Alcohol Intolerance poll. Please do the poll even if your answer is no.

That's interesting when read in conjunction with the liver problems.

 

Thanks for the Sarah Myhill reference. A very clear article about alcohol intolerance.

There's also fermentation in the muscles in anaerobic metabolism, when there is not enough oxygen. I have no idea if that might result in alcohol related metabolites.

Auto-brewery syndrome (ABS) seems quite difficult to diagnose. Maybe some ME/CFS patients might have it.

 

I can see the discussion has somewhat moved past the 'poisoned' label, but as someone who has been poisoned (near fatally - I wound up in a coma in the ICU) I feel like it is the best term for what I experience with alcohol.

It is:
- sudden onset (or at least sudden realisation that it is present)
- cognitive, movement and sensory difficulties - a bit like the way that someone being drugged is represented in movies: slurred speech or difficulty forming sentences, world spinning a bit, auditory muffling or distortion, falling or the inability to complete movements without mistakes like knocking something over
- overwhelming sense that I need to leave the situation
- feeling like there's something in my body that I need to get out, sometimes accompanied by nausea or diarrhea, but not always. it definitely feels like "it's in every cell" but I don't know how to communicate that feeling without that abstraction.
- a slowing down of my thoughts and ability to process, but which coexists with a kind of panic

It kind of feels like the worst parts of being very drunk (or on LSD) without any of the pleasant or pro-social bits.

 

I wrote earlier that alcohol doesn't affect my ME symptoms although I can't drink as much anymore which I put down to aging.
That's all true but to be specific, I only drink about 3 standard drinks of spirits per week on separate days. Wine worsens my headache and I have never drunk beer.

 

Interesting - I slowly tapered off day drinking as it made me incredibly drunk and insensible when I was mild, plus I’d get a hangover by tea time and need to go to bed early.

 

The fastest growing health condition in North America today is "non-alcoholic fatty liver disease". Apparently this is something new as in the past fatty liver disease was usually only found in alcoholics. It is caused primarily from a poor diet high in sugar (including glucose from white bread/pasta, white rice, canned, frozen, and packaged ready made foods, fruit juice, etc.). I know a few women who have been diagnosed with this in the past few years and they all have a sweet tooth.

 

We now have over 100 votes so I shall welcome discussion of interpretation.

The first thought for me is that the effect reported does not look like just an Antabuse reaction to acetaldehyde due to a metabolic failure. (That would have weighted everything to hangover.)

The second is that the results look very much as we now see have been found before. About 90% of respondents have some problems.

The third is that there does not seem to be much induction of pain. Alcohol produces local pain in Hodgkin's disease and that sort of reaction would not seem likely in ME/CFS but it is of note that this is confirmed.


I am getting the impression that the main effect may be a hypothalamus mediated 'negative' signal that somehow feeds in to the whole ME/CFS symptom complex as soon as the alcohol level rises. This need not have any specific symptom of its own.

I have a suspicion that human beings normally have two opposing hypothalamic responses to alcohol. The first is a negative signal - maybe a non-specific warning - which is often encountered when first using alcohol and for some people remains the dominant response, so the person becomes a life-long non-drinker. Interestingly, I was reminded of this response recently because I have been drinking only Corona zero before dinner to cut back on alcohol and when I was offered a rum and ginger instead I felt quite unpleasant about twenty minutes later. The second response is the euphoric response that drives usage and for some addiction.

 

Could one switch between the two, and why?

 

A quick Google (looking for a bit of light breakfast reading on a subject that is mostly gobbledegook to me) retrieves information on long term alcoholism induced dysregulation

 

I'll add myself to the group of people that have had elevated or slightly over reference scale liver values without drinking much alcohol, now for over 15 years at least.

 

If that's the case, would it tell us anything about the underlying mechanism of ME/CFS generally?

 

Ironically, I don't eat ANY of those sorts of foods and don't have a sweet tooth, preferring savoury foods - I eat a super-healthy wholefood organic diet, no sugar, no white flour products, no ready meals, no packaged foods, no junk foods whatsoever. Just fresh raw vegetables and meats to make homemade meals from, nuts, seeds, live yoghurt, whole grains eg brown rice, quinoa, wholemeal bread (rye, as ME somehow made me allergic to wheat) and so on. The one thing I will not scrimp on is super-healthy food; will scrimp on anything but that, because I found it makes a difference to my overall health so I stick to it. So my strange liver results remain a mystery!

Regarding fatty liver, I have come across various references over the years to people with ME being thought to have fatty liver. I wonder if anyone else here remembers this? The one specific mention I do remember was in the case of Sophia Mirza: http://www.investinme.org/article-050 sophia wilson 01-rip.htm : "Sophia had a high BMI when she died and a “fatty” liver."

 

Well it might point to the hypothalamus being crucial - and not just as part of some 'HPA axis' or 'Autonomic function'. If ME/CFS was a bit like Parkinson's disease of the hypothalamus it might make sense.

 

Where Parkinson's involves degeneration of nerve cells in the basal ganglia and the substantia nigra, and ME/CFS would involve degeneration of nerve cells in the hypothalamus (+/- other locations)?

 

Not specifically suggesting degeneration, just a change in neurotransmitter function. Degeneration seems unlikely since nobody has reported any structural change in hypothalamus.

 

Gotcha. Indeed. Can you explain a bit more the nature of the change in neurotransmitter function in the hypothalamus of pwME you think could be happening? Is something being released less or more or?

Whatever's going on, it seems unlikely that Graded Alcohol Therapy or changing our alcohol-specific effort preferences will help.

 

Nope. Sorry.
Above my pay grade.

 

Maybe we need a survey on heat intolerance next...

 

Is there any way to take this hypothesis forward?

 

Would functional MRI brain before and after alcohol in pwME and controls show anything useful?