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 9.6%

  • Worsened 'hangover' effect the next day

    Votes: 52 31.3%

  • The taste became unpleasant

    Votes: 8 4.8%

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

    Votes: 27 16.3%

  • Upset stomach - soon after

    Votes: 17 10.2%

  • Aggravation of ME/CFS symptoms soon after

    Votes: 82 49.4%

  • Pains elsewhere

    Votes: 12 7.2%

  • Other unpleasant symptoms

    Votes: 67 40.4%

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

    Votes: 24 14.5%
  • Total voters
    166
Art Vandelay said:
Same. Straight after I got EBV, I noticed alcohol made me feel sick
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So EBV was my trigger as well. It was not fun. I couldn’t get out of bed. I felt so horrible. 3 weeks into it my liver enzymes were elevated, i had pain to my liver requiring prescription and the ultrasound showed ‘sludge’ in the gallbladder. Would I think to drink alcohol at that particular time? Hell, no.
2 months into it, i tried to return to work, it did not go well. I still had sludge in my gallbladder.

The gist of it is, viral infections are known to be hard on the liver
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1606546/
And liver inflammation and alcohol don’t mix well.

The other concept that is well established is alcohol tolerance. If you are a drinker, chances are you can tolerate more than a non-drinker. How much you weigh will also affect tolerance, so a 6’5’ 250 lb guy will be able to easily tolerate 2 beers while a 5’2” 105 lbs woman would not.

Lastly, what we all mean by intolerance matters. We may all have different explanations and individual responses depending on dose, whether you have an empty stomach, whether you are ingesting fast or slow, and whether there are drug interactions, just to name a few.
 
Milo said:
The gist of it is, viral infections are known to be hard on the liver
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I was told testing showed that my liver was back to normal two weeks after my EBV infection.

Moreover I am still intolerant to alcohol twenty years later and I am not on any drugs that would interact with alcohol. The times I have tried alcohol, I have taken it very slowly and done so with food.

Alcohol makes me feel ill. It is nothing like the feeling that a healthy person would get if they consumed too much too quickly.
 
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Yet another reason to wonder if I really do have ME....
Overall, my tolerance of alcohol has decreased exactly in line with my age. There have always been times when I wouldn't know I've had a drink and other times when one standard drink wipes me out. I suspect this is quite normal and explainable. I never feel sick from it, well not for 50 years anyway!
 
oldtimer said:
Yet another reason to wonder if I really do have ME....
Overall, my tolerance of alcohol has decreased exactly in line with my age. There have always been times when I wouldn't know I've had a drink and other times when one standard drink wipes me out. I suspect this is quite normal and explainable. I never feel sick from it, well not for 50 years anyway!
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I would not think that "alcohol intolerance" by itself, whatever that means for people (the definition by itself is never given when mentioned), is precise enough to be diagnostic of ME. If so, it would be one criteria in the case definition and it is not. I think it's more like an incidental piece of information about people's experience with alcohol. I personally never felt sick following one drink over the 12 years I have been sick. I just don't have the desire or the need to drink on a regular basis-and the occasional drink (once a season?). Maybe it's just that I feel sick every single day and have no desire to make it even worse for myself. The pleasant effects are short lived (minutes) and not worth the expense of money. (I would go for a small glass of wine, with meal, or a cider, low alcohol)
 
Milo said:
The other concept that is well established is alcohol tolerance. If you are a drinker, chances are you can tolerate more than a non-drinker. How much you weigh will also affect tolerance, so a 6’5’ 250 lb guy will be able to easily tolerate 2 beers while a 5’2” 105 lbs woman would not.
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I actually tried to get used to alcohol again because I was thinking maybe I'm just not used to it anymore. And since I am still relatively young, with time, I could probably retrain my body to tolerate alcohol better. But it didn't work, it was always the same sick feeling even from one glass.

Lastly, what we all mean by intolerance matters. We may all have different explanations and individual responses depending on dose, whether you have an empty stomach, whether you are ingesting fast or slow, and whether there are drug interactions, just to name a few.
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Yes, and it was like this indeed before. But now it is quite different, there was definitely a change and now it is a very consistent experience (which is indeed not just getting drunk too quickly but actually feeling ill from it). (Since the healthcare system didn't bother with me first, I took no drugs at all in the first 4-5 years, only now, so that also didn't affect it.)

oldtimer said:
Yet another reason to wonder if I really do have ME....
Overall, my tolerance of alcohol has decreased exactly in line with my age. There have always been times when I wouldn't know I've had a drink and other times when one standard drink wipes me out. I suspect this is quite normal and explainable. I never feel sick from it, well not for 50 years anyway!
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I think you can still have ME if you don't have every possible symptom. :) I also don't have some that are quite characteristic for many people (POTS, pain apart from headaches and painful lymph nodes).
 
My n=1 experience is that my limits have definitely reduced but I can comfortably consume 2-3 125ml (I use a measure) glasses of wine in one sitting. More than that and I get heart palpitations and flushed quite quickly (say 1-2 hrs after). I can’t say that drinking gives me more symptoms than that, and certainly a sip would be fine.

I suspect this is just age but there may be a circulation thing going on as well or a mild histamine reaction (it feels similar to eating too much cheese). I used to have IBS symptoms and wine would aggravate that, but I’ve not had those symptoms for quite a while now (1-2 years free)? I just keep within 2-3 glasses twice a week (weekend treat).

I only really drink wine by preference since my hobby before getting sick was wine and food pairing and it feels wrong not to drink wine with certain foods now (wine bore etc). Beer definitely no longer agrees with me (almost certainly age related).

of course my perceptions are almost certainly clouded by the fact that I only drink wine with large meals that I probably should limit anyway and I’m 8 years in, so my capacity in my early to mid 40’s is probably a bit different to what it is now due to ageing?

I didn’t have glandular fever or a viral onset (was gradual). And I wouldn’t call my mild symptoms with alcohol unusual or an intolerance.

thought I had better contribute a personal account rather than a scientific appraisal of methodology.
 
Sometimes I can enjoy a couple of glasses of red wine or a slimline G&T without repercussions, most of the time I cannot because I get headaches and brain fog very quickly and become very miserable.

I tend to have a sixth sense for when I can tolerate a few drinks and when I cannot.

I don't touch higher sugar drinks because I am much more likely to feel the above symptoms.

I cannot drink any alcohol within about two hours of going to sleep or I will have a very restless unpleasant night.

This started roughly around the time I became unwell.

I also have migraines and ?cluster or similar headaches and links have been discuss here
 
Andy said:
Existing threads,
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Thanks Andy.
The majority said yes. I will be interested to see how many for each sort of reason.
The general discussion seems to have stopped 5 years ago but clearly worth a re-read.

Edit: yes, well worth a read, lots of information, but it would be nice to have an option poll to clarify numbers. So far they seem to be all over the shop!
 
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I’m glad this is being discussed.

I last had alcohol at a party about 10 years ago when my ME was mild. Granted I did have quite a few drinks which I could normally tolerate fine, but the next day I could barely walk and the body pain was agony along with the muscle weakness and flu like/toxic type symptoms.

From that day I haven’t touched alcohol as to be honest I feel drunk and poisoned most days anyway so I wouldn’t want to add to this.

There’s got to be a reasonable explanation for this when we fully understand the mechanisms of ME as I drank alcohol for years pre-ME no problem.
 
I gave up drinking alcohol due to my symptoms. I used to drink wine sometimes before I fell ill, sometimes cocktails, all socially. Now even one glass of wine would be a challenge because it makes me feel ill, with symptoms appearing rapidly (not after finishing the drink). It is not so easy to describe but generally feeling really ill or maybe even poisoned is quite close to it. I just feel I am hit by a truck, I also feel nauseous, dizzy. The symptoms are very strong to the point that I find it very hard to concentrate on other things going on (someone talking to me for example), because I'm feeling so awful. I don't feel drunk though (I don't feel any of the "nice" aspects of being tipsy), I just start to feel really awful really quickly.
 
https://www.s4me.info/threads/alcoh...ic-fatigue-syndrome-2023-maciuch-jason.33560/
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There has been an astonishing lack of research into this - one of the few significantly relevant studies is "Alcohol use in chronic fatigue syndrome" (J Psychosom Res 56(2004):203-206) where it was reported that in a study of 114 CFS patients (Fukuda criteria) 2/3rds self-reported a reduction in alcohol use and the most common reasons for this were exacerbations of physical symptoms.

Perhaps also worth quoting this from Bansal (BMC Family Practice (2016) 17:81):
The presence of certain other unusual features may be used to confirm the diagnosis of CFS/ME. These include alcohol intolerance, hypersensitivity to medications, perpetually cold hands and feet and an unusual recurrent sighing pattern of respiration.
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Additional features that may suggest CFS/ME in those with borderline scores include alcohol intolerance which we see in four fifths of our patients. This often commences soon after the onset of the CFS/ME symptoms.
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In our experience nearly all patients with CFS have reduced their intake of alcohol and I have not seen a single patient who had increased his/her alcohol intake. Moreover, tolerance of 4 units or more of alcohol in a single sitting is unusual and encourages us to revaluate the diagnosis. In this regard fewer than 20 % our patients continue regular alcohol ingestion although even here the amount consumed has been decreased.
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jaded said:
I’m glad this is being discussed.

I last had alcohol at a party about 10 years ago when my ME was mild. Granted I did have quite a few drinks which I could normally tolerate fine, but the next day I could barely walk and the body pain was agony along with the muscle weakness and flu like/toxic type symptoms.

From that day I haven’t touched alcohol as to be honest I feel drunk and poisoned most days anyway so I wouldn’t want to add to this.

There’s got to be a reasonable explanation for this when we fully understand the mechanisms of ME as I drank alcohol for years pre-ME no problem.
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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'.

Mij said:
No. I don't have any intolerances to food or drink that I'm aware of since becoming ill.

I have an intolerance to coffee if I drink more than 3 cups/week, but I also had this issue when I was healthy.
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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?
 
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