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

[Murph]

Before coeliac disease was understood, there was the banana diet. It was something of a joke at the time, but coeliac disease was fatal for children and so people were desperate. We now know that it would work as a coeliac treatment and why. Today it seems far less crazy. But at the time the banana diet was a medical mystery. Its proponents thought there was something in the bananas that helped. And they applied it incorrectly, discontinuing a pure banana diet once the child was older.



I like to think about the banana diet when I survey the scene of me/cfs. Is it possible that among our interventions is one that contains within it the germ of a proper solution?

Perhaps, perhaps not. But I think pacing is probably the best candidate. We all know pacing reduces symptoms. You even hear stories of people who paced well for a long time and improved their baseline. What specifically is pacing doing? Is there a way to amplify its effectiveness?

'Spontaneous' remissions, improvements and even cures are sometimes seen. This is not a disease that offers a fast track to disability for everyone. I find that makes me more open minded to the idea that, just possibly, certain combinations of conditions can provide relief - conditions that a person could conceivably stumble into in normal life. Of course, certain combinations of conditions make people worse too, so trying things is very risky!

This post is offered up as a prompt for discussion. Perhaps it is not useful as a discussion, which is fine. Perhaps it even offends people - in which case I apologise. But I really like to consider the way the world looks in the lead up to a cure, and what I take from coeliac is that something resembling a cure can pre-exist and even be in use before the scientific basis for it is discovered. If there's a general principle of what those sorts of things might look like ex-ante, I'd like to know!

 

[Alinda]

To me, the short improvement of symptoms after getting a virus feels more like the "banana diet". A lot of people I have spoken to, either with long covid or me/cfs after an infection, seem to have it, and its such a clear correlation.

Edit: although i wouldn't considering getting a virus willingly any sort of "treatment"

 

[OrganicChilli]

Do people who feel better after contracting a virus still get PEM during that period if they don't pace?

 

[Alinda]

Do people who feel better after contracting a virus still get PEM during that period if they don't pace?

Personally I don't think I did last time it happened. I felt so good, and I can't see a big reduction in steps after it stopped.

 

[Murph]

One made-up example about pacing:

Say our blood vessels are providing inappropriate blood flow to the brain and scientists discover that the brain is exceptionally sensitive when blood flow error signals are on both the high and low side, and calls in a centrally-mediated immune reaction. Pacing keeps the flow in a more normal range and thereby improves symptoms. Later we are able to say: aha, this is why we all lay down all the time!

But of course by then we don't need to lie down so much because we monitor cerebral flow directly and take the drugs that keep cerebral flow in range, and all the studies show if you have less than 4 minutes a day of disturbed cerebral flow you tend to recover fully over a two year period (sd: 9 months).

Just a dream of mine!

 

[Murph]

Among the implications of the banana diet is a rebuttal to the popular saying: "if that worked we'd know."

This diet did work, at least as long as the coeliacs stuck to it, but it was not considered legitimate.

I suspect we view evidence through a theory lens and tend to dimsiss evidence that has no theoretic basis. "That makes no sense," we say. "How could that possibly work?"

A fun example of the hegemony of the theoretic lens is this article about a food that data suggest could be good for you: Nutrition Science's Most Preposterous Result. The serious scientists want nothing to do with the finding they seem to have made!

 

[Murph]

Here's another familiar-seeming snippet on the history of coeliac: before they know the cause, some doctors propose it has a "nervous" cause.

 

[Snow Leopard]

Pacing doesn't really lead to improvement of functioning over time though, it just allows some people to carefully do something (within their limits) rather than nothing.

 

[Murph]

Pacing doesn't really lead to improvement of functioning over time though, it just allows some people to carefully do something (within their limits) rather than nothing.

Agree with that in general.
What do you think about the inverse idea - that being in rolling PEM can lower your baseline ?

 

[Snow Leopard]

Agree with that in general.
What do you think about the inverse idea - that being in rolling PEM can lower your baseline ?

I think we need to study that explicitly before forming any conclusions. It's not a universal experience but I'm sure some on this forum attest to it.

Most people naturally avoid "rolling PEM" anyway, because it sucks.

 

[Sean]

Most people naturally avoid "rolling PEM" anyway, because it sucks.

Yep. Independent of whether it has long-term benefits for the underlying disease process*, it is still worth it for the short-term benefits of simply not feeling as shitty now, and usually, as that patient gets better at it over time, being able to function at least somewhat better at practical day-to-day tasks, particularly self-care, but also including wider indirect benefits of getting out of the bed and house a bit more often, and increased quantity and/or quality of suitable social contact.

Such short-term benefits should usually have long-term benefits from improved general quality of life, even it makes little difference to a patient's physical capacity. In a similar way to pain control for otherwise untreatable conditions.

There might not yet be any meaningful treatments, let alone cures. But it should be able to help most patients have at least some life instead of enduring a endless desperate shitty existence.

(*I am inclined to think it does, especially if implemented early on. Early diagnosis and management/adaptation seem the only useful practical tools to hand for now, albeit limited, and not always of benefit for every patient. But, as you say, that needs to be properly studied.)

 

[AliceLily]

To me, the short improvement of symptoms after getting a virus feels more like the "banana diet". A lot of people I have spoken to, either with long covid or me/cfs after an infection, seem to have it, and its such a clear correlation.

Edit: although i wouldn't considering getting a virus willingly any sort of "treatment"

Do people who feel better after contracting a virus still get PEM during that period if they don't pace?

My ME onset was via a bad cold. The first symptom was severe lightheadedness and imbalance when walking. I think it would have been months later when I noticed I had cognitive changes. Actually, I have just remembered that it was the following year because I had to drop out of study due to the cognitive change.

Last year when I had Covid my thinking was clear. I cut out the material for 3 dresses in one morning! And that afternoon went for a walk over to park. I did have the Covid slow walk and a bit of breathlessness but I did not get payback and I did not feel like I had the ME.

Is there something in a cold or virus that is doing the switching on and off?

 

[hotblack]

Others have covered my feeling that pacing is different in important ways, specifically it’s not a treatment, but I suppose you could see both as management techniques to avoid getting worse.

Viruses or vaccinations are different too in that people do talk of periods of feeling better, but equally people talk about them triggering relapses or worsening of symptoms. Banana diet didn’t do that.

But I really like the idea of thinking about how we will very likely be able to look at things in a different way once we understand more about mechanisms. Be that therapies people have tried, stories of recoveries, triggers and symptoms experienced or the results from various studies.

 

[Adrian]

Perhaps, perhaps not. But I think pacing is probably the best candidate. We all know pacing reduces symptoms. You even hear stories of people who paced well for a long time and improved their baseline. What specifically is pacing doing? Is there a way to amplify its effectiveness?

The thing pacing indicates to me is that ME is part of a dynamic system and needs to be looked at as such. So if things like blood samples are taken and compared they need to be done with knowledge of the state of exertion (and hence pem effects). Otherwise signals can be lost in fluctuations caused by different levels of exertion.

There is some research going on in this direction (I think the Workwell foundation and Alain Moreau).

 

[Trish]

The parallel between the banana diet for celiac disease and pacing for ME/CFS seems quite apt.

In both cases the biological cause of symptoms was or is unknown.

The thing that made symptoms worse was removed (gluten or exertion), so it was the absence of a harmful input that reduced symptoms, rather than the addition of a curative input.

I think that highlights the point of pacing for ME/CFS. It's not a treatment that takes away the illness, it's an avoidance of harm that makes the illness worse.

That's why strategies that work for overcoming deconditioning in people who don't have ME/CFS such as pacing up and GET aren't right for ME/CFS. 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.

 

[Murph]

I really like the idea of thinking about how we will very likely be able to look at things in a different way once we understand more about mechanisms. Be that therapies people have tried, stories of recoveries, triggers and symptoms experienced or the results from various studies.

Yes! I look forward to being able to say, aha, this is why the rituximab study showed this, or why this scientists went down this rabbit hole, or why these people from this culture /with these genetics didn't seem to suffer so badly, etc etc.

I'm also wondering if by imagining ourselves in that future looking back we might get better perspective on the evidence we do have now. Does it help us sort wheat from chaff even a tiny bit?

There's a bit of a paradox here: I think future us will be less constrained by theory and more prone to see the evidence for itself. But if, ex-ante, we take the perspective that an idea doesn't have to make sense yet, we open the door to all sorts of nonsense that is backed by very poor evidence as well as a lack of theory.

It's not a treatment that takes away the illness, it's an avoidance of harm that makes the illness worse.

Defining the specific thing that pacing avoids would be the parallel to discovering gluten. Is it pushing our phosphocreatine levels down below a threshold? running low on ATP in certain endothelial cells? expressing too much eATP in bloodstreams? Building up too much lactate in certain cells? Denying sufficient bloodflow to the brain? immune cells that respond to particles made during exercise?

 

[Jonathan Edwards]

Is there some erudite member who can tell us how it was discovered that coeliac was sensitivity to wheat? That might be a useful lesson to guide us in finding out what it is about exertion that people with ME/CFS cannot tolerate.

 

[Kitty]

gluten-up

I love that!

Viruses or vaccinations are different too in that people do talk of periods of feeling better, but equally people talk about them triggering relapses or worsening of symptoms. Banana diet didn’t do that.

Yes and no, maybe?

Temporarily the AZ vaccine was a cure for me, yet it made other people much worse.

But no two immune systems are the same. That's why individuals have very different risks of developing an autoimmune disease and needing a banana diet; it's presumably also why some with ME/CFS have very different reactions to a vaccine.

My hunch is that this difference in response to immune stimulation is one of the things that holds a clue.

 

[Murph]

Is there some erudite member who can tell us how it was discovered that coeliac was sensitivity to wheat? That might be a useful lesson to guide us in finding out what it is about exertion that people with ME/CFS cannot tolerate.

The short answer is epidemiology. In the early 1940s in the Netherlands they had no wheat. The children's doctor who was usually in charge of coeliac cases found himself putting his feet up for a few years. While twiddling his thumbs, he developed a hypothesis, and later tested it.

In my hopeful moments I see covid as the parallel: this big wave of long covid is, we later see, the moment some perceptive person figured it out.

 

[Kitty]

Is there some erudite member who can tell us how it was discovered that coeliac was sensitivity to wheat?

I don't know whether this gives you the how, as I can't access it:

Discovery of gluten as the injurious component in celiac disease - PubMed

Celiac disease is a common disorder that was first identified in the early 1900s. Multiple diets were used to treat celiac disease until 1953, when Dicke, Weijers, and van de Kamer identified gluten as the cause of the symptoms. Today, gluten avoidance continues to be the only treatment for...

pubmed.ncbi.nlm.nih.gov

But the disease must have been known in antiquity, and people may have had theories that were near the mark.