Looking to Interview Recovered ME/CFS Patients

[slayadragon]

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 Konynenberg 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
Ph.D., Northwestern University

lisapetrison at yahoo-dot-com

[lili2701]

hello,

I think somehow that people who have recovered wouldnt come here or on any CFS forum anymore. Well at least if I had recovered I would just want one thing-forget about it! what's the use of surfing on CFS forums if you are healthy again, except for helping others of course, but that is my opinion, maybe some people will see your message, I hope so for you

Can I ask what are the similarities between the people who have healed? It would be interesting for us to know!
I guess it would be-change of life, meaning less stress and change of diet habits, am I right? +relaxation/meditation etc..

Good luck with your studies!

[Chronicfatiguetreatments]

i would say that it would be pretty tough to find people. I only personally know of 1, my doctor.
But i think he still has relapses and gets sicker from time to time.

The big thing that helps him is thyroid. He takes alot. It helps a little bit for me, but i can only take low doses.

The only problem is once you start taking, you are pretty much stuck on it for the rest of your life. Ive been try to get on a lower dose and its pretty hard.