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
Evergreen said:
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)?
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Not specifically suggesting degeneration, just a change in neurotransmitter function. Degeneration seems unlikely since nobody has reported any structural change in hypothalamus.
 
Jonathan Edwards said:
Not specifically suggesting degeneration, just a change in neurotransmitter function. Degeneration seems unlikely since nobody has reported any structural change in hypothalamus.
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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.;)
 
Jonathan Edwards said:
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.
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Jonathan Edwards said:
Not specifically suggesting degeneration, just a change in neurotransmitter function. Degeneration seems unlikely since nobody has reported any structural change in hypothalamus.
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Is there any way to take this hypothesis forward?
 
Jonathan Edwards said:
We now have over 100 votes so I shall welcome discussion of interpretation.
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What do you think of liver-related, as mariovitali was saying:
mariovitali said:
I believe this thread and poll is very important and seeing that some members have mentioned the liver, I would like to give my two cents :

-Alcohol is a toxin. The liver is the organ responsible for most of detoxification that is taking place in the human body.

-Regarding detoxification , from Jackson Labs Dr Shuzhao identified increased levels of xenobiotics in ME/CFS patients : https://twitter.com/user/status/1816144339195641960
. Apart from Dr Shuzhao , 2 other studies have found elevated Butyrylcholinesterase in LC and ME/CFS patients. Assay of BCHE can be used for (surprise,surprise) assay of Liver function test

https://twitter.com/user/status/1782060521283301515




-Medications are being metabolised by the liver. Impaired liver function raises the risk of adverse events.

-In 2018, -I believe that @Jonathan Edwards was also there during my presentation- at the London School of Hygiene and Tropical Medicine I presented my work where using several analytical methods I generated a hypothesis that a liver injury is responsible for the initiation of ME/CFS and similar syndromes such as GWI.

-In the following slide #56 from this presentation ,I hypothesised that patients with ME/CFS have less than optimal liver function. This is why many patients when asked, say that they couldn't tolerate alcohol even before ME or that they "simply do not like drinking". Note in the slide also the mention on UPR (Unfolded Protein Response) that @Murph mentioned in this thread and ER Stress (Endoplasmic reticulum stress) that Dr Hwang has found with protein WASF3. Again, this was in 2018.

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-There were also slides that showed snapshots of patients discussing liver function. For those who have Liver function tests (LFTs) normal, unfortunately normal LFTs DO NOT rule out liver disease.

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-Finally, fast forward in 2024, we have @Chris Ponting study which has identified liver issues.

-A question that I have for those who mention that they feel better with alcohol, does this include cases where they had too much or this positive effect is achieved only with a tiny dose?

Please forgive me for coming up as a bit edgy but for so many years (since 2017) I am asking again and again for researchers to look more closely at the liver of ME/CFS patients.
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Had one glass of fizz 1/2 glass white wine yesterday plus sugary pudding. I was tipsy after 1/2 glass of fizz hence the subsequent glass. Obviously I was sitting at restaurant table for 3 hours as well, but then I’m always sitting up when drink anything so the alcohol is only ever going to be one element of the overall “stress” of socialising.
Main symptom that’s worse today is body aching ramped up brain is slower than normal. I was a bit dehydrated yesterday evening but not feeling hangoverish today. I think the last time I had any alcohol was early August.
 
DecodeME had a question on how well alcohol is tolerated. Did anybody have a look at what the results were and whether there was a difference in the ratio according to sex or whether there were any interesting relationships relating to alcohol tolerance?
 
I like this idea of a “hypothalamus mediated 'negative' signal” and “that human beings normally have two opposing hypothalamic responses to alcohol”. Partially because so much in our bodies seems to be a constantly changing precariously managed balance between different, often opposing factors. But also because it sits well with my comment about my experience being “perhaps like all the bad bits of drinking without any of the good bits?”

If there was something like this I do wonder how it would (1) be able to be studied and measured and (2) sit with all the theories we’ve had in the past over motivational factors and effort preference?
 
hotblack said:
If there was something like this I do wonder how it would (1) be able to be studied and measured and (2) sit with all the theories we’ve had in the past over motivational factors and effort preference?
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Maybe we just have to find a pharmacological agent that blocks the negative signal specifically and show that it makes people suddenly feel fine, like the dopamine analogs do for Parkinson's or pyridostigmine for myasthenia. I doubt it would be that easy but even if there was a clear effect with something it might be possible to pin down a pathway.

I think this may be an oversimplified model but sometimes things are simpler than you think.
 
(Fezolinetant) is a hormone-free medication

It's a neurokinin 3 (NK3) receptor antagonist and
doesn't contain estrogen."

Just posting this because hot flushes originate in the hyposalamus and the chemicals involveda are known.

I always felt poisoned with hot flushes.
 
obeat said:
(Fezolinetant) is a hormone-free medication

It's a neurokinin 3 (NK3) receptor antagonist and
doesn't contain estrogen."

Just posting this because hot flushes originate in the hyposalamus and the chemicals involveda are known.

I always felt poisoned with hot flushes.
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@obeat The hot flushes I experienced at menopause were really severe, it was more a sudden burn up. It got quite scary for me for a time. It was different though from the ME poisoned feeling.

It sounds like the poisoned feeling could be due to a neuro-toxin though?

Aside from that I remember one particular day in my very severe years where I questioned whether I had MS because the feeling of weakness that I had in my legs did not feel like weakness in the muscle but strange nerve weakness or some kind of nerve input.
 
EzzieD said:
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."
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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.
 
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