Alcohol intolerance and myalgic encephalomyelitis/chronic fatigue syndrome, 2023, Maciuch, Jason

Discussion in 'ME/CFS research' started by Wyva, Jun 1, 2023.

  1. Wyva

    Wyva Senior Member (Voting Rights)

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    Abstract

    BACKGROUND
    The literature is mixed about the occurrence of alcohol intolerance among patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Surveys that asked respondents with ME/CFS whether they experienced alcohol intolerance within a recent time frame might produce inaccurate results because respondents may indicate that the symptom was not present if they avoid alcohol due to alcohol intolerance.

    AIM To overcome this methodologic problem, participants in the current study were asked whether they have avoided alcohol in the past 6 mo, and if they had, how severe their alcohol intolerance would be if they were to drink alcohol.

    METHODS The instrument used was a validated scale called the DePaul symptom questionnaire. Independent t-tests were performed among the alcohol intolerant or not alcohol intolerant group. The alcohol intolerant group had 208 participants, and the not alcohol intolerant group had 96 participants.

    RESULTS Using specially designed questions to properly identify those with alcohol intolerance, those who experienced alcohol intolerance vs those who did not experience alcohol intolerance experienced more frequent/severe symptoms and domains. In addition, using a multiple regression analysis, the orthostatic intolerance symptom domain was related to alcohol intolerance.

    CONCLUSION The findings from the current study indicated that those with ME/CFS are more likely to experience alcohol intolerance. In addition, those with this symptom have more overall symptoms than those without alcohol intolerance.

    Open access: https://www.wjgnet.com/2218-6212/full/v9/i3/17.htm
     
  2. MeSci

    MeSci Senior Member (Voting Rights)

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    I don't know how I would rate in such a study - I am definitely intolerant of more than about one glass of wine now, but in the early years of ME I drank as usual, i.e. a lot - and didn't suffer for it.

    I am still not severely affected by ME, although generally worse than at the start, but I don't know how much is due to ageing.
     
  3. Trish

    Trish Moderator Staff Member

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    I have only read the abstract. I think for some of us it's hard to know whether we are alcolol intolerant. In my case since getting ME I rarely attended events where there was alcohol, and I've never been a solo drinker. With no other drinkers in the house for most of the time I've been sick, it simply never arises, and I haven't drunk alcohol for decades.
     
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  4. NelliePledge

    NelliePledge Moderator Staff Member

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    I think there’s a spectrum of intolerance. I can drink without immediate negative effects. It is still enjoyable although because I drink so infrequently I do get tiddly on one glass.

    I get worse/longer PEM if I drink, even though I limit to 2 glasses. When I don’t drink at a social event I definitely don’t feel as bad. I keep it for very special occasions now.
     
    Last edited: Jun 2, 2023
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  5. Florence

    Florence Senior Member (Voting Rights)

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    For me alcohol intolerance kicked in immediately after the infection that triggered my ME and has remained consistent since.

    If I drink a small glass of wine I will feel the effects the following day. It will cause a headache, a sore throat and large, itchy hives, usually on the chest and stomach.
     
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  6. EzzieD

    EzzieD Senior Member (Voting Rights)

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    Same as @Florence . The initial viral infection at first resolved and I seemed fully recovered, then suddenly a few weeks later the symptoms all returned with a vengeance (plus new symptoms as well), at which time I found myself unable to drink any alcoholic drinks. Just a few sips would cause me to feel almost immediately really horribly hungover (no need to wait for the morning after!). Haven't been able to indulge ever since.
     
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  7. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    I know alcohol intolerance has been acknowledged by some ME specialists.

    If I recall correctly, there was reference made to this in a Canadian government workshop booklet on CFS. Can't recall the title.

    Personally, early on, I had a bad reaction to a very small bit of alcohol. Needless to say I avoid it.
     
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  8. perchance dreamer

    perchance dreamer Senior Member (Voting Rights)

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    I don't drink at all anymore aside from a few sips of champagne on New Year's Eve. Even when I was younger, before I got fibromyalgia, I never metabolized it very well.

    The main reason I stopped drinking is that the next day I feel muddled, even with just 1/2 of a small glass of wine. Alcohol acts as a depressant for me, which it is, of course, though many people don't experience it as that.

    I do enjoy getting altered in other ways, though. I have some home devices for brain stimulation, and occasionally I'll have a hemp edible with THC that doesn't exceed what's legal in my state. Even 1/4 of a gummy affects me a great deal since I am the cheapest of dates.
     
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  9. Kitty

    Kitty Senior Member (Voting Rights)

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    I've always been intolerant, so I don't think ME is behind mine. The worst symptom is the muscle pain, which starts about 15 – 20 minutes after ingestion, and the nausea follows soon after. My skin flushes and burns like crazy, but I think that's just a histamine thing.
     
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  10. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    I think the issue of various intolerances and ME deserves more research, not just alcohol.

    A big problem in researching this is that the most reliable investigation tool is to exclude the target foodstuff from your diet for a number of weeks then reintroduce in a challenge test. So it can take months or even years to systematically investigate a range of foodstuffs, especially given two or more foodstuffs may interact, for example one food stuff may alter the permeability of the gut lining and then allow another molecule from a different food into the blood stream that would normally be kept out, causing further symptoms down stream.

    Why are the incidences of a number of food intolerances apparently much higher in ME than in the general public, why do some people with ME experience specific intolerances but others do not, do intolerances vary with the severity of the ME (within individuals and between individuals), which foodstuffs are more likely to trigger negative responses than others, do specific food trigger specific responses regardless of the ME, do certain foodstuffs worsen the ME itself, do we see comparable patterns of intolerances in other long term health conditions, etc?

    I have never been a regular drinker but have always reacted very badly to drinking too much, however since the onset of my ME even small amounts of alcohol can have a negative response, though the pattern has never been clear cut, symptoms vary from rashes (red wine) to migraines (wheat-beer, was that gluten?) so I can’t say if I am intolerant of alcohol per say or have problems with other components of different drinks or just the energy demands of situations where I would have had a drink. For me the easiest thing is just to avoid alcohol completely other than a very occasion sip for significant toasts.

    Interestingly for me gluten and caffeine produce much more consistent responses (both also post ME onset acquired intolerances), and both have effects that are specific to the triggering food and also interact with my ME, exacerbating my general ME symptoms too. Further my intolerances have worsened and increased in number over the course of my ME.

    What research that is out there is not fantastic but it is probable that over 40% of people with ME experience one or more intolerance, so it is not an insignificant issue, and for me had I been aware of particularly my gluten intolerance earlier in the course of my condition (I did not identify it until ten years in) I would have been able to manage my health much better much sooner.
     
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  11. livinglighter

    livinglighter Senior Member (Voting Rights)

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    I definitely developed alcohol intolerance when I got ill and subsequently diagnosed with ME/CFS.
     
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  12. bobbler

    bobbler Senior Member (Voting Rights)

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    Agree on the specific substance being more relevant. My reaction to wine for example is weird and extreme (a few sips immediately drunk) vs other alcohol but variation across all have been apparent over the decades so the what specifically is in it also seems to be important
     
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  13. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

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    Alcohol and carbs were some of the first things to go. I was always a one glass of wine, or more commonly GnT (or rum and coke on the boat) but as soon as I got sick I realised I couldn't tolerate alcohol. I would wonder whether it relates to general metabolic changes, deleterious effects on lipid bilayers and so forth.
     
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  14. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

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  15. jnmaciuch

    jnmaciuch Established Member

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    Honored to see this discussion of my paper! To the point about other intolerances, there was another question asking about sensitivities to medication or chemicals, though it had very low rate of endorsement overall.

    As for the concerns about the specific substance, I absolutely agree that there needs to be more empirical research, but of course that tends to be difficult both due to issues reliably recruiting ME/CFS participants and the potential of causing harm if someone does have a strong negative reaction to alcohol. This study was rather limited in that we only had the self-report data available. As is discussed in the introduction, one of the theories for an alcohol-specific intolerance is that downstream byproducts of ethanol breakdown are actually processed in the mitochondria, which are known to be dysfunctional in ME/CFS. This might cause those byproducts to build up, especially in the neurons, and thus cause an extremely exacerbated reaction to alcohol. It's possible that other common sensitivities might be more mediated by histamine rather than mitochondrial dysfunction (MCAS being a common comorbidity and all), which might drive some of the differences in sensitivities. However, without experimental confirmation this is really just speculation.
     
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  16. rvallee

    rvallee Senior Member (Voting Rights)

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    I think there's something really interesting there. Over the years I have seen this reported so commonly by long haulers and it's a very strong effect when it happens. I can't imagine there isn't a way to objectively make sense of it.
     
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