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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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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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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) .

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.

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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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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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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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