Alcohol intolerance in ME/CFS - Includes a poll. Please do the poll even if your answer is no.

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

  • No

    Votes: 16 9.5%

  • Worsened 'hangover' effect the next day

    Votes: 53 31.4%

  • The taste became unpleasant

    Votes: 8 4.7%

  • Just 'put off' - I don't feel like having it

    Votes: 27 16.0%

  • Upset stomach - soon after

    Votes: 18 10.7%

  • Aggravation of ME/CFS symptoms soon after

    Votes: 83 49.1%

  • Pains elsewhere

    Votes: 12 7.1%

  • Other unpleasant symptoms

    Votes: 68 40.2%

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

    Votes: 24 14.2%
  • Total voters
    169
Now when I read this thread I would say that it´s another kind of malaise, it´s different to feel poisoned but it´s also different to an ordinary ME/CFS malaise which I have every day. The question for me is if it´s something else than the normal hangover. It´s definetly stronger so we can have impression that it´s something else but maybe it´s just stronger because we are sick and it usually comes after much smaler amount of alcohol. Difficult to say. Anyway when I was healthy and drunk much more I never felt such a "hangover".
 
I've been thinking about the representativeness of the poll, and whether a better way to do a poll on alcohol intolerance here on S4ME would have been to create a list of, say, 100 forum members according to some criterion that wouldn't have biased the poll in any obvious way, and directly invited them to participate. That would have got around the problem of people only answering if they had alcohol intolerance, or reading the thread and being swayed by it before they answered (this problem also applies to the MEA's survey, of course).

But then I thought about what would be the most scientific way to get a proper sample and I thought of DecodeME. If we teamed up with them, we could ask them to select a random sample from those participants who agreed to take part in further research.

If you come up with a hypothesis in relation to alcohol intolerance, @Jonathan Edwards, I wonder if we could use DecodeME (and possibly its DNA data) to refine or test it?

@Simon M
 
Sasha said:
Decades ago, somebody (can't remember who) suggested that fermentation in the gut (dysbiosis, presumably) was producing alcohol in the bloodstream. I can't remember who that was but I think it was a speculation about PwME. Can't remember if there was any basis in data.
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Here's a reference - auto-brewery syndrome! From 2019, so years after I heard about it.

Oh... and here's Dr Sarah Myhill on it...
 
Ravn said:
Question for those of you who use the term poisoned:

Do you think you use it for the same constellation of awfulness that others might use the term malaise for? Or do you use both terms to separate between two different phenomena?

I don't use the term poisoned myself because I associate it with my one experience of food poisoning which had me in the bathroom with my head over the toilet for hours and that's not something ME does to me, but I gather that's not what most pwME mean with feeling poisoned
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I would say so myself. Slightly more pronounced on some aspects. Maybe more migrainy, if that makes sense. With some of the kind that comes with acute illness. I had COVID 2 months ago and there's some of that in there. Feels like being starved of oxygen, maybe being in a low oxygen environment, but without significant respiratory compensation.
 
For me the feeling of poison is something that’s all over.

I’m not thinking of a gastric poisoning, but rather more like there’s something ick in the blood.

It’s a fizzing or slight tingling sensation that could be like a mild electrical effect.

I feel this almost all over my body, but most noticeably on my tongue, legs (skin & muscles) and on head and neck. I’m more sensitive to sound and light then too. (Though I get migraines so that could be linked to them instead of ME).

Sometimes I think it’s like an all over lactic acid burn and I occasionally take bicarbonate thinking it might help. (I not sure if it really does to be honest )

It’s hard to describe. But I can also get these sort of symptoms from over exertion
 
Sasha said:
Here's a reference - auto-brewery syndrome! From 2019, so years after I heard about it.

Oh... and here's Dr Sarah Myhill on it...
Click to expand...

Thanks for the Sarah Myhill reference. A very clear article about alcohol intolerance.

There's also fermentation in the muscles in anaerobic metabolism, when there is not enough oxygen. I have no idea if that might result in alcohol related metabolites.

Auto-brewery syndrome (ABS) seems quite difficult to diagnose. Maybe some ME/CFS patients might have it.
 
I can see the discussion has somewhat moved past the 'poisoned' label, but as someone who has been poisoned (near fatally - I wound up in a coma in the ICU) I feel like it is the best term for what I experience with alcohol.

It is:
- sudden onset (or at least sudden realisation that it is present)
- cognitive, movement and sensory difficulties - a bit like the way that someone being drugged is represented in movies: slurred speech or difficulty forming sentences, world spinning a bit, auditory muffling or distortion, falling or the inability to complete movements without mistakes like knocking something over
- overwhelming sense that I need to leave the situation
- feeling like there's something in my body that I need to get out, sometimes accompanied by nausea or diarrhea, but not always. it definitely feels like "it's in every cell" but I don't know how to communicate that feeling without that abstraction.
- a slowing down of my thoughts and ability to process, but which coexists with a kind of panic

It kind of feels like the worst parts of being very drunk (or on LSD) without any of the pleasant or pro-social bits.
 
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I wrote earlier that alcohol doesn't affect my ME symptoms although I can't drink as much anymore which I put down to aging.
That's all true but to be specific, I only drink about 3 standard drinks of spirits per week on separate days. Wine worsens my headache and I have never drunk beer.
 
bobbler said:
Here's another random one. At the times where I was more up to drinking, trying to 'norm' somewhat eg as a student etc and getting away with it by sticking mainly to vodka and a lot of mixer (which was also really useful as a 'normal drink' for weddings or anything else because people don't know if you've got a soft drink in your hand or not) but sometimes the pre-bottled stuff. Well even then there was a really obvious time-of-day-effect I noticed (well it's not a case of notice with these things is it, because it bangs you over the head).

Evening and night ie proper evening was 'OK' from a tolerate it (ie doing it at the time within my various limits, hangover a different matter of course) vs I could not daytime drink at all. I mean not that I ever saw the attraction but I remember trying to join those who wanted to eg on a Sunday as an alternative to 'a night out' and realising it was a dead loss because one drink at 9pm was I estimated 3-4 times stronger in its effect during the day. I remember describing it as that at the time having tried a few times and eventually just saying it to people as how I was quite astounded, and that being why I wouldn't be joining them (in a tipple until much later)

So half an alcopop sent me home to bed and incapability at 4pm on a day where I hadn't been sleepy. It was useful to know because it meant those odd work occasions where you get a toast that wasn't wine-based anyway during the day I absolutely had to go to the level of 'make a point' refuse if needed. Even after-work drinks 6pm onwards would be in slightly better but still not great territory timing-wise so normally didn't (as well as other reasons).

I don't know whether this was due to other comorbidities I have that were untreated back then and will say that potentially I remember the odd holiday when I could go on them where I might have had a few in the day and got away with this, though they would have been very watered down whatevers and certainly not particularly early on in the day (but you know I was well enough to fly and still leave the room, plus time differences).
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Interesting - I slowly tapered off day drinking as it made me incredibly drunk and insensible when I was mild, plus I’d get a hangover by tea time and need to go to bed early.
 
EzzieD said:
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?
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The fastest growing health condition in North America today is "non-alcoholic fatty liver disease". Apparently this is something new as in the past fatty liver disease was usually only found in alcoholics. It is caused primarily from a poor diet high in sugar (including glucose from white bread/pasta, white rice, canned, frozen, and packaged ready made foods, fruit juice, etc.). I know a few women who have been diagnosed with this in the past few years and they all have a sweet tooth.
 
We now have over 100 votes so I shall welcome discussion of interpretation.

The first thought for me is that the effect reported does not look like just an Antabuse reaction to acetaldehyde due to a metabolic failure. (That would have weighted everything to hangover.)

The second is that the results look very much as we now see have been found before. About 90% of respondents have some problems.

The third is that there does not seem to be much induction of pain. Alcohol produces local pain in Hodgkin's disease and that sort of reaction would not seem likely in ME/CFS but it is of note that this is confirmed.


I am getting the impression that the main effect may be a hypothalamus mediated 'negative' signal that somehow feeds in to the whole ME/CFS symptom complex as soon as the alcohol level rises. This need not have any specific symptom of its own.

I have a suspicion that human beings normally have two opposing hypothalamic responses to alcohol. The first is a negative signal - maybe a non-specific warning - which is often encountered when first using alcohol and for some people remains the dominant response, so the person becomes a life-long non-drinker. Interestingly, I was reminded of this response recently because I have been drinking only Corona zero before dinner to cut back on alcohol and when I was offered a rum and ginger instead I felt quite unpleasant about twenty minutes later. The second response is the euphoric response that drives usage and for some addiction.
 
Jonathan Edwards said:
We now have over 100 votes so I shall welcome discussion of interpretation.

The first thought for me is that the effect reported does not look like just an Antabuse reaction to acetaldehyde due to a metabolic failure. (That would have weighted everything to hangover.)

The second is that the results look very much as we now see have been found before. About 90% of respondents have some problems.

The third is that there does not seem to be much induction of pain. Alcohol produces local pain in Hodgkin's disease and that sort of reaction would not seem likely in ME/CFS but it is of note that this is confirmed.


I am getting the impression that the main effect may be a hypothalamus mediated 'negative' signal that somehow feeds in to the whole ME/CFS symptom complex as soon as the alcohol level rises. This need not have any specific symptom of its own.

I have a suspicion that human beings normally have two opposing hypothalamic responses to alcohol. The first is a negative signal - maybe a non-specific warning - which is often encountered when first using alcohol and for some people remains the dominant response, so the person becomes a life-long non-drinker. Interestingly, I was reminded of this response recently because I have been drinking only Corona zero before dinner to cut back on alcohol and when I was offered a rum and ginger instead I felt quite unpleasant about twenty minutes later. The second response is the euphoric response that drives usage and for some addiction.
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Could one switch between the two, and why?
 
EzzieD said:
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?
Click to expand...
TigerLilea said:
The fastest growing health condition in North America today is "non-alcoholic fatty liver disease". Apparently this is something new as in the past fatty liver disease was usually only found in alcoholics. It is caused primarily from a poor diet high in sugar (including glucose from white bread/pasta, white rice, canned, frozen, and packaged ready made foods, fruit juice, etc.). I know a few women who have been diagnosed with this in the past few years and they all have a sweet tooth.
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Ironically, I don't eat ANY of those sorts of foods and don't have a sweet tooth, preferring savoury foods - I eat a super-healthy wholefood organic diet, no sugar, no white flour products, no ready meals, no packaged foods, no junk foods whatsoever. Just fresh raw vegetables and meats to make homemade meals from, nuts, seeds, live yoghurt, whole grains eg brown rice, quinoa, wholemeal bread (rye, as ME somehow made me allergic to wheat) and so on. The one thing I will not scrimp on is super-healthy food; will scrimp on anything but that, because I found it makes a difference to my overall health so I stick to it. So my strange liver results remain a mystery!

Regarding fatty liver, I have come across various references over the years to people with ME being thought to have fatty liver. I wonder if anyone else here remembers this? The one specific mention I do remember was in the case of Sophia Mirza: http://www.investinme.org/article-050 sophia wilson 01-rip.htm : "Sophia had a high BMI when she died and a “fatty” liver."
 
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