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

CFS Boston posted a blog post

GERMAN STUDY FINDS LYME IN MOSQUITOES

 "Researchers have found the pathogens that cause Lyme disease in mosquitoes for the first time in central Europe. Lyme disease or Lyme borreliosis is a vector-borne infectious disease caused by spirochetes of the Borrelia burgdorferi sensu lato complex. In the present study, adult as well as larval mosquitoes were collected at 42 different geographical locations throughout Germany. This is the first study to analyze German mosquitoes for the presence of Borrelia spp. The team found Borrelia…See More
Jul 22
Mark McConchie replied to Wendy B's discussion Has research confirmed that CFS is a mitochondrial illness? or is it still just hypothesized?
"I've been doing some research lately into brain causation, but I still think there is a definite link to mitochondrial activity and/or dysfunction. In particular, I just learned recently about specific mitochondrial chromosones which regulate…"
Jul 20
David Jameson replied to Wendy B's discussion Has research confirmed that CFS is a mitochondrial illness? or is it still just hypothesized?
"I don't think the problem is in the mitochondria themselves. That wouldn't explain the post-exertional fatigue experienced in CFS. If there was a mitochondria problem it would result in fatigue all the time, not just after exertion. From…"
Jul 20
David Jameson updated their profile
Jul 20
CFS Boston posted a blog post

"More Scientists Question Whether HIV causes AIDS" published @ Principia Scientific.

 "Consensus medicine tells us that HIV causes AIDS. However, the consensus is invariably proved incorrect in the ever-advancing world of science.  Peter Duesberg, professor of molecular and cell biology and one of the first scientists to isolate the cancer gene, says the consensus about AIDS is certainly wrong; as more evidence is streaming forth showing that HIV is a harmless passenger virus."  …See More
Jul 5
Simon Lawrence posted a discussion

BASIS BY ELYSIUM

Has anybody tried taking Basis? it ticks some of the boxes for treating ME-CFS and may be a useful addition to our supplement regimen. As always I am cautious about taking anything new as it can lead to the worsening of symptoms.See More
Jul 4
Diane posted a blog post

What can I expect as I age?

Hi Nancy.   I just found this great website/community.  I live in NE Ohio, and with all the Cleveland Clinic and Case Western Reserve Med School/Hospital, it is a desert here relative to ME/CFS/SEID.I also developed SEID (I LOVE this new name - it doesn't make us sound like tired, lazy do-nothings) at age 44.  I am now 61 and 10 months.   What can I expect from SEID as I continue to 73 (God willing) as you have?   I am concerned about my physical abilities particularly because my 72-yr-old…See More
Jul 3
Wendy B replied to Wendy B's discussion Has research confirmed that CFS is a mitochondrial illness? or is it still just hypothesized?
"Interesting. thanks for the reply. Hope you are feeling as well as possible. :)"
Jul 1
Jo replied to Wendy B's discussion Has research confirmed that CFS is a mitochondrial illness? or is it still just hypothesized?
"Ps. Also, dr Myhill tests blood I think to determine mito damage - way less invasive sounding than a biopsy. Yikes!"
Jul 1
Jo replied to Wendy B's discussion Has research confirmed that CFS is a mitochondrial illness? or is it still just hypothesized?
"Regardless of cause, Her treatment protocalls are very similar to the approach many diff forward thinking, perceptive doctors are starting to take when treating CFS (many of whom never talk about mitochondrial damage). They all Start with…"
Jul 1
Donna Kuhn updated their profile
Jul 1
Jo replied to Wendy B's discussion Has research confirmed that CFS is a mitochondrial illness? or is it still just hypothesized?
"She doesn't propose that it is caused primarily by mito deficiency but says she finds it is present in CFS and that CFS is a symptom of mito deficiency that may occur for many diff reasons such as : genetics, direct damage by viral or toxic…"
Jul 1
Jo replied to Wendy B's discussion Has research confirmed that CFS is a mitochondrial illness? or is it still just hypothesized?
"Dr Sarah Myhill has done her own research and had good results with patients. She gives a good explanation of why she feels it is a mito deficiency. On her webpage, You can download a 100 page file on her research and treatment protocols."
Jul 1
Jodi Anderson updated their profile
Jul 1
Jodi Anderson posted photos
Jul 1
Jodi Anderson posted photos
Jul 1
 

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.

 

QUESTION: How can a $10 investment pay off in millions for desperately needed ME/CFS research.

ANSWER: Get a large segment of the general public to buy something they want, at a very low cost, and put every penny of profit into ME/CFS research.

EXPLANATION: The C.D.C. and other experts tells us there are over 145 million adults in the U.S. alone who suffer with an addiction, 107 million more with a chronic disease, 88 million who are obese, 40 million who are co-dependent, 34 million with osteoarthritis, 30 million who suffer with anxiety, 25 million with diabetes, 24 million with PTSD, 15 million who suffer with depression as well as 1.3 million with ME/CFS.

Take just a few minutes to watch the videos at Personal Stories and you’ll see and hear for yourself that these challenges can be greatly reduced, if not eliminated, with proper guidance.

If only 0.5 of 1% of the people with the challenges listed above spend just $3.98 to begin to significantly improve their health and well being, $6,827,936 will have been raised for ME/CFS research.

In fact, everyone has more than one personal challenge which can be eased or eliminated entirely through yoga which is why multiple purchases are the norm and significantly more than $6 million dollars for ME/CFS research is likely to be generated. This is the whole idea behind the innovative ME/CFS research fundraising website www.YogaOnthePath.com.

Three things you can do to help us help you:   

  1. Check out our ME/CFS research fundraising website www.YogaOnthePath.com yourself. Do it now, you’ll be both surprised by the stories and really pleased if you try at least one of the sessions yourself. 
  2. Encourage your family and friends to take a few minutes to watch the videos at Personal Stories and ask them to Like them for Facebook while they are at it.
  3. Help us to raise the $25,000 we need to initiate a full scale marketing campaign to our target markets to turn the small stream of money already started in a river to generate the $6 million, or more, for ME/CFS research.

If each of the 5,213 members of the ME-CFSCommunity donate just $5 today, we’ll reach the $25,000 goal in a heartbeat. The fact is, however, that not everyone can or will. So, we are asking you to donate $10, or more as you can afford, and please, do it now, simply click on the PayPal logo or link below.

$10 to generate $6 million, or more, for ME/CFS research?  Now, that’s a good investment!  

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

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 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

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

(Firefox & Mozilla browsers may encounter problems linking)

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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