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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
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
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
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
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
Oct 26, 2009
Readers Ask: A Virus Linked to Chronic Fatigue Syndrome - Consults Blog - NYTimes.com

Denise Grady, a science writer for The New York Times, recently explored the link between a recently discovered virus called XMRV and chronic fatigue syndrome, in “Is a Virus the Cause of Fatigue Syndrome?” On the Consults blog, scientists and doctors from the International Association for Chronic Fatigue Syndrome, a society of 500 biomedical and behavioral professionals, took readers’ questions on chronic fatigue syndrome.

Here, Dr. Nancy G. Klimas, who serves on the board of directors of the organization, answers questions on the recently discovered retrovirus and clinical care of chronic fatigue syndrome. Dr. Klimas is a director of the department of immunology of the University of Miami School of Medicine and director of research for clinical AIDS/H.I.V. research at the Miami Veterans Affairs Medical Center. Also read Fred Friedberg’s responses to behavior-related questions in “Behavioral Treatments for Chronic Fatigue Syndrome.”

There is a list of questions and answers, also on behavior therapy, there is often a lot of ruckus over the last, I previewed at bit and seems more sensible than the outrageous graded exercise. take a look at both articles and have your say, just log in first.
 Also of great interest is reference to Osler's Web and a former biotech Dr. Elaine DeFreitas who discovered a retrovirus related to ME/CFS in the early 1990's and the CDC shut her down and out, The National Institutes of Health intentionally destroyed her reputation because it did not mesh with their vigorous assertions that C.F.I.D.S. was psychoneurosis (psychiatric) .
          http://www.oslersweb.com/


They also stated as I have already posted on site, of availability for tests for XMRV, although this article seems abit behind and were you can order it, if it ready that I put in a prior blog post.

Now for me I'm back to bed. My energy is up a notch and the dystonia spasms down,convulsions are not, and I am still very weak to say the least, and still can't do more work on more editing, letters or petitions. may take a few more day to recoup, just being showered and my clothes changed by some else puts me in bed for a period of time after. Also my speech isn't back yet, so no phone calls.


http://consults.blogs.nytimes.com/2009/10/15/readers-ask-a-virus-linked-to-chronic-fatigue-syndrome/


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Posted: Oct 26, 2009 2:33pm
Oct 26, 2009

I was doing abit better when I first did my first youtube videos, I had months in between not being able to do any.

I really got off track to  many times, thinking it was a permanent improvement, nothing ever is with ME/CFS, rare let alone the rest of my illnesses and damage

I sure named this blog wrong and contimplating a change, although my main focus is the main website as able and finding help for copy editing and getting documetns ups , it's going to be too much for me, I can do on blogger it's easier, may link to the main site, not look as professional, however I was worsened so much again that even getting them on blogger is now difficult, I don;t have the energy to SIT UP.

I am worsening more rapidly. save cheryl indeed.

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Posted: Oct 26, 2009 11:41am
Oct 26, 2009

Friday whole left side gave out, down, then knees, down, then knees buckled again.  My left side of body has been weak and drags around on an off since it paralized and my neck first gave out January 2004 when I came off the drugs, ..... and they did nothing... except a forced catscan, the test results got changed to normal from leision to blood clot to normal.

This was different, I go down on the floor almost daily from the myocolonic dystonia for years and prior seizures for years, I still have seizures sometimes sepearte some times mixed with the dystonia. . My whole left side buckled, just gave out and down on the kitchen floor I went, a place I have landed paralized or convulsing or dystonia tremors for years. When I got up my knees buckled and I went down again, in the livingrooom twice, yes I have spent much time on the livingroom floor convulsing, seizing or paralized from the dystonia down my spine. This was differem they just gave out.  I had to crawl on the floor to my bed, also nothing new for, but for a different reason, if I stood up some part of my body would give out.

I remained in bed and had to be bed bathed, no clean hair. At least I wasnt' in too much pain or my ME/CFS so bad I can't tolerate sound or much light or touch.

I have been focusing on getting my spine relaxed and not spasmed in a knot and shortened, some parts are still it tight balls of muscle.

I made here early to the computer,  but my neck gave out again and waist, fortunately I went sideways this time instead of forward like last Tuesday, my chest bruised from slamming into the coffee table when my neck gave out then paralized from the dystonia.

I am keeping the laptops shut as much as possible, the mac remains closed and unused after smasing into that. I actually prefer the pc,

Well this is my 2nd try to be at the computer today, my typing is better, but difficult. Yesterday I tried to respond to an email, short, my muscles and ligaments were so stiff it was barely legible, and yes it hurts to type unless I am on something that relaxes them.

that is about as long as I can sit up, I don't have my brace on for the trunk of my body, I am crashed from my ME/CFS all the time now some days just worse than others, and my hep c has worsned everything has left like this, and just have to wait it out. this am I could barely tolerate any light, touch, now I can.  My neck is stiff, quite rigid that can be the ME/CFS or the muscle ligament damage or the dysotonia.

.Was hoping to make some very important phone calls today, my speech very bad, often can't talk.

I have to get back to bed, and looking forward to getting petitions, mainly letters done to get me in neurological hosptial for everything asap.  They are so scared because so much damage has been done and they covered for it and left me for dead.

We'll I'm not dead yet. How I haven't had a heart attack yet is beyond me, I may have possibley had a stroke

Getting closer and closer into having the pc moved into the bedroom for me. I have been forced to exist mostly there since 1994, extensively since 2003, so it is something I keep pushing off. I have gotten close enough to have someone clear a space for it.


Well I could look at the bright side, maybe I could edit some videos, and type more often. The downside is when I am that bad off and in bed, just doing anything, sound, light, even pc makes it worse. It's a time to shut everything out in order to recover, can't even lift a light cell phone it's so heavy, the fatigue is like all your limbs and body are lead, the flu syptoms come out, the pain and the convulsing eery day and being forced to walk in my home has crashing int bed through the day, or for days, weeks, sometimes it has been months.

I want to suck life in, like I used to, even 1/2 of what I used to.............

Here is a video of a girl who got dystonia from a flu shot, there are many different types of dystonia. What I noticed is it looks like parts of her body are giving out at certain times, and also her speech. I was told I had dsyatria, I thinking the dysontia is invovled as well.

I have uncoordinated movements since January 2003, esepcially after the acute dystonia in March 2003. Allso the spasmodic that has spread through my body so is called generalized, although there are lots of different kinds of generalized as well. And then myocolonic dysotnia

Wait see if I can speak later and get 1 call in at least, no, I haven't tried walking backwards and will have to wait until some one is with me first. I have never heard of this with dystonia's prior.

back to bed Cheryl, maybe phone calls tomorrow or a bit later, I want to type like a fiend and my brain be clear, and edit videos, and of course to be well and the cursed dystonia to STOP. I didin't think I would live though ME/CFS nad FM. the extensive muscle ligament daamge, my whole body, and the dystonia's on top of the, add in some seizures.

it is too much, you think they would have been bending over backwards to help me, and find out which drugs caused what so they could be reported, some I know.

Well can hope for change soon, something, one else has to give besides my body.........





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Posted: Oct 26, 2009 11:27am
Oct 21, 2009

yesterday neck and waist gave out and landed on coffee table and just missed the pc laptop (not the first time, this increasing, it has already smashed my mac which it landed on twice, since coming back from being fixed I keep it away from me and use the old pc laptop)  my left side of my body hadn't gone weak yet and I was just able to slighting move it while going down face side ways with glasses on. The the opposite occured and the spasmodic dystonia in my neck started to cramp paralzing it. So in a very short time,  it went from being to weak the muscles and ligaments and then being too stiff. The pain from the spasmodic dystonia is gruesome to say the least, the levels of gruesome depend on which body part, and also how hard I landed on what every I landed on at the time. Usually it's the floor.

This wasn't letting up, and I wear a bag around my neck of the little medication afforded to me and begged for from a neurologist involved who refuses to give any to stop  the myoclonic dystonia or the spasmodic. I only have 1, I got out of him the clozapam. If I can't reach the bag around my neck, well that speaks for itself.

Usually`I have to be given some form of alchol and I have been left like this for years, and the extensive damage, my dystonia's are alcohol responsive. Go figure as my ME/CFS and Hep C are not. I do have old prescrubed muscle relaxants from years ago Flexeral  before they cut me off I have tried and still do and OTC Norflex, but then the next day, my neck gives out and my waist even more.

My private caregiver was coming, she found a way to get in and get medication in my mouth and some beer. Still didn't work, had to take more, this was really bad one. They increasingly are, the spasmodic dystonia down my spine is every day now, shortening the muscles and liagments, and I go backwards in a bow.

I told her make sure my glassed were ok, I had been able to shove the pc over about an inch after I hit landing, and I told her to go get the camera, it has video. The camera wouldn't go on. Having problems with the batteries. Some of this I need on video, so the neurologists can see what is going on, so they can't pull the same crap they have prior, saying it doesn;t exist, or "it's not happening now", well it's nothing something you do on command.

It took quite a bit of time, a few beers, she couldnt even get me pulled up for some time the spasms were so bad for a while. Finally she had to put one hand on my forehead, and the other around the front of my body and push me backwards so I would be sitting up on the couch.

from there I still managed to dictate my shopping list which I was just in the process of starting to type when it happend for her, she got me to bed before she left, and by then the left side of my body was dragging.

Needless to say I didn't get showered yesterday or my clothes changed. I was able to delete emails that weren't personal in nature, or have no interest in for the next while, and sent 2 brief ones out in the evening, and back to bed.

about this morning, same as every morning since I came off the drugs in 2004, waking up to mycolonic dystonia (used to be always with seizures, now sometimes, or separate), with the extra delight of having the dystonia cramp down my spine every day now .............next ............. on ward

actually I have a video where my neck is cramped and my spine, I was editiing it last week for my youtube channel(s), I was going to upload it here but I can't find it on the computer. when I do I will post it.

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Posted: Oct 21, 2009 9:31am
Oct 19, 2009

the left side of my body, which is often weak, totally gave out, from the knees, my neck and I went down on the floor - no dystonia convulsions. This has happened before, but is increasing and different parts of my body. I am wondering is this all the extensive damage, or is MS involved as well. Many with ME/CFS have problems with movement, it is classified as a motor neuron disease and disease of the central nervous system by WHO since 1992.

However, I have the extenstive ligament damage from the repeated brain and body damage from 2003-2004, including the left side of my body that paralized and then remained weak and often drags around.

I made it to bed shortly after going down on the living room floor, only to have the myoclonic dystonia start, as usual shortly after, it starts right away or shortly after I wake up. And then the gruseome spasmodic dystonia down my spine arching me paralized backwards in a bow like shape, often with the convulsions included.

That has been my morning. On with the day and more writing and editing for my website, I have put out calls for help. I keep writing everything that happened over and over, obviously still tramatized and left like this. I worked on petitions, I have not been able to get the over view under 5 pages. I feell I can't leave anything out. Have that all clearly displayed on a website will help.

onward -
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Posted: Oct 19, 2009 6:53am

 

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Cheryl Sunshine Benson
female , committed relationship
Ontario, ONT, Canada
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