February 2012

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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Posted by Cort Johnson

Virtually every ME/CFS research and non-profit is in the same fix – they’re big on ideas and short on money. The CAA, of course, has the same problem… even though, arguably, the needs in ME/CFS are larger than almost any other disorder, next to the big medical non-profits like the Susan G. Komen Foundation for breast cancer, they’re small fish, – and in the world of research foundations – they’re like little minnows.

The big list of to-do’s in ME/CFS (biomarkers, definition, funding, treatment, legitimacy) combined with the meager resources available, means the CAA (or any other CFS group) can’t get their job done by putting a dollar in and getting two dollars out.… Read More

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Posted by Cort Johnson

U.S. Senate Committee on Health, Education, Labor & Pensions
Full Committee Hearing on

Pain in America: Exploring Challenges to Relief

February 14, 2012

TESTIMONY OF JENNIFER SPOTILA

This testimony is submitted on behalf of the CFIDS Association of America, in loving memory of Christy Gaffey of Williamsburg, Iowa. Christy lost her battle with chronic fatigue syndrome (CFS) and interstitial cystitis on February 9, 2012 at the age of 52. She was an advocate for these medical conditions and, in days of better health, participated in lobby days organized by the CFIDS Association. With this testimony at today’s hearing chaired by Sen.Read More

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Posted by Cort Johnson

Spread the word!

It is time to YANK (not tug) the nation’s heartstrings again.

Young People with ME/CFS –

JOIN US in Speak Up About ME, to be

Invisible No More!

Washington DC this spring (2012)



 

How do we yank people’s heartstrings?

With the participation of young people and their families at the Chronic Fatigue Syndrome Advisory Committee meetings (CFSAC) in Washington D.C.  Historically, few young people with ME/CFS have attended the CFSAC meetings.

Speak Up About ME
changes that, as young people with ME/CFS proclaim themselves to be INVISIBLE NO MORE!
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Posted by Cort Johnson

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Background

The theme of this year is expansion, not contraction as one might expect after the biggest finding in CFS history (XMRV) didn’t pan out. With XMRV drawing more attention than ever to this disease the ME/CFS research community emerged in better shape with more new projects and more new faces than ever before.
Yes, ME/CFS is still a fringe topic receiving abysmal funding from the federal government and these efforts are small, but they often lead by prominent researchers and if they are successful they should be able to pull in much needed funds over time.… Read More

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Posted by Cort Johnson

Background 

The biggest finding in CFS history (XMRV) didn’t work out and the most revered group in CFS history, the WPI, has troubles of its own, but ME/CFS research community emerged in better shape with more new projects and more new faces  than ever before. Yes, ME/CFS is still a fringe topic receiving abysmal funding from the federal government and these efforts are small, but they often lead by prominent researchers and if they are successful they should be able to pull in much needed funds over time.

In Part II of “The Road Ahead in 2012″ we  look forward to what we can expect from most of the ME/CFS research organizations in 2012.… Read More

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Posted by Cort Johnson

The Best of Times/The Worst of Times – 2011 will no doubt go down as the craziest year in ME/ CFS history.  Nothing could replace the excitement of the XMRV discovery or erase the letdown at its downfall but as the new initiatives popped up it was as if the medical gods sought some balance for a disheartened community.  The XMRV problems overshadowed much but if we can put that aside and take a step back this has truly been a year to remember and even, if you can, to celebrate.

Private Efforts Step to the Fore– Although the federal government remained largely moored in its bury its head in the sand stance towards CFS private/academic sector initiatives focused on ME/CFS blossomed.… Read More

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Posted by Cort Johnson

(Corrine continues her blog recounting her visits to and charting her progress with, Dr. Peterson, one of our most experienced practitioners. As a bonus she includes her “Picking Dr. Peterson’s Brain” section where he answers her’s and others questions about CFS.)

Summary to Date

“Life can be likened to a grindstone. Whether it grinds you down or polishes you depends on what you are made of.” Author unknown

Let me start with a summary of my last visit, August 2011 (for a summary of previous visits, refer to the complete August blog):

I’d been doing well – feeling less sick and more functional.… Read More

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Posted by Cort Johnson

The statistics the Campaign to End Chronic Pain in Women cites are startling…$50 million women in the US suffer from six chronic pain conditions (ME/CFS, FM, Interstitial Cystitus, TMD, Endometriosus, Vulvodynia), one of which is ME/CFS, which cost the US economy 80 billion dollars a year…..yet the NIH devotes only $1.36 per woman a year to research these disorders.  (Is this the last great example of  discrimination against females in the medical community?)

Women with these disorders suffer from the same litany of problems as do people with ME/CFS…..they generally get  blank looks from physicians (and a quick call for anti-depressants), have difficulty simply getting diagnosed and once they are they are offered few treatment options.… Read More

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Posted by Cort Johnson

NIH neglect is on the verge of producing a downturn in ME/CFS research that may take years to recover from. Some background information is necessary.

The Effective Grant Program (and the Ineffective One)

The NIH produces two types of grants; Program Announcements (PA’s) and Requests for Applications (RFAs). Program Announcements ‘announce’ what kind of research the NIH is willing to fund; RFA’s announce what kinds of research the NIH is willing to fund and come with a guaranteed pool of money. (Guess which one gets better results?)

The funded grant proposals are important, even vital vehicles for drawing interest to controversial disorders like chronic fatigue syndrome which have trouble attracting researchers. … Read More

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Written by alex3619

6630-BlameGame.jpgThanks to Alex for allowing us to post a thought-provoking blog suggesting that focusing a bit less energy on righteous indignation and bit more energy on undertaking rigorous examinations of positions and studies might make ME/CFS advocacy a lot more effective.

We spend of lot of energy blaming people who do various things we don’t like. In particular, private complaints about proponents of biopsychosocial (BPS) approaches including CBT/GET are a favourite passtime – I understand why, but we make up most of the people listening.

This has some value, as it chips away at the image that these BPS claims are in any way acceptable or without controversy.… Read More

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Posted by Cort Johnson

Thanks to Alex for allowing us to post a thought-provoking blog suggesting that focusing a bit less energy on righteous indignation and bit more energy on undertaking  rigorous examinations of positions and studies might make ME/CFS advocacy a lot more effective. 

This is a detour from my three-quarter written blog on another aspect of philosophy of science – but not much of a detour. It still addresses a topic on my long term agenda.

We spend of lot of energy blaming people who do various things we don’t like. In particular, private complaints about proponents of biopsychosocial (BPS) approaches including CBT/GET are a favourite passtime – I understand why, but we make up most of the people listening.… Read More

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Posted by Cort Johnson

The funder of big, complex and expensive studies whose costs often run into the millions of dollars, the National Institutes of Health (NIH) presents a resource like no other.  It’s never been easy to secure an NIH grant; for one thing, substantial data backing up one’s hypothesis is needed – which means researchers need to access substantial sums of money before they apply for the grant.  The pre-grant stage is where non-profit organizations, which can provide seed money (about $100,000) for researchers to get the data they need to apply, shine.

Getting the preliminary data is just the beginning, though. 

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