Alcohol Intolerance poll. Please do the poll even if your answer is no.

Have you had alcohol intolerance with ME/CFS and what sort?

  • No

    Votes: 14 10.4%
  • Worsened 'hangover' effect the next day

    Votes: 43 31.9%
  • The taste became unpleasant

    Votes: 7 5.2%
  • Just 'put off' - I don't feel like having it

    Votes: 24 17.8%
  • Upset stomach - soon after

    Votes: 15 11.1%
  • Aggravation of ME/CFS symptoms soon after

    Votes: 66 48.9%
  • Pains elsewhere

    Votes: 10 7.4%
  • Other unpleasant symptoms

    Votes: 60 44.4%
  • I've been avoiding alcohol for so long now that I can't remember the symptoms that led me to avoid

    Votes: 18 13.3%

  • Total voters
    135
More on that, the rabbit study above reported the endothelin-1 synthesis is decreased by alcohol.

About endothelin-1:
ET-1 is a potent vasoconstrictor, meaning it causes blood vessels to constrict or narrow. ET-1 has been shown to be one of the most potent vasoconstrictors. Vasoconstriction is mediated principally by ETA receptors on the underlying smooth muscle, where a small proportion of ETB receptors may also be present.

There is a bit of evidence that endothelin-1 is increased in ME/CFS e.g. in two studies by different teams:

The ET-1 concentration was significantly elevated in both ME/CFS and PCS patients compared to HCs and PCHCs.
But they did find some differences between the two groups of patients combined and the healthy controls. It looks like patients had lower activity levels, worse sleep quality, a worse lipid profile and higher levels of endothelin-1 and VCAM-1.

What if over-production of endothelin-1 in ME/CFS was an adaptation to poor control of blood vessels because the peripheral vascular nerves aren't working properly? (or maybe a deficiency of effective endothelin-1 receptors?) And what if alcohol stopped that adaptative increased endothelin-1, resulting in even worse vasodilation and lack of a constrictive response?
 
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I think this is a really interesting question. However the poll doesn't seem to have a box which corresponds to the best description of the reaction I have WHEN severely alcohol intolerant. In that case for me it is like rapidly feeling "poisoned" or more specifically the Disulfiram + alcohol reaction as I have understood it from reading descriptions (I don't have personal experience of that medication). This never happened to me prior to ME/CFS

The really confounding thing is that this comes and goes and doesn't necessarily correlate with severity in my case. When I am intolerant it is bad enough for me to give up alcoholic drinks for several years, which I have done and then found, perhaps by chance, that I can tolerate some and go back to drinking a bit for several years. Until it comes back...!
 
I think this is a really interesting question. However the poll doesn't seem to have a box which corresponds to the best description of the reaction I have WHEN severely alcohol intolerant. In that case for me it is like rapidly feeling "poisoned" or more specifically the Disulfiram + alcohol reaction as I have understood it from reading descriptions (I don't have personal experience of that medication). This never happened to me prior to ME/CFS

The really confounding thing is that this comes and goes and doesn't necessarily correlate with severity in my case. When I am intolerant it is bad enough for me to give up alcoholic drinks for several years, which I have done and then found, perhaps by chance, that I can tolerate some and go back to drinking a bit for several years. Until it comes back...!
Yes it’s odd how it comes and goes isn’t it!
 
I think this is a really interesting question. However the poll doesn't seem to have a box which corresponds to the best description of the reaction I have WHEN severely alcohol intolerant. In that case for me it is like rapidly feeling "poisoned" or more specifically the Disulfiram + alcohol reaction as I have understood it from reading descriptions (I don't have personal experience of that medication). This never happened to me prior to ME/CFS

The really confounding thing is that this comes and goes and doesn't necessarily correlate with severity in my case. When I am intolerant it is bad enough for me to give up alcoholic drinks for several years, which I have done and then found, perhaps by chance, that I can tolerate some and go back to drinking a bit for several years. Until it comes back...!
Important variable.

Sometimes a drink or two can be fine, at least at the time of drinking. It has the normal expected pleasant effects. At other times it feels unpleasant pretty quickly, within maybe 10 min. The 'poisoned' sensation, as it were.
 
Interesting that there are people talking of a variable response. Not something those of us who don’t drink can attest to but I guess it’s possible we’d see the same. The talk of experiments ‘for science’ becomes more appealing!

They also mention botulinum toxin as achieving the same effect - stopping vascular nerve function results in vasodilation and a lack of ability to constrict when faced with a challenge

What if over-production of endothelin-1 in ME/CFS was an adaptation to poor control of blood vessels because the peripheral vascular nerves aren't working properly? (or maybe a deficiency of effective endothelin-1 receptors?)

I’m interested in how vascular nerves could fit in and wonder about correlation with other nerve problems often mentioned (peripheral neuropathy, small fibre neuropathy). And the studies which have shown endothelial dysfunction of some sort.

Difficult to survey the latter but maybe we can get an idea of prevalence of the former from people here?
 
This is very much my experience too, horrendous flulike/toxic-type symptoms and muscle weakness. And beyond that, I even get a bad reaction to alcohol-containing cosmetic items such as deodorants and skin lotions. Just the smell makes me feel 'off'.


I developed intolerance to caffeine. Didn't have intolerances to either alcohol or caffeine before I got ME.

ETA: Interestingly, a doctor I saw a while back said my blood tests showed something odd to do with liver function - she remarked she had only seen that in alcoholics, so didn't know what to make of it with me, as she knew I don't drink. If this result happens in people with ME, I wonder what the mechanism might be behind that?
Could this be why Naltrexone (low doseage) can have a beneficial effect for ME sufferers ?
 
I use alcohol as a drug to dampen brain activity. I use measure out less than an ounce (one ounce=a "drink") of vodka into an iced diet lemon lime soda and add fresh lime juice.

I drink this usually before 3pm, so it doesn't interfere with sleep (awakenings) as much. It is also feels justified on hot days or coping with the constant stress of political news.

Alcohol's effect is immediate, which is useful.

I drank alcohol yesterday after a 90 minute shopping trip (Trade Joe's--an Aldi-like store) toward the end of which I became hyper, almost manic from exceeding my energy limits and being exposed to stimulation. I struck up a convo with a fellow shopper as though I was doing stand-up comedy. That's my last gasp. Made a new friend, phone numbers exchanged but price paid.

Shopping there was a novel or rather non-routine experience and I couldn't just get in, get out in 15 minutes.

I couldn't turn off my hyperactivity when I got home, like a wind-up toy. Only after a bit of alcohol's CNS depressant effect did I finally begin resting--it took me 3 hrs of manic thinking before I realized I should try a my vodka drink. I had it and then managed to lie down in my usual resting spot on a heating pad and begin the recovery..

So, despite the warnings about the risks of alcohol to health, I am currently using it in small doses, after an 8-month period of easy abstinence, initally resuming imbibing due to a certain USA election result.
 
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