The Biggest Research Funder in the World on ME/CFS: The NIH on ME/CFS in 2012 Pt. I:

by Cort on January 26, 2012

The NIH on ME/CFS Part I

We just did an overview of what a governmental British medical agency is funding on ME/CFS.  Now we turn to the biggest medical research funder in the world – the NIH. While NIH’s contribution to CFS research is paltry ($6 million/year) given their resources ($30 billion plus/yearly), their penchant for funding large, complex and expensive studies means they’re a very important player in ME/CFS research.  Even with their weak focus on ME/CFS they are still the biggest single ME/CFS research funder in the world; in other words what they think and do with ME/CFS matters -  a lot.

The Trans-NIH Working Group (ME/CFS Working Group) – The ME/CFS Working Group, the group responsible for guiding and funding CFS research at the NIH, has just released their first Program Announcement in three years. Program Announcements are important because they give us a snapshot of (a) what the NIH believes ME/CFS is and, more importantly, (b) what NIH states they will fund.

Now is a good time to look at what the NIH thinks ME/CFS is, what they say they are willing to fund, and what changes have occurred over the past four years.

This is a preview of The Biggest Research Funder in the World on ME/CFS: The NIH on ME/CFS in 2012 Pt. I:. Read the full post (2278 words, 3 images, estimated 9:07 mins reading time)
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UK Govt Turns New Leaf (Why the UK Loves ME/CFS More (!))

by Cort on January 6, 2012

The Medical Research Council is a government agency responsible for coordinating and funding medical research in the UK. No slouch in the medical world, MRC funded research has lead to numerous breakthroughs including, way back in 1918, the discovery that influenza is caused by a virus, the discovery of the structure of DNA in the 1953 and most recently the 2009 Nobel prize for work on ribosomes.

The MRC’s record on innovative research pretty much stopped at CFS, however. Bogged down in a purely behaviorist stance towards the disorder, recent MRC funded studies have focused almost entirely on CBT with precious few funds devoted to pathophysiology. Check out the recent MRC studies below.

  • Randomised controlled trial of nurse led self-help treatment for primary care patients with chronic fatigue syndrome (1,340,000 US Dollars)
  • The PACE Trial – The PACE trial; A RCT of CBT, graded exercise, adaptive pacing and usual medical care for the chronic fatigue syndrome ($4,336,000 US Dollars)
  • Chronic Fatigue & Ethnicity ($253,000 US Dollars)
  • Training speech therapists in Cognitive Behavioural Therapy to treat Medically Unexplained Dysphonia: A Trial Platform ($404,000 US Dollars)
  • United Kingdom Primary Sjogren’s Syndrome Registry (UKPSSR) ($ 864,000 US Dollars)
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Ottawa IACFS/ME CFS Conference IV: The Immune System!

by Cort on December 28, 2011

This entry is part 4 of 4 in the series IACFS/ME Ottawa 2011 Conference Reports

Montoya Calls for New Research Focus

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.

(A recent review of the topic stated :  Despite many years of intense investigation there is little consensus on the presence, nature and degree of immune dysfunction in this condition. However, slightly increased parameters of inflammation and pro-inflammatory cytokines such as interleukin (IL) 1, IL6 and tumour necrosis factor (TNF) α are likely present. Additionally, impaired natural killer cell function appears evident. Bansal et. al. 2011 Chronic fatigue syndrome, the immune system and viral infection)

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Lo/Alter Retract pMLV Finding in CFS

by Cort on December 27, 2011

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. Therefore, we retract the conclusions in our article.”

The Alter/Lo retraction deepens one conundrum as they reported that extensive tests for contamination tests still failed to find any. Their retraction rested on

  • Their inability  to find the MLV’s in the same patients they found them in before (as well as other CFS patients) in the Blood Working Group study
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Ottawa III: The Most Expensive Disorder Facing the Medical Profession – Clauw on FM and CFS

by Cort on December 27, 2011

This entry is part 3 of 4 in the series IACFS/ME Ottawa 2011 Conference Reports

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. While Clauw is coming from the pain side you may be surprised at the connections you find.

Barking Up the Wrong Tree – He started off stating that, with their unremitting focus on finding and repairing injury, the medical community has missed the boat on pain. In effect he accused them of sticking their collective heads in the sand – for decades.

The fact is there’s not a single pain condition in which pain levels correlate well with x-ray or MRI, etc. scan results; some people with major structural problems feel little pain while others with sometimes undetectable injuries are in severe pain.

This is a preview of Ottawa III: The Most Expensive Disorder Facing the Medical Profession – Clauw on FM and CFS. Read the full post (4658 words, 11 images, estimated 18:38 mins reading time)
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“All in the Family”: A Real Disorder After All – the Albright CFS Heredity Study

December 26, 2011

(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. frederick.albright@pharm.utah.edu)

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.

But does that mean that ME/CFS specialists are doing the same? That they’re not plucking out a group of people with a distinct disorder? Does this mean that hidden within the masses of misdiagnosed ‘CFS’ patients a real ‘CFS’ or ‘ME/CFS’ disorder isn’t present? Not necessarily, and this paper, like a breath of fresh air, threatens to explode the ‘wastebasket diagnosis’ myth. It indicates that when good ME/CFS practitioners are at work they’re picking out  something real; something that has a strong genetic background.

This is a preview of “All in the Family”: A Real Disorder After All – the Albright CFS Heredity Study. Read the full post (1602 words, 6 images, estimated 6:24 mins reading time)
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err..Correction! WPI Wins Lawsuit/Science Retracts XMRV Paper/Mikovits Back to Work on XMRV

December 23, 2011

(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. Lombardi, as has been reported,  but because she took a cell line that had been addressed and sent to Dr. Lombardi from Dr. Lombardi and refused to return it.

The day after Dr. Mikovits termination research notebooks and other data dating back five years disappeared.  Dr. Mikovits stated she did not know where the notebooks and data were.

Several weeks later, however, Max Pfost, a graduate student working at the WPI, said in an affidavit, that shortly after her termination Dr. Mikovits asked him to remove the laboratory notebooks and patient samples from the WPI.  According to a member of the legal team representing the WPI, Pfost swept the cupboards bare, taking every notebook present including the work of other researchers.  A silver research laptop was also taken. Pfost stated that he later transferred the notebooks to Dr. Mikovits.

This is a preview of err..Correction! WPI Wins Lawsuit/Science Retracts XMRV Paper/Mikovits Back to Work on XMRV. Read the full post (1460 words, 3 images, estimated 5:50 mins reading time)
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It’s Just the Weather, Baby! Reading Toni Bernhardt’s ‘How to be Sick’ #3

December 21, 2011

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. That’s a guarantee! There are no other guarantees; there’s no guarantee, for instance, that while you live you’ll be healthy or without pain or live in the circumstances you wish. That guarantee, unfortunately, did not come with the package.

At the end of the chapter Toni refers to ‘broken glass’ practice which is based on the realization that we are all glasses which will eventually be broken; i.e., brokenness or ‘ill’-ness is baked into and is an inherent part of being human. It may come earlier or it may come later; it may last a long time or a short time but it’s part of the package; if you’re human you’re going to have to deal with illness, physical decay and parts that don’t work the way you expect them to.

This is a preview of It’s Just the Weather, Baby! Reading Toni Bernhardt’s ‘How to be Sick’ #3. Read the full post (1363 words, 2 images, estimated 5:27 mins reading time)
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Dr. Klimas Talks – on her new CFS Research Institute at Nova Southeastern University

December 20, 2011

 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.

Dr. Klimas was known at the federal advisory panel for CFS (CFSAC) for her ability to see large opportunities and that hasn’t changed.  She pictures the Institute as a hub of collaboration and innovation and as a partner in a national/international clinical trials network. (The idea of a formal CFS Clinical Trials Network is in the air.  When Kim McCleary (CAA) called for development of such a network at the last CFSAC meeting, she pointed out that several pieces of the infrastructure needed to build it were in fact developed during the government’s response to XMRV.)

This is a preview of Dr. Klimas Talks – on her new CFS Research Institute at Nova Southeastern University. Read the full post (2298 words, 5 images, estimated 9:12 mins reading time)
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Phoenix Rising: Its Promise and a Link That Works :)

December 14, 2011

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.

Please invest in Phoenix Rising’s commitment to rigorous reporting and innovative web solutions that better  the lives of people with ME/CFS.

You can invest in Phoenix Rising’s work in several ways

One Time Donation 

Recurring Monthly Donations

(Click on the image and look on the left hand side of the page for Recurring Donation Options)

 

Matching Corporate Donations

Many Corporations give matching donations to certified non-profits. A matching corporate donation was very helpful to us last year (and we know there are more out there ). Don’t know if your company provides this service? Just ask us! We’ll let you know.  (phoenixcfs@gmail.com)

Phoenix Rising is a certified 501 (3) c non-profit organization in the U.S. Your donations are deductible to the full extent of the law. 

 

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