as blogs on her treatment for Lyme disease and other topics).Read More

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Written by TheMoonIsBlue

4419-WPI..jpgHELP THE WHITTEMORE PETERSON INSTITUTE WIN $1 MILLION DOLLARS!

http://www.takepart.com/membersproject/vote

******Right next to where it says “Can’t find an organization in our list?”—There is a link that says Suggest a charity*******
Simply write “The Whittemore Peterson Institute for Neuro Immune Disease” and Select “Nevada” for the state, enter your email address, and add a few lines (or as much info as your want) about why you you are nominating them.Or visit the WPI website for more info- it’s right on their main page. I also copied this from the site:

October 11, 2010: The Whittemore Peterson Institute would like your help in nominating us for the American Express Members Project.… Read More

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CFSAC Oct 2010: Day III – The FEDS

One could argue that Day Three was the most important of the meeting. After all what people with ME/CFS vitally need are treatment and research centers doing rigorous work on the disorder and only the feds will provide that kind of money. In fact the federal government did fund 3 research centers for a time but those are long gone

After Dr. Klimas’s, Dr. Lights, Dr. Glasers and Dr. Lerners testimony it was clear there was enough expertise already sitting in that room to lead several research and treatment centers.Read More

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ME Association CFS Treatment SurveyIn 2008 the ME Association conducted what maybe the most comprehensive survey of treatment effectiveness ever done in ME/CFS. Over four months 4,217 people took part, most of them online. It was by no means complete with twenty five treatments or treatment types covered but it did provide a broad overview of treatment effectiveness in the UK. Unfortunately protocols were not a part of the survey.

Duration and Severity: Most people (44%) had had ME/CFS for over ten years and most answered the question “how does the illness affect your current state of health?” by answering moderately (57%) with 28% reporting that it effected their health ‘mildly’-28%, and 15% severely.… Read More

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