Severe difficulties with eating in ME/CFS

[Jonathan Edwards]

I don't think we should have to say the problem is essentially a psychosis, to make an argument for the care of people with eating difficulties in ME/CFS better.

I am not suggesting we call it a psychosis. The eating disorders due to hypothalamic tumour damage are not psychoses. They are all eating disorders in that it is impossible to eat effectively unaided. And I think the working hypothesis has to be that in ME it is driven by a brain problem.

 

[Hoopoe]

In my view it still needs to be clarified what is actually happening in these cases. Is it weakness of the muscles involved in swallowing, does the exertion of eating trigger PEM, is it feeling sick when food is in the stomach?

Best to describe the problem as what it is.

 

[Jonathan Edwards]

I'm sure sometimes ME/CFS patients and their families can be very difficult, and bogus theories contribute to that. The ideas without evidence that are out there worry me too. But, I'm not sure that thinking an inability to eat is physical problem when there is severe abdominal pain or difficulty swallowing or constipation is terribly bogus. I think there are questions there that deserve research before conclusions are drawn.

It is all physical problems. That is the position of the 'biomedical approach'. Everything works through physical mechanisms whether or not there are mental correlates. The distinction is unhelpful. The BPS people believe that mental and physical causes interact, which means they think they are of different nature. This is something that medicine should have abandoned. Even Descartes did not intend it to be thought of like that.

We need to get people out of thinking in terms of this BPS dichotomy.

And if the brain is affecting the gut via the vagus this is entirely physical.

We patients probably use these theories of to resist psychologization and because we hope that they might help. Not because we want to resist an uncomfortable truth (like the psychologizers like to believe) but to resist an a harmful untruth being imposed by an authority figure.

I would not lay an ounce of blame on patients here. What concerns me is that two groups of health professionals are confusing patients by giving them different stories. The stories from Dr Speight and Dr Weir are problematic in that they endorse the BPS dichotomy. The stories from he other side are worse in that they assume that psychotherapy will deal with a problem that can only be dealt with by feeding through an effective route.

 

[Jonathan Edwards]

If that would be the case, why not label it dysautonomia or something along those lines? Or do you not accept the concept "dysautonomia" either?

I have no idea what dysautonomia means and previous discussions here indicate that there are several conflicting views. Dysautonomia is another of those buzzwords used by physicians who want to sound clever to patients but do not themselves really understand.

Moreover, whatever is understood by dysautonomia, the brain telling the gut to reject food via the vagus would not be that. The autonomic system would be doing its job effectively.

 

[Hutan]

I am. suggesting that this was probably mediated by the hypothalamus through vagal input and output - so it can come under eating disorder.

It would be good to hear why you favour this theory. Do you want a thread started to discuss it?

 

[Jonathan Edwards]

I think we should probably avoid using the term eating disorder in ME/CFS because it is so tied in the minds of all varieties of clinicians with it being a psychological disorder, in other words a disorder of thoughts that includes faulty thinking.

I disagree, Trish, purely on the grounds that somehow we have to get health care professionals to come to a consensus understanding of the reality of what is going on and what is needed. That may involve giving some ground.

It reminds me of the discussions we had long ago about what would happen if we scrapped GET and CBT - would the entire ME service disappear and everyone be worse off. It is all about finding a way of taking about this that is consistent with not just continuing but improving the service. And for this eating issue it is absolutely vital that we get it right.

It looks to me as if the gastroenterologists have decided that people with ME have eating problems driven by their brains and I think they are probably right. Where they are wrong is in thinking that a psychologist might have a clue what to do about it. I think all this needs to be laid out in the open.

 

[MSEsperanza]

Only able to skim the discussion very superficially so apologies if not relevant but thought maybe it could be helpful to continue the discussion on hypothesis on causes on an existing thread?

https://www.s4me.info/threads/is-me-a-metabolic-problem-or-a-signalling-problem.10981/

 

[Jonathan Edwards]

It would be good to hear why you favour this theory. Do you want a thread started to discuss it?

It doesn't need a thread. The vagus provides the neural control for the gut - input and output. The hypothalamus controls nausea. Unless the gut is actually blocked by a stricture, which has never been reported as far as I know, this is about all there is.

 

[Hutan]

I am not suggesting we call it a psychosis. The eating disorders due to hypothalamic tumour damage are not psychoses. They are all eating disorders in that it is impossible to eat effectively unaided. And I think the working hypothesis has to be that in ME it is driven by a brain problem.

Psychosis is when people lose some contact with reality. This might involve seeing or hearing things that other people cannot see or hear (hallucinations) and believing things that are not actually true (delusions).

Believing that you can't or shouldn't eat, when there is no functional problem seems to fit the definition of a psychosis. It is a loaded word, so yes, probably best avoided, but I did find the medication-induced psychosis a helpful analogy.

The stories from Dr Speight and Dr Weir are problematic in that they endorse the BPS dichotomy.

I've probably missed this, but what are Drs Speight and Weir saying?

 

[Trish]

It looks to me as if the gastroenterologists have decided that people with ME have eating problems driven by their brains and I think they are probably right. Where they are wrong is in thinking that a psychologist might have a clue what to do about it. I think all this needs to be laid out in the open.

The vagus provides the neural control for the gut - input and output. The hypothalamus controls nausea. Unless the gut is actually blocked by a stricture, which has never been reported as far as I know, this is about all there is.

Do gastroenterologists always refer for psychiatric assessment and/or treatment when people have eating disorders, regardless of cause?

Or do they put their patients with eating disorders into two baskets - the psych ones and the physical ones?

And if so, do they refer the psych ones to psychs and refuse to do any pragmatic feeding methods with them, and treat the ones with known neurological or gastro damage/disease pragmatically from the start?

What we clearly need is a way to convey to gastroenterologists and dieticians and psychs that pwME should be in the category that gets pragmatic feeding assistance from the start, and not be assumed to be psych cases.

 

[Hutan]

In my view it still needs to be clarified what is actually happening in these cases. Is it weakness of the muscles involved in swallowing, does the exertion of eating trigger PEM, is it feeling sick when food is in the stomach?

Best to describe the problem as what it is.

I agree. I'm not sure that there is necessarily a change in appetite. When I got post-prandial pain, it had no effect on my appetite. I remember reading posts from people with ME/CFS who wanted to eat, but reported suffering very badly when they did.

It doesn't need a thread. The vagus provides the neural control for the gut - input and output. The hypothalamus controls nausea. Unless the gut is actually blocked by a stricture, which has never been reported as far as I know, this is about all there is.

But, presumably things can affect muscles, making the transit of food through the intestines very slow, or producing a sensation of throat tightening? Things can affect water extraction in the gut, resulting in constipation or diarrhoea. Nausea can be caused by irritation of the nerves in the stomach or gut, that actually tells the brain there is a problem.

Do you believe that ME/CFS in general is caused by problems with the hypothalamus and vagus nerve?

 

[Jonathan Edwards]

Believing that you can't or shouldn't eat, when there is no functional problem seems to fit the definition of a psychosis. It is a loaded word, so yes, probably best avoided, but I did find the medication-induced psychosis a helpful analogy.

Psychosis implies a belief that is outside what can reasonably be considered an imbalanced version of normal beliefs and reasons. So believing that you can't eat or shouldn't eat based on some misunderstanding of what is going on is not psychosis. In my wife's case her beliefs had bizarre contradictions and were expressed in ways that made it clear that her brain was malfunctioning - a bit like in a nightmare.

And I'm not suggesting that there is no functional or physical problem in ME. I am quite sure that people with ME who cannot eat cannot eat. They vomit and feel terrible or simply cannot swallow the food. I am familiar with those problems myself when I have been ill. It is a bit like insomnia - you cannot go to sleep.

 

[Jonathan Edwards]

I've probably missed this, but what are Drs Speight and Weir saying?

They emphasise that the cause of inability to eat is physical, contrasting it with psychological.

 

[Trish]

The vagus provides the neural control for the gut - input and output. The hypothalamus controls nausea. Unless the gut is actually blocked by a stricture, which has never been reported as far as I know, this is about all there is.

I'm a bit puzzled that you are saying we should avoid trying to give explanations of why pwME have eating and nutrition problems, and instead keep the focus on ensuring a pragmatic approach. Yet you put forward your theories about what is happening. Is that any different from attributing the probems to other favoured theories such as dysautonomia or gastroparesis or muscle weakness?

There needs to be investigation of what is causing the problem in each case as it will surely affect which treatment approach is tried first. So someone with inability to swallow is likely to need a different approach than someone who reacts badly to specific foods, or has severe nausea or stomach pain. Though I am talking about symptoms here, rather than the cause of those symptoms, so I guess that's still the pragmatic approach.

 

[Jonathan Edwards]

And if so, do they refer the psych ones to psychs and refuse to do any pragmatic feeding methods with them, and treat the ones with known neurological or gastro damage/disease pragmatically from the start?

It is worth reading the stuff cited above in the thread

"One author of the BSG’s guideline on functional dyspepsia, Dr Peter Paine (from the Salford Royal NHS Foundation Trust), wrote about ME/CFS as a central sensitization disorder that should require removal of tube feeding and rehab, in a BMJ Frontline Gastroenterology article entitled “Jejunal feeding: when is it the right thing to do?” (2019):"

It is clear that they hive off cases for psychological intervention despite low quality or very low quality evidence.

What I think is important in amongst these documents is the way these patients are grouped under cases that have multiple stories like EDS, mast cell activation, POTS etc. I am pretty sure that the gastroenterologists are specifically antagonised by these lists of diagnoses, and not without reason since they are often unfounded.

 

[Andy]

In normal people the small bowel is always active and this would be additional energy demand. Presumably this background activity is good for bowel health and function, regardless of whether there's food currently passing through (you can see it on ultrasound even when people are starved for the procedure and hear it with a stethoscope).

Could explain why I experience bowel movements slowing or stopping outright while in PEM.

 

[Trish]

It is worth reading the stuff cited above in the thread

Thanks for the reminder. I did glance at them, but couldn't face more. I'm lying here in bed with stomach pain after eating a small breakfast, and also have an ongoing worry that I'm not able to ensure my sick daughter eats a very healthy diet, so it's all getting a bit much. I need to step away from this thread.

 

[Jonathan Edwards]

But, presumably things can affect muscles, making the transit of food through the intestines very slow, or producing a sensation of throat tightening? Things can affect water extraction in the gut, resulting in constipation or diarrhoea. Nausea can be caused by irritation of the nerves in the stomach or gut, that actually tells the brain there is a problem.

Yes, all through the vagus nerve, which operates according the instructions of the hypothalamus. We have no evidence for anything being primarily wrong in the gut. It is hard to believe that there are enough different things primarily wrong in the gut to make eating impossible. If the problem is mediated through the vagus under the control of the hypothalamus then all sorts of different things come under the one explanation. There is almost certainly a basic mechanism for emptying the gut through all possible means via the vagus. It is what we get when we have a viral infection.

 

[Jonathan Edwards]

Do you believe that ME/CFS in general is caused by problems with the hypothalamus and vagus nerve?

I suspect they mediate much of the symptomatology but then the question is what is upsetting the hypothalamus and vagus, which may be immunological.

 

[Binkie4]

"Families fear ME patients will die in hospital care" by Kat Lay, Health Editor

In the print copy of the Times today is an article headed as above, 2 columns with small photos of the women at risk currently. There is a reference to one being in the hospital where Maeve O'Neill died. The circumstances of Sami Berry's illness are fairly fully described. It is recorded that she has EDS, epilepsy and severe ME.

William Weir is quoted " There's now a lot of scientific evidence which supports the proposition that this condition has a primary physical, pathological base."