Elimination diets

[Robert 1973]

Several posts have been split off from the thread: Rational hope of treatment?

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While I wasn't severe, my ME was able to switch off (felt, normal, healthy, energetic) over the space of minutes. That is not a sign of irreversible damage. To me it's a sign of a feedback loop with an overall factor that shifted it positive. While these temporary remissions were more frequent in the first year, I had one ~10 years after the start.

In 1994 when I had been unwell for about 2 years, I was referred to Dr Swinburne, an immuno-pathologist in Leeds who had an interest in ME/CFS. She suggested that I should try an elimination diet to see if I was allergic or intolerant of any foods.

After a few days on the diet I felt so much better I thought I was cured and started going on short flat walks. One day I walked about a mile on the flat around Roundhey lake. My muscles were a bit stiff and sore but they felt normal – like the muscles of a 20 year old boy that hadn’t been used for 2 years. I was so ecstatic that I cried as I completed the circuit of the lake and tears continued to stream down my face as I drove myself home.

I was convinced that all I needed to do was to identify which foods were making me feel unwell and that my life would return to normal thereafter – in fact, not just normal but better than it had ever been as I would never take my health or being able to do normal things for granted again.

Unfortunately, the profound improvement only lasted a few days and then fell away sharply for no apparent reason. I hoped that I had just overdone it and that the improvement would return with sufficient rest but it never did.

As my ecstasy turned to despair, I remember Dr Swinburne telling me that at least we knew it was reversible, which was likely true – notwithstanding the fact that my 97 year old grandfather could walk a mile on the flat when he had fairly advanced cancer.

As my capacity diminished and the symptoms returned, I desperately sought answers. That there were none was almost impossible to accept. The weeks and months that followed were beyond the depths that I could ever previously imagined, and I’m not sure that I have ever really got over it.

At some point I read a book about elimination diets, which described exactly the experience I had had as being common and unexplained in people with ME/CFS – ie a temporary profound improvement after a few days. I can’t remember the name of the book or author, but it is documented somewhere and I’ve always felt that this reported pattern of responses may hold a clue to the mechanism – not only that ME/CFS is reversible (at least in some cases) but that there is something about an elimination diet which seems to temporarily switch off whatever it is that is making at least some people with ME/CFS feel unwell.

I don’t know if any of the boffins on here may have have any ideas. I was meaning to start a thread about it. Apologies if I’ve dragged this thread off topic.

 

[Creekside]

At some point I read a book about elimination diets, which described exactly the experience I had had as being common and unexplained in people with ME/CFS – ie a temporary profound improvement after a few days.

From my observations, foods can make ME symptoms worse than they otherwise would. I've had many food intolerances, and yes, when I avoid that food, I feel much improved. These intolerances can come and go, so whenever I start feeling worse, I have to retest the foods I've been consuming, to figure out which one I've become intolerant to. Some of my intolerances definitely involved my gut microbiome; two were solved by food poisoning flushing me out, and one by a probiotic capsule (obviously had lost a critical strain). Is it a microbial metabolite, an immune response, a vagal response (the vagus nerves can detect specific bacterial strains), or something else?

I’ve always felt that this reported pattern of responses may hold a clue to the mechanism – not only that ME/CFS is reversible (at least in some cases) but that there is something about an elimination diet which seems to temporarily switch off whatever it is that is making at least some people with ME/CFS feel unwell.

I agree. If we had some subjects with reliable responses to foods (or avoidance of), researchers could do before/after testing to see what changes. No guarantee they'd spot what changes, since there might be only minor fluctuations in what they're testing, and they're not testing where those minor fluctuations turn into dramatic ones, but it's better than random testing of blood or whatever.

 

[Robert 1973]

I agree. If we had some subjects with reliable responses to foods (or avoidance of), researchers could do before/after testing to see what changes. No guarantee they'd spot what changes, since there might be only minor fluctuations in what they're testing, and they're not testing where those minor fluctuations turn into dramatic ones, but it's better than random testing of blood or whatever.

I've thought this about "allergic" reactions to perfumes etc. This is one of the most reliable ways to trigger an allergic type reaction for me. It seems hard to believe that there isn't some change in something measurable in the blood - if we only knew what it was.

However, that is a bit different to my experience on the elimination diet. Perfumes and various aerosol cleaning products etc. as well as some foods trigger an allergic type reaction. But when that subsides I don't feel well, I'm just back to my normal state of severe ME/CFS without the extra allergic type feeling. On the elimination diet it wasn't just a relief from those symptoms, it felt like a complete relief of all my symptoms for a few days. I suspect that was just an accentuation of the same effect, but it suggests to me that whatever happens when we get reactions to foods and scents (or whatever the correct term is) may be a fundamental part of the mechanism of ME/CFS, not just a side effect.

The other anomaly that stands out to me is that so many of us are intolerant of alcohol. I don't know if anyone has come up with a theory about why it may be some common in ME/CFS when it is so uncommon in other debilitating illnesses, but I'm sure it must be a clue.

 

[Robert 1973]

I don’t know if any of the boffins on here may have have any ideas. I was meaning to start a thread about it. Apologies if I’ve dragged this thread off topic.

@MelbME @jnmaciuch @DMissa @Jonathan Edwards


Moderators: Should this have its own thread?

 

[V.R.T.]

The other anomaly that stands out to me is that so many of us are intolerant of alcohol. I don't know if anyone has come up with a theory about why it may be some common in ME/CFS when it is so uncommon in other debilitating illnesses, but I'm sure it must be a clue.

My prodromal onset coincided with massively worsened hangovers, to the point that I couldn't function much at all the next day, and sometimes the day after. The way my body responded to alcohol seemed to change. Unfortunately it also made me feel much better while I was drunk so I ended up relying on it to socialise while also being made very ill by it afterwards.

People sometimes told me I stank of vodka when I'd only had two or three pints in my early 20s (I don't think they believed me either because I used to drink a hell of a lot haha, but it wasnt the day after a big drinking bout or anything, very strange).

After my definite onset even a few drinks knocked me for six the next day. Again, I was only in my mid twenties and until I was 19 i used to just go into town with a headache and drink a coke and feel pretty much okay by the afternoon.

It was a shock to learn more about MECFS and realise it could be related. I see it a lot on the long covid groups too.

 

[Jonathan Edwards]

I don't have any bright ideas to add other than these experiences do tend to suggest that severe symptoms can be reversible. That may often be temporary but it does argue against a permanent structural basis.

 

[SNT Gatchaman]

The other anomaly that stands out to me is that so many of us are intolerant of alcohol. I don't know if anyone has come up with a theory about why it may be some common in ME/CFS when it is so uncommon in other debilitating illnesses, but I'm sure it must be a clue.

From a recent review article Alcohol-Associated Tissue Injury: Current Views on Pathophysiological Mechanisms (2022, Annual Review of Physiology) —

Extensive research in animal and in vitro models has elucidated the salient mechanisms involved in alcohol-induced tissue and organ injury. In some cases, these pathophysiological mechanisms are shared across organ systems. The major alcohol- and alcohol metabolite–mediated mechanisms include oxidative stress, inflammation and immunometabolic dysregulation, gut leak and dysbiosis, cell death, extracellular matrix remodeling, endoplasmic reticulum stress, mitochondrial dysfunction, and epigenomic modifications.

All of the bolded items have been implicated or at least suggested in ME/CFS so alcohol may be further contributing to dysfunction in any of those processes that might turn out to be directly relevant.

 

[Jonathan Edwards]

All of the bolded items have been implicated or at least suggested in ME/CFS

Yes, but all of them are always mentioned in any review about anything these days! Whether or not they are meaningful.

 

[Creekside]

This is one of the most reliable ways to trigger an allergic type reaction for me.

Are you talking about a type I allergy, or simply an unwanted response? Type I allergies are well-defined, with a histamine response. Simply feeling worse after exposure to a scent, or other stimuli, is not an allergic reaction. "Allergy" is all too often misused, and thus misleading. "Inflammation" is similarly misused, for immune reactions without the physical changes specific to inflammation. I'm not being pedantic; the difference between Type I allergies and responses that aren't Type I is important. Using incorrect terms leads to problems such as taking antibiotics for a viral infection.

It seems hard to believe that there isn't some change in something measurable in the blood - if we only knew what it was.

It's easy for me to believe: a chemical molecule can trigger a sensor in the nose, which triggers nerve firings, which can affect other nerves, causing serious symptoms, without changing the blood.

I see ME as a black box mechanism with multiple inputs. The output (severity of symptoms) can be affected by immune activation, our microbiomes (the vagus nerve can identify specific bacterial strains), and various other sensory inputs (light, sound, chemicals). Emotional states might also affect the outputs (or how the outputs are processed). I think we need more development of brain-measuring technologies, to be able to see before/after changes in the brain. If a factor can reliably trigger extreme brainfog, for example, there should be consistent differences in brain cells. That technology is a major challenge, so funding goes to useless blood tests instead.

 

[obeat]

.https://www.s4me.info/threads/alcohol-intolerance-poll-please-do-the-poll-even-if-your-answer-is-no.40928/

I thought that in this thread the hypothesis was a problem with signalling in the hypothalamus?