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Looking to Interview Recovered ME/CFS Patients

  [ 10 votes ]   [ 3 Comments ] • September 10, 2010

(As posted Sep 7 on ProHealth's ME/CFS and Fibromyalgia Message Board. See message string for further comments & discussion of what might be considered "recovery," HERE.)

Hi All:

I am currently working on a project to gather the stories of people who have recovered from moderate/severe, classic ME/CFS.

Unfortunately, there aren’t many people who have recovered from this illness. It thus seems important that we learn from the few who have recovered.

I’ve spent the past three years gradually regaining my own health. Now that I’m close to being really well, people ask me a lot of questions about my experience.

I don’t want to make it seem that I have the answers just based on my story though. So I want to find some more case studies.

So far, the ones that I’ve found have had a whole lot of similarities and a few interesting distinctions. I think it’s going to be a really interesting and meaningful project.

Rich Van Konynenburg has been helping me to find people. Hopefully some of you here will know some additional ones.

Again, I’m looking for people who were seriously ill with ME/CFS (fitting the “Canadian Criteria”). They don’t have to be totally without any symptoms whatsoever or with limitless energy, but they should be well enough to be living an active, fairly normal life and report feeling good the majority of the time.

I’m going to be writing up each of the case studies (I used to be a journalist) and then putting them together with some general observations in an information packet. My inclination is to distribute it widely, free of charge, to doctors and to patients.

Participants will have every opportunity to edit their own stories as they see fit, and to make comments on the general observations that I put together.

If you know of anyone, would you please ask them to contact me or pass along their information?

Thanks very much for your help.

Best regards,
Lisa Petrison ("slayadragon")
PhD, Northwestern University

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Article Comments Post a Comment

correlates and validity
Posted by: IanH
Sep 11, 2010
I would be interested to know how you plan to validate the diagnosis post hoc. Also Have you had a test for XMRV? Be interesting also to test those who have recovered and fit modified Canadian Criteria (Jason) for XMRV.
Reply Reply

diet is the answer
Posted by: sherlockgranny
Sep 14, 2010
I don't say I'm cured, but haven't had any pain since stopped eating sweets, bread( anything white except potatoes), diet sodas, diet anything, packaged foods, mixes, red meat,polyunsaturated fats and trans fat. I eat lots of veggies, chicken or fish, sweet and white potatoes, brown rice, oats, oat flour, fruit and fruit juices, read labels for high fruitous corn syrup, and msg, fat content etc. Still have problems with shortness of breath, weakness and blurred vision. Would love help with this.
Reply Reply

How is it progressing?
Posted by: IanH
Sep 15, 2010
Hi Lisa How is this project progressing. I am most interested in it.
Reply Reply

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