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

Jean-Baptiste W updated their profile
Aug 8
Leanne Edwards posted a photo
Aug 7
Kate posted discussions
Aug 7
carla replied to Patti Jackson's discussion Shingles
"OMGoodness Patti, what a cruel scourge you have to deal with, I don't know how you cope. I had RHS on my rt side in Aug 2014. I had blisters on & in my ear, down my eustachion tube and into my throat. It was awful, the pain unreal. I had…"
Jul 23
Alyson Knop replied to Paul's discussion Reaching out- Don't know where to start.
"Hi--I'm new to this site, too, and don't have much energy for a long post right now. (I wrote a long one yesterday to the General Disc. Board.) I am so lucky that I've had a diagnosable (and crippling) disease for most of my life, so…"
Jul 21
Alyson Knop replied to Alyson Knop's discussion New to ME-CFS Community--wondering if I have ME-CFS
"I meant to say that the fatigue didn't coincide with the onset of RA. I'd had a very severe case of the disease for over 15 years before I started having bad fatigue."
Jul 20
Alyson Knop posted a discussion

New to ME-CFS Community--wondering if I have ME-CFS

I'm hoping some of you who are experienced with ME-CFS can give me some guidance and advice. I'm not sure if I have ME-CFS but have some friends who know more about the illness (or constellation of illnesses?) who believe I do. I've had debilitating chronic fatigue for over 20 years (unable to work due to lack of energy and cognitive difficulties since that time) but only recently began to wonder if CFS was my problem. I've had severe rheumatoid arthritis since age 8, and the beginning of my…See More
Jul 20
Sondra Lane updated their profile
Jul 19
Sondra Lane posted photos
Jul 19
Lisa replied to Paul's discussion Reaching out- Don't know where to start.
"Hi all, i am new to this site and fairly recently diagnosed the CF after years of depressing visits to the doctor who would tell me i'm stressed or there's nothing wrong. Finally i moved to a different city, thought i'd give a new…"
Jul 19
Lane Collins replied to Alliison Wade's discussion CFS and Hypothyroidism
"Most traditional doctors don't understand that with T-3 med your TSH is going to be a very low number. Depends on how you feel and do you have hyperthyroid symptoms. Best of luck!"
Jul 8
Lane Collins replied to Patti Jackson's discussion Shingles
"How awful for you! I've been sick with ME/CFS, FM and Dysautonomia for 28 years and have had countless break outs. I cannot take the anti-viral med orally; so I just get the Zovirax ointment. 20 months sounds like pure torture - never heard of…"
Jul 8
Catherine Du Val updated their profile
Jul 7
Kate replied to Blair A. Miller's discussion Lymphoma & ME in the group ME / CFS Free Online Support Groups
"I'm so sorry that you have been diagnosed with lymphoma. I'm worried about cancer as well. I have tumors in my thyroid and parotid gland. I have had the thyroid tumor biopsied on both by fna and by some genetic testing. Both has some back…"
Jul 5
Kate posted a photo

To add to CFS profile

I want to add these to my CFS profile please. If just one is fine too. First one can be my profile pic. Thank you
Jul 5
Patti Jackson posted a discussion

Shingles

Hello everyone.  I was wondering if anyone has had shingles since becoming ill with ME/FM/MCS.  Over the last 24 months I have had shingles from the tip of my head to the tip of my toes (including inside my mouth), always on both sides.  Most shingles out breaks come and go, usually about 4 months in duration.  BUT the shingles on my legs I have now suffered with for 20 months.  I won't go into detail of the sores, enough to say I keep my legs covered at all times. The constant burning pain and…See More
Jul 5
 

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 — 3 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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