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

  • Fraser Sinclair
  • DJF
  • suzanne kuennen
  • Charles Lapp
  • Leisa Porteous-Semple
  • Axel Tronrud Andersen
  • Simon houle
  • Rachel K
  • Dee Clark
  • Allan Watkins
  • Phil Morgan
  • Rob Parker

Latest Activity

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Joyce S Goodlatte replied to Dana's discussion 'Really Frustrated' in the group The Exercise Group
Hi Dana, Regarding the high reading:  check your pulse and to see if monitor is functioning correctly.  I have read your posts and empathize.  I too have had all the feelings you describe so well. When I was a few years into the…
15 minutes ago
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My History

I have had ME/CFS for 30 years.  It all started in 1981 after I had graudated college and my migraines suddenly changed in nature: 1) they were more frequent 2) not preceeded by stress 3) did not respond to usual treatment 4) sometimes lasted for days.  My family doctor refered me to a Neurologist who took a head x-ray and did an EEG and then put me on 2 medications: one was a vascular relaxer and the other a constrictor.  In additon, I was given Fiorinol.  Over the next couple of years, I…See More
Blog post by Romona 1 hour ago
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Susan Pierres commented on Cort's blog post 'By the Skin of their Teeth! Spotlight On the NJCFSA and the Enterovirus Foundation in the Chase Contest'
It is most unfortunate that funding for research on enteroviruses has been so limited, but I must file a complaint at this time with the University of Miami pathology department. Aware of the association of same with chronic fatigue syndrome, weeks…
1 hour ago
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Photos posted by Romona 2 hours ago
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Annie commented on Moderator's video
Thanks Dan for your reply, appreciated.  I suppose I would have expected a lot of people with M.E would find the background music difficult; however, I take on board your comments and have noticed the volume isn't so loud in the final…
2 hours ago
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Dan Moricoli commented on Moderator's video
Annie - Thanks for your expression of appreciation for our videos if not the background music therein. I am, of course, completely aware that there are some folks who have a problem tolerating the background music. That said, I am also trying to…
2 hours ago
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Annie commented on Moderator's video
Another great video, thanks.  Again no background music would be really appreciated as hard to process
3 hours ago
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Maria de Jonge replied to Dana's discussion 'Really Frustrated' in the group The Exercise Group
Hi Dana, I do not have such high heart rates spontaneously while resting and even not when I am doing things standing up. What I have seen however is that my heart rate monitor tends to go up, sometimes even towards 230, when skin conductance with…
3 hours ago
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Jody Davison commented on spirit's blog post 'better than nothing'
Four years have now passed since I began the guaifenesin protocol to reverse FM/CFS.  If I could sum up my favorite thing about this past year in a word, I would have to say ‘energy.’  I do not ever remember having this much…
4 hours ago
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Maria de Jonge replied to Maria de Jonge's discussion 'Need for additional guidelines in managing Orthostatic Intolerance?' in the group The Exercise Group
Hi Dana, Thanks for sharing this information, and also the information in the other discussions. Compression garments were mentioned by Rowe in his presentation, but until now I had not heared personal experiences of anyone with ME. It is also…
4 hours ago
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ME/CFS What We Know About Causes

Noted expert on ME/CFS, Dr. Kenneth J. Friedman, discusses what is known about the causes of the disease which afflicts over 28 million people around the world. Kenneth Friedman, Ph.D., is a member of the Board of Directors of the IACFS/ME,…
A video by Moderator was featured 5 hours ago
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ME/CFS What We Know About Causes

Noted expert on ME/CFS, Dr. Kenneth J. Friedman, discusses what is known about the causes of the disease which afflicts over 28 million people around the world. Kenneth Friedman, Ph.D., is a member of the Board of Directors of the IACFS/ME,…
Video posted by Moderator 5 hours ago
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Lawsuit claims Harvey Whittemore embezzled millions of dollars from former business partners

Lawsuit claims Harvey Whittemore embezzled millions of dollars from former business partnersWritten by Martha Bellisle, Jan. 27, 2012The 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, filed in Clark County District Court by lawyers for the Wingfield Nevada…See More
A blog post by Moderator was featured 5 hours ago
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Yvonne's artwork

Portraits are mostly in pastel. The bride is in oil. The wall niche is in acrylic and the birds are in pastel.
Album posted by Yvonne Seiwell yesterday
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Photos posted by Yvonne Seiwell yesterday
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Photos posted by Yvonne Seiwell yesterday
 

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 to the community.

 

In the third in the series of videos Dr. Kenneth J. Friedman, discusses what is known about the causes of the disease which afflicts over 28 million people around the world. View it in the Video Section.

This second in the series of videos featuring the noted physiologist, Kenneth J. Friedman, Ph.D., he discusses the development of biomarkers for ME/CFS. View it in our .

Noted expert, Dr. Kenneth J. Friedman, discusses the physiological aspects of ME/CFS and why it makes those afflicted feel the way they do. View it in our Video section.

This is the first of a series of videos Dr. Friedman has made for cfsKnowledgeCenter and the members of the ME-CFSCommunity.

Kenneth Friedman, Ph.D., is a member of the Board of Directors of the IACFS/ME, Associate Professor of Pharmacology and Physiology, New Jersey Medical School (retired) and a member of the Board of Advisors of cfsKnowledgeCenter.

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 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 1611, Loxahatchee, FL 33470, USA.

 

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    Best Community 1 Reply

    Started by BETHANY YAGCI in General Discussion. Last reply by Beth Hinneberg Oct 31, 2011.

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    dating ME/CFS 89 Replies

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    Dan Moricoli

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    Started by Dan Moricoli in General Discussion. Last reply by Pink Rose Dec 5, 2011.

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    Started by Dan Moricoli in General Discussion. Last reply by Peggy Ware Stahl Sep 27, 2011.

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    Blog Posts

    Moderator

    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

    Dan Moricoli

    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 — 6 Comments

    Moderator

    Civil Court Rules Against Chronic Fatigue Syndrome Researcher

    http://news.sciencemag.org/scienceinsider/2011/12/civil-court-rules-against-chronic.html?ref=hp

     

    Civil Court Rules Against Chronic Fatigue Syndrome Researcher

    by Jon Cohen on 20 December 2011, 4:30 PM

    Embattled researcher Judy Mikovits lost an important round in court yesterday in a civil suit…

    Continue

    Posted by Moderator on December 24, 2011 at 5:30am — 3 Comments

    Cort

    Dr. Klimas Talks! - On the New ME/CFS Research Institute at NSU

    I can promise we will be providing cutting edge research and care, and educating providers like never before. 



    Dr. Nancy Klimas





    Dr. Klimas recently left the University of Miami to head up a new Institute dedicated to researching chronic fatigue syndrome (ME/CFS) and Gulf War Illness at Nova Southeastern University. Dr. Klimas worked at the Univ. of…

    Continue

    Posted by Cort on December 21, 2011 at 4:30pm

    Moderator

    Dr Nancy Klimas on Her Move From the University of Miami

    The following announcement was sent to us by Dr Klimas early this morning:

    Well I can finally let the official cat out of the official bag.  Its not easy starting a new institute!  But my last UM day  was Monday and I am now a member of the NSU faculty, photo ID and everything..  I don't have a  phone or an office yet, but that is coming!  For the time being I will based in the Kendall office (…

    Continue

    Posted by Moderator on December 9, 2011 at 6:58am — 14 Comments

    Moderator

    Chronic Fatigue Syndrome and the CDC: A Long, Tangled Tale

    From: Virology Blog

    Chronic Fatigue Syndrome and the CDC: A Long, Tangled Tale

    23 November…

    Continue

    Posted by Moderator on December 3, 2011 at 7:25am — 1 Comment

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