ME-CFSCommunity.com

About Us

The ME-CFSCommunity is a creation of cfsKnowledgeCenter, Inc., a member supported, Not for Profit, 501 (c) 3 organization.

Our members may come from many countries but we are united in our determination to learn from, and to assist, one another in moving beyond the obstacles imposed upon us by our illness.

Our Membership Spans the Globe


Our members reside in:
Algeria, Antigua and Barbuda, Argentina, Armenia, Australia, Austria, Bahamas, Belgium, Belize, Brazil, Bulgaria, Canada, Cayman Islands, China, Christmas Island, Columbia, Czech Republic, Denmark, Egypt, Finland, France, Germany, GreeceGreenland, Iceland, India, Indonesia, Ireland, Iran, Israel, Italy, Jamaica, Japan, Kenya, Lithuania, Malta, Malaysia, Mexico, Myanmar, Netherlands, New Zealand, Nicaragua, Northern Ireland, Norway, Pakistan, Philippines, Poland, Portugal, Puerto Rico, Romania, Russian Federation, Singapore, Slovakia, South Africa, Spain, Sweden, Switzerland, Taiwan, Thailand, Turkey, Ukraine, United Kingdom, United States and Venezuela.

Members

Latest Activity

CFS Boston posted a blog post

"8-Step Plan to Solve Our World's Catastrophic Healthcare Disaster"

I presented my plan to folks @ the UN last year, and submitted it with my federal testimony too. It is posted here --> http://change.org/p/hiv-negative-aids-2 8 Step Plan to resolve our World’s catastrophic public health disaster:1. Demand research funding parity for CFS/GWS with AIDS.2. Suggest that CFS/GWS/AIDS be researched together by scientists rather than as separate entities.3. Urge the CDC to move their AIDS division under the…See More
Friday
Becky C updated their profile
Sep 7
Becky C replied to Robin F S's discussion Complete Symptom Resolve with new treatment
"Hi everyone, I'm new to this site. I'm wondering if all these test results you are speaking of came from out of pocket testing? I was diagnosed with fibromyalgia over 5 yrs ago and over the last 3 yrs have had me/cfs symptoms. I live…"
Sep 7
R Johnson updated their profile
Sep 6
CFS Boston posted a blog post

"HIV-Negative AIDS: Is it CFS, GWS, or AIDS?" published @ CNN iReport

"Allied NATO Government is hiding millions of infectious NON HIV AIDS cases (like mine) under the "Chronic Fatigue Syndrome (CFS)" ICD-code.- Dr. Lorraine Day on Cptn. Joyce Riley's military show THE POWER HOUR (09/12): "...HIV-Negative AIDS cases falsely reported and treated as CFS cases may be one of the biggest cover-ups we’ve ever seen..."HIV-Negative AIDS: Is it CFS, GWS, or AIDS?  …See More
Sep 6
prioris replied to Sara Froelich's discussion Mother of Teen With ME/CFS
"It seems very odd that your daughter was prescribed Augmentin. You have to be leaving something out of your story. "
Sep 6
Sara Froelich replied to Andy Griggs's discussion Ontario, Canada
"Byron Hyde. MD Ontario Canada ME specialist "
Sep 4
prioris replied to Sara Froelich's discussion Mother of Teen With ME/CFS
"Augmentin is used for bacteria that is resistance to antibiotic. Why was this chosen in the first place ? There are a couple reasons that I know of for bacterial resistance to antibiotics First reason is that microbes develop a biofilm around…"
Sep 3
Sara Froelich replied to Sara Froelich's discussion Mother of Teen With ME/CFS
"Augmentin"
Sep 3
prioris replied to Sara Froelich's discussion Mother of Teen With ME/CFS
"I am the child who got the disease. I've had this disease nearly 55 years (since around 5 years old). It was very severe. I followed an unorthodox path in life unlike chronically ill people. Probably one of the few who never went into poverty.…"
Sep 3
Sara Froelich replied to Sara Froelich's discussion Mother of Teen With ME/CFS
"Anyone in the Seattle area? Phase I:  We began with a terrible allergic reaction to an Antibiotic, never ever sick previously.  Struggles but manages.  Phase II: Then the Epstein-Bar virus hits and she is completely done…"
Sep 2
prioris replied to Carol Mickel's discussion skin or nerve sensitivity
"That is likely parasthesia "
Sep 2
prioris replied to Sara Froelich's discussion Mother of Teen With ME/CFS
"People have used coconut oil to successfully cure their mono relatively quick. Anybody who develops mono should try that. Epstein Barr Virus is not CFS. It is a secondary infection. "
Sep 2
prioris replied to Casey Simers's discussion Brainfog, Anxiety, Ocd or just CFS?
"I would suggest you take GABA when you need it. That will calm a racing mind. Works well. The symptom sneaks up on me. I am more cognizant of it so better managed."
Sep 2
Sara Froelich replied to Sara Froelich's discussion Mother of Teen With ME/CFS
"Thank you for recommending the medical professionals as above.  I so appreciate it.  And thank you for sharing your stories.  Love to your families. Sara Froelich "
Sep 1
Carol Meisner replied to Sara Froelich's discussion Mother of Teen With ME/CFS
"Hi Sara, My son was diagnosed with CFS/ME (Epstein-Barr) at age 18, after a bout with mono at 17. I understand your family being blindsided as we were and continue to be, at times. He was a valedictorian in high school and had just been accepted to…"
Sep 1
 

Welcome . . .

Should you only be interested in learning about severe fatigue, chronic fatigue syndrome (ME/CFS) or fibromyalgia we invite you to visit: www.cfsknowledgecenter.com. It is an open access website.

The ME-CFSCommunity is reserved for those individuals who wish to learn from, and directly communicate with those who are afflicted with ME/CFS. Access to the various sections and features of the ME-CFSCommunity beyond the Main Page is limited to registered members only to protect their privacy. 

Our mission is to help members move beyond the obstacles imposed upon them. We seek to facilitate the free and open exchange of information on ME/CFS, fibromyalgia and related illnesses among those who know the most about the true impact of these afflictions.

Members easily communicate with one another individually, or in groups using FREE Live Video Chat, Instant Text Messaging, Blogs and Forums as well as other features. 

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

You are welcome to join us. You'll find us warm and welcoming. Our community interesting, informative and supporting.

Click on art above or go to: http://www.youtube.com/user/MECFSCommunity

All Profits to ME/CFS Reasearch

YogaOnthePath.com was developed to raise money for ME/CFS research. The website features personal stores of people with debilitating disorders (including Katherine's, far left above, who has ME/CFS) who are recovering through the proper practice of yoga.

The website also features instructional videos for sale by renown healing instructors. The YouTube channel was created to help drive traffic to YogaOnthePath.com. Please take a moment and visit both sites. Click on the photo above to go to the YouTube channel.

Check out InTheNews for daily updates on the latest medical news releases and other news items which may be of particular interest.

 

The entire ground breaking video series is now available online for viewing or downloading in its entirety. The one hour video is also now available in DVD format (shipping worldwide included) for only $19.99. All profits are used to support this website.

To preview the series, click on the image above or click HERE. To receive a DVD copy of the series click on the PayPal logo or link below.

To see previews of the other videos available check the listings below the InTheNews listings.

https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=PCJ8HVT5R9XML

Loving Kindness, A Healing Journey for CFS has won wide acclaim from around the world. This video, also produced by cfsKnowledgeCenter features Tracey O'Hara leading a very different healing modality to address the body, mind and spirit. To view a preview, click HERE.

A DVD of Loving Kindness, or any other of the DVDs shown below, will be sent to each person who donates $25, or more, to support this website. To purchase, click on the photo above or see the Special Offer below.

A Gentle Beginning was produced by cfsKnowledgeCenter specifically for ME/CFS sufferers. It features the nationally known Hatha yoga instructor Priyanka Shanbag in a very gentle, and brief, seated practice session. It can be practiced on the floor or even in bed. View a preview HERE.

Short n Sweet is a complete, yet brief yoga practice session of just 15 minutes for those with limited endurance and physical mobility. It's a perfect starter practice session for those who are not bed bound and want to begin to adopt a gentle yoga practice on their path towards wellness. View a preview HERE.

Easing In is a slightly more challenging yoga practice session of 24 minutes duration. It is designed for those who have the strength and endurance to get about however carefully. Priyanka's soothing voice and affirmations will gently help you further along your path towards wellness. View a preview HERE.

As far too many of us have experienced, often seeing a doctor who is uninformed about ME/CFS is to be diagnosed as depressed and be prescribed heavy medications. This heavy handed misdiagnosis hides a sad truth. A common result, not cause, of our condition is one form or another of depression.

Into the Light is a practice created specifically to help heal those of us who experience some form of depression. To view a brief video of Katherine, a member of our community, talk about Tracey's sessions, click HERE.

Whether you experience any form of depression or not, you're sure to find that this wonderful video will make you feel better and more confident in dealing with life's challenges.

A single copy of a DVD of any of the DVDs will be sent to each person who donates $25, or more, to support this website. No matter where in the world they live.

In appreciation for a donation of $65, or more, any three videos will be sent, postage paid, anywhere in the world.

In appreciation for a gift of $100, or more, all five of the videos will be sent, post paid, anywhere in the world.

Please indicate your choice of videos in the PayPal check "Special Instructions" message when making your donation or send an email with your choices to info@cfsknowledgecenter.com.

To make a donation to support our ME-CFSCommunity, please click on the PayPal logo below or send a personal check or money order to: cfsKnowledgeCenter, Post Office Box 334, West Palm Beach, FL 33402, USA

https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=PCJ8HVT5R9XML

 Instead of asking for donations or grants, maybe, just maybe, the money can be raised from people who only want, or can only afford, to take care of themselves . . . and in the process of taking care of themselves, the profits go to fund research for ME/CFS.

That's the basic idea behind the video series "Yoga On the Path Towards Wellness".

Want to learn more? Go to YogaOnthePath.com. While there, check out the Your Stories section.

Silly idea? Maybe . . . maybe not $1,000,000 or more annually for ME/CFS research seems doable . . .  on paper at least. 

Shouldn't you tell your friends and neighbors to check it out as well?

And by the way, please "Like" the website and videos while you're there. With a little help, this idea just might pay off for us.

What have you learned from your affliction with ME/CFS and/or fibromyalgia that you'd like to share with others?

A new section has been created at Tips for Life w/ ME/CFS. Read 10 tips from Dr Hyman and two others who have made significant progress in alleviating their symptoms from ME/CFS.

Join in with the others to comment or add tips of your own.

 

We've re-organized our Continuing News Stories by giving each of the following articles their own page. You'll find the links to each within the InTheNews section as well as those immediately shown below.

Clear insights and actionable information from widely recognized authorities are the hallmarks of the Expert Assistance series of videos produced specifically for those afflicted with ME/CFS and related illnesses.

The entire Expert Assistance video series is now available AT NO CHARGE.

View them as many times as you like. Tell your friends, and physician, about them. Both patients and medical professionals will find them an excellent, and frequently referenced, source of valuable information.

When viewing the series, we hope you will also take a moment to consider their value to your pocketbook as well as your path towards wellness. We hope that you will respond in kind and support this effort to provide you with Expert Assistance with a contribution to keep the community up and running and able to continue to produce these ground breaking videos for you.

 

Please sign a petition to the Minister of Health of Canada to Fund research for patients with myalgic encephalomyelitis whether a resident of Canada or not. Link to sign or click on flag above.

 

The ME/CFS & FM Patient Survey is a blind (names withheld) research study to gather data from around the world from those afflicted with ME/CFS & FM to further research into the disease. Everyone who is afflicted with ME/CFS or FM is encouraged to take the survey.

Over 450 people have completed the study thus far. Have You? It's important that we assist the research on ME/CFS in every way we can. Please help, it takes just a few minutes of your time.
Learn more about and take the ME/CFS & FM Patient Survey

 

The ME/CFS Case Definition Survey is a standardized guide for clinicians and research scientists for the evaluation of the impact of various specific symptoms upon those afflicted. It is presented in conjunction with the ME/CFS research team at the University of Miami.

Dr Nancy Klimas is delighted that so far over 675 people from around the world have taken the survey. Won't you please join them?


Learn more about and take the Case Definition Survey

 

If you are a current or former resident of the UK who has dealt with the UK medical system, please help us to gather the data needed to work for change. To take the survey please go to the UK Group.

 

Got a question about ME/CFS? Be sure to Ask Dr Hyman.

 

Please take a minute to stop by the Store. We have a few items with which you where you can support the programs and services of the ME-CFSCommunity and make a statement about your own battle with ME/CFS.

 

Then, If you care to grab a cuppa coffee or tea and read a bit, or better yet, meet new friends and chat awhile . . . try our instant messaging Chat Room below or better yet, the Video Chat room where up to six people at a time from anywhere in the world can meet and talk in real time.

 

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.

Won't you please Help Us to Help You?

A click on the PayPal icon below and a willingness to help yourself and others is all it takes. Those who prefer not to make payments online may send a personal check or money order to cfsKnowledgeCenter, Post Office Box 334, West Palm Beach, FL 33402

 

Top of Form

Candid Conversation with Dr. Ian Lipkin and Mindy Kitei

http://api.ning.com:80/files/OsG-NixX39dfbiI6IrSkmSI2m8i0zpwZq6gapur8Efn-Mw2KAnE4LX3oX8O-5JEYfgaqDdkf3cveKME8*ULE2S9XlKv0KnDH/fatiguemeter.jpg

Characterization of Fatigue States in Medicine and Psychiatry by Structured Interview.

http://api.ning.com:80/files/OsG-NixX39eyXEPfqMqKvbp2nYqQx4RNj1tjQimqvRNBdc1-3ToxsoT4dbmhEobELnre56f3bKqDp2f36FK6bb9ff4LNDfZ5/cfs1.jpg

Defining recovery in chronic fatigue syndrome: a critical review.

 

http://api.ning.com:80/files/OsG-NixX39en3wUeJm*-uOq2Q2jE0Mg1SdopnaYs7mBWE6hEO*8qL0dFbvysUHYzk**bA9WHwkanuPjO7qNxjogDG5XgyUze/mastcellactivationdisorderexample.jpg?width=300

Spectrum of mast cell activation disorders.

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    Best Community 8 Replies

    Started by BETHANY YAGCI in General Discussion. Last reply by Polly Bentley May 18, 2013.

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    Blog Posts

    Katherine talks about 15 years with chronic fatigue, her sense of identity and suicide

    This video was made with the express purpose of distributing it as widely as possible around the world via the Internet to reach as many of the millions of ME/CFS sufferers as possible who have yet to be properly diagnosed.

    Katherine has had ME/CFS for over 15 years, for four of those years she was bed ridden. Katherine is very open and frank about her condition and the affect its had on her mind, body and spirit.

    She recently sat before a camera to express her views. Her use…

    Continue

    Posted by Dan Moricoli on October 24, 2013 at 11:30am — 7 Comments

    Yoga & ME/CFS and Yoga & Fibromyalgia - An Update

    .

    The Meditation in Motion Video Series©: "Yoga On the Path Towards Wellness©" with Priyanka Shanbag is now about to be released.

    The series is designed to increase general awareness…

    Continue

    Posted by Dan Moricoli on June 3, 2012 at 9:00am — 110 Comments

    Comment on Mikovits and the Fallout From Fatigue Syndrome Retraction Is Wide in the New York Times

    From The New York Times

    .

    Fallout From Fatigue Syndrome Retraction Is Wide

    By DAVID TULLER

          

    When scientists reported in 2009 that a little-known mouse retrovirus was present in a large number of people with chronic fatigue syndrome, suggesting a possible cause of the condition, the news made international…

    Continue

    Posted by Moderator on February 7, 2012 at 5:00am — 2 Comments

    Lawsuit claims Harvey Whittemore embezzled millions of dollars from former business partners

    Lawsuit claims Harvey Whittemore embezzled millions of dollars from former business partners

    Written by Martha Bellisle, Jan. 27, 2012

    The former business partners of Harvey Whittemore, a well-known Nevada lobbyist, land-developer, businessman and lawyer, filed a civil lawsuit Friday claiming he embezzled millions of dollars from the Wingfield company they ran together and misappropriated corporate funds and assets.

    The suit,…

    Continue

    Posted by Moderator on January 28, 2012 at 10:30am — 2 Comments

    On a Personal Note: Are Things Changing?

    Are Things Changing?

    When asked by a new acquaintance this week "How are you?", I replied, to keep things simple, "On the road to recovery from chronic fatigue…

    Continue

    Posted by Dan Moricoli on January 7, 2012 at 10:00am — 13 Comments

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