Severe difficulties with eating in ME/CFS

This is an interesting case but it raises as many questions as answers, as SNTG says.

If gastroparesis is due to failure of stomach nerves then how come it improved? Autonomic nerve damage does occur in diabetes but that is a very different context.

The NHS information page says: Gastroparesis is thought to be a problem with the nerves and muscles in the stomach. It's not always known what causes it.

It seems people aren't even sure it is a problem with nerves. To me it is relevant that his sort of information will be written by the same gastroenterologists who are trying hard to justify not providing feeding support for such people, including people with ME/CFS. The people who Dr Roy was quoting in relation to Maeve Boothby O'Neil, saying feeding support was against guidelines.

We also recently saw a paper suggesting that tests for gastroparesis were unreliable and that the diagnosis made no difference to outcome and care.

My guess is that like ME/CFS this is a situation nobody actually understands. Gastroparesis is all very well as a diagnosis but if it comes under the 'functional' category, as it will, and we know what the implications of that are, I am not sure it is helpful.
 
Jonathan Edwards said:
This is an interesting case but it raises as many questions as answers, as SNTG says.

If gastroparesis is due to failure of stomach nerves then how come it improved? Autonomic nerve damage does occur in diabetes but that is a very different context.

The NHS information page says: Gastroparesis is thought to be a problem with the nerves and muscles in the stomach. It's not always known what causes it.

It seems people aren't even sure it is a problem with nerves. To me it is relevant that his sort of information will be written by the same gastroenterologists who are trying hard to justify not providing feeding support for such people, including people with ME/CFS. The people who Dr Roy was quoting in relation to Maeve Boothby O'Neil, saying feeding support was against guidelines.

We also recently saw a paper suggesting that tests for gastroparesis were unreliable and that the diagnosis made no difference to outcome and care.

My guess is that like ME/CFS this is a situation nobody actually understands. Gastroparesis is all very well as a diagnosis but if it comes under the 'functional' category, as it will, and we know what the implications of that are, I am not sure it is helpful.
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Is it at all similar to what you get temporarily when you have a general anaesthetic ? And are warned not to go too overboard (even though you are often starving as you had to fast before op) eating too much for the next x hours?
 
bobbler said:
Is it at all similar to what you get temporarily when you have a general anaesthetic ? And are warned not to go too overboard (even though you are often starving as you had to fast before op) eating too much for the next x hours?
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I think that has more to do with the emetic effects of things like opiates, often used as part of anaesthesia. But maybe similar in that the problem is not in the gut nerves themselves.
 
Jonathan Edwards said:
If gastroparesis is due to failure of stomach nerves then how come it improved? Autonomic nerve damage does occur in diabetes but that is a very different context.

The NHS information page says: Gastroparesis is thought to be a problem with the nerves and muscles in the stomach. It's not always known what causes it.

It seems people aren't even sure it is a problem with nerves.
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The answer may be in non-autonomic nerves, instead spinal sensory nerves in dorsal root ganglia, and involving innate immune cells. An interorgan neuroimmune circuit is identified, mediated via mast cells, though not classical IgE (in the case of the following paper, bladder / colon). An interorgan neuroimmune circuit promotes visceral hypersensitivity (2025, Preprint: Research Square)

Classically, internal sensations such hunger, satiety, and sickness are mediated by vagal sensory neurons that reside in the nodose ganglia. Beyond sensing somatic inputs, recent studies are shedding new light on the importance of spinal sensory neurons within the DRG in regulating a variety of visceral physiologies. However, the spectrum of symptoms and the mechanisms underlying noxious sensations from the viscera remain poorly understood. Here, we identify a unique subpopulation of DRG sensory neurons that respond to cues from two distinct organs and critically mediate the development of interorgan visceral hypersensitivity. The existence of polyorganic sensory neurons may explain what drives multiorgan visceral pain syndromes, and why visceral pain is so difficult to localize.
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Mast cells are strategically situated at barrier surfaces challenged by both external and internal threats […] the identification of MRGPRX2 as a critical pathway in bladder-colon irritation reveals an alternative mechanism by which mast cells trigger nociception and host-protective behavior in deeper and caudally distributed pelvic organs. We speculate that while IgE is evolutionarily designed to react to potential threats in organs that continuously sample the environment, MRGPRX2 may have particularly unique roles in organs with primarily expulsive functions such as the bladder.
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Our current findings reveal how the sensory arc coordinates interorgan reflexes that may bypass traditionally assumed pathways of sensorimotor regulation. Given that autonomic motor neurons exhibit highly selective projection and organ-specific physiology, we speculate that shared sensory networks establish a neuroanatomic basis for the timely coordination of visceral functions.
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A number of posts have been moved from a thread about a named person who has been hospitalised.
This posts refers to emails to decision makers about the care of the person.

I doubt anyone even reads these emails, but on mine I included some questions
- if the photophobia is thought to be psychological or not related to ME, which treatment pathway are you following by suddenly removing light protection?
-Does this treatment advise against giving any warning or psychological support before removing the light protection?
-has a psychologist recommended no psychological support or warning of the removal of protection?
-it seems abusive to suddenly remove light protection from someone with photosensitivity, so please explain the risk assessments and steps taken in making the medical decision to suddenly remove it
 
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Post moved from a thread about a specific person
This case does seem to highlight the absurdity of an ME?CFS plan that aims to provide services for mild/moderate cases but completely ignores the severe. I suspect the inability of charities to help partly reflects the absence of much medical expertise.
 
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Jonathan Edwards said:
This case does seem to highlight the absurdity of an ME?CFS plan that aims to provide services for mild/moderate cases but completely ignores the severe. I suspect the inability of charities to help partly reflects the absence of much medical expertise.
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I think the issue as per usual is that the staff treating her seem to think she doesn’t have ME she’s just addicted to cyclazine/attention seeking/being difficult.

This is a problem we all face but it’s a million times worse when you’re so severe.
 
Jonathan Edwards said:
This case does seem to highlight the absurdity of an ME?CFS plan that aims to provide services for mild/moderate cases but completely ignores the severe. I suspect the inability of charities to help partly reflects the absence of much medical expertise.
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And yet following the sad story of Maeve Boothby O' Neill Devon and Exeter now have procedures for treating severely ill ME/CFS patients ( how good it is I do not know , but there has been some learning and changes in procedure ) .
It seems that this is only Devon and Exeter specific - why no national guidance ?
Sadly it looks as though it will be BACME ,( with their current focus on severe) who will fill the gap
 
Amw66 said:
And yet following the sad story of Maeve Boothby O' Neill Devon and Exeter now have procedures for treating severely ill ME/CFS patients ( how good it is I do not know , but there has been some learning and changes in procedure ) .
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My impression was that someone saw a commercial opening for a commissioned service. The whole thing seemed to be an exercise in whitewashing.
 
The institutional void. This keeps on happening. We make noise about it. A couple higher ups acknowledge it if we’re lucky.

Nothing changes.

It doesn’t feel like the system is broken. It feels like the system doesn’t care, doesn’t exist to care.

I sometimes wonder if Simon being on the board of the NHS has a lot to do with this. But at the same time I’m not exactly convinced it would be any much better if he weren’t.

There’s really a stubborn prejudice.

It makes me worried about “raising awareness” about ME in my country. Is this what happens when you raise awareness? More awareness = more medical prejudice?

Rather the mystery illness framing than the “ME -> Addict / Scrounger” thing.
 
I honestly think it’s prejudice.

There will be staff involved who are prejudiced and either don't think ME is real, or don’t care. They have a “difficult” patient so goodwill erodes and suspicion increases. Staff who weren’t particularly prejudiced start to agree that something isn’t right with this patient.

We all know that anyone with decent medical experience of ME and a decent level of severe ME knowledge would look at this patient and say “yup, this is exactly what I’d expect to see, absolutely nothing about this seems fake/attention-seeking/munchausens/depression/just likes being a pest, that’s Severe ME doing it’s usual thing”.
 
Both the ME association and the 25% group have Dr Speight as an advisor, with extensive experience in managing very severe cases. [A named patient's] own Dr is Dr Weir, so ditto. Action for ME has Dr Strain, who wrote the mysterious “for our eyes only” severe m.e care guide.

I don’t think the Problem is a lack of available guidance or experience, but scepticism of the hospital medical staff, in a context of a very severe illness that has for decades been misframed & trivialised; NHS rigidity - refusal to be guided by private/ retired drs who do have experience and charity failure to campaign for any severe ME NHS medical expertise to be built up or research on more severe expressions of this illness.

I don’t understand the purpose of [named patient's] medical admission this time but it looks like the severe experience in the hospital hasn’t improved, whilst the DHSC/NHS after 3 years of talks, continue to debate behind the scenes on whether they need to bother & its “cost-effective” to do anything.
 
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Final in a series of posts moved from a thread about a specific patient

Cinders66 said:
Both the ME association and the 25% group have Dr Speight as an advisor, with extensive experience in managing very severe cases. Savannah's own Dr is Dr Weir, so ditto. Action for ME has Dr Strain, who wrote the mysterious “for our eyes only” severe m.e care guide.

I don’t think the Problem is a lack of available guidance or experience, but scepticism of the hospital medical staff, in a context of a very severe illness that has for decades been misframed & trivialised; NHS rigidity - refusal to be guided by private/ retired drs who do have experience and charity failure to campaign for any severe ME NHS medical expertise to be built up or research on more severe expressions of this illness.

I don’t understand the purpose of Savannah’s medical admission this time but it looks like the severe experience in the hospital hasn’t improved, whilst the DHSC/NHS after 3 years of talks, continue to debate behind the scenes on whether they need to bother & its “cost-effective” to do anything.
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But this is exactly what I mean.
There’s nobody working at the hospital who is an ME expert or practitioner, there’s no “leader” on the ground saying “of course she needs a blackout screen, why would you think we should consider removing it?” You have non-NHS trust experts writing to the hospital, why would the consultant or Drs she’s under listen to them? As far as theyre concerned she doesn’t have ME, they don’t know her and we do, and we think she’s a malingerer. Even if she does have ME it’s better for her to start getting used to things like light and coming off all these drugs so she can get ready to go home because that’s what we do with everyone else.
 
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