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ME/CFS - The Methylation Cycle - What to Take to Improve it
Feb 8, 2010

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Posted: Feb 8, 2010 10:31am
Correlation between dystonia and fatigue? 18 Hour Day work out, Add that to ME/CFS & a Mac
Feb 7, 2010

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Posted: Feb 7, 2010 7:43pm
Kay Gilderdale cleared of attempting to murder daughter with ME
Jan 25, 2010

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Posted: Jan 25, 2010 8:35am
Letter to Keir Starmer QC: Not in Public Interest to Prosecute Kay Gilderdale
Jan 8, 2010

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Posted: Jan 8, 2010 12:03pm
ME/CFS, Joints body parts giving out from generalized dystonia and muscle ligament damage
Nov 17, 2009

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Posted: Nov 17, 2009 6:25am
ME/CFS Chronic Fatigue Syndrome Advisory Committee Meeting (CFSAC) - Day 2 - 420 min Video
Nov 4, 2009
Chronic Fatigue Syndrome Advisory Committee Meeting (CFSAC) - Day 2

Air date: Friday, October 30, 2009, 9:00:00 AM

Time displayed is Eastern Time, Washington DC Local

Category: Advisory Boards

Description: The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services via the Assistant Secretary for Health of the U.S. Department of Health and Human Services on issues related to chronic fatigue syndrome (CF.

Wanda K. Jones, DrPH

CFSAC Designated Federal Official

Deputy Assistant Secretary for Health – Women’s Health

For more information, visit http://www.hhs.gov/advcomcfs

Author: HHS Office on Women's Health (OWH)

Runtime: 420 minutes

CIT File ID: 15409

CIT Live ID: 7909

Permanent link: http://videocast.nih.gov/launch.asp?15409


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Posted: Nov 4, 2009 10:43am
ME/CFS Chronic Fatigue Syndrome Advisory Committee Meeting (CFSAC) - Day 1 - Video Link 480 minutes
Nov 4, 2009

Chronic Fatigue Syndrome Advisory Committee Meeting (CFSAC) - Day 1


Air date: Thursday, October 29, 2009, 9:00:00 AM

Time displayed is Eastern Time, Washington DC Local

Category: Advisory Boards

Description: The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services via the Assistant Secretary for Health of the U.S. Department of Health and Human Services on issues related to chronic fatigue syndrome (CF.

Wanda K. Jones, DrPH

CFSAC Designated Federal Official

Deputy Assistant Secretary for Health – Women’s Health

For more information, visit http://www.hhs.gov/advcomcfs

Author: HHS Office on Women's Health (OWH)

Runtime: 480 minutes

CIT File ID: 15408

CIT Live ID: 7908

Permanent link: http://videocast.nih.gov/launch.asp?15408



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Posted: Nov 4, 2009 10:39am
ME/CFS Fuctioning and Energy Index Tables take to your Doc
Nov 4, 2009

For fuctioning charts, you can down load a PDF and take to your doctor,a nd keep one yourself, here is a link to one, I have seen others, that I felt worked better as many of us fluctuate between levels, some are permanent.


http://www.cfsviraltreatment.com/energy_index_score/index.html


http://notdoneliving.net/foothold/scales/david-bell#high_2


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Posted: Nov 4, 2009 10:17am
ME/CFS LATEST NEWS: XMRV Retrovirus TESTING is Available
Nov 4, 2009
http://www.krnv.com/Global/story.asp?S=11429556


Reno laboratory offers diagnostic testing for retrovirus

Last month scientists at Reno'sWhittemore Peterson Institute and the Cleveland Clinic published the results of a study that found the retrovirus XMRV present in more than 95 percent of chronic fatigue patients.

Though it has not been proven that XMRV causes the neuro-immune disease, scientists say there is a direct link.

Following the announcement of the discovery the institute received an outpouring of requests of testing for the retrovirus, according to a publicist.

Now, a state certified labratory in Reno is offering diagnostic testing for XMRV in cooperation with the institute.

Visit http://www.vipdx.com// for more information on the tests.

VIP Dx Viral Immune Pathology

LATEST NEWS: XMRV TESTING

Dr. Vincent Lombardi, the primary investigator and first author on a paper that appeared in the 8 October 2009 issue of "Science", is the Director of Operations for the licensing and development of the XAND test assays used by VIP Dx for the detection of XMRV.

The landmark research publication, "Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome", appeared in the October issue of the prestigious journal Science (www.sciencemag.org).

We are also pleased to announce that VIP Dx has licensed this technology allowing us to offer the most accurate and sensitive testing available for XAND (XMRV associated neuro-immune disease).


TO ORDER XAND TEST KITS, CONTACT VIP Dx.: http://www.vipdx.com/contact_us/


To learn more about our XMRV tests, Click here: http://www.blogger.com/goog_1257357919895
..

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Posted: Nov 4, 2009 10:09am
ME/CFS Crashed = Bedconfined or almost - The Computer is my bedmate
Nov 4, 2009

Although my functioning level is a 0-3 on ME/CFS scales, , which means I can get to the bathroom most often and kitchen, and varying times be able to sit up at computer in livingroom, that doesn't including all the muscle liagment damage in my body, my left side dragging around, dystonia convulsions daily which take energy and cause me to crash more daily as dies walking in my home not  and  the spasmodic dystonia spreading through my body that has become generalzied and forced to walk in my home as I am not in wheelchair accessable home. I have increasingly worsened over the years left like this

However, the laptop was moved into the bedroom last week, I have been holding off for some time as that is where I have mostly existed since 1994, and extensively, sometimes totally since 2003, yes totally, not being able to get to the bathroom. . I am declining again as those do with ME/CFS and FM, however I have the extensive muscle and ligament damage as well as all the rest, oh did I mention Hep C too?.

I will add that prior to the brain/body damage and dystonia's, my fuctioning level was higher but the flucations were so severe that any of the ME/CFS scales I have seen still don't fit, then or now for severity based on how much you can fuction. It seems to ranged between the scales then and now.

The bag I wear around my neck has the little medication (1 - clonzapam) afforded to me and begged for from a neurologist involed for they dystonia's. It's not enough. Fortunatley I have old muscle relaxants to stop the severe spasming throughout my body, especially my spine, dopamine or dopamine antagonist stopped the myocolnus dystonia I have endured for years, and relaxed the muscle and ligmaent damage however, I was cut off that and all doctors in 2004.

 However, since I got ME/CFS I don't tolerate flexeral very well, and take 1/4 - 1/2 a pill. Alcohol will uncramp the spasmodic dystonia's but I am intolerant and suffer tremdously when it has to be used, after, some times nothing else will uncramp it, especially my neck and my sometimes my spine. As for the Norflex that has been put away, it caused my neck and waist to give out repeatedly landing my head on what ever was nearest. My waist gave out today and I haven't taken any muscle relaxants, just the clonazapam.

This is a severe crash from my ME/CFS, although I am crashed every day and have been mostly bedconfined for years, sometimes loosing my calf musles which is extremely painful. The first time was mid-2003. So I keep walking in home abit, but it sets off movement disorders as well and I regularly land on the floor convulsings from dystonia, having a seizure (rare now), or part of my muscles spasmed so badly from the generalized dystonia it lands me on the floor often with convulsions.

Which brings to mind videos to edit. I actually wrote most of this the other day. Yesteday was my first day able to sit up, been showered and clothes changed by private caregiver. It has been a gruesome go and look to be pulling up abit more each day and back out in the living room, even then I am in and out of bed most days.

For fuctioning charts, you can down load a PDF and take to your doctor,a nd keep one yourself, here is a link to one, I have seen others, that I felt worked better as many of us fluctuate between levels, some are permanent.

http://www.cfsviraltreatment.com/energy_index_score/index.html

http://notdoneliving.net/foothold/scales/david-bell#high_2


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Posted: Nov 4, 2009 9:57am

 
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Cheryl Benson
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