ME-CFSCommunity.com

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

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Our members reside in:
Algeria, Antigua and Barbuda, Argentina, Armenia, Australia, Belgium, Belize, Brazil, Canada, China, Christmas Island, Czech Republic, Denmark, Egypt, France, Germany, India, Ireland, Israel, Italy, Jamaica, Kenya, Malta, Malaysia, Mexico, Myanmar, Netherlands, New Zealand, Nicaragua, Northern Ireland, Norway, Pakistan, Philippines, Portugal, Puerto Rico, Singapore, Slovakia, South Africa, Spain, Sweden, Taiwan, Ukraine, United Kingdom and the United States

Members

  • Marie Kuby
  • Kristen Twedt
  • Rhona Savannah
  • Geoffrey Hallmann
  • Regina Clos
  • Arlene Marom
  • Ed Bauer
  • Benjamin Carter James
  • Susan
  • leon woodbine
  • sharon anne
  • Sleeping Beauty

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Latest Activity

Hi Sherri and Valere! I have not heard of this program but am very interested in it! Can you be more specific? Blessings! Julia...
20 minutes ago
Hi ANN! Florida is a GREAT place to be with our illness! It seems Floridans are blessed with Citrus and GREAT doctors! It is nice to meet you! Blessings.Julia
22 minutes ago
51 minutes ago
Sherri, I feel for you. I too live in a small town and have no transportation except once a week or when I do to the doctors. There is a usually a program that ssi could probly help you out with is help getting a ride from the county you live in to…
1 hour ago
GoddessinRepose added a discussion
I have been dealing with CFIDS for about 18 years and have not had digestive issues.  I have started doing a raw diet (50-80% raw) several months ago.  I have started having diahhrea Saturday evening and it seems to be worse when I eat snack food (b…
2 hours ago
Hi Valere! WELCOME!!! I and my son Have CFIDS......I also have Psoriatic Arthritis so I can relate to your Fibro and Arthritis issues! I have anklosing spondylitis as well. My son has more cardiac involvement than I do....I LOVE to garden! Perhaps w…
2 hours ago
2 members updated their profile photos
2 hours ago
Cyd James added a blog post
Just got word on the Cheney message board that we can announce to any ME/CFID's groups where we are also members that there will be a live broadcast this Wed. in Asheville, NC with Dr. Mikovits. It is free to the public. Here is the information. (No…
4 hours ago
A blog post by Mary Schweitzer was featured
What this post contains is deliberate deception by the CDC - in refereed journal articles and when speaking to the press. I'm tired of sending this information to the CFSAC, to politicians, reporters, and scientists. Nothing ever happens. Maybe one…
5 hours ago
www.maeo-cfs.on.ca doesn't work should be www.meao-cfs.on.ca Easy typo - I wanted to see website and whole flyer I don't see it in Events and News -is that where it will be? Also The IACFS/ME Conference isn't noted there either
12 hours ago
This is fantastic!!! Do you know if there will be a video, if it will be online after? I hope doctors will attend, and finally learn more (or something) about ME/CFS Perhaps you can put this in the Events, so everyone can see it - I saw it by look…
12 hours ago
This is fantastic news!!! Dr Donnica is great-she really knows everything about CFS, and presents it well. She has appeared on the Dr Oz show, ABC News Good Morning America and The Doctor's Channel.-links below Her website has several excellent arti…
13 hours ago
Jennifer Terry added a photo
14 hours ago
A message from Mary Schweitzer: "Could you add as a comment that I'm stuck out of town without my laptop, but I can get email, and oddly enough can accept an offer to be added as a friend. So if someone wants me to respond, add me as a friend. And…
15 hours ago
THIS WILL BE UPDATED WHEN MORE INFORMATION BECOMES AVAILABLE. STAY TUNED!!!!
16 hours ago
So, let's see. A Retrovirus created in labs and released into the public and the US and UK health organizations KNEW IT. And yet they covered it ALL up and damaged the people they KNEW darn well had gotten sick from this Retrovirus, hoping we would…
16 hours ago
Hi Valere. I am a fairly newbie to this site, too. I was especially heartened by the warm welcome I received when I first registered. I'd like to pay that forward and welcome you. I am still finding my way around this site, but have opened up more…
16 hours ago
Thank you Aileen this is great news for our country. I hope it gets attended by patients, physicians and researchers !!! Perhaps we could invite some of our canadian health minister???
16 hours ago
FLYER The Myalgic Encephalomyelitis Association of Ontario and the Environmental Health Clinic, Women's College Hospital Present Our Special Guest Lecturer. Dr. David S. Bell "Current Findings and Research into ME/CFS: XMRV Virus and What It Means…
17 hours ago
If anyone knows how to use the type chat (where you check to see who is on line, bottom right rectangles) just type to me when I am online and I will help you with the webcam. Camilla
17 hours ago
 

Welcome . . .

Access to the various sections and features of the ME-CFSCommunity beyond the Main Page is limited to registered members only.

Our objective is to facilitate the exchange of information on ME/CFS, fibromyalgia and related illnesses as well as to help members end the isolation so often inflicted upon its victims.

The primary purpose of this community to provide a platform with which those affected by ME/CFS might easily communicate using FREE live Video Chat, instant messaging Chat, Blogs, Forums as well as the other tools and features.

Membership is FREE. Our membership roster is held in the strictest confidence and is not shared with any other organization nor used for any commercial purpose.

Please join us. You'll find us cordial and welcoming. Our community, interesting and informative.

Dr. Nancy Klimas’ new ME/CFS Clinic near Miami . . . a place of welcome surprises

Comfortable, electrically controlled massage recliners in a doctor’s reception area? Learn more about this amazing new facility HERE.

You might also care to learn about the experience of being a patient at the new clinic HERE.


Dr Nancy Klimas' presentation: XMRV, CFS/ME & You
A compelling and comprehensive review of the disease, the XMRV virus (discussed in detail) and what lies ahead. Even the most knowledgeable in attendance gained new insights into their illness and the prospect of a new road to recovery. A particularly interesting Q&A session follows the formal presentation. View the entire series in our Video Section.
For a DVD copy of the presentation, email: info@cfsknowledgecenter.com

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.

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.

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

Dan Moricoli

Spirituality and Illness 7 Replies

Started by Dan Moricoli in General Discussion. Last reply by Pamela Van De Wege Jan 29.

amanda

CDC ME/CFS Group Relieved of XMRV Research! 38 Replies

Started by amanda in Research Issues & News. Last reply by Michele Krisko Feb 4.

Dan Moricoli

Caregivers 8 Replies

Started by Dan Moricoli in General Discussion. Last reply by Jazzie Jan 28.

Rachel

Thankfulness 88 Replies

Started by Rachel in General Discussion. Last reply by Nancy Elizabeth Ray Feb 5.

sue pattersnon

CFS: Anyone on antivirals? 190 Replies

Started by sue pattersnon in Medical Treatments & Issues. Last reply by Pamela Van De Wege Jan 28.

Blog Posts

Mary Schweitzer

CDC Research on CFS: Open Deception

What this post contains is deliberate deception by the CDC - in refereed journal articles and when speaking to the press.

I'm tired of sending this information to the CFSAC, to politicians, reporters, and scientists. Nothing ever happens. Maybe one of you reading this can find a way to do something about it.


Bill Reeves' name is on all of it - but he's not the only one, and I ask every co-author, every collaborator, to disavow this research, and the resulting questionnaires.


In

Continue

Posted by Mary Schweitzer on February 7, 2010 at 7:00pm — 8 Comments

Khaly Castle

CFIDS Association - What do you want to say to them?

I have been involved in a conversation with Brian Smith, board member of the CAA. He has become aware of our growing dissatisfaction with the organization, and wants to know what he personally can do to help. He has stated that he is not speaking for the CAA, just for himself.

I suggested that we take a poll on what people are unhappy about and would like to see done differently, and that perhaps he could take the results of that poll to his next board meeting.

So, what do you want to say to h… Continue

Posted by Khaly Castle on November 22, 2009 at 3:25pm — 68 Comments

Nanlaine

I am a new member

Hello all,
I have enjoyed reading your blog and decided to join. Although not yet diagnosed with M.E. I have all the symptoms. Was wondering how long it took some of you to come to terms with the diagnosis? I am "stuck" emotionally and physically.

Another question - is anyone on Cymbalta or any other ant-depressant? Does it help?

I found that the 1st anti-depressant given to me :Cypralex, didn't help.

What I'm struggling the most with is the brain fog and the inability to concentrate, process… Continue

Posted by Nanlaine on January 25, 2010 at 11:30am — 18 Comments

Dan Moricoli

On being a patient of Dr. Nancy Klimas . . .

I saw Dr Klimas yesterday January, 22nd as a patient at her new CFS Clinic near Miami. What follows are my impressions of that visit.

It should be noted that I first tried to see Dr Klimas in late 2006 some months after I contracted ME/CFS in May of that year. I quickly learned that the University of Miami clinic where she maintains a clinical practice a couple of days a week had a waiting list measured in years. I quickly gave up hope of ever becoming a patient of the renown doctor.

It should… Continue

Posted by Dan Moricoli on January 23, 2010 at 9:09am — 13 Comments

Dan Moricoli

Spammers

One of the problems in having an open website is that occasionally a spammer gets in. Such was the case today with someone named Joy who posted messages under the name Anita.

I have banned Joy from the site and her content was thus eliminated.

I apologize for the intrusion. I only wish I could say that it won't happen again. But . . . it likely will at some point.

Please, when any message or posting is received that seems suspect . . . DO NOT REPLY to it. Please advise me of it and it willContinue

Posted by Dan Moricoli on January 22, 2010 at 6:07pm — 22 Comments

Mary Schweitzer

Is there a case to be made for "All of the above"?

The critiques are beginning to come in about the discovery of a new retrovirus in patients with an agressive form of prostate cancer - and in patients with the diagnosis "chronic fatigue syndrome." [Lombardi et al, "Detection of Infectious Retrovirus, XMRV, in the Blood Cells of CFS Patients,” Science (9 Oct 2009).]

Everyone familiar with what passes for government-approved "research" regarding "chronic fatigue syndrome… Continue

Posted by Mary Schweitzer on January 17, 2010 at 4:04pm — 12 Comments

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