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Chronic Fatigue Syndrome: 10 Resources Shine Some Light On XMRV

By HERWriter
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Virtual constellations of blogs and websites revolve like satellites around the weight and gravity of Chronic Fatigue Syndrome. Each of these sites is a thing of beauty and value, representing a world unto itself.

It would be impossible to highlight all of them but I've selected a few for you to explore.

Some action in the Chronic Fatigue Syndrome ghetto has gotten us craning our necks on our cots these days. Or ... there might be some action.

We're hearing some rumbling about XMRV. Might not come to anything, or then again we might see a batallion of champions burst into view any minute now.

Can't see anything yet. All the neck craning and eye strain and guesswork doesn't bring anything into better focus but we can't help it. Until we can see something we're listening very hard to every rumble.

Here are ten places you can go to and put your ear to the ground and hear something you can understand. I've listed them alphabetically so I don't have to try to rank them. Some use Chronic Fatigue Syndrome or CFS, some CFIDS and some ME but all share the same vision.

1. Amy Dockser Marcus' Wall Street Journal Health Blogs on XMRV
Amy Dockser Marcus' blogs have been an unexpected blessing.

While most of these sites are part of the CFS ghetto, by people with CFS for people with CFS -- and seemingly causing little stir outside of our CFS borders -- Marcus writes for the Wall Street Journal.

We're frankly not used to people from the outside showing an active interest. We are thankful to Marcus for shining her spotlight on us.

2. CFIDS Association of America
The CFIDS Association is a charitable organization which has been around since 1987 and has invested over $28 million to find ways to heal CFS and to alleviate the suffering.

3. Christopher Cairns' blog CFS Patient Advocate
Christopher Cairns' daughter is sick. He does what he can for her as a CFS patient advocate, and blogs to share what he's learned with others who have CFS or who are advocating for someone who does.

4. Cort Johnson's blog Bringing The Heat
Cort Johnson's blog is filled with the well-known and the obscure members and events in the CFS community.

5. Cort Johnson's Phoenix Rising
This is where I began to get a handle on CFS a few years ago. Johnson wrote in a way that translated the medical jargon into words my CFS brain could understand.

He interviewed key players. He explained how things fit together. He was sick himself and that told me we shared a perspective that only happens between people who are ill.

6. Dr. Vincent Racaniello's Virology Blog
Dr. Vincent Racaniello is a virologist whose blog deals with any and all questions about viruses. His posts about XMRV are refreshing in their open-minded scientific exploration of a very real retrovirus, XMRV.

We do not find this perspective everywhere. So many have formed opinions that already color everything they see.

7. Hillary Johnson's blog Osler's Web
Hillary Johnson has been writing about CFS for many years. She is hard hitting and straight to the point. She is continuing in this vein now that XMRV has made its appearance.

8. Mindy Kitei's blog CFS Central
Mindy Kitei is providing information and perspective for a hungry community. She's staying current with any new developments and that is especially important to the chronic world right now.

9. Rocky Mountain CFIDS/FMS
The Rocky Mountain CFIDS/FMS Association is in Denver Colorado. They are a non-profit support organization who are part of the CFIDS Association of American and the National Fibromyalgia Association.

10. xmrv.me.uk
This blogger's sister was diagnosed with ME in 1993, and later also with fibromyalgia. The sister has gotten sicker. The blogger is posting everything they can about ME, making this blog a valuable resource for anyone needing information.

I spent 15 years losing the battle against Chronic Fatigue Syndrome. Three years ago, I found treatment that worked for me, and now I am making a comeback.

http://www.ncubator.ca and http://ncubator.ca/blogger

Add a Comment16 Comments

EmpowHER Guest

Thanks Jody.

CFIDS Assn of America distributes a lot of misleading and false info and doesn't truly advocate for or represent patients. Also, imo Cort Johnson needs to be taken with a grain of salt.

Osler's Web and Mindy Katei's blogs are the best sources.

-Justin Reilly

July 28, 2010 - 7:34pm
EmpowHER Guest

Dan Marcoli's site, ME-CFSCommunity is part discussion board and part expert explainers and membership is free (although monetary contributions to keep the site running are accepted).
For example watch "XMRV, CFS/ME and You" by long time CFS and HIV expert Dr. Nancy Klimas in a 12 part video series produced by the ME-CFSCommunity. Or use the Ask Dr Hyman column to directly communicate with our resident physician.

July 28, 2010 - 6:33am

The comments may well end up being the best part of this article. I hope we end up with a long list of CFS resources for people being chronicled here.

Keep 'em coming.

July 28, 2010 - 6:12am
EmpowHER Guest

One of the oldest sites is Co-Cure. It is not a discussion board, but rather a fast way to find out about the latest research and notifications regarding issues important to PWCs. There is also a Good Doctor List for those seeking a doctor in their area or to post about your own doctor if they are particularly helpful for CFS patients or those with similar diseases.


July 28, 2010 - 6:06am
EmpowHER Guest

Journalist Adrienne Dwello posts about fibromyalgia and chronic fatigue syndrome at About.com

July 28, 2010 - 5:49am
HERWriter (reply to Anonymous)

Thanks for posting this.

Adrienne Dwello has an excellent resource which she has been faithfully building over a period of time.

This is the problem of only being able to post 10 sites. There are so many other valuable sources that people need to know about. Adrienne Dwello's is definitely one of them.

July 28, 2010 - 6:10am
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We value and respect our HERWriters' experiences, but everyone is different. Many of our writers are speaking from personal experience, and what's worked for them may not work for you. Their articles are not a substitute for medical advice, although we hope you can gain knowledge from their insight.

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