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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

I am sad, Jody, that you deleted my former comment with a link to my website. It offers valuable information on this topic. I hope we can do some real sharing next time when this worthy subject of Chronic Fatigue Syndrome and XMRV comes up. I'm right there with you in wanting to bring a halt to this horrible illness. No one deserves to suffer with it and millions of people want answers. If science and medicine can find a way to stop the immune system from being vulnerable to such a culprit as XMRV, people will stop getting sick.

July 30, 2010 - 7:44pm
HERWriter (reply to cindacrawford)

Hi Cinda,

I didn't delete any comments. The moderators for empowHER would be the ones who monitor comments and do any moderation and deletions.

I know you have a very helpful website with many resources available there. I'm right there with you too in hoping for answers and resolution to CFS. And soon.:)

July 30, 2010 - 8:21pm

We must be patient, however, that is so hard to do. Surely, all of us want good and accepted answers now. I keep a good list of XMRV related information on my Health Matters Show blog at Health Matters Show: Best XMRV CFS Links. The list is updated frequently and you're welcomed to check it out, plus all of the info that I post on Chronic Fatigue Syndrome.

July 30, 2010 - 10:27am
EmpowHER Guest

Unproductive feuds between patients and patient organizations are almost as common as the blood feud between the Wessely School of psychiatrists and patients.

Find those sites that are the best fit for yourself rather than let others dictate what is best for the individual.

A good mix of scientific, journalistic, and explanatory as listed here and elsewhere will most likely yield the most benefit.

July 29, 2010 - 8:10pm
EmpowHER Guest
Anonymous (reply to Anonymous)

I don't think the feud between patients and CAA is unproductive. Since they are claiming to be representing patients they should do so and not spread misinformation that harms us. This is basic.

July 31, 2010 - 5:01pm
EmpowHER Guest

Justin Riley makes a good point. CAA is absolutely abysmal. It is an advocacy organization in name only. Most definitely not the place to go to learn about XMRV. I would like to see Mindy Kitei's blog and Hilary Johnson's blog moved up the list.

July 29, 2010 - 2:49am
EmpowHER Guest

Why was my post deleted?

PR and Cort Johnson support the Lightening Process and Faith Healing. It's the worst place you can go if you have XMRV.

July 29, 2010 - 12:51am
EmpowHER Guest

Jody - you write that you 'found a treatment' that worked for you; have you written about this anywhere? I took a quick look at your website and blog, but couldn't find any details. Would (like many others, I assume) be interested to learn what has worked for you.
And, as you appear to be in Canada, I would just like to mention The Nightingale Foundation and the work of Dr Byron Hyde, who has written useful information on diagnosing ME.
Nicky Reiss

July 29, 2010 - 12:12am
HERWriter (reply to Anonymous)

Hi Nicky,

Thanks for the information.

You are not the first one to say that you're having trouble finding the specifics about my treatment(s) on my website and blog. There is a fair amount of information about this on my website but it seems that it is too spreadout for readers to lock onto.

I'll see what I can do to get a comprehensive picture of what's been working for me into one article, or failing that, into one section on my website.

I operate on CFS time in many respects still so this may take awhile to get it pulled together. But I will get on it and get something on ncubator.ca. Promise. :)

Thanks for including a link to your blog. I will check it out as well.

July 30, 2010 - 5:49pm
EmpowHER Guest

http://standup2me.blogspot.com has a HUGE list of websites and fellow bloggers and stays current with ME/CFS /FM/XMRV info..

July 28, 2010 - 10:22pm
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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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