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

donella loo updated their profile
4 hours ago
Better Soon replied to Annie's discussion Please can someone advise on testing morning heart rate, mine doesn't stay still in the group The Exercise Group
"Maria de Jonge on October 6, 2011 said - "
yesterday
gaston gingues replied to HouseSparrow's discussion Can VO2 test cause relapse? in the group The Exercise Group
"Hope it helps, let me know :) gg"
yesterday
Better Soon replied to HouseSparrow's discussion Can VO2 test cause relapse? in the group The Exercise Group
"Thank-you :) "
yesterday
gaston gingues replied to HouseSparrow's discussion Can VO2 test cause relapse? in the group The Exercise Group
Tuesday
Better Soon replied to HouseSparrow's discussion Can VO2 test cause relapse? in the group The Exercise Group
"Me too Gaston! In the meantime I've been reading posts about estimating one's AT and wonder if you can clarify a few things. To get my estimated AT (if I don't go for testing)  -  I'm to first find my MRHR for 2 wks.…"
Tuesday
gaston gingues replied to HouseSparrow's discussion Can VO2 test cause relapse? in the group The Exercise Group
"Hope she gets back to you!"
Tuesday
Better Soon replied to HouseSparrow's discussion Can VO2 test cause relapse? in the group The Exercise Group
"Thanks! I emailed her again today (same address) and hopefully I'll get a response."
Tuesday
gaston gingues replied to HouseSparrow's discussion Can VO2 test cause relapse? in the group The Exercise Group
"keller@ithaca.edu Is current, she emailed me back today. FYI"
Monday
Better Soon replied to HouseSparrow's discussion Can VO2 test cause relapse? in the group The Exercise Group
"I too would like contact info. As long as the testing would be stopped when the AT is reached, I'd rather use an AT based on the actual test than the formula. Thanks ! "
Sunday
Better Soon replied to Shelli Proffitt Howells's discussion Beginner's Questions in the group The Exercise Group
"I'm new to this site and am reading through the forum. From the details of your first post, it looks like our vitals are similar. I'm 57 and have had POTS 3 yrs. I'm wondering how you are doing now? Did the pacing help you? "
Sunday
Better Soon replied to Paula Last's discussion Wearable technology for people ME/CFS: request for your input in the group The Exercise Group
"I have not had the VO2 testing done as I don't know where a lab in Ontario offers it. I did though buy the MIO alpha HR watch and am learning ahead of time when my alarm (MRHR +30%) is about to to go off by a distinct change in cognitive and…"
Sunday
Rita DiRado posted a discussion

Post-exertion relapse

The terms used keep changing, but what I want to discuss is when I have several bad days after I had been doing better and had gotten more active. I try not to overdo it, but I never know when I'm overdoing it and when I'm under-doing it. Both can leave me feeling worse. I read about "listening to your body", but it often gives bad info. I'd been exercising twice a week with a personal trainer, increasing weight and reps slowly, and paying attention to pain and overexertion. There was a little…See More
Sunday
D Fizzard updated their profile
Saturday
Susanne Thorn updated their profile
May 23
amanda Agee posted a discussion

misdiagnosed question

I was diagnosed with Fibromyalgia about 4 years ago and later symptoms got worse after  I got real sick,and was then diagnosed with CFS as well as Fibromyalgia. Now I am getting more symptoms and worse than ever. So now my Dr.wants a brain scan to see if I might have MS instead. Now I am so confused. I have spent that past 3/4 years thinking I had these other illnesses, researching, studying, learning all I can about them. I gave out print outs to friends and family to get them to understand…See More
May 20
 

Welcome . . .

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. 

To learn about severe fatigue, ME/CFS (chronic fatigue syndrome) or fibromyalgia visit: www.cfsknowledgecenter.com, an open access website.

The mission of the ME-CFSCommunity is to help members move beyond the challenges they face. 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.

Membership is FREE and PRIVATE. Our member roster 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.

The entire ground breaking video series Exercise & ME/CFS is now available online for viewing or downloading in its entirety. Click on the image above for immediate viewing or HERE.

The one hour video is also 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 the PayPal link below.

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

The Seated Yoga Series created specifically for those with ME/CFS and fibromyalgia is now available online for viewing or downloading in its entirety. Click on the image above for immediate viewing or HERE.

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. To order a set of DVDs, click on one of the PayPal logos or links on this page. You will be able to indicate the video gift (s) you want prior to completing the donation.

Both the Reclining Yoga and the Wheelchair Yoga series are available for immediate viewing by click on their respective images above or at either of these links: Reclining Yoga for ME/CFS    Wheelchair Yoga for ME/CFS

For a donation of just $20, or more as you can spare, you will receive a DVD (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. You will be able to indicate the video gift (s) you want prior to completing the donation.

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 $20, 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.

Whether you experience any form of depression or not, you're sure to find that Awaken Your Aliveness will make you feel better and more confident in dealing with life's challenges. View a preview HERE.

To view a brief video of Katherine, a member of our community, talk about Tracey's sessions, click HERE.

A single copy of a DVD of any of the DVDs will be sent to each person who donates $20, or more, to support this website. No matter where in the world they live.

In appreciation for a donation of $60, 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.

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

 

 

All Profits to ME/CFS Research & Services

An entire series of healing yoga videos has been created specifically for those with ME/CFS and fibromyalgia.

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.

YogaOnthePath.com was developed by cfsKnowledgeCenter to raise money for ME/CFS research and in-home services. The website features personal stores of people with ME/CFS and fibromyalgia as well as other debilitating disorders and are advancing their recovery through the proper practice of yoga.

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. 

 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…

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    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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