Severe difficulties with eating in ME/CFS

Jonathan Edwards said:
There are no structural changes that would explain weight loss known to be part of ME.
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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.
 
Jonathan Edwards said:
Partly to include fluids and electrolytes.
Also food and dietary intolerances tend to mean specific allergies or coeliac etc. which I don't think are the central issue. My understanding is that the people who at real risk cannot manage anything.
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If I write up a feeding plan, liquids are in it, and if necessary I would be calculating electrolytes (heck, even physical activity is part of "dietary guidelines" in many countries).

To me food/dietary intolerance would not necessarily mean anything specific. In Norway we have "skånekost/easy to digest diet" for so-called "unspecific digestive issues" that is used if a patient is struggling with their nutrient intake. Could be cancer, being elderly and frail, gastroparesis, gut infection or whatever.
While I can't remember seing a name for it in English, I have seen it explained with the typical advise of smaller more frequent meals, reduce "fatty/spicy foods", eat boiled instead of fried foods, fish/chicken over red meat, overboil veggies etc.

I very much place my digestive issues in this "unspecific digestive issue" category, and for me eating easier to digest foods make me able to meet my nutrient requirements when in PEM.
 
Potential issues in ME/CFS that may cause weight loss (have I missed any?)

Difficulties procuring food and preparing (appetising) meals
Anorexia - lack of appetite
Food intolerances or perception of food intolerances
Difficulties in eating/chewing (perhaps due to a general lack of energy)
Gut motility problems (perhaps due to a general lack of energy)
Gut absorption problems
Inability to utilise absorbed nutrients

Do we know what the main causes of weight loss are?

If not, it seems to me that one good place to start would be to survey people with moderate to very severe ME/CFS, asking them about their weight/BMI and weight/BMI change over the last year. If they have lost weight, ask questions about why they think they have lost weight, and about their average daily intake of food. Ask about appetite. Ask about food intolerances and if people are avoiding food groups. Ask about post-eating pain. If we had a survey, we could promote it via charities to get a good sized sample. At the moment, I don't feel as though we have enough good information to start naming anything.

I'd like to hear from the doctors treating people who need assisted feeding - what do they think is going on?

I'd also really like to see research on gut motility - surely that is something quite easily done, and with a fairly yes/no sort of result?
 
Hutan said:
If not, it seems to me that one good place to start would be to survey people with moderate to very severe ME/CFS, asking them about their weight/BMI and weight/BMI change over the last year. If they have lost weight, ask questions about why they think they have lost weight, and about their average daily intake of food. Ask about appetite. Ask about food intolerances and if people are avoiding food groups. Ask about post-eating pain. If we had a survey, we could promote it via charities to get a good sized sample. At the moment, I don't feel as though we have enough good information to start naming anything.
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There are a number of standardised measurements of risk of undernutrition, MUST has already been mentioned in the thread. Others are NRS2002 and MST. There are also general guidelines on BMI and rate of weight loss for when someone is undernourished or not (f.ex. "BMI <18.5 or lost 5% of weight the last month").

Though difficult if someone has been ill for a while. I lost weight in a crash I had a few years ago, since then my weight has been more or less stable (I am fortifying my food with energy and eating easy digestible foods when necessary which likely plays into this, and I am lucky enough to have someone who can shop and cook for me when I am not able). My point is that weight loss may have occured and there may be problems with food intake that puts patients at risk of undernutrition, but presently weight is stable so this risk will not be picked up on unless BMI has become <18.5.

A survey of this kind is something it would be possible to apply for funding from say Dam Foundation in Norway if the Norwegian ME association is on board :)
 
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)?
 
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cassava7 said:
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 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.
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Definitely. My digestion is usually fine if not in PEM (some foods I don't eat anyway, but I don't have to plan as much as when in PEM and no need for fortification).

There are also changes in athletes digestion after heavy exertion.
 
Hutan said:
Food intolerances or perception of food intolerances
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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?
 
Hutan said:
Difficulties in eating/chewing (perhaps due to a general lack of energy)
Gut motility problems (perhaps due to a general lack of energy)
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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]
 
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Peter Trewhitt said:
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.
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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.
 
Jonathan Edwards said:
Yes, that was the reason for making it nutritional intake intolerance - emphasising that this is in the end of just getting nutrition in, not adverse symptoms for specific foods.
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FWIW this seems an entirely reasonable description to me.

Hutan said:
I'd also really like to see research on gut motility - surely that is something quite easily done, and with a fairly yes/no sort of result?
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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
upload_2023-3-1_11-59-29.jpeg

(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).
 
Hutan said:
Do we know what the main causes of weight loss are?

If not, it seems to me that one good place to start would be to survey people with moderate to very severe ME/CFS, asking them about their weight/BMI and weight/BMI change over the last year. If they have lost weight, ask questions about why they think they have lost weight, and about their average daily intake of food. Ask about appetite. Ask about food intolerances and if people are avoiding food groups. Ask about post-eating pain. If we had a survey, we could promote it via charities to get a good sized sample. At the moment, I don't feel as though we have enough good information to start naming anything.

I'd like to hear from the doctors treating people who need assisted feeding - what do they think is going on?
Click to expand...

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.
 
Midnattsol said:
Definitely. My digestion is usually fine if not in PEM (some foods I don't eat anyway, but I don't have to plan as much as when in PEM and no need for fortification).

There are also changes in athletes digestion after heavy exertion.
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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.
 
Jonathan Edwards said:
Is he someone who might be interested in listening to ME interests?
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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.
 
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