Questionnaire for CFS sufferers:

[EllieWinters]

Currently I'm creating a blog to gather together people's experiences with chronic illnesses, from IBS to M.E/CFS (focusing mainly on M.E/CFS and fibro), and I would like to make a page with some visible material showing different things. The following questions are my first set of charts I wish to make.

I understand some of them re very personal, so please don't feel you have to answer them all. If they're not applicable t you can you simply put "NA" by the number?

1. Does alcohol consumption effect your symptoms?

2. Have you been diagnosed with a mental health problem such as depression or anxiety since your Chronic illness diagnosis?

3. Have you found your GP (regular practice doctor) to be understanding?

4. Have you been denied monetary support or disability allowance?

5. How far do you have to travel to get to the clinic that helps you?

6. Have you had to drop out of school, college or university?

7. Have you been denied certain medication due to cost and/or age?

8. Do you believe the medical care you receive is adequate?

9. Have you considered taking your own life since developing your chronic illness?

 

[MeSci]

Do you want people to answer here?

I'm assuming so right now - apologies if not:

1. Does alcohol consumption effect affect your symptoms? DON'T THINK SO

2. Have you been diagnosed with a mental health problem such as depression or anxiety since your Chronic illness diagnosis? NO

3. Have you found your GP (regular practice doctor) to be understanding? NO

4. Have you been denied monetary support or disability allowance? YES

5. How far do you have to travel to get to the clinic that helps you? THERE IS NO CLINIC THAT HELPS ME

6. Have you had to drop out of school, college or university? HAD TO TAKE A YEAR OUT OF MATURE-STUDENT UNI COURSE AFTER SUICIDE ATTEMPT

7. Have you been denied certain medication due to cost and/or age? NO

8. Do you believe the medical care you receive is adequate? NO

9. Have you considered taking your own life since developing your chronic illness? TOOK LARGE DELIBERATE OVERDOSE IN 1996 LEADING TO A MONTH IN HOSPITAL WITH LIVER AND KIDNEY FAILURE. HAD BEEN FIGHTING URGE TO DO THIS UNTIL FAMILY INTERVENTION TIPPED ME OVER THE EDGE

 

[Allyson]

[quote="][/quote]

Hi Ellie,

I wonder if I could ask what the purpose of the survey is
the questions seem to cover a broad range of issues

Also if i could add a note on acohol
I do not tolerate it
I occasionally have a glass of wine with a meal

but when my specialist asked me about it he asked me how i felt when i had it - i had not realised it ..it made me feel bad in some non- specifie way and i usually stopped after a glass if that.

then when he explained what alcohol does - a vasodilator - i realised WHY i felt bad; sitting or staning and drinking alcohol causes vasodilatation so not enough blood gets to your heart and brain....now that i can see the clear correlation i only have a glass of wine if i REALLY feel like one - so less than once every 6 months.
THe flow on effect is that alcohol will thus make you crash worse in subsequent days.

Just wanted otherswho may not yet to be aware of this interesting thing before they answer, as I would once have said no effect - but i avoided alcohol for reasons i did not understand.

 

[ukxmrv]

Hi Ellie,

Do you have ME or CFS or Fibromyalgia?

Are you intending to present this like a survey or just use parts of it in your blog?

 

[Sushi]

EllieWinters

Yes, I think if you can tell us a little more about yourself and how you will be using this survey, I think you will get more responses.

Sushi

 

[MeSci]

Hi Ellie,

Do you have ME or CFS or Fibromyalgia?

Check info section in her profile - says she came down with ME/CFS 2008-2009.

 

[Allyson]

Check info section in her profile - says she came down with ME/CFS 2008-2009.

Ellie could you pst the link to the blog for us please?

I note this is your first post and unfortunately some of us have been traumatised before by "on-line surveys" by "students" that are then used against us under the guise of "research" to imply that the illness is not organic in origin.

 

[Sherlock]

then when he explained what alcohol does - a vasodilator - i realised WHY i felt bad; sitting or staning and drinking alcohol causes vasodilatation so not enough blood gets to your heart and brain.

Plus, alcohol results in buildup of acetaldehyde, which makes people feel bad. Candida creates acetaldehyde. Acetaldehyde is in smog.

OTOH, exercise results in malondialdehyde.

So if a person is not generating enough enzymes to break down aldehydes (aldehyde dehydrogenases), then alcohol intolerance can be related to PEM.

 

[Allyson]

Thanks Sherlock, but would that take effect withint 15 mmins of having a drink? atht is when i feel the effects

And would one glass of swine do that ? - it affect me badly