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

Dan Moricoli posted a blog post

What if Age (and infirmities?) Is Nothing but a Mind-Set?

Editor's Note: This is an extraordinary article that speaks of the power of the mind on physical illnesses and disorders far beyond aging. I credit my own spectacular recovery from the depths of ME/CFS as much to my mind set as to the entire combination of all the other steps I have taken to increase my body's ability to heal itself. This includes carefully controlled exercise, sleep improvement, proper diet and pacing. Do your self a favor and read the entire article. Add your own comments…See More
15 hours ago
Darden Burns posted a blog post

Healing the Wired Tired Continnum - The Story of My Recovery from Chronic Fatigue Syndrome

Living with Chronic Fatigue Syndrome for over 30 years I often alternated between periods of agitation and extreme fatigue - what I call the "wired tired" continuum. This precarious existence felt like I was driving a car that was slightly out of control. It required every scrap of patience, intelligence and perseverance to navigate and ultimately to discover the therapies that reversed this condition. My experience of recovery was a gradual moving together of these extreme states - a slow…See More
Sunday
CFS Boston posted a blog post

*** NEW DOCUMENTARY *** BOUGHT MOVIE

"Bought Movie is about bringing to light information about the various ways your health care is being traded on the floors of Wall Street brokers." www.boughtmovie.com      Bought Movie | Jeff Hays FilmBought Movie is about bringing to light information about the various ways your health care is being traded on the floors of Wall Street brokers.…See More
Sunday
Sheila McDonald updated their profile
Saturday
CFS Boston posted a blog post

AWARD-WINNING DOCUMENTARY: "UNDER THE EIGHTBALL"

"In 1951 at Ft Detrick, Maryland, construction crews built a hollow metal sphere four stories high. Inside germ weapons were to be exploded, creating infectious aerosol mists for testing on animals  ...and people.  Employees called it the eight ball."     Under The Eightball -- hello... (trailer)3 minutes | A first hand account of one family's struggle with Lyme disease... And the subsequent conspiracy to keep it hidden…See More
Oct 16
Sleeping Beauty replied to Sleeping Beauty's discussion Looking for a good GP at least empathetic to FM in the group All Canada Group
"Ugh. No replies! I am still looking. I got a list from one of the FM associations but they are all rheumatologists who take forever to get an appointment with.. Doesn't anyone on here have a doctor that is helping them at least manage their…"
Oct 7
Jenni Ghill posted a blog post

How time can fly...

It has been quite some time since I posted on this, so time for an update. I am now a grandmother of three, finally being treated for RA, by a consultant physician.  I stiii raise awareness on several levels and am looking into more avenues for this, one way I am doing so is to call myself an Awareness ambassador.  Not just for Fibromyalgia/ME but for other things as well.  One of those that will become a larger focus is Down Syndrome, with a newborn grandchild being diagnosed.  In many ways it…See More
Oct 6
Lynda Haight updated their profile
Oct 6
Carm Howi updated their profile
Oct 5
Kathleen Manganaro replied to Kathleen Manganaro's discussion My Creative Self in the group Rising Up
"Great article., Paula "
Oct 5
CFS Boston posted a blog post
Oct 5
Janika Cleghorn added a discussion to the group The Exercise Group
Thumbnail

No POTS but I'm going '"potty" trying to get started (with a high MRHR)

Hi, I have been using a heart rate monitor for 3 weeks and am struggling to know what to do, if I am doing the right things...I don't think I have POTS but my average morning resting heart rate is 76 and as soon as I stand up it goes into the 90s unless I am moving very slowly, (when it's mid to high 80s), and then with only light exertion, it rises quickly into the 100s. If I keep on going it will keep rising and, even with rests, (when my HR monitor beeps at 105), to bring my HR down to the…See More
Oct 1
Janika Cleghorn replied to Shelli Proffitt Howells's discussion Beginner's Questions in the group The Exercise Group
"Hi, I have been using  hreat rate moitor for 3 weeks and am struggling to know what to do, I don't think I have POTS but my average morning resting heart rate is 76 and as soon as I stand up it goes into the 90s unless I am moving very…"
Oct 1
Janika Cleghorn updated their profile
Sep 30
Shelly Burlison updated their profile
Sep 29
Kathryn Herman updated their profile
Sep 29
 

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.

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.

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

 

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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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