Severe difficulties with eating in ME/CFS

“Exeter hospital is refusing to adapt their NG tube feeding policy for Alice's [unique] requirements. They have said she must be inclined at 30 degrees to provide nutrition for her.

Alice cannot tolerate being at this angle due to her POTs and her ME, it is having a detrimental impact. An ME specialist has informed us that it is safe to feed as low as 5 degrees if the person is lying on their right side and doesn't move.”
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This feels surreal to read to me as I found myself in the exact same situation just over a month ago. The hospital staff eventually let me try tube feeding at an angle of 15 degrees (though I lowered it to 10 when they were away), but I couldn’t continue as I didn’t tolerate nasogastric feeding due to gastroparesis.

When I looked at the evidence for the angle of 30 degrees, I found that it comes from studies on critically ill patients (mostly mechanically ventilated) who cannot protect their airways, so they are at risk of aspirating the feed into their lungs. There is, in fact, no evidence that it applies to patients who are not in the ICU, as per §6.3 to §6.6 of this 2017 review from the American Society for Parenteral and Enteral Nutrition on safe practices for enteral feeding (pp. 48-50, bolding mine):

Question 6.4. Can [enteral nutrition] be administered safely in patients who require prone positioning?

Practice Recommendations

1. Assist the patient in clearing secretions as indicated and promote good oral hygiene.

2. Assess abdominal status every 4 hours and as indicated and monitor bowel status as a guide for GI motility status.

3. Consider short-term use of prokinetic agents if indicated clinically.

4. Consider transpyloric tube placement for patients who are at increased risk for aspiration or have persistently elevated [gastric residual volume]s.

Rationale

Evidence is limited, demonstrating the safety and tolerability of EN in the prone position, although the minimal available evidence does not suggest a substantial increase in complications compared to EN administered in a supine position. Strategies to increase enteral feeding tolerance in the supine position such as [head of bed] elevation, small bowel feeding, and use of prokinetic agents may increase EN tolerance for patients in the prone position. (…)
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Plus ça change…
 
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This is a cine-MRI of what normal small bowel motility looks like, stepping from back to front through the abdomen. Judging from the aortic pulsation this is probably sped up x4, so go to the cogwheel settings button and reduce it to 0.25x to get more normal timing. You can see the small bowel has nice thin walls and is very dynamic, although apart from the odd gurgle we're not generally aware of this in daily life.



It is very striking when doing eg a real-time fluoroscopic study and you instead seeing the bowel static, with very slow progression to colon (hours and days, vs 20 minutes). I know gastroparesis (delayed stomach emptying) is generally discussed but I would have assumed that the problem in ME is more widespread through the gut and similar to some of these small bowel dysmotility conditions.

When I first got sick I couldn't tolerate normal meal sizes and had to try with small amounts more frequently (also no carbs) and protein supplements. The problem symptoms were principally horrible abdominal pain and nausea. I assumed this was dysmotility and thought it was most likely due to dysautonomia (eg reduced vagal inputs or increased inhibitory splanchnic sympathetic inputs) +/- smooth muscle impairment.
 
belbyr said:
We found that my UES is dysfunctional and I have been diagnosed with RCPD, or in other words... I literally can't belch any air. It lead the specialists to finding an overly tight UES on manometry. Then, the lower esophagus was found distended on barium imaging due to air buildup, along with the rest of the GI tract.

All other testing has come back normal from smart pill, imaging, endoflip, scopes, camera pill, breath testing for intolerances/SIBO, E.G.G, and 48hr reflux monitoring. My hope is the botox injection into the UES will help and it might possibly fix all of the GI symptoms. I can't get it done until April 12, fingers crossed.
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I didn't know what UES stood for so looked it up:

Upper esophageal sphincter, the superior portion of the esophagus (presumably)
 
Jonathan Edwards said:
The puzzle is that nowhere is there a policy that people should be denied nutritional support because of a lack of belief in a physical inability to eat. People with anorexia nervosa get nutritional support by whatever means needed, as I understand it
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Midnattsol said:
I'm not familiar with the UK system, but "psychosomatic/physical" attribution definitely plays into it if a patient get nutrition support with the reasoning that one does not want to "reward" the mistaken belief the patient can't eat.
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These are interesting points. Is the point of difference, the patient won't eat (assumed to be because of body dysmorphism) vs thinks they can't eat (abnormal illness beliefs)? Perhaps it's been long recognised that those with aneroxia have a high mortality, but it's assumed that ME/CFS don't, because of smaller numbers. If you were framing ME/CFS as psychological (just a different style), there should be no difference in the management approaches.
 
It is possible to identify with X-ray videofluroscopy how well protected the airway is during swallowing, so I wonder if it is possible use it to identify if there is any pharyngeal regurgitation and if so how well individuals are able to protect their airway during enteral feeding when recumbent?

[added - this would probably have been impractical on the basis of the videofluroscopy I have witnessed, but this was getting on for thirty years ago and I am hoping it would be more flexible now.]
 
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SNT Gatchaman said:
These are interesting points. Is the point of difference, the patient won't eat (assumed to be because of body dysmorphism) vs thinks they can't eat (abnormal illness beliefs)? Perhaps it's been long recognised that those with aneroxia have a high mortality, but it's assumed that ME/CFS don't, because of smaller numbers. If you were framing ME/CFS as psychological (just a different style), there should be no difference in the management approaches.
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I don't think this is an ME specific issue. Undernutrition is underecognized and often not screened for, and your general healthcare worker is not able to recognize it (yes, even people that don't look like skin and bones can suffer from undernutrition). It is seen in many patient groups, not only pwME. I also wouldn't say anorexia patients are necessarily given good nutrition support, as it can be seen as "giving in" to the illness and a further step towards stopping eating altogether.
 
From https://www.stuff.co.nz/national/he...n-darkness-with-chronic-fatigue-after-covid19

The family of nurses has been praised by a dietician, and other medical professionals, for how well they have cared for Rebecca's needs.

They have researched how to meet her nutritional needs with being able to only drink liquid foods through a straw. She is fed small and often eight to nine times a day. But despite their best efforts, she continues to lose weight, and is still not getting enough nutrition, Wayne said.

“She’s got to such a low point, she can’t really go much lower,” he said.

The family have been told to prepare for Rebecca needing hospital admission for a feeding tube.
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Midnattsol said:
I also wouldn't say anorexia patients are necessarily given good nutrition support, as it can be seen as "giving in" to the illness and a further step towards stopping eating altogether.
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(my bolding of the quote)

The experience I had in hospital, (after I had come out of ICU & my initial NG tube had already been taken out, but then I had a setback and was vomiting continuously), is that doctors didn’t want me to have a tube again, not even an NJ tube which the dietician had recommended, because according to them, I would become “dependent” on it and my stomach would “get used to it” and “stop working”. This was despite the fact I was very unwell at the time and was losing weight, was vomiting up water too and wasn’t being given IVs either and had become very weak. The dietician was pushing for me to get extra support & was saying if the vomiting & severe nausea didn’t stop, then I needed more help and an NJ tube. Luckily, after 3 weeks the vomiting did suddenly stop & I didn’t need the feeding tube anymore. But it was a horrendous time because I was suffering a lot and not getting any help and yet the doctors kept saying that I should be discharged as vomiting wasn’t something that I needed to stay in hospital for.

But it made me realise what the attitudes were towards tube feeding, by doctors generally. All the doctors in the team were really unhelpful/unpleasant about this subject, and actually strongly were against tube feeding even when the dietician recommended it (I read it in her notes later). I don’t know why this was, except they seem to have this view that it makes people “reliant” on tube feeding and that we should work harder on eating by ourselves.
I think this isn’t only an ME thing, but the fact ME is thought to be psychological & so people can just “work harder” at trying to eat, will definitely be adding to doctors’ attitudes. I just remember thinking, what if I really had needed help in the long term, it would have been so horrendous to navigate it.
 
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MeSci said:
I didn't know what UES stood for so looked it up:

Upper esophageal sphincter, the superior portion of the esophagus (presumably)
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Yes, it’s something that I have told doctors for years that since I was a child I could never belch even if a gun was held to my head.

It wasn’t until around 2018ish that certain specialists started to actually treat it. It can definitely cause serious stomach pain, nausea, mouth watering, and people like myself can look 3-6 months pregnant most times.

I’ve been chasing up the tree of autoimmunity and POTS the last few years, but trying all of the medications and therapies for it have lead me no where with no improvement.
 
SNT Gatchaman said:
When I first got sick I couldn't tolerate normal meal sizes and had to try with small amounts more frequently (also no carbs) and protein supplements. The problem symptoms were principally horrible abdominal pain and nausea. I assumed this was dysmotility and thought it was most likely due to dysautonomia (eg reduced vagal inputs or increased inhibitory splanchnic sympathetic inputs) +/- smooth muscle impairment.
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This is very similar to my experience with the illness too.
 
I have read the Baxter, Speight, Weir paper and watched Helen Baxter's video on Youtube.

I conceptualise it as partly autonomic nervous system dysfunction and factors relating to the individual.

I do wonder about the integration with central (brain) and neurological and hormonal feedback systems giving rise to gastroparesis. (but also constipation which is more commonly found in ME and seems to be also attributed to the ANS).

I don't think it has anything to do with "Irritable Bowel Syndrome" but have had concerns about restrictive diets people go on and how that may be affecting them with respect to unintentional significant weight loss, vitamin depletion eg, Vitamin B12, cofactors etc, but also the interactions of prescribed medication with often undeclared OTC, supplement use etc (I have seen that in other areas of medicine in people with chronic illness).

There is also the question of what may be going on in the vasculature (localised blood supply to the gut and large organs), the influence of Orthostatic intolerance and lowered cardiac output and the perfusion of the gastrointestinal tract.

There is the role of worsening PEM and increasing dehydration as the pwME struggles to feed themselves and worsens their orthostatic intolerance etc. Moving into a hospitalised setting seems to make it worse so early intervention and recognition should be a high priority.

There has been a suggestion that mast cell activation may also play a role in gastroparesis.

I wouldn't know if we had a dietician with a special interest in ME in my country. It does appear to be over-represented in children and young people but have no figures, just the few cases publicised here.
 
lunarainbows said:
(my bolding of the quote)

The experience I had in hospital, (after I had come out of ICU & my initial NG tube had already been taken out, but then I had a setback and was vomiting continuously), is that doctors didn’t want me to have a tube again, not even an NJ tube which the dietician had recommended, because according to them, I would become “dependent” on it and my stomach would “get used to it” and “stop working”. This was despite the fact I was very unwell at the time and was losing weight, was vomiting up water too and wasn’t being given IVs either and had become very weak. The dietician was pushing for me to get extra support & was saying if the vomiting & severe nausea didn’t stop, then I needed more help and an NJ tube. Luckily, after 3 weeks the vomiting did suddenly stop & I didn’t need the feeding tube anymore. But it was a horrendous time because I was suffering a lot and not getting any help and yet the doctors kept saying that I should be discharged as vomiting wasn’t something that I needed to stay in hospital for.

But it made me realise what the attitudes were towards tube feeding, by doctors generally. All the doctors in the team were really unhelpful/unpleasant about this subject, and actually strongly were against tube feeding even when the dietician recommended it (I read it in her notes later). I don’t know why this was, except they seem to have this view that it makes people “reliant” on tube feeding and that we should work harder on eating by ourselves.
I think this isn’t only an ME thing, but the fact ME is thought to be psychological & so people can just “work harder” at trying to eat, will definitely be adding to doctors’ attitudes. I just remember thinking, what if I really had needed help in the long term, it would have been so horrendous to navigate it.
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Yes, this is the attitude from doctors (and also nurses and others) I was thinking of.

Pre-ME diagnosis (ie. mid-to-late teens and had started to have ME symptoms) I struggled with nausea and low appetite and had a low enough energy intake to lose my period, by BMI measurements I would be classified as underweight. Not once was I asked about what I ate, instead I was told I was "probably just a bit anorexic and too active for my level of food intake". I had to bring my mother with me to the GP with food diaries to make them listen to the fact that I was not intentionally starving myself (or working out excessively, I was experiencing PEM an struggling with not being able to do what I used to).
 
Peter Trewhitt said:
It is possible to identify with X-ray videofluroscopy how well protected the airway is during swallowing, so I wonder if it is possible use it to identify if there is any pharyngeal regurgitation and if so how well individuals are able to protect their airway during enteral feeding when recumbent?
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Video-fluoroscopy has fallen out of failure because of radiation dosage. I don't think any test can guarantee that there isn't a risk. With a health service staffed with care assistants with no real training one has to assume that someone will do something very stupid at any time. There has to be a wide margin of safety.
 
Amw66 said:
It may be localised too
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That may well be the case.

The question is how to provide care guidelines that prevent mismanagement locally.
This is where I see the NICE guideline as beating about the bush. Maybe there should be a national advisory service specifically for weight loss in the context of ME and the guidelines could then include clear instructions to make use of it.

I am wondering if a working party could be set up following the government research assessment group currently sitting.
 
The Malnutrition Universal Screening Tool (MUST) would be helpful for flagging those most at risk:
https://www.bfwh.nhs.uk/our-services/community-nutrition-and-dietetics/nutritional-support/

I used the calculator myself, and my MUST score was 4, meaning that I was at high risk of malnutrition.

When I was in hospital, my weight loss was noted, but once the tests were normal, no action was taken. I had asked to be seen by dietitian and the team agreed, but I was never seen, so I got a dietitian myself after I got home.

I think this is a great idea:

Jonathan Edwards said:
Maybe there should be a national advisory service specifically for weight loss in the context of ME and the guidelines could then include clear instructions to make use of it.
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I would suggest widening it to eating problems more generally so that people are captured and appropriate advice given before things get really bad. I think if it's specifically called "Weight loss in ME" then there's a risk of only underweight people being identified, or waiting for the weight loss to happen before seeking help. Whereas the problems start further back, and malnutrition can happen at any weight, including obese (a point I think @Midnattsol made above).

Once the weight loss happens, it is very very difficult to put it back on. I am now able to eat huge amounts of food, and highly nutritious, calorific food (as guided by the dietitian), and it is an uphill struggle. I actually lost more weight after I started eating normally. And I have severe ME, not very severe ME, and two family carers who can make me food. My guess is that most with very severe ME would not be able to do what I am doing now which is allowing my weight to creep back up (although still severely underweight). My plan is to try to put on as much as I can so that I have a bit of a buffer.

I think intervention when I started having trouble 3 years ago would have been ideal. I had to go on a low-FODMAP diet suddenly and urgently in order to be able to eat anything at all, and although this was done carefully, and I did not lose weight on it (apart from very temporarily at the beginning when I wasn't getting enough food), it is inevitably restrictive, and may well have contributed to some of the problems @hibiscuswahine warns about:

hibiscuswahine said:
have had concerns about restrictive diets people go on and how that may be affecting them with respect to unintentional significant weight loss, vitamin depletion eg, Vitamin B12, cofactors etc, but also the interactions of prescribed medication with often undeclared OTC, supplement use etc (I have seen that in other areas of medicine in people with chronic illness).
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I had to say no to a medication with a known common side effect of weight loss while in hospital.

I think the most important part of @Jonathan Edwards ' idea is that it would raise awareness that eating problems are a thing in ME, that they can lead to dangerous weight loss, and that you should do something about it.

Having guidance documents that patients can consult themselves and give to GPs/other health professionals would also be extremely valuable.
 
Jonathan Edwards said:
I strongly suspect that those two papers are not actually studying people with EDS but the ill-defined group of people who get labelled as hypermobility syndrome/'EDS-HT' collected by clinics with very biased referral inputs.
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But isn't labelling one of the problems ? While 'we' may be clear about the spectrum of illness that we understand is included in ME/CFS, across the whole of medical academia there is a vast array of labelling preferences for alternate and comorbid diagnoses dependent on individual patient presentations. Guidelines that are specific to weight loss in ME/CFS might fail in the most serious cases because the GE units that have control of delivery are able to reference alternate and/or comorbid diagnoses.

Perhaps there are two 'guidelines' needed - a general guidance on nutrition in ME/CFS concerned with obtaining the best outcomes in a challenging illness, and a supported nutrition guideline for GE units which covers severe ME/CFS and associated/comorbid conditions.
 
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