Caffeine poll - safe or unsafe, helpful or unhelpful

[Bob]

I can't find a caffeine poll on the forum, and I thought it might be interesting to create one.

I'm interested in people's own personal experiences with coffee.

Please select multiple answers - All that apply to you.

Everybody please answer the first question re post-exertional malaise, if you can, if answering any questions.

If post-exertional malaise is part of your illness, then please tick/check answer no1.
If not sure, then just answer whatever you feel is most appropriate for you, but it's not too important.

The first question is to see how relevant the poll is to ME/CFS patients who experience prolonged post-exertional malaise or post-exertional exhaustion (aka PENE.)

If I've not included any potentially helpful answers, then please say so on the thread.

 

[Mij]

Check out what it says at 58 seconds. I had problems with coffee before I became ill but not to the point of how it can debilitate me now. I only drink a small amount once in awhile because I enjoy it, but when I do I dont' have or make plans to go out that day. For me it feels like adrenall burnout and not so much PENE. It's a different feeling.

http://ca.news.yahoo.com/video/brain-caffeine-images-reveal-startling-232755282.html?vp=1

Oh and I do get PENE but I'm unable to check that on your poll.

 

[Sushi]

Bob

Not sure how to answer # 1 as it seems to require a yes or no?

And I think we can only answer these questions as individuals, not

"for ME/CFS/Fibro."

We all have different things going on so our response to caffeine is going to be very individual.

Interesting poll though.

Sushi

 

[Bob]

Not sure how to answer # 1 as it seems to require a yes or no?

If post-exertional malaise is part of your illness, then please tick/check answer #1.
If not sure, or it's 'sometimes', just answer whatever you feel is most appropriate for you, but it really doesn't matter. It's not scientific, and it's just for our own interest.

We all have different things going on so our response to caffeine is going to be very individual.

Yes, agreed, the poll isn't perfect, and it's not a scientific poll. Like you say, it's just interesting.

And I think we can only answer these questions as individuals, not "for ME/CFS/Fibro."

The reason that I included "for ME/CFS/Fibro" is because I intended the poll to be in relation to ME/CFS and its symptoms, and I didn't want to exclude Fibro patients.
I know we are a heterogeneous group, but the forum poll facility doesn't allow for complex polling.

 

[Sushi]

Bob,

I didn't mean the inclusion of Fibro, just that two ME patients will have very different things going on so that what may be good for one, is poison for another. For instance, even for just myself, caffeine is a great help for certain aspects of my illness and makes other aspects much worse.

We are so complicated!

BTW, if you like, the poll can be edited. If you contact me in chat or by PM and can tell you how.

Best,
Sushi

 

[WillowJ]

so are you wanting to hear the answer to "caffeine is good/bad for my ME/CFS/Fibro"?

I agree with Sushi; it's impossible to answer that it's good/bad for these conditions in general.

 

[alex3619]

I haven't answered the poll as I feel I can only answer for me. I do get PEM/PENE. I have no adverse effects from coffee but like drinking it - unless you count coffee breath and heartburn if I drink too much. I just don't respond to coffee like other people. Given that and the antioxidants in coffee, and that I gave it up for a year but saw zero improvement, I decided I should keep drinking it. Why not? Yet I do know others get very different reactions, and some even get severe reactions. As Sushi says, we need to treat this as individuals.

 

[ukxmrv]

I'd like to see acknowledgement sometimes or somewhere to point people at when I get told blanket ideas like "coffee is always bad for ME"

Maybe it would have been better for all of the options to read "MY ME/CFS ...." so we hear what people experience rather than what they think or have been told but don't know for themselves?

 

[Bob]

so are you wanting to hear the answer to "caffeine is good/bad for my ME/CFS/Fibro"?

I agree with Sushi; it's impossible to answer that it's good/bad for these conditions in general.

I haven't answered the poll as I feel I can only answer for me. I do get PEM/PENE. I have no adverse effects from coffee but like drinking it - unless you count coffee breath and heartburn if I drink too much. I just don't respond to coffee like other people. Given that and the antioxidants in coffee, and that I gave it up for a year but saw zero improvement, I decided I should keep drinking it. Why not? Yet I do know others get very different reactions, and some even get severe reactions. As Sushi says, we need to treat this as individuals.

I'd like to see acknowledgement sometimes or somewhere to point people at when I get told blanket ideas like "coffee is always bad for ME"


Maybe it would have been better for all of the options to read "MY ME/CFS ...." so we hear what people experience rather than what they think or have been told but don't know for themselves?

Thanks for the feedback everyone.
Sorry, Sushi, I didn't understand what you meant earlier.
I obviously haven't worded it very well!
I'll see if I can add the word "my", as suggested.

Like everyone else, I'm only interested in seeing how we all react to coffee, individually.
I thought it might be interesting.
I had assumed that there would be many different answers.

 

[lansbergen]

Coffee drinking did not feel good anymore. It is so long ago I can't remember what it caused. I know I did not like it any longer and switched to tea. I drink a lot of tea and I eat chocolate.

 

[golden]

Are we talking about coffee or caffiene ?

There is tons of caffiene in tea and chocolate....Just checking...

Its a good poll idea ...

 

[Bob]

golden. caffeine.

 

[golden]

Ah

I have a completely different reaction to the caffiene in chocolate to the caffiene in coffee ...

and for that matter , the caffiene in green tea .

 

[lansbergen]

Coffee drinking did not feel good anymore. It is so long ago I can't remember what it caused. I know I did not like it any longer and switched to tea. I drink a lot of tea and I eat chocolate.

I do not know it is the caffiene. More likely it is something in coffee that is not in tea/chocolate/tomatoes/patatoes.

 

[lansbergen]

Bob, to answer your question wouldn't one have to take pure caffeine?

 

[Bob]

Bob, to answer your question wouldn't one have to take pure caffeine?

If it was a scientific research project, then yes.
And there would have to be a placebo group of respondents!

Ah

I have a completely different reaction to the caffiene in chocolate to the caffiene in coffee ...

and for that matter , the caffiene in green tea .

I know what you mean; I react differently to different drinks.
I've always assumed that the different reaction is because coffee has by far the highest amount of caffeine in it.
I can't tolerate coffee, and I can only tolerate a very weak and milky tea.
Asking separate questions for tea, green tea, coffee, hot chocolate etc., would get a bit complex.

 

[golden]

If it was a scientific research project, then yes.
And there would have to be a placebo group of respondents!



I know what you mean; I react differently to different drinks.
I've always assumed that the different reaction is because coffee has by far the highest amount of caffeine in it.
I can't tolerate coffee, and I can only tolerate a very weak and milky tea.
Asking separate questions for tea, green tea, coffee, hot chocolate etc., would get a bit complex.

Overall , Caffiene is a disaster for me.

I can tolerate a bit when I am better but it gets me really high.

Then, there is a build up and it causes damage .

I tried green tea last month and it had very bad effects on me.

Its complex for me .

Dont know how accurate any of these caffiene facts are , but there is a chart of mg of caffiene in things.

It is a drug . I think its dehydrating qualities are the worst...

http://www.relfe.com/caffeine.html

 

[WillowJ]

I think it helps my OI in a moderate amount (vasoconstrictor, I guess). But if I have much, it increases my heart rate, and also I won't sleep.

I drink black and green tea in moderate amounts (if I have a second cup of black tea I will use decaffeinated) and have chocolate. I avoid coffee (if I sample that, I could have no more than 1/4 cup... it sure smells nice but it doesn't really agree with me).

 

[Bob]

There's only been about 25 respondents, so far, but there have been quite an interesting mix of answers.

It's difficult to make a proper analysis of the results mainly because people can select more than one answer, and partly because the questions have not been designed very methodically.

But I'll attempt to do a brief (totally unscientific) analysis on the results so far, just for interest (and I might do a bad job, so please don't rely on my analysis)...


It seems that no one finds large amounts of caffeine helpful with no serious consequences for their ME/CFS/Fibro symptoms.

And perhaps roughly about a third of people say that moderate to large amounts of caffeine are unsafe for their ME/CFS/Fibro symptoms.

And about 10% say any amount of caffeine is unsafe for their ME/CFS/Fibro symptoms.


22% say they can't touch the stuff because it messes up their system, but has no long-term consequences for ME/CFS/Fibro.


Only 14% say that small amounts of coffee are safe for their ME/CFS/Fibro, perhaps meaning that many of us might find larger amounts unsafe.

But about a third of people say that small amounts of caffeine are OK, when taken with caution. (That's probably my own situation.)

I think that only a minority (about 13%) say that (non-excessive) amounts caffeine has no adverse consequences for their ME/CFS/Fibro.


Summary:

So it seems that many (but I'm not quite sure what proportion - possibly a large minority or a small majority?) of us dabble with caffeine, at least occasionally, and at least a large minority of us can use small amounts caffeine safely, when used with caution. Many of us seem to find it useful at times. But no one can tolerate large amounts, and many of us (at least a large minority) find it harmful if taken even in moderate amounts. Quite a large minority (perhaps about a third?) don't touch caffeine.

I can't quite work out how many people use caffeine regularly, or at least sometimes. Perhaps somewhere between 40% and 60% use it regularly. (I should have asked that question!)


To do a better analysis, it would require a more sophisticated survey facility.

 

[Firestormm]

I can't find a caffeine poll on the forum, and I thought it might be interesting to create one.

I'm interested in people's own personal experiences with coffee.

Please select multiple answers - All that apply to you.

Everybody please answer the first question re post-exertional malaise, if you can, if answering any questions.

If post-exertional malaise is part of your illness, then please tick/check answer no1.
If not sure, then just answer whatever you feel is most appropriate for you, but it's not too important.

The first question is to see how relevant the poll is to ME/CFS patients who experience prolonged post-exertional malaise or post-exertional exhaustion (aka PENE.)

If I've not included any potentially helpful answers, then please say so on the thread.

Thanks Bob. I do have a poll and thread running about stimulants and caffeine is a common theme - but it's not a focus of the poll specifically.

I couldn't tolerate the stuff when I was (or if I return to) an 'acute' state. But I weened myself back onto it and now feel able to tolerate and enjoy coffee and tea once again.

I don't think there is a 'link' if that is what you are proposing between caffeine and PEM based on my own experience; I am still of the belief that caffeine and my nicotine puffer - enable me to continue in a cognitive task for longer.

No evidence of course other than my experience and an acknowledgement that addiction must surely play a part in my thinking

Wanted to add that Willhm has a thread running about feeling crap after naps and I'm about to comment.

I do feel that naps and sleep quality are adversely influenced by caffeine and/or stimulants generally; but that removing them completely still doesn't mean a decent restorative period.


Edit: I do sometimes find it hard to distinguish from 'affecting my ME' and 'affecting me generally'. Using the stuff now gives me the same positive reaction as it did before my diagnosis I just have to be more careful I guess...