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Caffeine poll - safe or unsafe, helpful or unhelpful

Discussion in 'Lifestyle Management' started by Bob, Jun 14, 2013.

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Caffeine - is it safe and helpful for you?

  1. My illness involves prolonged post-exertional malaise--everyone please answer

    61.4%
  2. Caffeine is always helpful, with no serious consequences for my ME/CFS/Fibro

    2.3%
  3. Caffeine is sometimes helpful, with no serious consequences for my ME/CFS/Fibro

    13.6%
  4. Caffeine is usually helpful, but it has consequenses for my ME/CFS/Fibro--I have to moderate intake

    20.5%
  5. Large amounts are safe for my ME/CFS/Fibro

    4.5%
  6. Small amounts are safe for my ME/CFS/Fibro

    18.2%
  7. Small amounts are OK for me, if taken with caution

    20.5%
  8. I try to avoid it, but it's sometimes helpful

    15.9%
  9. It doesn't agree with me, but is not dangerous for me

    2.3%
  10. No effect on me at all

    2.3%
  11. Large amounts are unsafe for me and adversely affect my ME/CFS/Fibro

    20.5%
  12. Moderate amounts are unsafe for me and adversely affect my ME/CFS/Fibro

    20.5%
  13. I can't touch the stuff - It messes up my system in various ways, but has no long term consequences

    20.5%
  14. I can't touch the stuff - It has a dangerous adverse effect on my ME/CFS/Fibro

    15.9%
  15. I hate tea/coffee/cocoa, so I rarely have any caffeine

    0 vote(s)
    0.0%
  16. Not sure (I haven't decided)

    4.5%
  17. Caffeine has no adverse effect on my ME/CFS/Fibro, but has other undesirable consequences for me

    6.8%
Multiple votes are allowed.
  1. Jarod

    Jarod Senior Member

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    planet earth
    Hi folks,

    Caffine. Something I'm very aware of. Long story.

    Last year I worked, had to quit caffine completely because it just made me so fatigued, anxious, spaced out etc. It took many months to realize the benefit from quitting.

    I later found out when trying methylation, one cup of caffine could throw off my methtylation for days. If I drank caffine for a month or so, it could take weeks to get methylation going again.

    In my case, I suspect caffine causes excitoxicity and this results in some mild but cumulative nerve damage or something.

    I'm also wondering if affects uptake of certain nutrients?

    Stuff is addicting too. Makes it hard to quit.

    I forgot to vote on PEM. I do have post exertional malaise.

    i put down I can't touch the caffine, but I do anyway and pay for it.
     
    rosie26, golden and Bob like this.
  2. Bob

    Bob

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    I forgot as well, and I wrote the survey!!! :rolleyes: :sleep:
     
    Firestormm likes this.
  3. John H Wolfe

    John H Wolfe Senior Member

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    Along with alcohol, caffeine is a 'natural toxin' that has cropped up numerous times in my research as a no no; indeed this is born out by the experience of many PWME, including myself. From my protocol:

    "Avoid stimulants: Including adrenaline packed computer games (as above), ME/CFS is a neuroendocrine disorder, we have enough problems as it is without adding a steady flow of adrenalin into the mix! Caffeine and other stimulants can stay active in the system for 12 hours or more and, besides interfering with natural bio-rhythms (vital for proper rest/repair), they often have irregular effects on those with ME/CFS or FM. All forms of caffeine are known to irritate the bladder and it can also contribute to blood sugar level instability"

    In my hypothesis article I also suggest that such stimulants are unhelpful at the level of general overstimulation of systems such as the sympathetic nervous system - which plays an important role in the symptomatological expression of the illness
     
    golden likes this.
  4. Firestormm

    Firestormm Guest

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    I know. We can all live in a bubble and not even try to experience the 'real world'. That didn't work for me. Trying things does. Nice protocol, John. If you live on the moon.
     
    Valentijn likes this.
  5. Kina

    Kina Moderation Team Lead

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    Alcohol is more than just a 'natural toxin'. It is a poison, it causes lysis of cells. It can cause severe brain damage to a fetus when a mother drinks excess amounts. Drop a raw egg in alcohol, it will cook slowly.

    As an advocate for children and adults with FASD, I think the term 'natural toxin' is erroneous -- coffee and alcohol are not in the same category of 'natural toxins'. One can cause mental retardation and is the leading cause of mental retardation in children.
     
    Valentijn likes this.
  6. Bob

    Bob

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    I'd really like us to stick to personal experiences, on this thread, rather than introducing hypotheses and theories.
    The poll strictly relates to personal and individual experiences with caffeine.
    There is plenty of space elsewhere on the forum to discuss hypotheses etc.

    Discussing hypotheses might lead to heavy and argumentative discussions, whereas the poll and this thread were intended to be a simple, light-hearted, and interesting (but non-scientific) insight into our individual experiences.
     
    madietodd, ahimsa, Valentijn and 4 others like this.
  7. golden

    golden Senior Member

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    Bob ,

    Given the poll , and now realising I am not the only one - it startled me when I went to two different ME support groups - and I was ONLY offered Caffienated tea or coffee.... There was no alternative . I did feel excluded .

    I found this really unhelpful and unsupportive for my health .
     
  8. Bob

    Bob

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    People don't always think things through, and aren't always fully aware of all our sensitivities. I took a shop-bought quiche to a meeting with friends once, and I was (rightly) criticised (in a friendly way) for being insensitive to everyone's allergies. (I was in a rush, and just hadn't thought about it carefully.)

    Like you say, at least this poll lets you know that you're not alone in needing non-caffienated drinks.
     
    golden likes this.
  9. golden

    golden Senior Member

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    It did make me feel better . yes.

    But these are ME charity groups - with funding to support ME people .

    I did mention it . Nothing was done . Upon supplying my own herbal tea bag - i became the odd ball .

    I actually found it quite upsetting ha ha thats really silly but there you go! I guess it was the expectation of support and understanding .... NEVER have this then never get upset :)

    The other place I have heard of providing coffee mornings for M.E. is part of the NHS CBT service .

    That adds an additional problem for me since I suspect there are adrenal issues too which arent being tested for. And Coffee is being offered .
     
  10. Bob

    Bob

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    Yes, I'm very familiar with that experience! I'm always taking my herbals with me when I visit people.

    It can be a bit embarrassing at times, but people are usually fine with it, after a bit of gentle mocking!

    And sometimes I have tea without the teabag (just milk and hot water), which is surprisingly fine, and not as horrible as it sounds!

    Talking of herbal teas, there are only two herbals that I enjoy...

    One is hibiscus. This brand (Hambleden Herbs - click here) is really tasty and fruity, and can be drunk hot, or left to cool down and drunk as a refreshing cold drink.

    And the other one (Yogi Classic - click here) is a real tea substitute (for me, it tastes similar to tea). It's non-caffeine (there's no tea in it) and it's just very mildly and gently stimulating (from the spices). I like to have a lot of milk in it.
     
    golden likes this.
  11. Kina

    Kina Moderation Team Lead

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    I drink two cups of coffee every morning with no ill effects, it would be the third one that starts causing symptoms. I only drink instant because brewed has way too much caffeine. There are days when I can't drink it all and I am aware that it is one of those days right from the moment I wake up. I find caffeine helps drag my mind out of the murky fog in the morning.

    Here's an old article from 2002 regarding caffeine -- http://www.sciencedaily.com/releases/2002/11/021119073402.htm

    Interesting, maybe since I have been drinking coffee for over 30 years, I have developed a 'tolerance' to it.
     
    Bob likes this.
  12. SOC

    SOC Senior Member

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    I don't tolerate caffeine well at all. My BP and HR climb rapidly under good circumstances and caffeine only aggravates that. On rare occasions I have taken caffeine in tea/soda if I had something important to me that I needed to be not exhausted for at a bad time of day for me (graduation, wedding). It would make me feel more alert for a while, but the downstream consequences over the next few days were not good. I would be more tired, more quickly reach my AT (so less functional), and have a higher BP and HR for days. Overall not a good strategy except under very special situations for which I was willing to pay the consequences.

    I've been off caffeine for about 6 years on the advice of multiple ME/CFS docs. For me, it's important to do so. I suspect that I "abused" caffeine for years (before diagnosis) as a way to keep moving when my body was telling me to rest. It was artificial energy for me. I felt better with caffeine, but I paid in the long run by pushing my body beyond it's natural limits.
     
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  13. John H Wolfe

    John H Wolfe Senior Member

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    Fair enough. I'm not saying don't try things and find out if they work for you, I'm just saying that I've encountered issues with these substances, as have others, and that I've also come across a surprising number of reasons as to why they could be doing us harm/a bad idea

    Haha, thanks - I'll be sure to add that endorsement to my space-spiel when I go inter-galactic :)

    Agreed - I'm just reluctant to be too forthright with my terminology here, in case things get misinterpreted/political/I get jumped on by someone.. (again) :eek:
     
    golden likes this.
  14. golden

    golden Senior Member

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    I dont mind hot water actually :) Just not the comments it engenders

    I like loads of herbal teas - nettle tea , All the yogi teas , (Classic is good ) Ginger tea , Clippers Dandelion tea , the best popular fruity one is raspberry vanilla and ginseng :) All delicious, health boosting refreshments :)
     
    Bob likes this.
  15. IreneF

    IreneF Senior Member

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    I love coffee. I drink between 2 and 4 cups daily. It's one of the few things that helps me, even though the effect is mild and doesn't last long. I've been drinking it for over 40 years.
     
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  16. SOC

    SOC Senior Member

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    It's interesting that you guys catch flack for not drinking caffeine. I've never drunk coffee, although I often drank tea at business functions. Even then, herbal was often available. If not, hot water, milk, and sugar never raised eyebrows. No one ever commented on my choice of drink. Funny how some people need to comment on every little thing other people do, especially if it's different from the way they do things. Seriously, who cares about stuff like that?
     
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  17. WillowJ

    WillowJ Senior Member

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    my disease does involve prolonged post-exertional malaise, but I didn't read the question correctly at the time i was answering the poll (thought it was asking if coffee cause this for some reason) so didn't tick that box.
     
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  18. Valentijn

    Valentijn Activity Level: 3

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    Yeah, I did the same :p
     
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  19. Bob

    Bob

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    lol, never mind. I forgot to click on it as well! So maybe we can just ignore the answers for that particular question. I was surprised at how low it was.

    It's very difficult to analyse this survey anyway. We'd need to set one up on a specialised survey website, with more functionality, to properly understand the answers.
     
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