Severe difficulties with eating in ME/CFS

I don't think anyone is saying that. But weight loss is simply down to inability to eat enough food, no reason to complicate that. The cause for that is the whole question, but being unable to eat is a problem in itself, whether the cause is known or not. It's likely that the explanation for this overlaps strongly with what PEM is and how it affects the rest of the body. At least in most cases.

I had a pretty bad episode recently and was barely able to eat 1K calories per day. And I'm not sure if my usual average is much more than maybe 1600-1800. It's not that big of a problem short-term, but unless something is done it's only a matter of a few weeks where it starts being a major issue that requires an expert.

It happened several years before when I was not underweight. Now I am significantly underweight, enough that 2-3 weeks of this would be seriously problematic without supplementation. That's probably where most of the serious complications come from, when the patient is already fragile and undernourished.

 

I may be mistaken, but one aspect of the problem we may have overlooked in this discussion is that sometimes, food itself is not the reason why some severe ME patients can’t eat. For example, when they overexert themselves doing another activity (such as cognitive activity, or maintaining personal hygiene), then they are unable to tolerate eating / feeding.

From my understanding, @Jonathan Edwards, you seem to want not to consider overexertion as a key mechanism of this intolerance to eating / feeding but it does feel like it is one.

Or perhaps what I wrote in the first paragraph is precisely the point you are trying to make (e.g. the analogy with the flu)?

 

Chronic migraines.

 

In very severe ME are we potentially looking at something more than food intolerances. It has been suggested in at least one case, even when fed through a central line so missing out the gut altogether, that there can be an adverse response to any nutrition introduced to the blood stream making any form of feeding impractical.

We know so desperately little about what can happen in very severe ME and there are disappointingly few physicians seriously addressing this. These cases are fortunately few in numbers and perhaps are best treated by a number of different specialists, however would specialist acute inpatient facilities make it more possible to develop a clinical expertise?

 

I am perhaps being over pedantic but there is also the swallowing stage, getting food/liquid from the oropharynx to the oesophagus whilst safely protecting the airway. As well as preventing malnutrition, protecting the airway is a very important issue. Although I am very out of date with any figures, aspiration pneumonia (infection resulting from food or liquid in the lungs) is a significant cause of death in the physically disabled

Ability to protect the airway also interacts with posture. My automatic sleeping position is prone and I need to avoid eating for several hours before I am likely to fall asleep otherwise once asleep I can unintentionally turn onto my stomach and then later wake with food in my airway. Rightly hospital staff can be very cautious about any risk of aspiration, which leads to potential conflict in relation to orthostatic ME issues requiring being as horizontal as possible.

Further malnutrition or dehydration can exaggerate any other existing problems with the eating/swallowing/digestion process.

[edited to clarify the final two sentences]

 

With respect, some here have a lot more vested interest --- "this may be a topic that colleagues don't really want to broach" --- OK, but please keep exploring.

 

Can't really exclude that the combination of exertion and pain/discomfort from the experience, even simply having someone in the room, is the main factor.

In severe cases, simply turning in bed can cause PEM. The tolerance is that small. The process of feeding someone this way is definitely in the range to cause PEM.

And that's not to speak of the experience in a hospital when that's the case. Definitely not a good place for quiet rest.

 

FWIW this seems an entirely reasonable description to me.

yes i'm keen to seethat too. But if so i think efforts must be taken to try to monitor it during PEM. Because in my experience (as with that of others on this thread) is vastly different.

My motility seems pretty average, until i go into PEM - when whatever i have eaten simply sits in my stomach, nothing happens at all for many hours and at some point often 12-18hrs after eating, i just become so nauseated that all i have to do is lean over & i vomit - food which i ate many hrs ago as if i had only just eaten it. Its odd. After i throw up the nausea disappears. I dont think it can be a sympathetic nervous system response because in PEM my HR is generally normal/low, & my BP (the only time it was ever measured during PEM) was low end of normal, so dont think it can be 'fight/flight' stopping digestion/emptying, but something else.

I never bothered reporting it to a Dr because it seemed pointless tbh, what can they do.

Bizarrely, there are also occasional cases of PEM/symptom exacerbation, where i feel continuously ravenous for food, despite feeling utterly dire, and even sometimes feeling simultaneously hungry and nauseated, which is very strange. After the most recent covid vaccine i couldnt stop eating for 4 days, gave myself terrible belly ache lol, but the urge to eat it was irresistible!

 

coincidentally


(Google says the origin of the image is
Joined Up Care Derbyshire Integrated Care System

joinedupcarederbyshire.co.uk although I couldn't find it there).

 

My thinking would be to keep the focus on those cases where nutrition becomes a severe enough problem to be life-threatening or at least leading to significant malnutrition. Otherwise the special problem of severe ME gets muddled up with 101 reasons for feeding problems that may or may not be special to ME. I suspect the surveys will yield a bewildering mass of unreliable data.

This is one of the reasons why we need large scale ME clinics with regular clienteles and long-serving physicians to provide unbiased cohorts for whom objective data like weight can be read off the clinic records.

So I think hearing from doctors treating people who need assistance is the key. So far I have not had responses. But I think it quite likely that even sympathetic physicians will search for SIBO or motility problems and if not finding them will just settle for 'functional'.

I would like to see data on systematic investigation of cases presenting for management of weight loss, which I think probably exists in clinic records, primarily to confirm that structural gut problems are not actually important. The point being to show that intolerance of food intake occurs in ME without needing these as explanations and needs to be recognised as likely the critical problem in most cases.

 

Apologies if Professor Aziz has been mentioned already.

He is "Professor of Neurogastroenterology and Director of The Wingate Institute of Neurogastroenterology at Barts"

https://www.qmul.ac.uk/blizard/all-staff/profiles/qasim-aziz.html

 

From memory puringenic ATP signalling activates AMPK which feeds into lots of systems, but Chris Armstrong has looked at effects of AMPK in gut and knock on dysbiosis.

 

Is he someone who might be interested in listening to ME interests?

 

One of the authors of this that I linked to above: Gastrointestinal disorders in joint hypermobility syndrome/Ehlers-Danlos syndrome hypermobility type: A review for the gastroenterologist Google Scholar gives a number of other papers on ED by Aziz, also on IBS - nothing on ME/CFS.

 

He works closely with PoTS, EDS and MCAS doctors and I got the impression from him (& the PoTS doc etc) that they don’t really get involved in ME specifically & would rather focus on their other conditions. When I knew him he didn’t discuss ME. He is not hostile towards it but I don’t think he has any interest in it. As far as I’m aware he also retired from the NHS and is private only now. The other gastro docs I know of / heard of who might not be hostile to those with ME, are again those with an interest in dysmotility, PoTS and gastroparesis but again they focus on those conditions rather than take an interest in ME specifically (and some of them won’t even actively write ME in notes and will write “chronic fatigue” or “fatigue” instead). I think they feel ME is too controversial / difficult and doesn’t lead to treatment.

If you want to contact a physician who is interested in ME, why not just contact Dr Weir and Dr Speight? They’ve been helping PwME in hospitals who’ve been tube-fed for a long time now.