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.

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Latest Activity

Linda Cassells posted a blog post

Managing ME CFS: A Guide for Young People

We are the publishers of a new book for young people with ME / Chronic Fatigue Syndrome by Dr Rosamund Vallings MNZM, MB BS. Her book Chronic Fatigue Syndrome M.E.: Symptoms, Diagnosis, Management has helped thousands of people throughout the world. Details about the book are available from our website: http://calicopublishing.co.nz/book/managing-me-cfs/and we can deliver books throughout the US for a nominal fee. Please help to…See More
yesterday
Jodie Claude updated their profile
Aug 25
Darden Burns posted a blog post

Serotonin - An Important Part of the Fibromyalgia Picture

Serotonin, also known as 5-hydroxytryptamine (5-HT) is an important chemical neurotransmitter found in the human body. Serotonin is manufactured in the brain and the intestines. The majority of the body's serotonin (90%) is found in the gastrointestinal tract where it regulates intestinal movements that stimulate gut motility. The remainder is found in the central nervous system and blood platelets where it plays a role in the formation of blood clots through vasoconstriction. It is synthesized…See More
Aug 25
notjustfatigue updated their profile
Aug 23
Cheryl Boese replied to Kimberly Lehman's discussion Yoga DVDs
"I use "yoga for healing with Sarah Bates" and " yoga: gentle practice with Zyrka Landwijt. " Both have options depending on how you feel. The Sarah Bates DVD has lying, chair, and standing options. The one with Zyrka has 6…"
Aug 23
Cheryl Boese replied to Better Soon's discussion Any advice on how to work with my new MIO watch regarding AT?
"I probably also have more questions than answers, but I will tell you what I know. I also have the Mio Alpha , as well as the Charge HR. I recently did the CPET Stevens Protocol at Workwell Foundation, to find out my actual AT as well as to get…"
Aug 23
Eddy Keuninckx updated their profile
Aug 23
Profile IconSheryl Ann, Eddy Keuninckx, Elizabeth McGougan and 1 more were featured
Aug 23
Manda posted a discussion

Specialist in Northern Florida? Tallahassee or Panama City?

Does anyone know of specialists in this area of Florida? I just moved here but I have had some bad luck with doctors in the past in California. I had some that refused to see me, some that refused to monitor my illness in any way and I have had those that are willing but they really don't understand it or know much about it and so just want to throw drugs at me.I did have 5 years of specialists who diagnosed and confirmed the diagnosis as well as taking me through many different drugs and…See More
Aug 21
CFS Boston posted a blog post

CNN VIDEO: NON HIV AIDS CONFIRMED IN ASIA

"Today in breaking news, and adding credit to their story, the NIH (National Health Institute) of America confirmed the existence in Asia of non HIV AIDS, which caused AIDS-like symptoms, but did not give the conventional positive HIV protein test.Watch CNN video:..."Read more:…See More
Aug 14
CFS Boston posted a blog post

**** BOSTON AREA **** FMS & GULF WAR RESEARCH STUDY (@ MGH) ****

 Having participated, I can report that this study requires two trips to Massachusetts General Hospital. First visit was ~1hour (questionnaires/bloodwork), andSecond visit was ~6 hours (blood, dual MRI/PetScan, more questionnaires).=======================================================**** BOSTON AREA RESEARCH STUDY (@ MGH) **** "In this study, we are looking at special cells in the brain of patients with chronic (long lasting) pain. These special cells are called "microglia" and are present…See More
Aug 6
Suella Postles replied to Janika Cleghorn's discussion No POTS but I'm going '"potty" trying to get started (with a high MRHR) in the group The Exercise Group
"Jan, You might want to have a look at this article written by someone in your position. http://www.cfidsselfhelp.org/library/exercising-safely-using-nano-steps Should you find it useful, you can search free for all the articles on exercise or…"
Aug 4
Suella Postles replied to Janika Cleghorn's discussion No POTS but I'm going '"potty" trying to get started (with a high MRHR) in the group The Exercise Group
"Hi Jan, I'm told that our heart rate is likely to spike when we stand up. It is worth remembering that  if we simply stand it is likely to keep the pulse rate higher as the heart is having to work harder than when we are walking. I have a…"
Aug 4
CFS Boston posted a blog post

"The AIDS-like Disease Seldom Mentioned" published @ RealNews24.

 http://realnews24.com/the-aids-like-disease-seldom-mentioned/ I hope that you’ll spread-the-news too (e.g., post on Facebook/Twitter, write a story, add to eNewsletter)   In the fight for humanity, kSee More
Jul 26
Cord Keller replied to Rachel's discussion CFS/ME Sleep Issues
"Interesting...I've found Lunesta and clonapin to work as well. Found them as a process of elimination.  I try not to use one or the other for more than a few days in a row and often reduce the dose to halfs and quarters. When I don't…"
Jul 19
Cord Keller replied to Rachel's discussion CFS/ME Sleep Issues
" "
Jul 19
 

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.

Tracey O’Hara looks like an angel and, in fact, she is.

Learn more about Tracey, and the extraordinary steps she has taken for those of us with ME/CFS, below.

 

Tracey O'Hara doesn’t have ME/CFS but she does have several clients who do and she is sympathetic, very sympathetic, and caring, towards those who are affected by the disease. So, how does her caring take form?

Tracey has donated weeks upon weeks of her time to help raise money to not only support our ME-CFSCommunity but also for ME/CFS research.

And now, she has gone even further . . .

Tracey has come forward with her own story of recovery from a life not worth living. She has done so in order to further stimulate ME/CFS research fundraising as well as increase public awareness of the tremendous benefits of a proper yoga practice. Gentle, healing, restorative yoga for those not only with chronic disorders like ME/CFS but for those with addictions, obesity, aging and a host of other physical and behavioral challenges.

You can watch and listen to Tracey tell her story at YogaOnthePath.com or click on either photo above.

Should you care to, you may send an email thanking Tracey for her courage as well as her efforts on our behalf to tracey@yogaonthepath.com.

Should you care to do just a little more to help us help you . . . forward this email to a friend and make a donation of just $5, or more as you can afford by clicking on the logo or link below.

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

A donation, in any amount. to support our ME-CFSCommunity is deeply appreciated.

If every member of our ME-CFSCommunity were to donate just $5 once a year our annual budget needs would be met. Unfortunately, even a $5 donation is a burden for so many of us.

If you can afford $5, or more, won't you please click on the Donate button or link below.

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

If you'd like to receive a special acknowledgement gift for your support of our website, please check out the following gifts that are available to you for your support of our efforts to serve those from around the world who are affected by ME/CFS, fibromyaliga and other neuroimmune disorders.

"The series of exercise videos have been transformational.  Prior to viewing these videos, my attempts to exercise were basically a disaster. 

I would try to do a little strength training and I would inevitably trigger a crash.  But learning about VO2 max testing and how to modify my exercises to keep my heart rate within my safe zone have been game changers for me! 

Since starting on this exercise protocol I have lost 25 pounds, and am now stronger than many of my non-cfs friends!!! 

Paula D., Washington D.C.

This ground breaking video series Exercise & ME/CFS is now available online for immediate viewing for only $3.98 or it may be viewed AND downloaded in its entirety for only $9.98.

To preview, or for immediate downloading, click on the image above or HERE.

The one hour video is also available in DVD format (shipping worldwide included) for a donation of only $19.98. All profits are used to support this website.

To receive a DVD copy of Exercise & ME/CFS click on the Donate logo or link below.

https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=HHQ6GQVTAHGVU

(Firefox & Mozilla browsers may encounter problems linking)

The Seated Yoga Series, created specifically for those with ME/CFS and fibromyalgia, is now available online for viewing for as little as $1.98 or the entire series may be downloaded in its entirety.

To preview this healing series, click on the image above or HERE.

A DVD of the entire set of 7 sessions will be sent to you for a donation of just $40, or more as you can spare, (with FREE worldwide shipping).

To order a DVD of the entire series, click on Donate logo or link below. 

https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=9XD8M43SJV9M6

Both the Reclining Yoga and the Wheelchair Yoga series are available for immediate viewing for as little as $1.98.

For a Free preview either series, click on their respective images above or at either of these links: Reclining Yoga for ME/CFS    Wheelchair Yoga for ME/CFS

You can have a DVD of either series for a donation of just $30, or more as you can spare, (with FREE WORLDWIDE SHIPPING).

To order a DVD copy of the Reclining Yoga for ME/CFS click the Donation logo or link below. 

https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=7CZVUMEA95QS6

To order a DVD copy of the Wheelchair Yoga for ME/CFS click the Donation logo or link below. 

https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=DP5TASBZVVGEE

Loving Kindness, A Healing Journey for CFS has won wide acclaim from around the world. This video features Tracey O'Hara leading a very different healing yoga modality to address the body, mind and spirit.

To view a Free preview, or view the video in its entirety for on $3.98, click HERE.

A DVD of Loving Kindness will be sent to each person who donates $19.98, or more, to support this website.

To order a DVD copy of Loving Kindness, please click the Donate button or link immediately below.

https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=S9RLA75YM7ZQW

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.

To view a Free preview, or view the video in its entirety for only $2.98 click the image above or HERE.

A DVD of A Gentle Beginning will be sent to each person, postage included, who donates $19.98, or more, to support this website.

To order a DVD copy of A Gentle Beginning, please click the Donate button or link immediately below.

https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=4G6B9HCJCC7BE

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.

To view a Free preview, or to view the video in its entirety for only $2.98 click HERE.

A DVD of Short n Sweet will be sent to each person, postage included, who donates $19.98, or more, to support this website.

To order a DVD copy of Short n Sweet, please click the Donate button or link immediately below.

https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=WLDAQAZ4LK392

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.

To view a Free preview, or to view the video in its entirety, click the image above or HERE.

A DVD of Easing In will be sent to each person, postage include, who donates $19.98, or more, to support this website.

To order a DVD copy of Easing In, please click the Donate button or link immediately below.

https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=B8S2NB7QFMKYU

Awaken Your Aliveness is a video which can do exactly what the title implies, make you feel fully alive if practiced within your own physical capabilities.

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 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. 

To view a Free preview, or view the video in its entirety for only $3.98 click the image above or HERE.

A DVD of Awaken Your Aliveness will be sent to each person, postage included, who donates $19.98, or more, in support of this website.

To order a DVD copy of Awaken Your Aliveness please click the Donate button or link immediately below.

https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=MWDC66GRVRXTQ

Katherine has suffered with Chronic Fatigue Syndrome (ME/CFS) for over 15 years, For many of those years she was confined to bed or otherwise unable to leave her home.

Take just a couple of minutes to see what this remarkable woman has to say about her time with Tracey O'Hara.


To learn more about the gentle, healing power of yoga to help you on your path towards wellness, go to: www.YogaOnthePath.com.

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. 

Please, go to YogaOnthePath.com, check it out and ten 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…

    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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