Question

Like most people with ME/CFS, I quickly found that alcohol makes me feel much worse and avoided drinking any alcohol since my illness started. I’ve been lucky and made some significant improvement over the past few years. A few weeks ago, I was invited to a big family social event and was persuaded to have a small glass of wine – which I have always enjoyed. To my surprise, it didn’t have the same adverse effect as it did in the past and since then I’ve enjoyed an occasional small glass of wine. Why does alcohol have such an adverse effect on ME/CFS? Has any research been carried out into why alcohol intolerance occurs in ME/CFS? And is it safe to start having an occasional drink of alcohol if you can cope with it again?

Answer

The simple answer to your first question is that while alcohol intolerance is a very characteristic diagnostic symptom of ME/CFS, we don’t know why it happens. As ME/CFS does not affect liver function, where alcohol is metabolised/broken down, I don’t think the problem lies there. A more plausible explanation, which links in with increased sensitivity to drugs that act on the central nervous system, is that there is a similar sensitivity that involves chemical transmitter systems in the brain that are affected by alcohol.

Unfortunately, no research has ever been carried out into the cause of alcohol intolerance in ME/CFS. The ME Association would be very willing to support such research – if we received a suitable grant application. The only published research is a small study from 2004 that looked at alcohol use pre- and post-diagnosis (Woolley et al.) – see below.

As a doctor with ME/CFS, I have had a very similar experiences with alcohol. Before developing the condition I also enjoyed a beer, or a glass of wine with a meal. My condition has improved over the years and I reached the point where I could start to tolerate and enjoy a small amount of alcohol again. I’m afraid I don’t have a simple answer as to whether drinking alcohol again is going to cause any harm, or delay any natural recovery process. But based on patient testimony, it seems that this is safe to do so if this is one of your pleasures in life – providing intake is not in excess, is limited to times when your illness is stable or improving, and that you are not experiencing any adverse effects after drinking alcohol.

Results: Two-thirds reduced alcohol intake. The most common reasons were increased tiredness after drinking (67%), increased nausea (33%), exacerbated hangovers (23%) and sleep disturbance (24%). One-third of the subjects also stopped drinking because “it seemed sensible.” Some had been advised to avoid alcohol, but the majority (66%) did so on the basis of personal experience.

Conclusion: Our data supports the anecdotal belief that chronic fatigue syndrome patients reduce or cease alcohol intake. This is associated with greater impairment in employment, leisure and social domains of function, and may hint at psycho-pathophysiological processes in common with other conditions that result in alcohol intolerance.

Research: Woolley J et al. Alcohol use in chronic fatigue syndrome. Journal of Psychosomatic Research | February 2004

Since publishing the website blog and survey, there has been a study into Long Covid and alcohol intolerance here: https://pubmed.ncbi.nlm.nih.gov/38288178/