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

PROPOSAL: CFS THEME SONG & VIDEO

VIDEO --> EUROPEAN VACATION:I submit that this should be the new *theme video* for the CFS & ME community:“HEY LOOK KIDS…. THERE’S BIG BEN, THERE’S PARLIAMENT AGAIN."It totally cracks me up! Fauci can play the role of Clark Giswold, w/ all the dying CFSers in the backseat.1-minute: http://youtube.com/watch?v=iAgX6qlJEMc SONG --> By TWISTED SISTER:"we've Got The Right To Choose And  there Ain't No Way We'll Lose It  this Is Our…See More
1 hour ago
Darden Burns posted a blog post

Unconventional Approaches for Improving the Immune System

One of the paramount challenges of living in the twenty-first century is maintaining a healthy immune system. Chronic illness including autoimmune diseases, arthritis, Crohn's disease, Lyme disease, multiple sclerosis, AIDS, autism, Irritable Bowel Syndrome, Parkinson's, Alzheimer's, allergies, environmental sensitivities, mental illness, heart disease, and chronic fatigue and fibromyalgia syndromes are on the rise. The current methods offered by conventional medicine are grossly inadequate in…See More
Monday
CFS Boston posted a blog post

CFSgate = GWSgate = AIDSgate (a 3-in-1 cover-up)

 Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) = Gulf War Syndrome (GWS) = Acquired Immune Deficiency Syndrome (AIDS)* * Not caused by HIV It’s created this way on purpose -->It’s called a cover-up!   www.cfsstraighttalk.blogspot.comSee More
Sunday
Howard Savage replied to Dan Moricoli's discussion Spirituality and Illness
"Very well said / put - that certainly captures some of the key ideas as to why some people are healed through prayer & others seem not to be. Blessings, Howard"
Sunday
monica replied to Dan Moricoli's discussion Spirituality and Illness
"Hi I see it like this. Faith is like an umbrella, it won't stop it raining. It's a tool to help us deal with it.... For me.....why are some people healed and other aren't ? Because for some, lessons are learned through recovery…"
Sunday
Howard Savage replied to Dan Moricoli's discussion Spirituality and Illness
"Pris, Why are some people healed through prayer, while others are not? ... a very good question & one that people/theologians have been asking for 100’s yrs ... I don't have any simple easy answers to that, because I don't…"
Saturday
Kristina Schwende replied to Dan Moricoli's discussion Spirituality and Illness
"Dear Howard, thank you for having the courage to share your story - many wouldn't for fear of offending someone. We all have the choice to accept what we hear/read or to reject it. What you have shared makes total sense to me. I am adopted so I…"
Saturday
Kate replied to Sasha Thornton's discussion What is the simplest HR chest strap monitor? in the group The Exercise Group
"If the unit is functioning it should work. I am assuming that you have the strap positioned so the logo is upright and facing out not in. There are two factors that could cause your issue I think. One is that it has to be sufficiently tight that it…"
Saturday
Polly Bentley replied to BETHANY YAGCI's discussion Best Community
"Halo Suella & Faith.  I 2 did m best on all the voting things - what a nasty way 2 present grants (I've written 2 all the companies suggesting fairer ways 2 give money) all competing & some obviously rigged!  It did at least…"
Saturday
Polly Bentley replied to Kris's discussion What do you do to keep from yourself entertained when STUCK inside?
"Emma has a tiny yard/garden, walls all round,  slabs 2 fit her meditation bed in middle , big gravel all round.  Plants up walls, pots & tubs bought in sales or re-cycled.  Only what can be dropped on2 soil, squashd, jug of water…"
Saturday
Anna Wood replied to Sasha Thornton's discussion How to measure morning resting heart rate? in the group The Exercise Group
"Hi - a quick question - my heart beat varies enormously even when resting. It can be somewhere between 70 and 80 pbm but will vary seemingly randomly between those two. How do I work out what value to use?"
Saturday
Anna Wood replied to Sasha Thornton's discussion What is the simplest HR chest strap monitor? in the group The Exercise Group
"I have a cheap polar one, but really struggle to get it to give me a reading - then if I move it looses the signal again. Anyone know if this is me having an odd shaped chest or a problem with the monitor? I'd like to be able to use it around…"
Saturday
Anna Carla posted a discussion

bed snow angels

just a comment that lying in bed feels so good with my bones are aching from this illness - which is a good bi of the time i'm spending on earth lately,but hot dam, making bed snow angels feels so good...especially with one of those thermal white blankeys...i could lie in bed all day making snow angels, if i didn't have to go to work, which i enjoy when my energy is ok.  saturdays are for making snow angels.and ...anyhowany other cfids snow angel makers out there?See More
Saturday
Anna Carla replied to Dan Moricoli's discussion Caregivers
"im cfids, low nk cell, low t cell, etc., my bofriend has terminal cancer - caring for each other is best we can do...not easy cause we have ltttle to no family around to help in an meaning ful way hey yo to my cfids peeps - how bout those bed snow…"
Saturday
Howard Savage replied to Dan Moricoli's discussion Spirituality and Illness
"I share my journey of recovery from chronic fatigue syndrome & fibromyalgia, in the hope that it maybe relevant & of assistance to some others, while also recognizing it may evoke strong feelings in others ... I want to make it clear that I…"
Saturday
TKno2 posted an event
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Ireland: Dr. Vallings' 4 talks in May, 2013 at Ireland

May 21, 2013 at 11:30pm to May 25, 2013 at 5pm
The Irish ME/CFS Association is pleased to announce the following four talks by Dr. Ros Vallings from New Zealand as part of its ME Awareness Month activities in May. Admission is €5, on the door, to help towards the costs of organising these four meetings, and Dr. Vallings' trip. Limerick - Tuesday May 21 - 11:30 AM Limerick Strand Hotel, Ennis Road, Limerick City http://www.strandhotellimerick.ie/ Tel (for hotel): 061 421 800 Galway -…See More
Friday
 

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.

YogaOnthePath: Severe Physical Limitations

YogaOnthePath: Limited Physicality

A Personal Practice

The The first videos of the series are now available in the new section:

Click the images above to view the first two practice sessions of the video series. Among the comments thus far:

" . . . impressive and inspirational. I thought (the severe limitations) video was particularly useful for me and I practiced right along with the teacher."

"Good job! A successful video, accessible to those with various levels of expertise, and professionally presented. The music is wonderful, Priyanka's voice is divine, and I feel soothed and ready for the rest of the day."

This first section of each video is critical to understanding how yoga affects one's health and well being as well as understanding the underlying concepts of a safe and healthy approach to its practice.

Additional practice sessions are now in production. The first of a series of video practice sessions for those with great physicality is nearing completion.

Join in the discussion on the series as well as the practice of yoga itself.

Over 200 members of this community donated money to support it. In spite of their wonderful generosity, the series is woefully underfunded we hope to make more such videos . . . with you kind support.

To make a contribution to support this and our other services, please click on the lPayPal logo below or send a personal check or money order to: cfsKnowledgeCenter, Post Office Box 1611, Loxahatchee, FL 33470, USA

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.

The theme of this little book is that the way to fight ME is not to fight! The author, Nancy Blake, encourages the reader to claim the right to the rest that is essential for ultimate recovery.  She challenges contemporary public attitudes and medical practices, which she believes are making people with ME worse instead of better.

To buy the Kindle version, or the paperback version, from Amazon.com click HERE.

 

Noted expert, Dr. Kenneth J. Friedman, discusses various aspects of ME/CFS in very clear and direct terms in this unique series of video created by cfsKnowledgeCenter. View all of them in our Video section.  Download them from our Facebook page or from our YouTube page.


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.

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 1611, Loxahatchee, FL 33470, USA.

 

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    Forum

    Best Community 8 Replies

    Started by BETHANY YAGCI in General Discussion. Last reply by Polly Bentley on Saturday.

    dating ME/CFS 130 Replies

    Started by Sarah G in Personal Relationships & ME/CFS. Last reply by Glen Peters Apr 1.

    Spirituality and Illness 166 Replies

    Started by Dan Moricoli in General Discussion. Last reply by Pris Campbell on Sunday.

    Caregivers 51 Replies

    Started by Dan Moricoli in General Discussion. Last reply by Anna Carla on Saturday.

    Thankfulness 98 Replies

    Started by Rachel in General Discussion. Last reply by Amy Oct 16, 2011.

    Blog Posts

    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

    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

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