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: 13 10.2%

  • Worsened 'hangover' effect the next day

    Votes: 38 29.9%

  • The taste became unpleasant

    Votes: 7 5.5%

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

    Votes: 22 17.3%

  • Upset stomach - soon after

    Votes: 12 9.4%

  • Aggravation of ME/CFS symptoms soon after

    Votes: 63 49.6%

  • Pains elsewhere

    Votes: 9 7.1%

  • Other unpleasant symptoms

    Votes: 58 45.7%

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

    Votes: 18 14.2%
  • Total voters
    127
EzzieD said:
I guess I didn't describe that well enough
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No, you did, it was just my weird obsession! :)

EzzieD said:
Yes, that seems exactly it, after waking up feeling like I'm at death's door I do a bunch of stretching, yawning & deep breathing in bed and it makes me feel like toxins that accumulated during sleep are being 'flushed out'. It improves further when I get up and walk around and get the circulation going, although hard to do because I feel exhausted after the night's sleep. So I then have to go sit down and rest for a while after all that! And then I feel a bit more what passes for 'normal' for us and can get on with making breakfast etc.
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Yes, exactly this! Any people feeling 'poisoned' by alcohol finding that if they move around, it helps get rid of the poisoned feeling?
 
I used to be what would now be called heavy binge-drinker. It was relatively common in my student days and in the year in France I spent afterwards to drink to oblivion. In fact I used to do it at least twice a week (after the Wednesday and Saturday games at university; after Wednesday training and Sunday match in France) and sometimes more.

When I got ME, I just didn't want to drink. There is a sense that I am trying to clear my head of the illness and the last thig I want is to fog it up more with alcohol, but there is something more. It just doesn't appeal to me. Or rather it didn't in the first few years after getting ME. The question just hasn't arisen since really as I've now lived decades without alcohol, can't afford to drink it and am never in a position to do do. But I still also feel the aversion.
 
I wonder if there is any relationship between alcohol intolerances and the other food intolerances I experience.

The effects of alcohol on me are less predictable than other intolerances:
  • Gluten - get a migraine almost exactly 24 hours after consumption as well as worsening of any general PEM symptoms and then IBS symptoms
  • Coco cola - get a migraine 6 hours after consumption followed by general fatigue and yuckiness (don’t know if this is the sugars or caffeine, as I don’t drink tea or coffee).
Mostly my intolerances produce effects that can also occur as PEM, but they now occur regardless of my concurrent ME status.
 
Sasha said:
Yes, exactly this! Any people feeling 'poisoned' by alcohol finding that if they move around, it helps get rid of the poisoned feeling?
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I'd be really interested to know too, as I've never known it triggered by anything I've eaten or drunk. But if it is sometimes a consequence of alcohol, it's probably unlikely I'd get it anyway. I can barely manage a single unit before the nausea, headache and muscle pain kick in—that's quite unpleasant enough, but it's not the same as the 'poisoned' phenomenon.

For me it's a facet of severe, compounded PEM, and only recovering to a lower level of PEM makes it go away. It takes months rather than days or weeks.

It's possible it's not a universal symptom, as it seems to be instantly recognisable to folk who've had it. It's distinctive the way toothache is, and likewise there are only so many useful words for it.
 
Peter Trewhitt said:
I wonder if there is any relationship between alcohol intolerances and the other food intolerances I experience.
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I think there's a relationship for me. The only other time I've had the sudden severe drowsy fatigue that I experienced with higher percentage alcohol is when I was trying to put on weight, and introduced a smoothie between breakfast and lunch. Just as with alcohol, it felt like someone had injected me with sedative.

I finally figured out that my breakfast was already running up against FODMAP green serve limits for fructans and GOS (banana, oats, almond milk), and the smoothie was tipping me well over (almond milk, almond
butter, oats, dates, cocoa powder). So it may have been a FODMAP issue. Alternatively, something else about one or more of those ingredients might have created the sudden sedation.

I could halve the sedation by halving the smoothie. But ultimately I had to lose the smoothie as that level of drowsy fatigue was not sustainable. Which was a shame because it was delicious.

Changing to a low-FODMAP diet and then repeatedly trying (and largely failing) to reintroduce higher FODMAP foods over the past few years has clarified that higher FODMAP foods affect my cognition, regardless of whether they disturb my stomach/bowels. That is not something I was aware of before.
 
Nightsong said:
I think I understand what people are talking about with the "poisoned feeling", but not entirely sure, so perhaps we should explore it some more - during some crashes, there is a phenomenon where I feel as though I am becoming progressively but dramatically weaker over the course of hours, accompanied by severe pain of a burning character, along with very significant cognitive dysfunction and waves of nausea along with all the usual ME symptoms cranked up to 11. There is no option but to lie entirely still and motionless, even though there is an abysmal tempest (to crib a line from Dante) going on within. All sensory aspects are heightened dramatically, which is quite odd as one's senses are heightened and yet cognition is dulled. Even drawing breath seems painful & effortful. It seems to reach a plateau over a number of hours, remain at its peak for between a few hours to a day or two, and then subside over a number of hours more. Is this what we are talking about with "poisoned", or something more limited, not crash-related?
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The feeling poisoned bit, in itself, not just related to drinking alcohol, is hard to reconcile because of slight variations between people and how we experience reality. We are basically all trying to describe a color that we can all see but without any reference point as to what other people are looking at, and without a common vocabulary for it. But it's clear how much overlap there is between those.

It's heightened with PEM, more so during crashes, but always present. Reading through some descriptions, it made me think of a fully-body (and I do mean full, not just all over but literally everywhere, all the way to the core) equivalent of burning muscles from exercising to exhaustion. What's often called the 'lactic acid' burn, but is probably not really accurate.
 
rvallee said:
The feeling poisoned bit, in itself, not just related to drinking alcohol, is hard to reconcile because of slight variations between people and how we experience reality. We are basically all trying to describe a color that we can all see but without any reference point as to what other people are looking at, and without a common vocabulary for it. But it's clear how much overlap there is between those.

It's heightened with PEM, more so during crashes, but always present. Reading through some descriptions, it made me think of a fully-body (and I do mean full, not just all over but literally everywhere, all the way to the core) equivalent of burning muscles from exercising to exhaustion. What's often called the 'lactic acid' burn, but is probably not really accurate.
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It would be interesting to see how it’s described in other countries/cultures.


In life I’ve been “poisoned” by alcohol (over consumption and “dodgy” holiday drinks decanted into name brand bottles known as “petrol”) and there was once a dodgy carbon dioxide leak which made us all sleepy one day at Uni. I’ve had food poisoning which means spending a lot of time in the bathroom.

When I have a migraine I feel awful, but I know that it isn’t poisoning because I know what a migraine is. If I didn’t know, would I describe it as being poisoned? Possibly, especially due to the postdrome aka “hangover” the next day. You’ve got pain, nausea, headache, but no temperature or shivers or sneezes.
 
So back in the early and more severe stages of my ME life (2012 - 2016) I was very alcohol intolerant. I have always enjoyed red wine, but it started to make me feel “off” almost at once.

A single glass set off an adrenaline-like response, but not in a pleasant way. I got restless, uncomfortable, and had a racing brain but couldn’t concentrate on anything. Nothing felt right, tinnitus, jumpy legs, tight muscles, headache, couldn’t settle my mind or body, and I definitely couldn’t sleep it off. It was not unlike the response to doing too much physically. I stopped all alcohol for a long time. It was I suppose like a poison to my system.

Since 2016 I have been less severely affected by ME, and so I have gradually tested what I can tolerate.

Basically I can now have the occasional small glass of red wine with few adverse effects. On the rare time I think I can cope with a second, I quickly realise that really I can’t. The indulgence will be followed by a really broken night, with jumpy legs, general ick, and a mind that won’t shut up and let me rest. Not nice..

So I’m now a total lightweight. One small glass of red is really my limit. :p
 
I believe this thread and poll is very important and seeing that some members have mentioned the liver, I would like to give my two cents :

-Alcohol is a toxin. The liver is the organ responsible for most of detoxification that is taking place in the human body.

-Regarding detoxification , from Jackson Labs Dr Shuzhao identified increased levels of xenobiotics in ME/CFS patients : https://twitter.com/user/status/1816144339195641960
. Apart from Dr Shuzhao , 2 other studies have found elevated Butyrylcholinesterase in LC and ME/CFS patients. Assay of BCHE can be used for (surprise,surprise) assay of Liver function test

https://twitter.com/user/status/1782060521283301515




-Medications are being metabolised by the liver. Impaired liver function raises the risk of adverse events.

-In 2018, -I believe that @Jonathan Edwards was also there during my presentation- at the London School of Hygiene and Tropical Medicine I presented my work where using several analytical methods I generated a hypothesis that a liver injury is responsible for the initiation of ME/CFS and similar syndromes such as GWI.

-In the following slide #56 from this presentation ,I hypothesised that patients with ME/CFS have less than optimal liver function. This is why many patients when asked, say that they couldn't tolerate alcohol even before ME or that they "simply do not like drinking". Note in the slide also the mention on UPR (Unfolded Protein Response) that @Murph mentioned in this thread and ER Stress (Endoplasmic reticulum stress) that Dr Hwang has found with protein WASF3. Again, this was in 2018.

Screenshot 2024-11-02 at 18.14.33.png



-There were also slides that showed snapshots of patients discussing liver function. For those who have Liver function tests (LFTs) normal, unfortunately normal LFTs DO NOT rule out liver disease.

Screenshot 2024-11-02 at 18.24.05.png



-Finally, fast forward in 2024, we have @Chris Ponting study which has identified liver issues.

-A question that I have for those who mention that they feel better with alcohol, does this include cases where they had too much or this positive effect is achieved only with a tiny dose?

Please forgive me for coming up as a bit edgy but for so many years (since 2017) I am asking again and again for researchers to look more closely at the liver of ME/CFS patients.
 
I think what I was describing in my last post was more what others have characterised as a "crash within a crash", or "compounded PEM". Reading others' descriptions of the "poisoned" feeling more closely I have experienced this but only 2 or 3 times.

On alcohol intolerance: do people find there is a difference between different strengths of alcohol - does the intolerance correlate with alcohol %/content? And also: are there any particular drinks that stand out as triggers where the problem might not be related to the ethyl alcohol itself (red wine, for instance, has higher levels of tyramine if I recall correctly)?
 
mariovitali said:
I believe this thread and poll is very important and seeing that some members have mentioned the liver, I would like to give my two cents :
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Thanks for the input @mariovitali. At this point I am trying to steer clear of too much mechanistic discussion so as not to bias voting but this sort of discussion will be useful when we have got a full poll.

We are up to around 89 voters now. I will probably let it run another day or so to see if we can get near 100.
 
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Prof. Julia Newton has/had an interest in primary biliary cirrhosis and its relationship to OI, and used to talk about ME/CFS in relation to it all, IIRC. We have, of course, another thread on the need of PwME to lie flat. Here's a link to one of her OI/PBC papers in which she says, '100% of precirrhotic and 81% of cirrhotic primary biliary cirrhosis patients exhibited autonomic dysfunction'.

No idea if that's anything to do with anything but thought I'd just throw it in.
 
MrMagoo said:
It would be interesting to see how it’s described in other countries/cultures.


In life I’ve been “poisoned” by alcohol (over consumption and “dodgy” holiday drinks decanted into name brand bottles known as “petrol”) and there was once a dodgy carbon dioxide leak which made us all sleepy one day at Uni. I’ve had food poisoning which means spending a lot of time in the bathroom.

When I have a migraine I feel awful, but I know that it isn’t poisoning because I know what a migraine is. If I didn’t know, would I describe it as being poisoned? Possibly, especially due to the postdrome aka “hangover” the next day. You’ve got pain, nausea, headache, but no temperature or shivers or sneezes.
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You see I didn’t blink at the word too much because my most distinctive food poisoning (can’t remember another) was a curry where a few hours later I woke up with big yellow spots/splodges across my vision - somewhat migraine-like with the aura thing except turmeric yellow and across more of eye (whereas aura is light and starts at edge before spreading across vision) and had a banging headache

then I was sick and whatnot etc (it's quite interesting actually because this one I know was food poisoning as 3 of us had the same meal and we compared notes somewhat. The other 2 were a couple and the female otherwise healthy other than what turned out to be some tropical issue meaning a 'sensitive' gut had symptoms that sounded like before she went to sleep and more 'standard'. The male was a sturdy soldier and thought he was fine until 24hrs later, long enough we'd have been confused without my 'yellow spots' and then were confused how he survived, but then he was very ill indeed, I guess because it had been in his system longer).

but as from ME anyway I sometimes get a poisoned toxin feeling (which is more systemic to a ‘blood and cells’ type feeling and not ‘nausea’ ) I can’t describe I assumed it was that.
 
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Sasha said:
Excellent find! Lots of 'poisoned' people on there too.
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I never drank alcohol in my severest years of ME and when I have since I have only sipped. I feel dehydrated with the ME so I do have an aversion to drinking more than sips because I already feel dehydrated.

I felt a bit overwhelmed yesterday when reading posts when 'poisoned' was introduced to this thread because one of my severest symptoms was feeling poisoned. I told a doctor that I had a very toxic feeling all throughout my body. This symptom was very significant in my severest years. Whether that toxic, poisoned feeling has a connection to liver problems that alcohol causes also I don't know. But to me it is two separate types of poisoning for now.
 
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Nightsong said:
On alcohol intolerance: do people find there is a difference between different strengths of alcohol - does the intolerance correlate with alcohol %/content?
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A bit hard to know, really. My threshold was low, the effects began quickly, and I don't drink quickly.

With jenever, gin, or malt whiskey I might sometimes finish Drink No 1, but there definitely wouldn't be a No 2. With something in a bigger glass, I wouldn't even finish No 1.

There could have been a dose response, but there was no practical difference. If a drink contained enough alcohol to be legally age restricted, it made me feel terrible. Didn't take long to work out that I might as well spend my money on things that don't make me feel terrible.
 
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