ME-CFSCommunity.com

About Us

The ME-CFSCommunity is a creation of cfsKnowledgeCenter, Inc., a member supported, Not for Profit 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, China, Christmas Island, Columbia, Czech Republic, Denmark, Egypt, France, Germany, Greenland, Iceland, India, Indonesia, Ireland, Iran, Israel, Italy, Jamaica, Japan, Kenya, 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, Turkey, Ukraine, United Kingdom, United States and Venezuela.

Members

  • Penny Nance
  • Jennifer Slattery
  • Pink Rose
  • rafael pohlak
  • Shelly Burlison
  • cc raltro
  • Audra Starks
  • Susie Collins
  • Sandi Harrington
  • Jane Luft
  • Alicia Berger
  • Lisa Schicht

Birthdays

Latest Activity

These are all funny, Folly. But, I have to say that my favorite (right now) is, "Ever stop to think, and forget to start again?" I had to laugh because of the reality of it that shows up much too often. I have to share this one with my hubby. I thin…
12 minutes ago
My cannas are growing too!!
13 minutes ago
I agree, it is extremely interesting and of great value. My first thought is that we are actually quite blessed to have this wonderful lady and Professor Malcolm Hooper and many others writing memos like this and fighting on our behalf. As ever Mar…
19 minutes ago
My bouganvillea is coming along!!
20 minutes ago
Hi cc raltro, I have had this exact same scary experience - I too found it frightening. I have had a lot of tests - I was first told it was migraine, when it started on my face. I had had problems with one side of my body, but eventually I was hav…
52 minutes ago
Harry, thank you so much for posting this ..I was slowly sinking in the mire of hopelessness that things in the UK were not going to make a turn for the better and I completely agree that if positive progress is made in Scotland, surely the rest of…
1 hour ago
Quotes for the Day! why do women perfer to pick beauty instead of brains? Simple, men can see better than they can think =P I get plenty of exercise – jumping to conclusions, pushing my lucks, and dodging deadlines. Sorry, I couldn’t repair your…
2 hours ago
I will have you know that the puppies has gone viral to our friends and family. Everyone are animal lovers. They find it facinating.
2 hours ago
Hi Sue, I'm sorry to hear you are not improving on the antiviral protocol. I hope something works for you soon. We have other people who live in or near Toronto. Hopefully you'll hear from some of them as well as others.
2 hours ago
3 hours ago
Really sorry to hear this, another example of the carrot being dangled only for it to turn into a lump of coal at the end. The focus of GET and CBT is becoming increasingly frustrating, and again focuses on ME/CFS being a pyschological condition rat…
3 hours ago
Hi All,Well ,my optimism has just been dashed - I have just read the published version of the above,via the MEA site,and it`s not good news.The final is NOTHING LIKE the draft proposal and varies very little from the NICE guidelines.Depression was n…
4 hours ago
Wonderful Paula, you are an inspireation to us all. I love you, Woodstock
4 hours ago
Hard Blessings That Heal Hi Maxine, So good to see you here. I've repeatedly and lovingly set healthy boundaries with dysfunctional people in my life. There were those last few that refused or were unable to yield to these boundaries and insist…
7 hours ago
marthese bugeja updated their profile
8 hours ago
Ok Jane,but i must tell you i have never planted any thing in my life! I am afraid of bulls and cows the latter cause they resemble bulls i guess.Most probable i am the Reaper of insanity,just kidding,love the Reaper.
10 hours ago
OMGoodness - The Reaper? We'll just imagine it has something to do with Farming, ok? LOL
10 hours ago
Thank you ladies........I'm just tickled pink if it makes you smile! I feel like that is the best reaction to art!
11 hours ago
Hi Jane,thanks for the compliment!some yrs back i found that the last part of my name means The Reaper,i hate to know of what ! it is pronounce Martes,take care and keep on painting,love marthese.
14 hours ago
Thanks for your responses guys, The paremedics and then the doctors at the hospital first did the FAST test for stroke to make sure it wasn't to do with a bleed, they then did a serious of tests of my reactions and strength in my limbs and eyes, if…
14 hours ago
 

Welcome . . .

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 two-fold:
1) 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.
2) To help members move beyond the obstacles imposed upon them.

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. Our member roster is held in the strictest confidence. It is not shared with any other organization nor used for any commercial purpose.

Please join us. You'll find us warm and welcoming. Our community interesting and informative.

A technical glitch has disrupted our InTheNews section. Much, but not all, of the material previously posted has been re-posted.

Finally, the National Academy of Sciences Makes It Official:

Study Links Chronic Fatigue to Virus Class

Release of the study findings, additional news items and enlarged illustration of the virus attack may be found at
InTheNews


Q&A with Randy Schekman, editor of Proceedings of the National Academy of Sciences (PNAS), on the reasons behind the delay of the Alter/Lo paper confirming the association between ME/CFS and the XMRV retrovirus

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.
Learn more about and take the ME/CFS & FM Patient Survey

For those current or former residents of the UK who have dealt with the UK medical system. To take the survey please go to the UK Group.

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. Learn more about and take the Case Definition Survey

The In My Shoes story contest is now open for entries. The contest is open to anyone with ME/CFS and FM or anyone who has had experience in supporting or caring or living with someone with ME/CFS and FM. Learn More.

Mary Schweitzer,a well respected observer and commentator, has written a thought provoking article which deserves to be read, and commented upon, by everyone in our ME-CFSCommunity. Link: What do we have if we do not have CFS?

The new group ME Soul Serenity has been formed by BETHANY YAGCI of Turkey. It is a place ... to help us rest, pace ourselves and find comfort for our souls.

It's a place where we can all bless someone on one of our better days, and get blessed by someone on a day when we need it. Some of us are good at poetry, some good at finding soothing quotes - we may all be different but our needs are similar.

New UK Group is formed.
A great deal of time and effort has gone into the development of the new UK Group by Kieran Hall before this formal opening of the group. We welcome his efforts, as well as those who assisted him, to reach out to to serve those from the UK, no matter where they currently reside, affected by ME/CFS and the unique issues with which they must contend.

Got a question about ME/CFS? Be sure to Ask Dr Hyman.

There's a fair amount of controversy regarding the role of exercise in easing the symptoms of ME/CFS. Get the truth from a widely acknowledged expert on ME/CFS, The video of Dr Irma Rey who spoke on CFS & Exercise is online in our Expert Assistance section.

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.

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

Dan Moricoli

Spirituality and Illness 92 Replies

Started by Dan Moricoli in General Discussion. Last reply by Paula Hayward Aug 26.

Dan Moricoli

Caregivers 21 Replies

Started by Dan Moricoli in General Discussion. Last reply by rachel williams 1 day ago.

Rachel

Thankfulness 99 Replies

Started by Rachel in General Discussion. Last reply by Paula Hayward Aug 27.

sue pattersnon

CFS: Anyone on antivirals? 246 Replies

Started by sue pattersnon in Medical Treatments & Issues. Last reply by Folly Darling Aug 25.

Louann

ADVOCACY for the Mitochondria Challenged 53 Replies

Started by Louann in Advocacy. Last reply by Folly Darling Aug 22.

Blog Posts

Dan Moricoli

Flois Landau has been hospitalized with a very serious condition.

This community's good friend, Flois Landau has been hospitalized with a very serious condition.

Flois is one of that rare breed of people who, while they do not have a particular disease, understand its devastating impact and do what they can to aid those in need.

Floris and her husband David, are important contributors to the ME-CFSCommunity via the Fl
Continue

Posted by Dan Moricoli on August 12, 2010 at 10:30am — 28 Comments

Dan Moricoli

Protecting Your Online Privacy


As virtually every participant in the ME-CFSCommunity is aware, the Internet offers the ability to access previously inconceivable amounts of information in minutes, if not seconds. It also allows for unprecedented levels of direct communication with others around the world. But these features come at a price if you do not take care to protect your privacy.

The ME-CFSCommunity works diligently to protect the privacy of our members' c… Continue

Posted by Dan Moricoli on August 11, 2010 at 1:00pm — 2 Comments

Charlotte Pilgaard

Still undiagnosed!!

This past year has without a doubt, been the most difficult one in my 32. year old life. August of 2009 I became sick with Campylobactor and after that, a nasty throat infection that just wouldn´t go away. During late fall I started really wondering why I didn´t get any better and went to my GP again. My muscles had started to hurt - especially in my thighs, upper arms, back/neck and I found it difficult to climb stairs, walk up hills - and just standing up. Also I was to the point of exhaust

Continue

Posted by Charlotte Pilgaard on August 6, 2010 at 4:36pm — 12 Comments

Kelvin Lord

Embracing Reality

I admit it.

I really blew it, big time. Two weeks ago, after my last "glowing" report about how good I was feeling at the 6-month mark, I took it too far, and overdid it. I
moved from the reality of my health, to a fantasy world of my own
making, which
Continue

Posted by Kelvin Lord on August 6, 2010 at 10:33am — 11 Comments

Sue Lyndes

A Hard Decision

A Hard Decision




It’s now six days since my follow up appointment with my immunologist, Dr. Gupta and it has taken me that long to get my thoughts in order at what transpired. To say it wasn’t a good appointment would be an understatement – how quickly things can change when you no longer technically fit the
description of a disease with a name

Continue

Posted by Sue Lyndes on July 27, 2010 at 2:00pm — 24 Comments

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