ME-CFSCommunity.com

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

Members

  • Kim Collins
  • Tim K
  • Barbara Rasp
  • Cheryl  Benson
  • Colleen Richardson
  • Elliot Hollingsworth
  • Kiana Peterson
  • Marie Pis
  • Emily Richards
  • Kate
  • Jim Shipway
  • Valerie Cooke

Latest Activity

Hi Gwen...I'm so surprised that someone else is on the same diet as I am. That is so rare! Maybe people just don't talk about it. Many people try it...they say yes it works...they feel so much better....they lose weight....BUT....they miss their p...
48 minutes ago
Jim, I don't have this symptom, but it's mentioned on many comprehensive lists of symptoms for CFS, and even more often on lists for fibromyalgia and ME, so I don't think it's uncommon. Since many of our senses can become hyper-sensitized, it's no...
1 hour ago
Mary thank you for putting all this into a form that "the rest of us" can follow! One of my doctors is saying to hold off on the VIPdx test as it is actually just an RNASE panel and not a true test for XMRV. Any thoughts about that? ...and I joi...
1 hour ago
Hi Kim - Welcome I have a son that keeps sending me things about the H1N1 vaccine as well - mostly negative. I was suppose to get my shot this week but I kept putting it off. I do have an appointment with my family doctor next Thursday, so we shal...
2 hours ago
Thankyou Julia and Jane for your comments, they have been very helpful, I am now trying to pace myself.
4 hours ago
Replying to Sarah G's suggestion that sick people should send healthy people as advocates, I would like to make two suggestions and one comment. The first is for a t-shirt with something like "I am an advocate for someone too sick to be here", or ...
4 hours ago
MI Inch updated their profile
4 hours ago
MI Inch updated their profile photo
5 hours ago
Andrea Whittemore-Goad added a discussion
http://www.wpinstitute.org/WPI%20Release%20Diagnostic%20Test.pdf I spend most of my time working on 2 things facebook fan page for Whittemore Peterson Institute and Cure 4 ME our new cause on Facebook. If you would like the most up to date inform...
5 hours ago
Kathi - I have two things for you. One is a great big hug, from the bottom of my heart. The other is what saved my life - pay attention to Erik. Following his lead and doing what he does to avoid mold toxin exposure has made the difference betwe...
5 hours ago
Alex - I think the HIV-AIDS, XMRV-XAND comparison is a no-brainer, but there are researchers, clinicians, bureaudrats - and insurance companies - who badly need XAND to still be "CFS". We have to ask those who speak for us - for example, if you ar...
6 hours ago
Oh gracious - my brainfog is showing. I think I fixed the typos, and thanks for those who pointed them out. Joy - they did not conduct those studies on abuse the way that an honorable researcher would have. The normal way to do it would have been...
6 hours ago
I still have hope after forty years; however, although I have been miserable and have had limited options as to life patterns, I have never been as sick as many people. I would characterize my case as persistent moderate with periods of mildly sev...
6 hours ago
you are right. i guess i will wait. if i start AZT now, it might affect the PCR testing too (i will be tested for XMRV in a few weeks). just the idea of a virus replicating in my body for 17 yrs, unchecked, is awful. also, i feel like death 24/7 a...
7 hours ago
Kim Collins, Tim K and Barbara Rasp were featured
7 hours ago
Hi All, I have noticed a number of people here and elsewhere mention that they have or had shingles. Has anyone tried Famvir (generic = famcyclovir)? Around here it is the gold standard for treating shingles. When my Dad had shingles it stopped it...
7 hours ago
Abuse studies show that 40% patients with CFS were abused in someway, my question is what about the 60% with CFS? If you take a sample of well people and ask the same questions you will probably get 40% have been abused.. you can make stats fit an...
8 hours ago
Cheers Gwen: Hi there, I am new to this site-diagnosed with ME/CFS in 1994-like you I have major concerns with getting "flu or H1N1" shot. I have decided "not" to-this was not an easy decision...my daughter did a paper on "H1N1" in University, she...
8 hours ago
Isabel updated their profile
8 hours ago
how long have you been on the AZT?
8 hours ago
 

Be sure to check out the following:

A new ME/CFS fund raising campaign has been launched.

The ME/CFS Pocket Money Research Fund is aimed directly at those who have the most to gain from an increase in research on this terribly debilitating disease, the sufferers themselves, their family and friends. This is a time of great economic challenge for all, and most particularly on we who have already paid such a high economic price for our illness. The fact remains, however, if we don't act, we must wait years more in the HOPE that someone else will.

For those who are tired of waiting, you can learn more about The ME/CFS Pocket Money Research Fund HERE.

A new Group has been formed by Paula Hayward with yet another logo design by the amazingly talented Sebastián Chico. Check it out HERE.

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 39 Replies

Started by Rachel in General Discussion. Last reply by Paula Hayward Nov 19.

sue pattersnon

CFS: Anyone on antivirals? 117 Replies

Started by sue pattersnon in Medical Treatments & Issues. Last reply by Ramona 6 hours ago.

Louann

ADVOCACY for the Mitochondria Challenged 58 Replies

Started by Louann in Advocacy. Last reply by Alex Charles Young 4 hours ago.

Rachel

CFS/ME Sleep Issues 48 Replies

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

Rachel

Crazy Cures 23 Replies

Started by Rachel in General Discussion. Last reply by Julia Rachel Aug 30.

Blog Posts

Dan Moricoli

The Pocket Money Research Fund

Last June, the lingering thought that a fund raising campaign among, and within, those afflicted with ME/CFS began to gain momentum. We were in the midst of conducting a series of seminars entitled “Breaking Free of the Confines of Chronic Illness” when on impulse, a hat was passed to raise money for ME/CFS research. In just a few minutes, $230 was raised. There was no campaign, no structure, no idea as to what to do with the money. It just seemed to be a good idea at the time. Most impor… Continue

Posted by Dan Moricoli on November 17, 2009 at 9:36am — 3 Comments

Mary Schweitzer

A Primer for XMRV and XAND

A primer for XMRV, XAND, M.E. - and CFS

On October 9, 2009, an article was published by Judy Mikovits et al in the highly prestigious research journal Science announcing the findings that a newly discovered retrovirus, called XMRV, had been found in 67 percent of a sample of patients diagnosed with CFS over a period of 25 years. There are only 3 known human retroviruses: HTLV, HIV (which leads to AIDS), and now XMRV. The importance of this finding cannot be overstated. The Cleveland Clin… Continue

Posted by Mary Schweitzer on November 30, 1999 at 12:00pm — 12 Comments

Mary Schweitzer

Written testimony presented to the CFSAC 29 October 2009 (Revised)

What is the purpose of the Chronic Fatigue Syndrome Advisory Committee (CFSAC)?
Written Testimony presented to the CFSAC

Department of Health and Human Services
Washington, DC, 29 October 2009
Revised, 16 November 2009
Mary M. Schweitzer, Ph.D.

[This is a slightly revised version of my presentation, taking the news of XMRC into account. The official version of my written testimony can be found here:… Continue

Posted by Mary Schweitzer on November 18, 2009 at 2:00pm — 7 Comments

Sue Jackson

Quote It Saturday 11/14

I've adopted a weekly feature from my book blog for my CFS blog, featuring book quotes that speak to our challenges in living with chronic illness.

Today's quote is from Christopher Reeve's amazing memoir, Still Me. I'm not normally into celebrity memoirs, but this one is unique. Reeve's strength and courage in the face of his complete paralysis is inspiring and awesome. I also highly recommend his follow-up memoir, NothingContinue

Posted by Sue Jackson on November 14, 2009 at 5:43pm — 15 Comments

John Herd

Relapse But Laughing

Relapse But Laughing

I have had somewhat of a relapse here for a few days, but this time not from ME/CFS. It has been from two days of Mutt and Jeff trying to put a new hot water heater in my home, destroying the first replacement and having to get a second one.

After a day of no hot water Mutt showed up at 8:00 AM to get the old water heater out and put the first new one in. Throughout the first day connection flex pipes kept getting broken, new ones had to be purchased, a electrical c… Continue

Posted by John Herd on November 12, 2009 at 3:41pm — 21 Comments

Dan Moricoli

Happy Birthday ME-CFSCommunity

Exactly one year ago today this community was launched to serve those affected by ME/CFS.

Unfortunately, regardless of our country of origin, we have learned that we are alone in this world. Our governmental agencies largely ignore us and only minimally fund desperately needed research. All of us have been subjected to misdiagnosis by medical professionals and healthcare systems more focused on preservation of the status quo rather than treating those in critical need. Only a precious fe… Continue

Posted by Dan Moricoli on November 11, 2009 at 8:30am — 18 Comments

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