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ME/CFS Research – Are we Getting Closer to a Diagnostic Test?

11/4/2014

4 Comments

 
PictureMichael Zeineh / Stanford University
For those of us who have been suffering with ME/CFS for years if not decades, we know that it’s a real physical disease.  Even though most practitioners have told us that ‘it’s all in your head’, we’ve known that someday the research would finally catch up with the cruel reality of ME/CFS.  Now, a research team out of Stanford, using new brain scan technology, has reported finding significant differences between healthy people and those who are suffering with ME/CFS.  It was reported in many news outlets.  Here is the link to a write up in Today.  Read it if you haven’t seen it already.

http://www.today.com/health/chronic-fatigue-real-new-brain-scans-show-1D80250083

Reading this article cheered me up!  OK, I’m an optimist at heart and I’m ready to go there.  But not only did this study receive attention, mainstream audiences heard about it.  That means that the negative viewpoint of ME/CFS might start to change.   And, the researchers found inflammation in brain nerve cells which could possibly have been triggered by a viral infection.  Duh!  For decades, many ME/CFS sufferers have said that they caught a flu that they never recovered from.

Of course, this study needs to be repeated and it will take time to gather more data.  But for now, it’s exciting to think that we could be getting closer to not only understanding the underlying cause of ME/CFS but possibly a successful treatment.  OK, I said I was an optimist.  Please COMMENT on this blog or Send in your thoughts and I’ll post them with your permission.  You can use the Contact Form or send an email to Martha at DefeatCFS dot net.  And Guest Blogs are most welcome!

Look for a weekly posting on Tuesdays.  And consider being part of the conversation.

Be Well Again,

Martha

4 Comments
Donna
11/5/2014 03:29:39 am

Your blog is very timely for me, Martha. I am a financial backer (co-producer) of a documentary film about ME/CFS titled "Canary in a Coal Mine." ( http://www.canaryinacoalminefilm.com/ ) It began as a Kickstarter campaign, but as production has continued, we have also received assistance from the Sundance Film Festival and Tribeca Film Festival among other media sources. The film's producer, a young woman, Jen Brea, has become a strong advocate in spite of battling severe ME/CFS herself. The film's premise is to document the lives of five individuals with ME/CFS to heighten awareness within society, but especially within the medical community. Our goals are to have the film worthy of being seen at the large film festivals, have it shown in medical schools, and to raise the allocation of research monies. I have just learned that Dr. Jose Montoya ( http://med.stanford.edu/news/all-news/2014/10/study-finds-brain-abnormalities-in-chronic-fatigue-patients.html ) has graciously consented to be interviewed on Friday by Jen. It is unlikely that the interview will be included in the film, but will be used to further awareness by advocates. In the 20 years that ME/CFS has ruled my life I've seen little progress in diagnosis. Most of us have similar stories of years of frustration with no diagnosis, given advice that is actually counter-productive to our health. After 7 years I diagnosed myself from an article in a health magazine, and then set out to find a doctor to help me. My personal hope is that those in the onset of their illness will be given the proper advice and support that is needed.

Reply
Tim Boland
11/9/2014 07:48:10 am

Wow I find that exceptional that you undertook the making of this film, Donna, with the assistance of Jen and those who participated. When any of us is ill, it is especially hard to devote time and energy to something. Your dedication shows that you care not only about your own condition, but helping the millions who are affected with a troubling, saddening and difficult illness. I watched the clip from the movie, it's hard to watch, hard to see others suffering but gratifying to see them living their lives and wanting to move forward. From Martha's journey, those she has inspired and others who have become ill, there is hope, there are things which we can do, recovery is possible for so many of us.

Reply
Donna
11/10/2014 04:12:22 am

Thank you, Tim, but I'm only a financial backer. I am fortunate to be able to easily donate. There were 2,593 backers on the initial fundraising campaign. Many of those were ME/CFS sufferers who are unable to work and live on scant incomes, but gave what they could. Their sacrifice was greater than my own. The hard work of filming and editing is being done by others. Some, as Jen Brea, are sick; others are donating their time and expertise because they believe that this film needs made.

Martha
11/5/2014 05:20:27 am

That's awesome Donna! It sounds like an exciting project that could make a huge difference in how ME/CFS is perceived by the public as well as the medical profession. And yes, lets hope that the newly diagnosed get the correct advice and support. Keep us in the loop on your project!

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    Hello,  I'm
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    After struggling with CFS for four years I am fortunate now to be fully well and making choices about how I want to live my healthy life.  One choice is to be an active part of the CFS community and to offer one voice from the fully recoverd to the dialogue.  I'm glad you're here!   For more about me, here's my Bio.

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