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If you could write a question for an ME/CFS survey, what would it be?

Diwi9

Administrator
Messages
1,780
Location
USA
I would bet that reviewing some of Leonard Jason's work from DePaul University could be a great guide for measures already used. Also, there are many polls on PR that could also guide you: can you tolerate alcohol; how many years since you've had a cold/flu...

I'm curious about some of the screens Hornig/Lipkin used in their classic/atypical screen and what Avindra Nath is going to be using.
 

Hajnalka

Senior Member
Messages
910
Location
Germany
Personally I'd be interested in how many ME sufferers have the constant flu feeling. I feel everyday like I have the flu (for 14 years) and this is the worst symptom for me.
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
I am attaching some paperwork that I would submit to my Dr periodically to document my disability, some good questions in this form.

GG

Edit: Maybe not good questions for a survey.
 

Attachments

  • Dr Berne's CFS and Fibro symptom Checklist pg 1 of 6.jpg
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Cheesus

Senior Member
Messages
1,292
Location
UK
Personally I'd be interested in how many ME sufferers have the constant flu feeling. I feel everyday like I have the flu (for 14 years) and this is the worst symptom for me.

Similar to this, I would be very interested to know how regularly people with ME experience infections. Anecdotally, it seems some people experience them much more regularly than the average person, whereas others are all but immune to infections.

I have also heard that some people move between these two states, so if you can capture that too then you can have some extra brownie points.
 

markielock

Senior Member
Messages
319
I agree with @Cheesus. I would add to this and ask if they do experience infections, do they experience them more regularly after being more run down. I always get infections in my ears, wisdom teeth etc... after getting run down!

Another thing I'd ask is: do you experience a massive dip in health after using antibiotics
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
I agree with @Cheesus. I would add to this and ask if they do experience infections, do they experience them more regularly after being more run down. I always get infections in my ears, wisdom teeth etc... after getting run down!
I used to get these long ago - in my early M.E. days, I think. I'd be careful if I were you. I'm going through my diaries but it's a long haul. My wisdom teeth are rotting away now - I've been waiting for months to get on someone's list! But maybe it's best to wait until they stop using those damned poisonous fillings...

But then again - how do you avoid getting run down when you've got M.E., when your immune system has turned against you?