ME-CFSCommunity.com

Helping those affected by ME/CFS, FM and other neuroendocrineimmune disorders on their respective paths towards wellness.

Members

  • Laura Casale
  • Carlos Gonzalez
  • guy aldis
  • Margaret Reid
  • Khaly Castle
  • Jenny Land
  • Kathy Guerrero
  • Maria Pittman
  • Sharon Hinck
  • Debbie Bradshaw
  • Sus Cue
  • Pam Cole

Birthdays

Latest Activity

Pat Keshen Mayer added a photo to the album 'Dr. Klimas lecture 11/7/09'
7 hours ago
Dave Croll updated their profile
8 hours ago
lolder (Linda) updated their profile photo
8 hours ago
Hi Camilla...a very good blog. Its taken long enough for this research on brain activity in FMS patients to reach the general public. The research was very interesting...that's probably why we're so tired....our brains work overtime....no turn off...
9 hours ago
Cheryl Benson updated their profile
11 hours ago
Kathryn and Khaly, I pretty much give freely my writings and graphics to people in the ME/CFS community; all folks have to do is ask. Were my color printer not suffering from its own form of post exertional fatigue I'd offer to mail you copies o...
13 hours ago
Hi Angela, I feel so bad for you. Sounds like your dr just doesn't want to be bothered. Typical. You should probably be seeing a specialist. I'm from Ont and it is law here that we be allowed access to our records. Don't know about BC. You should...
15 hours ago
Lucia updated their profile
15 hours ago
A discussion started by Camilla Lawson was featured
16 hours ago
Camilla Lawson added a discussion to the group Fibromyalgia Worldwide Group
16 hours ago
I absolutely support WPI.....It's some of the other ones I don't.
17 hours ago
Michael, I agree with you; bias is the quicksand that impedes sound investigational progress. There are many institutions I would have little faith in because of their entrenched bias. There are other ones, most notably WPI at this point, that I...
17 hours ago
Unfortunately when science needs to be verified through bias institutions, this creates roadblocks.
18 hours ago
it figures that a private institution finally answered the prayers of so many, while these puppets betrayed us all. how can these "yes" men call themselves doctors? they are a shame to their profession. unfortunately, we have had to pay with our l...
21 hours ago
Hi Aileen! I went off of the Amitriptyline in two weeks, according to my Internist's instructions. I saw the Rheumatologist last Wed. and he is highly suspicious of Autoimmune Hepatitis. I am praying that it is something less severe and not a life...
21 hours ago
You quack me up. :-)
21 hours ago
Great, John. Thanks. Yes, I think it's time for another donation to the WPI.
22 hours ago
Oh, hey Carlos! Yea, I think the XMRV discovery is important on many fronts, most important at this point is credibility. I really don't think XMRV is the initial trigger in the disease process, more likely another opportunistic infection. Howe...
yesterday
John Herd added a blog post
Have you funded research recently? There are doctors who just don't or won't understand ME/CFS. And there are those whom want to just make money from us with their convoluted supposed 'treatments'. Please support the research of those investi...
yesterday
Aw, Kat, you are so welcome. And I agree John, I'd definitely hand some of these graphics up in my house!
yesterday
 

Be sure to check out the following:

John Herd has his own take on what the association of XMRV and ME/CFS means. Get a better look at some of his ideas HERE.

Dr Nancy Klimas discusses the XMRV virus discovery, what it mean, what's next and what you can do in a video recorded Oct 12th. See it in our Video section.

Then, If you care to grab a cuppa coffee or tea and chat awhile . . .
try our instant messaging Chat Room at the bottom right of your screen or the Video Chat room mentioned below.

What do you MOST want your family and friends to understand about you and your medical condition? A new section of our community has been added For Family and Friends. It's meant to be a place they can gain some insight into how ME/CFS and FM effects us as individuals.

Help advance ME/CFS research. In conjunction with Dr. Nancy Klimas' research team, the ME/CFS Case Definition Survey can be accessed HERE.. Please join the hundreds of others from this community and take a few minutes to complete it to expand the body of knowledge on our disease.

Have you tried live Video Chat: yet? It's totally cool and so easy. To get started:

1. Make a statement like "Anyone interested in video chat?" in the written chat box (it's at the bottom right of the screen). This is a great place to check when you first log onto the site to see who else is around and available to talk.
2. Pre-arrange a meeting with others by setting a time to meet in the Video Chat Room (up to six at a time may use it)
3. Go directly to the Video Chat Room, check in and take your chances that you can join in a session in progress, or start one yourself by waiting around a bit.

If you don't already have a videocam attached to your computer, you can buy both new and used Logitech QuickCams on EBAY.

Contributions are sorely needed to support this website. There is no benefactor or foundation supporting us. Our ability to survive rests with the individual members of the community.

Please consider the value of this site to you and support it with a donation commensurate to its importance to you. A click on the icon below and a willingness to part with a few dollars, euros or pounds sterling to help yourself and others is all it takes.

Forum

Rachel

Thankfulness 38 Replies

Started by Rachel in General Discussion. Last reply by Elizabeth Nov 3.

sue pattersnon

CFS: Anyone on antivirals? 94 Replies

Started by sue pattersnon in Medical Treatments & Issues. Last reply by Dave from FL Nov 6.

Louann

ADVOCACY for the Mitochondria Challenged 58 Replies

Started by Louann in Advocacy. Last reply by Janis Bell Sep 17.

Rachel

CFS/ME Sleep Issues 48 Replies

Started by Rachel in Sleep Issues. Last reply by David Greene Oct 25.

Blog Posts

Paul Winter

The MEA Makes A Statement About XMRV That Doesn't Bode Well for UK Sufferers.

Below you will find a statement that Charles Shepherd of the UK charity MEA about the XMRV virus. It all sound's reasonable until you read this paragraph:


"In the present situation, with many research groups reluctant or unwilling
to use Canadian criteria, and not having stored samples from patients that
meet Canadian criteria, the best way forward may be for everyone to agree to
use Fukuda defined CFS. We may then be able to draw some conclusions about
which people who come under the wide
Continue

Posted by Paul Winter on November 4, 2009 at 10:50am — 6 Comments

Khaly Castle

Let The Spin Begin!

I thought it might be interesting to see what purveyors of some of the various CFS "protocols" might be saying about the XMRV discovery.

Ashok Gupta (Amygdala Retraining):
"Recently you may have read about the “XMRV” virus, and how it might be involved in ME/CFS. I have spent the last few weeks researching the area, and have written a draft medical paper (below) which explains how the XMRV findings fit with the Amygdala Hyperarousal Model for ME/CFS and Fibromyalgia.

Essential
Continue

Posted by Khaly Castle on November 1, 2009 at 3:49am — 16 Comments

Khaly Castle

CFSAC meeting

Just a quick update for those who are unable to watch...Dr. Peterson gave a riveting presentation that met with a standing ovation. He seemed to indicate that there may very well be a danger to our blood supply, as he was able to infect cells with infected blood cells, with plasma, and very interestingly with blood that had been frozen for 20 years.

Annette Whittemore spoke for 5 minutes. At first she was going to be disallowed from doing so, as she was not on the roster to speak. But Chairman… Continue

Posted by Khaly Castle on October 29, 2009 at 11:54am — 81 Comments

John Herd

The Universe Unravelled

The Universe Unravelled

The universe is all about dark matter.

I propose that dark matter is the electromagnetic energy lost from gray matter during the sparking of our synaptic networks.

When people talk of brainfog and lost thoughts where do you think the electo-energy of those thoughts goes? Yup out there into space.

Oddly enough, that's also where lost socks that have disappeared from the laundry go as well.

Their fibers bond with the electromagnetic lost thoughts becoming the fi… Continue

Posted by John Herd on October 23, 2009 at 1:12am — 16 Comments

Heidi

We're Not Gonna Take It - my new anthem

http://www.youtube.com/watch?v=-YHREW23NCU&feature=related (Karaoke version with words)

So, my latest warped fantasy is to dress in a rat costume with a sign that reads "WPI, please take this lab rat and do with me what you will" as I hold a stereo over my head blasting Twisted Sister's song "We're Not Gonna Take It" at the CFSAC meeting next Thursday. Instead, I will be going dressed appropriately, probably with a… Continue

Posted by Heidi on October 22, 2009 at 8:47am — 10 Comments

Khaly Castle

Judy Mikovits on XMRV

http://merutt.wordpress.com/tag/chronic-fatigue-syndrome/
This was posted on a couple of other message boards. Thanks to everyone who dug it up!

1) Question: XMRV – Is this a new new virus?

Answer: Yes. prior to this paper showing XMRV is beyond a shadow of a doubt a Human infectious retrovirus, there are only two other human retroviral infections: HTLV1 and HIV

2) Question: Does XMRV cause CFS?

Answer: Both HTLV1 and HI… Continue

Posted by Khaly Castle on October 21, 2009 at 2:07am — 4 Comments

Photos

Loading…
 
 

About

Dan Moricoli Dan Moricoli created this social network on Ning.

Create your own social network!

Our Worldwide Reach

Our members reside in:
Argentina, Armenia, Australia, Belgium, Belize, Canada, Christmas Island, Czech Republic, Denmark, Germany, India, Kenya, Ireland, Italy, Mexico, Netherlands, New Zealand, Northern Ireland, Norway, Philippines, Portugal, Scotland, Singapore, Slovakia, Spain, Sweden, Ukraine, United Kingdom and the United States

Events

 

© 2009   Created by Dan Moricoli on Ning.   Create Your Own Social Network

Badges  |  Report an Issue  |  Privacy  |  Terms of Service

The ME-CFSCommunity maintains a strategic alliance with the following organizations. Each provides a unique service to those affected by ME/CFS.
Please visit their respective websites.


ME-CFSKnowledgeCenter
National ME/FM Action Network
P.A.N.D.O.R.A.
Phoenix Rising
Wisconsin ME/CFS
Sign in to chat!