Could pacing be the "banana diet" of me/cfs? A prompt for a discussion

Kitty said:
But the disease must have been known in antiquity, and people may have had theories that were near the mark.
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Dietary management of disease was central to Western medicine 1850-1950 so I guess that people realised that exclusion diets seemed to help. It was then just a matter of systematically observing the effect of re-introduction of maybe fifty basic foods, of which wheat would be an obvious option, along with milk, beans and eggs maybe.
 
Kitty said:
My hunch is that this difference in response to immune stimulation is one of the things that holds a clue.
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I absolutely agree. I was more contrasting with banana diet in terms of, bananas didn’t make some people worse and some people better. But I absolutely agree vaccine reactions or more generally immune reactions hold an important clue. And it’s one of the aspects that has been so frustrating to see so few healthcare professionals show any curiosity about.

Trish said:
Just as celiac can't stabilise for a while on a gluten free diet then add graded gluten introduction, or gluten-up, we can't stabilise with pacing, then start gradually adding exertions.
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Another similarity is that the ‘pacing up’ seems to work with some intolerances but is obviously impossible for others? I have family and friends that are coeliac or full anaphylaxis at peanuts, but have also heard of people who can slowly introduce peanuts into their diet. Unless that’s bunkum.
 
hotblack said:
Another similarity is that the ‘pacing up’ seems to work with some intolerances but is obviously impossible for others? I have family and friends that are coeliac or full anaphylaxis at peanuts, but have also heard of people who can slowly introduce peanuts into their diet. Unless that’s bunkum.
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A recent study called LEAP (learning early about peanut) researchers found that introducing peanuts early in a child's life can prevent peanut allergy for higher risk groups.
 
There are other factors that developed over time that changed and made my level of disability worse, one is developing OI, and the other is being in constant immune activation/viral mode, but delayed PEM has always had the same distinctive onset and resolve. It never changed in decades.
 
This is purely anecdotal, but I have heard about multiple pwME/CFS that have gone from bedbound to recovered while virtually not crashing for ~18-24 months. Some were in the earlier stages (the upwards trajectory started within two years), but others had been sick for a very long time.

I think it would be interesting to see what would happen if you put bedridden people in a situation where they had the possibility of avoiding all PEM (and possibly also the hour+ lasting immediate symptoms). It would require a lot of help and accommodation, and it would also require a tremendous effort to pace perfectly for so long.

Although the results might be quite cruel - maybe a significant proportion of pwME/CFS didn’t have to be sick for so long if society actually bothered to help them as much as they help e.g. cancer patients..
 
hotblack said:
have also heard of people who can slowly introduce peanuts into their diet. Unless that’s bunkum.
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I don't think it is, I know someone it applies to. But whilst they got distressing allergic reactions if they ate peanuts, they never progressed to anaphylaxis. They could now make peanut crunch for their kids without a reaction, but still wouldn't eat it.

So maybe the degree of reaction matters? It would be much more dangerous to try desensitisation if minuscule amounts could trigger a potentially life threatening situation.

I'm never sure whether true allergies like this and the severe intolerances (to everything from activity to sound to certain foods) we see in ME/CFS are really comparable though.
 
Murph said:
We all know pacing reduces symptoms.
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No, AFAIK, it only avoids increasing symptoms. Gluten causes symptoms for celiacs, and exertion causes or increases symptoms in most PWME. Avoidance of exertion doesn't solve ME.

Identifying the mechanism of PEM would be helpful, but wouldn't necessarily lead to a treatment for the baseline symptoms of ME. I stopped having PEM, but my baseline symptoms were unchanged.

I think identifying the mechanism of PEM might be as difficult (and resource-consuming) as identifying the mechanism of ME, with less return on that investment. Physical exertion causes too many effects to easily identify which one is involved. There are also different responses to types of exertion; I triggered on what seems to be muscle damage, while others trigger on duration of exertion. Then there's cognitive exertion, which seems separate from physical exertion as a trigger. Some of us have found PEM blockers or reducers, from completely different chemicals. Dreadfully complex.

If we came up with a treatment for ME, that would solve the PEM problem too.
 
Creekside said:
No, AFAIK, it only avoids increasing symptoms. Gluten causes symptoms for celiacs, and exertion causes or increases symptoms in most PWME. Avoidance of exertion doesn't solve ME.

Identifying the mechanism of PEM would be helpful, but wouldn't necessarily lead to a treatment for the baseline symptoms of ME. I stopped having PEM, but my baseline symptoms were unchanged.

I think identifying the mechanism of PEM might be as difficult (and resource-consuming) as identifying the mechanism of ME, with less return on that investment. Physical exertion causes too many effects to easily identify which one is involved. There are also different responses to types of exertion; I triggered on what seems to be muscle damage, while others trigger on duration of exertion. Then there's cognitive exertion, which seems separate from physical exertion as a trigger. Some of us have found PEM blockers or reducers, from completely different chemicals. Dreadfully complex.

If we came up with a treatment for ME, that would solve the PEM problem too.
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Good point. I usually talk of living with PEM as living with diabetes without insulin. They used to slowly starve children to death because letting them eat more would kill them sooner. So it’s no so outlandish to suggest a lot of rest if doing more will make you more ill!
 
Jonathan Edwards said:
Dietary management of disease was central to Western medicine 1850-1950 so I guess that people realised that exclusion diets seemed to help. It was then just a matter of systematically observing the effect of re-introduction of maybe fifty basic foods, of which wheat would be an obvious option, along with milk, beans and eggs maybe.
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This is an apt comment; I think it points to how trends in understanding medicine determine what gets cured in each era. Another of my favourite examples is scurvy, which was famously "cured" centuries ago, but then scurvy came roaring back among polar explorers only 100 years ago and the Royal Navy were unsure what to do about it.

Feature: Forgotten Knowledge | Bluesci

www.bluesci.co.uk www.bluesci.co.uk

The development of germ theory had, arguably, become the centre of the medical universe, and undermined their understanding of what actually worked.

As for trends in understanding medicine now, I think genes are central and cancer is the big beneficiary of that. We've made some good progress there.

Perhaps endocrinology is about to rotate in to the centre post Ozempic?!
 
Hello, I'm new to this forum have just joined. Sorry if this is no longer relevant to the thread as it has developed. About the banana diet; my late mother told me that when she was a nurse at the end of WW2, and bananas were extremely scarce, the hospital paediatrician would send someone down to the docks to commandeer any deliveries and take the lot if at all possible. This would have been late 1940s, UK.
 
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