2. Chronic Fatigue Syndrome / M.E.
3. Interviews

penelkuhn's interview

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How did all start?

i was taking a nap between high school classes and my full-time job, and i couldn't get up from the couch.

Do you already have a diagnosis? How long did it take you to get it?

took 46 years to diagnose ME.

For what medical specialties have you been treated? What has been the most useful specialty for your?

rheumatology, neurology, neuroimmunology most useful was rheumatology

What has been the most useful thing for you so far?

rest, quiet.

What have been your biggest difficulties?

getting mundane tasks done; cleaning, showering grocery shopping

How has your social and family environment reacted? Have your social or family relationships changed?

they react with dismissive behaviors

What things have you stopped doing?

working, doing research, writing software, engaging in numerous hobbies.

What do you think about the future?

unknown

So far, which years have been the best years in your life? What have you done during them?

heavy question at the moment

What would you like to do if you didn’t have your condition?

run, jump, play. and feturn to my research.

If you had to describe your life in a sentence, what would it be?

disappointing

Finally, what advice would you give to a person in a similar situation?

hang on. do the best you can.

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