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

Deborah Drapeau posted a photo
yesterday
Deborah Drapeau updated their profile
yesterday
CFS Boston posted a blog post
Wednesday
CFS Boston posted a blog post

"Gulf War Syndrome is back"

  "Immediately after the first Gulf War in 1991, this author was an early and outspoken defender of US and allied military veterans returning home with a mysterious and often-fatal disease. Immediately, governments called the victims “crazy”, “financial scam artists”, “cowards” or “hypochondriacs”. Government-funded medical facilities echoed the Clinton administration’s official line that no such disease existed, especially not something being called ‘Gulf War Syndrome’.   Doctors and…See More
Jan 20
Paula Hayward replied to Paula Hayward's discussion Welcome, Help Us Get To Know You in the group Rising Up
"so glad you are here Terrie,.  My recent POTS diagnosis directed me on a course to better treatment. I see an immunologist and cardiologist. My care is more focused now and much less " guess work." Please keep sharing and make use of…"
Jan 19
Terrie Moody replied to Paula Hayward's discussion Welcome, Help Us Get To Know You in the group Rising Up
"Hello Everyone.  I have been diagnosed with CFS, fibromalygia, dysautonomia, and various other conditions.  I have spent the last 15 years learning to cope with these conditions.  There were years that were absolutely terrible and…"
Jan 19
CFS Boston posted a blog post

Why isn’t CFS/ME a reportable disease overseen by our public health department?

   Why are ME and CFS (i.e., the same exact disorder) suspiciously categorized as two separate illnesses on a worldwide level (i.e., by ICD codes)? Doesn’t anyone else but me, very clearly see, the catastrophic cover-up going on here?  Why are we not reading about Non-HIV AIDS cases (and/or the AIDS-like nature of CFS) on the front pages of every newspaper in the world? And if CFS/ME is Non-HIV AIDS, then, depending on who you believe, there are anywhere between 500,000 – 14,000,000 Americans…See More
Jan 16
marthe bacon updated their profile
Jan 13
Dorothy updated their profile
Jan 12
Paula Hayward commented on Dan Moricoli's blog post Dr. Nancy Klimas' Patient Conference, Feb. 7th
"Registration opens  Jan 16, below is more detailed info. http://www.nova.edu/nim/2015-patient-conference/index.html"
Jan 12
Suella Postles commented on Dimitria Green's blog post I don't know where to start...
"Dimitria, How awful for you.You sound like that is a dreadful situation to be in right now. This illness is real with physical symptoms and mental ramifications that are devastating. Pretending we are not sick leads to attempted activities that can…"
Jan 12
Katie Clark replied to Sara Froelich's discussion Mother of Teen With ME/CFS
"Hello- my illness started the exact same way. I also tested as having Cytomeglyovirus as well. I was directed by an infectious Disease Dr to go on the Standford university website. I researched that and had my rheumatologist also read it. I then…"
Jan 11
Marilyn Van Houten posted a photo
Jan 11
K Henson commented on Dan Moricoli's blog post Dr. Nancy Klimas' Patient Conference, Feb. 7th
"Terrific! "
Jan 11
Dorothy commented on Pris Campbell's group ME CFS residents of SE Florida
"Hi to all. I am in Hollywood, Florida. I am 61, and became disabled with FMS, Chronic Fatigue Syndrome & insomnia at the age of 35, and had to leave my executive level public relations job in Nj, and the family moved to FL to be close to…"
Jan 11
Rhonda L S Ovist commented on Dimitria Green's blog post I don't know where to start...
"Yes!"
Jan 11
 

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.

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

Dr. Nancy Klimas is hosting a Patient Conference, February 7, 2015 at the Institute for Neuro Immune Medicine in Ft Lauderdale, FL. This year's theme is Cellular Energy and its Impact on Health. All are invited. For more information and registration details click HERE or go to Blog section.

New York Times review of Laura Hillenbrand's new book "Unbroken" in our Blog section where you can add your own comments

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

All Profits to ME/CFS Research & Services

YogaOnthePath.com was developed to raise money for ME/CFS research and in-home services. The website features personal stores of people with debilitating disorders (including Katherine's, far left above, who has ME/CFS) who are advancing their recovery 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.

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

The transition from being housebound, often bed bound, to a very near normal life has been a remarkable journey. Dr. Nancy Klimas' disciplined exercise program based upon VO2 Max testing provided the first great physical catalyst for improvement.

An equally disciplined and careful approach to gentle yoga provided the second to bring mind and spirit in balance with the physical gains. 

A new series of videos is now available to help you on your path towards wellness. These new videos may are available for preview at YogaOnthePath.com where they may be Rented for unlimited viewing over a 24 hour period or Downloaded to your computer or mobile device for unlimited viewing.

For a donation of just $40, or more as you can spare, you will receive DVDs (with FREE worldwide shipping) of the entire set of 7 videos from the Seated Yoga Series.

For a donation of just $20, or more as you can spare, you will receive DVDs (with FREE WORLDWIDE SHIPPING) of your choice of either the two video Reclining Yoga Series or the entire three video Wheelchair Yoga Series.

To make a donation in support of 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

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.

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 800 people from around the world have taken the survey. Won't you please join them?


Learn more about and take the Case Definition Survey

 

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

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

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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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