Gastroparesis, post-prandial pain, eating difficulties

Posts moved from Maeve Boothby O'Neill - articles about her life, death and inquest

Andy said:
Link is to a tweet that shows a screenshot of a tweet by Zachary Grin, that was retweeted by Paul Garner, that claims that inability to eat in ME/CFS is "clearly functional".

Code: 
https://x.com/Silas33/status/1817104914922799261
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Dr Blitshteyn on it
Regarding a tweet by a physical therapist saying that "there is no disease process that explains why someone with #MECFS can't chew or swallow and that it's "functional"... Dysphagia and esophageal disease in general are common in patients with connective tissue, mast cell hyperactivity and autonomic disorders, all of which can be associated with MECFS. As someone who claims to be a big expert on FND, he should know that FND is a "rule-in" diagnosis, not a diagnosis of "that's not how the body works, and therefore, it must be functional."

PS. I had to block this person a while ago because he is a disrespectful and ignorant mansplainer who insisted that POTS is FND or highly comorbid with FND despite data and diagnostic criteria demonstrating otherwise.




https://twitter.com/user/status/1817197264739180769
 
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Interesting that I cross-posted with Amw66 on this.

I thin we can agree that it makes no sense to say that EDS would be associated with a 'functional problem'. 'MCAS' might be less clear since the mast cells might just be 'malfunctioning'.

But we don't have any evidence for either of these conditions, if they exist, having anything to do with ME or indeed with eating problems as far as I am aware. If there is published literature let us discuss it but I am not aware of anything substantive.

I think Dr Blitshteyn is talking nonsense and we should be just as wary of her as of the BPS people.

The more I look at this the more I come to the view that difficulty feeding in very severe ME/CFS almost certainly has nothing to do with structural gut problems or even putative motility problems like gastroparesis. It doesn't make sense in pathogenesis terms. What makes much more sense to me is that the intolerability of eating is just another facet of the intolerability of exertion and sensory stimuli like light, sound, touch. It is a problem with a signalling mechanism that may include a vomiting response but has nothing to do with there being anything wrong with the gut itself. (Note that that does not mean that modifying gut function might not help. It might well help, simply by making things easier another way.)
 
Jonathan Edwards said:
The more I look at this the more I come to the view that difficulty feeding in very severe ME/CFS almost certainly has nothing to do with structural gut problems or even putative motility problems like gastroparesis. It doesn't make sense in pathogenesis terms. What makes much more sense to me is that the intolerability of eating is just another facet of the intolerability of exertion and sensory stimuli like light, sound, touch. It is a problem with a signalling mechanism that may include a vomiting response but has nothing to do with there being anything wrong with the gut itself. (Note that that does not mean that modifying gut function might not help. It might well help, simply by making things easier another way.)
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If people want to discuss this, we have a thread:
Gastroparesis and post-prandial pain
 
Jonathan Edwards said:
The more I look at this the more I come to the view that difficulty feeding in very severe ME/CFS almost certainly has nothing to do with structural gut problems or even putative motility problems like gastroparesis.
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Still I think it's possible that individual patients with ME/CFS can get all sort of structural issues as a random comorbidity too -- be it cancer, stroke or structural motility problems with the stomach etc. If pwME were immune against getting such structural issues, I think that would be interesting finding worth to investigate?

I have to admit though I have no clear understanding about some of the terminology.

For example the recent findings on severe morning sickness in pregnancy probably caused by a hormone the fetus produces. (link to forum thread)

What terminology would fit here?

Is it somewhat comparable to your hypothesis on "writing on the wall" signalling causing symptoms in ME/CFS?

Could you still call this 'physical' but not 'structural' pathology?

Edit: And if yes, would the findings on severe morning sickness in pregnancy imply that the milder forms where no reaction to that particular hormone can be identified are probably not physical but functional or whatever?
 
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Jonathan Edwards said:
The more I look at this the more I come to the view that difficulty feeding in very severe ME/CFS almost certainly has nothing to do with structural gut problems or even putative motility problems like gastroparesis. It doesn't make sense in pathogenesis terms. What makes much more sense to me is that the intolerability of eating is just another facet of the intolerability of exertion and sensory stimuli like light, sound, touch. It is a problem with a signalling mechanism that may include a vomiting response but has nothing to do with there being anything wrong with the gut itself. (Note that that does not mean that modifying gut function might not help. It might well help, simply by making things easier another way.)
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'Intolerability of eating' as an extension of intolerance of exertion and sensory stimuli doesn't really make sense to me.

I would get a pain in my gut after eating sometimes, especially in the evening. As Michelle reported, for me the pain was accompanied by a very clear need to lie down.
Michelle said:
What was especially impairing was that after I'd eat, I absolutely HAD to lay down.
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But, outside of PEM, I don't really get any sensory sensitivities, not light or sound or touch. I don't have an immediate sensitivity to exertion either - I can often tolerate exercise at the time. But, I did get that gut pain after eating.

BeautifulDay said:
I have intermittent gastroparesis. It's actually always there at a minimal level of very slow digestion. Yet, there are days where my stomach almost completely shuts down. On those days I get a painful bump just below my right rib. It's more likely to get into the crazy gastroparesis pain of almost fully shutting down right before my menses. But, it also pops up at other times. Therefore, I always have gastroparesis, but intermittently it's really brutal.
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Beautiful Day's mention of this is interesting - she and her family had a diagnosis of genetically caused mitochondrial disease. @Jonathan Edwards, I think you said that the idea of gastroparesis doesn't make sense in ME/CFS. Could it not be that muscles in the gut aren't getting enough oxygen to function properly (maybe because the blood supply isn't adequate) or the nerves aren't giving a good signal to the muscles? It seems to me that there might be possible pathology that could account for the pain.

Beautiful Day noted that her pain varied with her menstrual cycle. I am hardly ever bothered with post-prandial pain or migraines now. I think that's been the case for a few years now. The absence of those pains could just be part of the weird and unaccountable ebb and flow of symptoms that is ME/CFS - but the timing of the absence of those pains aligns with completion of menopause.
 
Jonathan Edwards said:
The more I look at this the more I come to the view that difficulty feeding in very severe ME/CFS almost certainly has nothing to do with structural gut problems or even putative motility problems like gastroparesis. It doesn't make sense in pathogenesis terms. What makes much more sense to me is that the intolerability of eating is just another facet of the intolerability of exertion and sensory stimuli like light, sound, touch. It is a problem with a signalling mechanism that may include a vomiting response but has nothing to do with there being anything wrong with the gut itself. (Note that that does not mean that modifying gut function might not help. It might well help, simply by making things easier another way.)
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This is only my own observation but I can attest to this. I did have documented gastroparesis but it came out of left field when I had a big ME/CFS crash. That said, in hindsight, I was already struggling with my digestion after the peritonitis that made me very severe as I had tachycardia for hours after a meal, but this crash tipped me over into a worse place.

What it felt like to me is that my gut is yet another part of my body that “shut down” as response to overexertion, or maybe as a sort of protective mechanism against it.
ME/CFS Skeptic said:
Eating can also be combined with tube-feeding. So if there is malnutrition or the patient is severely underweight they should first stabilise his/her weight with, for example, tube feeding. Then they can try to treat the underlying problem.

In other words, I see no reason why a physician would have to choose one versus the other unless there is an ideological view that tube feeding would 'medicalize' and thus worsen the underlying eating problem.
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Ditto. This is exactly the approach that the clinical nutrition hospital unit that follows me takes, and on their locked ward for eating disorders I saw anorexic patients who had NG tubes (because they needed to put on weight quickly to avoid sinking further into severe malnourishment) who were also trying to eat orally. They are certainly not mutually exclusive.
 
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Jonathan Edwards said:
The more I look at this the more I come to the view that difficulty feeding in very severe ME/CFS almost certainly has nothing to do with structural gut problems or even putative motility problems like gastroparesis. It doesn't make sense in pathogenesis terms. What makes much more sense to me is that the intolerability of eating is just another facet of the intolerability of exertion and sensory stimuli like light, sound, touch.
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Perhaps the reason ME/CFS is misunderstood is because our experience of fatigue and exertion intolerance is hard to comprehend.

Fatigue makes doing things unpleasant. A normal person that does not experience significant fatigue might find it difficult to comprehend that there is a limit to how much of that unpleasant feeling one can tolerate. Many people are used to push through their ordinary levels of fatigue and have made doing so a part of their identity and consider it a strength of their character, but that just means they're not experiencing the same thing we patients do.

In severe cases perhaps even chewing an entire meal might become intensely unpleasant and less preferable to not eating enough.

There may be a body response occurring that is intended to force us to minimize our activities by making them unpleasant, and this response will rapidly increase in intensity with repeated or sustained exertion.

I remember early in my illness I often said "I don't want to do this" when asked to do something. I wanted to avoid activities because they would make me feel worse, and I felt like I had little capacity to tolerate feeling worse. There's this feeling of having scarce energy reserves and needing to conserve them and not feeling well and needing to avoid anything that can make it worse.

Outside observers think we're choosing poorly because they think we have spare capacity to make choices but there is very little room for choices.
 
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Jonathan Edwards said:
What the advice document needs to say is that there is a growing realisation that there are people who find it impossible to eat and keep food down for reasons we have no understanding of' in the context of ME/CFS and perhaps in other situations. We can call these problems functional but with all this confusion it would be better not to. The document can then continue much as it is indicating that such cases may require any of the modalities available for feeding support, dependent on the known major drawbacks of TPN in particular.
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I wonder if this could be added to the original thread, in case severely ill members who've experienced this aren't able to cope with following Maeve's story?

My initial response is that we do have some understanding of it—eating and digesting food is demanding, and people who're very unwell can lack the capacity to do enough of it—but we don't have evidence of how to manage or address it, especially when it's long term rather than a phase during recovery.

In ME/CFS, there's the added complication that eating and digestion, like all effort, produces PEM. We might have no direct evidence that PEM has a compounding effect that risks making the person more and more ill, but it fits with what we know about ME/CFS generally, and with the pattern observed in people with very severe illness. Eating and digesting has to be done so frequently that recovery time becomes an issue.

I realise that 'understanding' has more than one meaning, and that it might be actively unhelpful to employ it the way I have. It just stands out to me as a patient because it seems so obvious that once pwME get to a certain level of severity, they're likely to struggle with energy for eating and digestion. So much so that it'd throw what we 'understand' about ME/CFS into confusion if they didn't.
 
Jonathan Edwards said:
Interesting that I cross-posted with Amw66 on this.

I thin we can agree that it makes no sense to say that EDS would be associated with a 'functional problem'. 'MCAS' might be less clear since the mast cells might just be 'malfunctioning'.

But we don't have any evidence for either of these conditions, if they exist, having anything to do with ME or indeed with eating problems as far as I am aware. If there is published literature let us discuss it but I am not aware of anything substantive.

I think Dr Blitshteyn is talking nonsense and we should be just as wary of her as of the BPS people.

The more I look at this the more I come to the view that difficulty feeding in very severe ME/CFS almost certainly has nothing to do with structural gut problems or even putative motility problems like gastroparesis. It doesn't make sense in pathogenesis terms. What makes much more sense to me is that the intolerability of eating is just another facet of the intolerability of exertion and sensory stimuli like light, sound, touch. It is a problem with a signalling mechanism that may include a vomiting response but has nothing to do with there being anything wrong with the gut itself. (Note that that does not mean that modifying gut function might not help. It might well help, simply by making things easier another way.)
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Obviously I’m not a scientist, but there’s been a good few people here and in the twitterverse giving anecdotal evidence of eating being an “energetic” activity for pwME.

Notably, people using Visible are highlighting how eating pushes them into over-exertion (showing as red on their graphs, using a lot of points) handy visiual.

I do think this might be a key point to take forward somehow.
 
MrMagoo said:
Obviously I’m not a scientist, but there’s been a good few people here and in the twitterverse giving anecdotal evidence of eating being an “energetic” activity for pwME.
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It involves a sense of exertion, yes, but 'energetic' doesn't otherwise have any useful scientific meaning. It just feels like hard work. I think it is important not to start talking about ATP and mitochondria and energy in a metabolic sense when we have no evidence that is the problem and in a way everything points to it not being the problem. The problem seems much more like an error of signalling.
 
Jonathan Edwards said:
It involves a sense of exertion, yes, but 'energetic' doesn't otherwise have any useful scientific meaning. It just feels like hard work. I think it is important not to start talking about ATP and mitochondria and energy in a metabolic sense when we have no evidence that is the problem and in a way everything points to it not being the problem. The problem seems much more like an error of signalling.
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Diet induced thermogenesis accounts for ~10% of energy requirement in energy requirement calculations.
 
Jonathan Edwards said:
It involves a sense of exertion, yes, but 'energetic' doesn't otherwise have any useful scientific meaning. It just feels like hard work. I think it is important not to start talking about ATP and mitochondria and energy in a metabolic sense when we have no evidence that is the problem and in a way everything points to it not being the problem. The problem seems much more like an error of signalling.
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As I say, not a scientist but my point being that when pwME eat it’s a big investment of energy for us, in layman’s terms. This can be “seen” on the auto pacing app Visible. Therefore, even doing heart rate pacing by hand with pen, paper and wearable, it can be seen as an “energetic” activity. These Drs don’t understand that.


IIRC Dr Patel? was asked about feeding policies by Sean O’Neill, Patel said there were none, the Coroner interrupted and said a whole day was to be spent looking at that, should bring up lots of points of interest for your Qeios piece.
 
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Vomiting up a meal causes a crash for me. I had food poisoning for about a year. Both the vomiting and the diarrhea made me crash and it was over and over again every day

Choking on food/drink as well. My HR increases and I feel wiped out later.

If Maeve was being sick with the NG tube in hospital it would have been more energy expenditure on top of everything else.
 
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Trouble is, disease physiology isn't simple. 10% of calories may be used to digest and transport and store but you are still 90% up on before the meal. So it isn't a problem of energy depletion.

And "effort" or "exertion" are how your brain represents what is being done and achieved in the body but there isn't any "exertion" going on in a muscle or a liver, just chemical reactions.

The only reason I can think that using calories to digest might trigger symptoms is if some byproduct was signaling. But what?

As I understand it , symptoms like fatigue or nausea or tachycardia are likely generated by autonomic responses to what the system is expecting to be a threat based on complex interactions. I suspect that the actual usage of energy is largely irrelevant. It is what the system predicts that raises the alarm.

The symptoms are clearly inappropriate for the normal situation of eating. So what we need to understand is why the response fails to follow normal physiology. The normal physiology just tells us what is not going as usual in the illness situation.

People like Todd Davenport make it sound as if it is simple. It isn't.
 
So i don't see why payback in form of pain and having to lie down isn't comparable to the payback of PEM i.e. ME type exertion intolerance.

Some sort of signaling is saying no thanks - later. But also as Trish has said, at the time , if you are pushing things.

If the stomach was starved of oxygen at least a few people with ME would be in the operating theater with ischaemia. And what sort of mechanism would mediate the other features of ME and stomach ischaemia? It makes no physiologic sense to me.

When I spent twenty years trying to work out what going on in RA I had a sense that one ought to use Ockham's razor and not postulate too many processes. When I finally understood what was happening i was amazed to see that all 9 apparently unrelated clinical features fitted perfectly with one single process. I am prepared to bet that the same is true of ME/CFS.

And time and time again we hear that ME us associated with another so and so and surprise surprise its another so and so where nobody can agree about the reliability of the tests. So the quacks can sell it.

The onus is on the people who claim all these mechanisms to do some decent research and validate them.
 
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