Investigating reduced tolerance to alcohol in ME?

Colin said:
Of course there is bias but if there is any bias regarding drinking beer, here, it's way in favour of it, still, despite the known toxic effects. And you would be hard-pressed to convince me that the three days that I spent in bed after the last time I attempted to be normally social by drinking beer at a party was the result of some sort of perceptual difficulty.



I had the impression that what was being proposed was a proper biochemical study, not just a questionaire. Though the subjects would have to be selected on the basis of self-reporting, I suppose, are there really so many people with so much time on their hands as to make something like that up in order to bias such a study?



Ignoring the attempt to smuggle in a bit of bias of your own with that "highly" possible, I don't see the difficulty. Apart from obtaining ethical approval, and finding willing participants, what's the problem? Apart from knowing what to look for and all the technical considerations, which I am not qualified to opine upon.
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I think it’s worth clarifying my comments on bias. This isn’t about people consciously deliberately making things up. The example I give above is not to call out people not telling the truth...most of those 90% are genuine in their belief. It’s just that facts prove that their belief was wrong and most of this is down to wrongly attributing cause, based on a deep seated unconscious bias.

My main point is to assume bias is present in the cohort and that it’s well known in studies with Food in particular. This isn’t a reflection or judgement of any of our individual experiences just important when constructing a robust experiment to create an evidence base that has eliminated bias that may skew the results. We are all subject to bias in our everyday life...it doesn’t mean we are in any way lacking in judgement or misguided etc.

No offence meant to anyone’s n=1 experience.

as far as objective measures ...this is challenging unless you know the proposed effect you are trying to measure ...and they could be many and varied which is why it is challenging (but not impossible).

I don’t have any axe to grind on this subject...just commenting on this from a research point of view (as an ex food biochemistry researcher)

My personal view is I suspect that alcoholic beverage intolerance may be present from the patient testimonials but before hypothesising further, I would like to know what percentage of PWME vs a healthy control have this effect (E.g is this common in all people over 40?) and then probably vs other chronic illnesses to see if there are any clues as to why this may be present as a symptom.

I would like to understand if this is a downstream symptom or a hallmark of the illness and whether this is linked to severity and whether there are any symptom clusters that are present before deciding whether this is something meaningful to research further. I don’t think we can answer any of those questions as yet so designing an experiment to test the effects on PWME seems a bit premature?

Probably need some other research first to help create a working hypothesis to test later?
 
cassava7 said:
My impression is that even moderate people can tolerate a glass of wine
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I can't. Last year I tried a few sips; no good.
But bizarrely (about 13 years ago, a couple of small glasses of tia maria were fine, although I did struggle to stand up afterwards; I've not tried it since).
(Before I was ill, I used to drink wine, cider, and the occasional whisky).
 
arewenearlythereyet said:
I would like to understand if this is a downstream symptom or a hallmark of the illness and whether this is linked to severity and whether there are any symptom clusters that are present before deciding whether this is something meaningful to research further. I don’t think we can answer any of those questions as yet so designing an experiment to test the effects on PWME seems a bit premature?

Probably need some other research first to help create a working hypothesis to test later?
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Well that's the problem, isn't it? Where does one get a working hypothsis from? But you may well be right. It might well be premature and maybe something will come out of other research to shed some light on it. I can't imagine anyone getting the money even for a dedicated study as things stand; but maybe questions about it could be included in general ME/CFS surveys, as a starting point?

Edit: Fixed kak-brained typo.
 
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I had problems with hypoglycaemia, but from my experience it was due to dysautonomia. In the same way I could not heat up if my temperature dropped because my brain did not send a signal properly, my liver did not get a signal to release sugars when my blood became depleted. My grandson has insulin dependent diabetes and has a similar problem with exercise causing hypos (too ill to explain exactly what I mean)

I avoid alcohol as I have bad neurological problems anyway and alcohol makes them worse but it also seems to make me feel bad though I think it could be the extra strain on the brain gives me PEM.

There must be something actually in alcohol though as things like gabapentin and tramadol which feel as if they slow down my neurology help me do better but the sedative effects of alcohol do not.
 
There is nothing scientific, but when ME kept being said to be just depression we would not acknowledge a fact against it was that people with ME did not fit the cliched TV character you knew had depression or PTSD because they drank too much and smoked too much.

Never heard of anyone becoming an alcoholic because they went down with ME.
 
Shinygleamy said:
I always believed it was due to a sluggish liver, struggling to clear the alcohol from your bloodstream, the same goes for drugs.
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N=1 seeks others with a view to forming a statistically-significant cohort.

That could well fit my situation as I got into this mess via hepatitis. And that does beg the question of whether the ethanol-intolerants are only a sub-group, the liver damage being only a casual association, it being part of one of several ways into ME/CFS. But that does suggest the obvious test of looking at how quickly one's system breaks down ethanol. Has that ever been looked at? As a study, it wouldn't take much designing. It might separate us into different groups, which would be interesting.

Guido den Broeder said:
A third of the patients we've questioned developed alcohol intolerance when they hadn't this problem before, and another 30% who already had this issue saw it increase in severity. Alcohol was the most significant of all the intolerances on our list, followed by tobacco.

Link: http://www.mevereniging.nl/volop-voedselintoleranties-bij-me/
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Thanks for that. That is interesting. That's self-reported, I asume, so we have to, as has been rightly pointed out, be scientifically-sceptical; but, still, ~60% is the first figure I've ever seen that's been put up for this phenomena.
 
There was a small and completely unscientific poll of our members a few years ago about alcohol intolerance. I won't link it here and nor should we discuss it here except in general terms as it was a members only thread.

We need to be wary of such polls run among members of ME organisations or done on other social media, since they are probably of more interest to fill in by people who do think they have the thing the poll is about. It would be interesting to see a more scientifically conducted study.
 
It’s useful to know that a symptom is not a one off so it’s a step up from an individual account. Obviously large scale surveys such as Action for ME/ME Association in the U.K. with thousands of participants have more use as evidence of issues being widespread.
 
I don't know if anyone's mention this yet but I'm sure wessely wrote about alcohol intolerance at one point, giving it as another reason m.e. must be psychological.
 
I would be curious to such a study.
My grandfather couldn’t handle alcohol very well, and my mom has that red wine (is that histamine?) allergy. So me being giggly after half of glass of wine could be that, or related to CFS. Either way I couldn’t drink before I got sick, so no way to know the difference for me ;)
 
I’m never sure if my alcohol intolerance is from the SSRIs that I was taking from before I started to try to drink or the ME/CFS. I was able to tolerate a relatively small amount and then I was nauseas and physically sick. Now I’m on more medication I can’t drink anything without feeling worse.

Some alcohol free beer is pretty good though.
 
In the early years of ME even two glasses of wine would make me feel completely drunk and sick for days afterwards. I was mildly ill at the time and still working full time and socialising a few times a year (with great difficulty).

I live in a country that has a serious problem with heavy binge drinking culture and alcoholism, and the only other person I ever met here who was complaining to me about every work night out being all about getting smashed and how much they hated going out and refused to participate because alcohol makes them feel like shit developed ME/CFS a couple of years later.
 
Sid said:
In the early years of ME even two glasses of wine would make me feel completely drunk and sick for days afterwards.
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Did it matter what you drank (was wine worse than beer or spirits)? I seem to remember someone saying that wine was particularly bad (apart from a really cheap fizzy wine that had probably never been near a grape or yeast).
 
Adrian said:
Did it matter what you drank (was wine worse than beer or spirits)? I seem to remember someone saying that wine was particularly bad (apart from a really cheap fizzy wine that had probably never been near a grape or yeast).
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Wine and cider particularly bad. Beer I don’t know, rarely drink it. Spirits least bad, esp. the expensive stuff.
 
Just was wondering again about this symptom and how many diverse symptoms it might actually be.

I think I experience different 'sensitivities' to beverages containing alcohol. There is certainly the histamine related sensitivity that I had before developing ME ( I also have diverse allergies, atopic dermatitis and urticaria). I always reacted badly to just some sips of wine or sparkling wine. But I could tolerate some beer and also vodka and whisky.

General tolerance of acolohol then almost completely disapperared after onset of ME (following glandular fever). I literally couldn't stand or sit anymore after just some sips of beer (didn't get drunk). During better phases I again could tolerate spirits, except some liqueurs. But nowadays just a sip of any kind of alcohol immediately makes me sick (not drunk).

From skimming this thread I didn't see references to how alcohol alters the permeability of mucosa and I think also small vessels and the blood-brain barrier? Not able to look up references myself now, but could that be a relevant issue for those pwME that have a reduced tolerance to alcohol?

(I realize that if some of us in addition have that genetic polymorphism [?] that could further confound things.)
 
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Shinygleamy said:
I don't know if anyone's mention this yet but I'm sure wessely wrote about alcohol intolerance at one point, giving it as another reason m.e. must be psychological.
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I remember vaguely but don't remember what the rationale was behind this assumption?
 
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MSEsperanza said:
General tolerance of acolohol then almost completely disapperared after onset of ME (following glandular fever). I literally couldn't stand or sit anymore after just some sips of beer (didn't get drunk). During better phases I again could tolerate spirits, except some liqueurs. But nowadays just a sip of any kind of alcohol immediately makes me sick (not drunk).
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Similar story here, I absolutely associate the development of my alcohol intolerance with my ME triggered by Epstein-Barr. Before that, I could drink like anyone, maybe a bit less due to my size. Now I feel quite terrible (sick) after only a few sips and have to drink extremely slowly to be able to handle it. Then from the next day on, all my symptoms worsen for two whole days and one glass of wine is enough to trigger this. So this made me stop drinking alcohol altogether, since my body really can't handle it.

Someone earlier in this thread said that they think even people with moderate ME can probably handle a glass of wine. I am probably at the lower end of mild right now (started at the lower end of moderate) and I definitely can't handle it, while I have no other food/drink sensitivities.

Edit: People often give me weird looks when I tell them I don't drink alcohol at all. Some probably think I must be a recovering alcoholic.
 
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Wyva said:
Similar story here, I absolutely associate the development of my alcohol intolerance with my ME triggered by Epstein-Barr. Before that, I could drink like anyone, maybe a bit less due to my size. Now I feel quite terrible (sick) after only a few sips and have to drink extremely slowly to be able to handle it. Then from the next day on, all my symptoms worsen for two whole days and one glass of wine is enough to trigger this. So this made me stop drinking alcohol altogether, since my body really can't handle it.
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Same. Straight after I got EBV, I noticed alcohol made me feel sick. It's difficult to describe, but it feels like being drunk and hungover/poisoned at the same time. Even after drinking a moderate amount of alcohol at special occasions (eg, a few glasses of champagne at my brother's wedding), I've experienced awful symptoms the next day including nausea and vomiting.

I've always described my ME as feeling like the worst flu of your life crossed with a hangover so maybe this is related.

Sadly, it seems ME/CFS researchers are more interested in studying 'tiredness' rather than exploring these potentially very interesting symptoms.
 
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