Saturday, February 5, 2011

Jones & McClure on CFS SEP

May be reposted in full, or simply refer to my latest blog:

http://slightlyalive.blogspot.com/2011/02/myra-mcclure-and-nihs-sep.html

After Congress asked NIH to do a better job of funding research on CFS, NIH created an SEP (Special Emphasis Panel) to judge the quality of applications for CFS research when they first enter the system.

The federal government, and even one national patient advocacy group, suggest the problem is that there are not enough researchers submitting proposals.  But 97% of proposals for CFS research are rejected outright.  One suspects the problem lies at NIH, not with a lack of proposals for research on The Disease.

Most of the members of the SEP have no expertise (and little interest) in CFS or M.E.  The resident "expert" on the committee has been James Jones. 

Jones, formerly of Denver, now CDC's director of education on CFS, considers CFS to be a disease caused by somatization (physical symptoms created by psychiatric problems - such as poor Charlie Brown's sore stomach every time he pitched for his baseball team).

Myra McClure of the UK, who published an article in early 2010 on her inability to find the new retrovirus XMRV in either controls or patients, has just been added to the SEP.

With these two as the panel's CFS "experts," I will be surprised if as many as the 3-4% of applications to study CFS will continue to be accepted - the percentage may drop even lower.

For a discussion of Dr. McClure's credentials as an "expert" on CFS and XMRV, go to my latest blog:

http://slightlyalive.blogspot.com/2011/02/myra-mcclure-and-nihs-sep.html

I know we have friends at NIH - but apparently we also still have enemies.

Mary M. Schweitzer

Slightly Alive: Myra McClure and NIH's SEP

 
 
"Who better than someone who couldn't find a gamma retrovirus if they slapped her face with a cat suffering from feline leukemia?"  

Friday, February 4, 2011

An Author Escapes From Chronic Fatigue Syndrome - NYTimes.com

 
Q.

Why have you started talking about your illness?

A.

I had never been public about my illness at all before "Seabiscuit." I didn't want to talk about it very much because I had the experience of being dismissed and ridiculed. People don't understand this illness, and the name is so misleading. I realized I had this opportunity because I was going to be getting press attention for the book. I'm going to talk about it because I can. Maybe that will save the next person from going through what I did.

Q.

Do you think it's hard for people to understand how debilitating chronic fatigue can be?

A.

This is why I talk about it. You can't look at me and say I'm lazy or that this is someone who wants to avoid working. The average person who has this disease, before they got it, we were not lazy people; it's very typical that people were Type A and hard, hard workers.

Patients Whose Doctor Knows Complementary Medicine Have Lower Costs, Live Longer

  Patients Whose Doctor Knows Complementary Medicine Have Lower Costs & Live Longer

A small fraction of general practitioners (GPs) in the Netherlands has completed additional training in complementary medicine after obtaining their conventional medical degree. Using a data set from a health insurer, this paper documents that patients whose GP has additional training in anthroposophic medicine, homeopathy, or acupuncture have substantially lower health care costs and lower mortality rates. The lower costs result from fewer hospital stays and fewer prescription drugs. Since the differences remain once we control for neighborhood specific fixed effects at a highly detailed level, the lower costs and longer lives are unlikely to be related to differences in socio-economic status. Possible explanations are selection (e.g. people with a low taste for medical interventions might be more likely to choose CAM) and better practices (e.g. less overtreatment, more focus on preventive and curative health promotion) by GPs with knowledge of compleme ntary medicine.
Peter Kooreman & Erik Baars, Tilburg University

Thanks to One Click Group for this one....
 

WE DID IT!!!!!!!

FINALLY!!!!!
 
I lost my job in February 2000, and in February 2011 I was finally approved for Disability benefits!  Because I've been in the system so long, Medicare is effective immediately.
 
Unfortunately, the doctors I saw for the first couple of years were doctoring the records more than they were doctoring me, so their records didn't substantiate that I couldn't work, so I'm only getting back payments from October 2002 when I started seeing the good doctor.  But the important thing is ... I'm approved!
 
Of course, WPI is not taking Medicare, so I may need to keep paying for the overpriced health insurance to keep my ability to see them, but we will deal with that at some later date.  The important thing for today is to celebrate that the system works.
 
I'd been told 11 years ago that "benefits don't necessarily go to the sickest, but to the most persistent" and that's certainly been proven true -- I hired a lawyer who's healthy and doesn't forget deadlines, and left the mess in her lap.  She persisted and all I had to do was periodically show up for a meeting.