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

[Haveyoutriedyoga]

I would be led more in that direction if the problem was chiefly an increased hangover. Failure to metabolise alcohol might aggravate things but I don't see it being the primary cause of the unpleasant reaction.

Many of us appear to be affected differently by medications, needing lower doses, slower titration, and experiencing different side effects. How could that inform or be interpreted by your theory?

 

[EzzieD]

If Sophia had a high BMI then it's not surprising that she had a fatty liver as being overweight is apparently an almost given that you will have a fatty liver as fat stores in the liver first and then elsewhere in the body.

It may have been the case for Sophia, but the idea of people with ME having a fatty liver is something I remember coming across for multiple patients and it was not stated that they were overweight. I myself am very slim, so if my weird liver problems are due to having a fatty one, it won't be because of being overweight. So I wonder what else might be going on in there...

 

[Jonathan Edwards]

Many of us appear to be affected differently by medications, needing lower doses, slower titration, and experiencing different side effects.

My guess would be that the side effects are part of a general environmental intolerance problem that could be mediated by the hypothalamus (the most likely place to mediate it). I am not sure about evidence for needing lower doses or slower titration. That is a popular idea amongst private 'ME' specialists but I have not seen any scientific data on it.

 

[hotblack]

One example that I found interesting was zopiclone. Used it occasionally years ago and found it worked well. Then had no need for many years. Since ME tried it again and had all sorts of problems, notably a significant rebound effect.
Given how it works I have often wondered how this fits in with odd things happening with neurotransmitters.

I wonder if there are just certain medications which interact with things mediated by the hypothalamus which are particularly problematic for people?

 

[Haveyoutriedyoga]

Not sure what my question is here, but it’s interesting that we may possibly have a sort of opposite effect to alcohol and many patients report feeling good on low dose naltrexone (although many dont), which supposedly acts in a sort of opposite way to full dose naltrexone, which is used for alcoholism.

 

[Hutan]

I wouldn't be surprised if there was an effect on vasodilation, compounding the effects of sitting upright for the length of time it takes to drink and socialise. So, blood goes to the feet, not the brain. And that can make us feel a bit ill, quite rapidly, as well as perhaps triggering PEM.

Effect of Ethanol on Micro-Vessels Diameter and Prevention of Thrombosis

In the present study, vessel diameter in both arteries and veins were larger in ethanol group when compared to the control group [in rabbits]. Surprisingly, this effect and enlargement in vessel diameter was more significant in venous group than arterial group.

Ethanol has various effects on different body systems. Alteration in peripheral blood flow including increased blood flow to face, skin and extremities occurs as vasodilation in periphery and is common after ethanol use.13 In animal models, ethanol causes relaxation of smooth muscles in vessels wall by activation and induction of NO and prostaglandins.14In several in vivo and in vitro studies, it was shown that ethanol lowered vascular tone and vessels spasm.15 Ethanol also prevents thrombosis by inhibition of platelet aggregation and increasing the levels of plasminogen activators.16 Ethanol also induces its vasodilation effect by increasing bioavailability of nitric oxide (NO) and decreasing endothelin-1 synthesis.17,18

(Ignore the 'thrombosis' bit, ironically the authors were suggesting the use of alcohol to reduce thrombosis risk after surgery. Also, the write-up is poor in that report, may be an English language issue. I expect there are better references to find.)

They found substantial differences in peripheral blood vessel diameter 7 days after injection with alcohol as opposed to saline. I find that a bit hard to believe, and I'm not sure what concentration they used. But still. They also mention botulinum toxin as achieving the same effect - stopping vascular nerve function results in vasodilation and a lack of ability to constrict when faced with a challenge.

Exercise probably does something similar - peripheral vasodilation.

I also see there that alcohol is reported to increase prostaglandins in muscle - and I think it's possible that localised prostaglandins are part of the problem in ME/CFS, maybe contributing to pain and lack of muscle control.

 

[Hutan]

More on that, the rabbit study above reported the endothelin-1 synthesis is decreased by alcohol.

About endothelin-1:

ET-1 is a potent vasoconstrictor, meaning it causes blood vessels to constrict or narrow. ET-1 has been shown to be one of the most potent vasoconstrictors. Vasoconstriction is mediated principally by ETA receptors on the underlying smooth muscle, where a small proportion of ETB receptors may also be present.

There is a bit of evidence that endothelin-1 is increased in ME/CFS e.g. in two studies by different teams:

The ET-1 concentration was significantly elevated in both ME/CFS and PCS patients compared to HCs and PCHCs.

But they did find some differences between the two groups of patients combined and the healthy controls. It looks like patients had lower activity levels, worse sleep quality, a worse lipid profile and higher levels of endothelin-1 and VCAM-1.

What if over-production of endothelin-1 in ME/CFS was an adaptation to poor control of blood vessels because the peripheral vascular nerves aren't working properly? (or maybe a deficiency of effective endothelin-1 receptors?) And what if alcohol stopped that adaptative increased endothelin-1, resulting in even worse vasodilation and lack of a constrictive response?

 

[Starrynight]

I think this is a really interesting question. However the poll doesn't seem to have a box which corresponds to the best description of the reaction I have WHEN severely alcohol intolerant. In that case for me it is like rapidly feeling "poisoned" or more specifically the Disulfiram + alcohol reaction as I have understood it from reading descriptions (I don't have personal experience of that medication). This never happened to me prior to ME/CFS

The really confounding thing is that this comes and goes and doesn't necessarily correlate with severity in my case. When I am intolerant it is bad enough for me to give up alcoholic drinks for several years, which I have done and then found, perhaps by chance, that I can tolerate some and go back to drinking a bit for several years. Until it comes back...!

 

[Haveyoutriedyoga]

I think this is a really interesting question. However the poll doesn't seem to have a box which corresponds to the best description of the reaction I have WHEN severely alcohol intolerant. In that case for me it is like rapidly feeling "poisoned" or more specifically the Disulfiram + alcohol reaction as I have understood it from reading descriptions (I don't have personal experience of that medication). This never happened to me prior to ME/CFS

The really confounding thing is that this comes and goes and doesn't necessarily correlate with severity in my case. When I am intolerant it is bad enough for me to give up alcoholic drinks for several years, which I have done and then found, perhaps by chance, that I can tolerate some and go back to drinking a bit for several years. Until it comes back...!

Yes it’s odd how it comes and goes isn’t it!

 

[Sean]

I think this is a really interesting question. However the poll doesn't seem to have a box which corresponds to the best description of the reaction I have WHEN severely alcohol intolerant. In that case for me it is like rapidly feeling "poisoned" or more specifically the Disulfiram + alcohol reaction as I have understood it from reading descriptions (I don't have personal experience of that medication). This never happened to me prior to ME/CFS

The really confounding thing is that this comes and goes and doesn't necessarily correlate with severity in my case. When I am intolerant it is bad enough for me to give up alcoholic drinks for several years, which I have done and then found, perhaps by chance, that I can tolerate some and go back to drinking a bit for several years. Until it comes back...!

Important variable.

Sometimes a drink or two can be fine, at least at the time of drinking. It has the normal expected pleasant effects. At other times it feels unpleasant pretty quickly, within maybe 10 min. The 'poisoned' sensation, as it were.

 

[hotblack]

Interesting that there are people talking of a variable response. Not something those of us who don’t drink can attest to but I guess it’s possible we’d see the same. The talk of experiments ‘for science’ becomes more appealing!

They also mention botulinum toxin as achieving the same effect - stopping vascular nerve function results in vasodilation and a lack of ability to constrict when faced with a challenge

What if over-production of endothelin-1 in ME/CFS was an adaptation to poor control of blood vessels because the peripheral vascular nerves aren't working properly? (or maybe a deficiency of effective endothelin-1 receptors?)

I’m interested in how vascular nerves could fit in and wonder about correlation with other nerve problems often mentioned (peripheral neuropathy, small fibre neuropathy). And the studies which have shown endothelial dysfunction of some sort.

Difficult to survey the latter but maybe we can get an idea of prevalence of the former from people here?

 

[Snow Leopard]

I get circulation issues like subconjunctival hemorrhage if I drink more than a bit.

 

[T&O]

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'.


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?

Could this be why Naltrexone (low doseage) can have a beneficial effect for ME sufferers ?

 

[T&O]

… 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…”

 

[shak8]

I use alcohol as a drug to dampen brain activity. I use measure out less than an ounce (one ounce=a "drink") of vodka into an iced diet lemon lime soda and add fresh lime juice.

I drink this usually before 3pm, so it doesn't interfere with sleep (awakenings) as much. It is also feels justified on hot days or coping with the constant stress of political news.

Alcohol's effect is immediate, which is useful.

I drank alcohol yesterday after a 90 minute shopping trip (Trade Joe's--an Aldi-like store) toward the end of which I became hyper, almost manic from exceeding my energy limits and being exposed to stimulation. I struck up a convo with a fellow shopper as though I was doing stand-up comedy. That's my last gasp. Made a new friend, phone numbers exchanged but price paid.

Shopping there was a novel or rather non-routine experience and I couldn't just get in, get out in 15 minutes.

I couldn't turn off my hyperactivity when I got home, like a wind-up toy. Only after a bit of alcohol's CNS depressant effect did I finally begin resting--it took me 3 hrs of manic thinking before I realized I should try a my vodka drink. I had it and then managed to lie down in my usual resting spot on a heating pad and begin the recovery..

So, despite the warnings about the risks of alcohol to health, I am currently using it in small doses, after an 8-month period of easy abstinence, initally resuming imbibing due to a certain USA election result.

 

[Ravn]

This study (on a completely different topic, S4ME thread) recorded ‘alcohol drinker status’ - % of current, never & previous drinkers - in an ME/CFS cohort of n=875 compared to UK Biobank healthy controls (table 1)

Unless I missed it it doesn’t record the amount of alcohol consumed, i.e. light vs heavy drinkers

The number of pwME recorded as current drinkers was 82.9% vs 95.8% of the controls

 

[StellariaGraminea]

I think I could drink a little alcohol now 5 years in and be ok, but was never really a fan and rarely drank anyway and decided my body is under enough stress without adding that on.

In the first couple of years though was very intolerant for the rare times I tried anything. I can remember drinking a very small amount of wine with a meal once and very shortly afterwards my arms became dramatically weak, could barely lift them. I think my legs might have been weaker too but not so dramatically. It took a day or so for the effect to wear off, so I didn't try drinking anything again for a long time.

 

[V.R.T.]

Worsened hangovers at 19 were one of the first signs along with insomnia and DPDR that something wasn't right with me. When I got full ME/CFS seven years later the hangovers became even worse and I noticed feeling drunker with less alcohol although I was trying to cut down a lot on drinking at the time so could have been reduced tolerance.

I suspect my body doesn't metabolise alcohol very well. People would sometimes say I smelled like vodka when I'd only had 3 pints.

 

[AliceLily]

I was given a bottle of Villa Maria Pinot Noir for Christmas by someone who doesn't know I am intolerant. It is a red wine. Funny thing is, because I don't drink I don't know how good the wine is or whether Pinot Noir is normally a red wine so I may not even of had to say red wine.

It is sitting at the bottom of a cupboard. The only way I am going to be able to drink it is to have about 5 or 6 sips every other night or more with a meal. I have a feeling from memory that I am even more intolerant to red wine.

 

[bobbler]

I was given a bottle of Villa Maria Pinot Noir for Christmas by someone who doesn't know I am intolerant. It is a red wine. Funny thing is, because I don't drink I don't know how good the wine is or whether Pinot Noir is normally a red wine so I may not even of had to say red wine.

It is sitting at the bottom of a cupboard. The only way I am going to be able to drink it is to have about 5 or 6 sips every other night or more with a meal. I have a feeling from memory that I am even more intolerant to red wine.

Ha! But useful for this audience.

Wine is the alcohol I’ve been most obviously ‘sensitive to’ so never been ok with it ever, even when at certain points some other types I could manage as long as I could live with the aftermath etc (wine makes me incredibly drunkfrom just sips so I can’t even toast with it - or is it? I end up slurring my words but normally if that was drunkness you’d also be rowdy and falling over in that same ‘stage’ wouldn’t you?)

So I’d have no clue that Pinot noir was red even tho I worked in bars etc for a few years so know what I think is the obvious (Chardonnay, Merlot etc) but is likely decades out of date but remember back then villa maria was thought of as a pretty ‘above average’ brand.