Severe difficulties with eating in ME/CFS

Jonathan Edwards

Jonathan Edwards

Senior Member (Voting Rights)
Moderation note: A series of posts have been moved from United Kingdom: Cases of people with ME/CFS with severe feeding problems, in the media.
There are more helpful discussions on that thread also relevant to this thread,
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I see a different side to the problem, keeping away from any specific case here.

We simply do not have any medical knowledge about how to manage inability to eat in ME that is any different from inability to eat without ME. Knowing about ME does not change the options. There are no special drugs or protocols with published evidence of benefit or even well described uncontrolled studies.

If management of inability to eat is below standard in an NHS hospital, which these days it may well be, it is unlikely to have anything to do with not knowing about ME. We do not even have any documented reasons for inability to eat associated with ME.

I don't actually see any point in getting an 'ME specialist' in other than to provide the sort of calming skills of someone like Nigel Speight when people are unnecessarily in conflict. 'ME specialists' are if anything likely to advise something worse than useless.
 
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Jonathan Edwards said:
I see a different side to the problem, keeping away from any specific case here.

We simply do not have any medical knowledge about how to manage inability to eat in ME that is any different from inability to eat without ME. Knowing about ME does not change the options. There are no special drugs or protocols with published evidence of benefit or even well described uncontrolled studies.

If management of inability to eat is below standard in an NHS hospital, which these days it may well be, it is unlikely to have anything to do with not knowing about ME. We do not even have any documented reasons for inability to eat associated with ME.

I don't actually see any point in getting an 'ME specialist' in other than to provide the sort of calming skills of someone like Nigel Speight when people are unnecessarily in conflict. 'ME specialists' are if anything likely to advise something worse than useless.
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That makes sense to me except for one specific factor relation to ME diagnoses. Not commenting on this specific case, which I know nothing about, I think the problem some pwME have confronted is lack of belief by clinicians in the physical inability to eat. The ME diagnosis being misinterpreted as psychosomatic.
 
RedFox said:
Why do we never hear about this happening in America?
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Maybe because the health system is less uniform, and there is more opportunity to find a doctor who may have a different view.
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Intensive and years-long efforts are often made for intestinal failure. An example would be MMIHS, which used to be considered fatal. Once enteral support, including tube feeding, surgical manoeuvres such as segmental bowel resections and stoma formations, fail then parenteral support can take over (often with overlap). This can last years, but eventually vascular access may be lost and/or the liver fails and at this point the patient may become a candidate for small bowel/multi-visceral transplant. All this is as difficult and expensive as it sounds.

Accepting we don't know details in this particular case, if ME were not being considered psychosomatic in similar cases, what would be the reason to not do interventions through to the low-middle end of that scale? I would note that pwME have the documented potential to recover function over time, even from very severe, something that is not even a possibility with MMIHS.
 
I was thinking that. We can just change doctors whenever we want. Other potential factors are:
  • ME/CFS is less discussed here than in the UK. Doctors are less familiar with it but may be starting with fewer misconceptions
  • Maybe it's happened but wasn't reported, due to the relative obscurity of ME
  • The attitude towards ME here feels more serious overall than in the UK. The CDC withdrew CBT/GET advice before NICE did and the proportion of ME research that's biomedical is much higher than in the UK
 
Trish said:
I think the problem some pwME have confronted is lack of belief by clinicians in the physical inability to eat. The ME diagnosis being misinterpreted as psychosomatic.
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I have had a thought about what S4ME might be able to do about all this, but I will post that next.

In my experience people with weight loss from inability to eat get lost in the system not because they are thought to be psychosomatic or psychiatric cases but simply because of the way medicine is less and less joined up. Each patient has become a hospital number with a clinic date or a discharge date and if that means they are left without life support the UK government could not care less.

My evidence: Forty years ago I was involved in the care of a young man who probably had ME. We could not understand why he couldn't eat. But as he got thinner we increased the enteral feeding. The problem was that nobody in the august teaching hospital involved knew who knew about parenteral feeding management (it was a long time ago when IV lines were crude). So treatment was slow because even then care could be fragmented, not because we thought the patient could eat if he wanted to.

As many know, someone close to me very nearly died of starvation as part of an obviously psychiatric illness. She did not get the care she needed initially because of fragmentation. Once she was admitted to a hospital where practical care came first she was fed intravenously just like a patient with Crohn's disease. Interestingly, though, the joining up of care may have had something to do with her being admitted officially as a surgical emergency under the care of a surgeon she had worked with twenty years before and who had been a personal friend.

I agree with the point that problems often stem from failure of health care professionals to ask themselves 'am I really treating this person the way I would treat my mother or daughter, or even just a friend'.

So this leads me to a suggestion...


In fact it needs a thread.
[This thread was subsequently created and relevant posts moved to it.]
 
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We hear of PWME who have been unable to eat and some who are no longer with us. Many members will readily recall five names, including a much loved member.

I have not searched yet but I am not aware of any formal published literature on this problem. Surely there should be. In fact it should have been given specific attention in the NICE guideline if it is a real problem. I don't know if MEA or any other charity has anything written on it. I am thinking that maybe S4ME could initiate an inquiry into what the situation really is and get a report produced that can be available for all PWME to see.

I always tend to think in UK terms initially but I see no reason why this should not be an international effort. The problem may be managed differently in different countries but if so all the more reason to compare notes.

The reason for the lack of literature may be that there is no recognition of a link between an ME/CFS diagnosis and inability to eat in mainstream medical teaching. But that would be surprising, since I know many medical colleagues who are aware of a link. My suspicion is that it is not written about because to do so would be seen to open a Pandora's box of questions the health care professionals prefer to sidestep.

Maybe I am wrong and there are guidelines.
So the first thing is to ask members if they know of formal literature on this.
If not, or even if there is some, I am inclined to suggest putting out some feelers to people like Nigel Speight who are familiar with the problem, and also to physicians dealing with ME in Europe and across the world and also physicians dealing with parenteral nutrition.
 
There are some tricky questions involved.

My guess is that maybe 20,000 people are diagnosed with ME/CFS in the UK each year. We hear of someone passing away, with inability to eat as part of the problem, maybe once every two years. A guesstimate might be that one in 10,000 PWME get to this stage. We then have the problem that the same figure may turn out to be true of people without ME.

Nevertheless, in the cases of PWME it seems obvious that the eating problem is part of a wider problem diagnosed as ME. The next difficulty is that we don't necessarily know that their problem is the same illness that the other 9,999 people have. ME symptoms may reflect a physiological pathway triggered by various routes. David Strain is very keen on that idea. Maybe inability to eat is part of a subset that often gets called 'very severe ME' that is in fact not so much a bad form of ME as a different process, at least in part.
 
This is what the NICE ME/CFS guideline says about eating difficulties:

Dietary management and strategies
1.17.10 Refer people with severe or very severe ME/CFS for a dietetic assessment by a dietitian with a special interest in ME/CFS.

1.17.11Monitor people with severe or very severe ME/CFS who are at risk of malnutrition or unintentional weight loss because of:

  • restrictive diets

  • poor appetite, for example linked with altered taste, smell and texture

  • food intolerances

  • nausea

  • difficulty swallowing and chewing.

    Follow the recommendations on screening for malnutrition and indications for nutrition support, in the NICE guideline on nutrition support for adults.
1.17.12 Give advice to support people with severe or very severe ME/CFS, which could include:

  • eating little and often

  • having nourishing drinks and snacks, including food fortification

  • finding easier ways of eating to conserve energy, such as food with softer textures

  • using modified eating aids, particularly if someone has difficulty chewing or swallowing

  • oral nutrition support and enteral feeding.
https://www.nice.org.uk/guidance/ng206/chapter/recommendations#dietary-management-and-strategies
 
Yes, I remember reading this set of case reports before, now.
It is quite helpful in some respects but it also highlights the lack of any systematic data on the problem - having to rely on five replies to a questionnaire.

The new NICE guideline does have some comments - again I now remember - but it seems very general and rather than suggesting a dietitian with a special interest in MECFS, of whom there may be few or none in most regions, it might have been better to focus on the potential need for serious nutritional support and the HENS service quoted in the case report.
 
Jonathan Edwards said:
There are some tricky questions involved.

My guess is that maybe 20,000 people are diagnosed with ME/CFS in the UK each year. We hear of someone passing away, with inability to eat as part of the problem, maybe once every two years. A guesstimate might be that one in 10,000 PWME get to this stage. We then have the problem that the same figure may turn out to be true of people without ME.

Nevertheless, in the cases of PWME it seems obvious that the eating problem is part of a wider problem diagnosed as ME. The next difficulty is that we don't necessarily know that their problem is the same illness that the other 9,999 people have. ME symptoms may reflect a physiological pathway triggered by various routes. David Strain is very keen on that idea. Maybe inability to eat is part of a subset that often gets called 'very severe ME' that is in fact not so much a bad form of ME as a different process, at least in part.
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It's somewhat invidious to have to get to grips with, but the reality of internet discussion of ME/CFS over the last 25 years has unsurprisingly been in large part emotionally driven, and an unpleasant aspect of that is that the identified deaths of people with an ME/CFS diagnosis have been within a certain level of group think, given prominence as both advocacy positions ("see it is lethal") and as scientific validation. In reality the evidence so far is that these 'starvation' related cases are extremely rare and in scientific terms we need to be extremely cautious about referencing the most difficult cases, not withstanding of course the sympathy felt towards those suffering extreme illness and their families.
 
CRG said:
In reality the evidence so far is that these 'starvation' related cases are extremely rare and in scientific terms we need to be extremely cautious about referencing the most difficult cases, not withstanding of course the sympathy felt towards those suffering extreme illness and their families.
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I think we recognise the cases are rare, but that doesn't mean that there should not be proper research and guidance on how to deal with them when they happen.
 
What bothers me most is the framing of this in terms of an antagonism. I would like to see publications that include parenteral feeding experts, gastroenterologists and nutritionists.

Although we mayn't be able to base it on figures I do not doubt that there are people with an illness that is appropriately diagnosed as severe ME/CFS who have intolerance of exertion, sensory stimuli and also, through some mechanism, food intake.

The problem comes when the inability to eat is described as caused by, or a result of 'severe ME'. We seem to have no idea what the cause is. Moreover, the five cases reported give little or no clue as to whether there is a common mechanism or many.

Thinking about this makes me note that the generalised intolerance side of ME may be something quite distinct from the problem with exertion encountered in 'post-viral fatigue' for instance. I remember being unable to tolerate physical activity after EBV for 6 months and I have had major problems with exertion for months post Covid but I have not the slightest trace of any other intolerance, like light or noise sensitivity or food problems.

I wonder whether, for instance, an analogy for inability to eat in severe ME is the disturbance of eating seen with tumours affecting the hypothalamus. The commonest one is intractable over-eating in children who have had craniopharyngioma. This is not a 'psychosomatic' problem but is driven by the brain. Autoimmune encephalitis patients may present with things a bit like this - and some have been misdiagnosed as having ME/CFS I think.

If this is a problem that means that some people with severe ME need gastrostomies, even if rarely, it should be explained. If it makes sense to have a working hypothesis that this is some form of reflex intolerance akin to a hypothalamic malfunction then that should be openly discussed and researched and guidelines should highlight it. Waffly stuff about problems swallowing or nausea or gastroperesis that probably never have a solid foundation just dilute the message.

I am just thinking aloud, but having seen what we have initially trawled up if anything makes me more convinced that this is something that needs some formal research and publication.
 
I'm not sure that I've seen a good description of what these patients are experiencing.

In some cases the feeding difficulties appeared to be due to weakness of muscles, in other cases the problem appeared to be that eating was intensely unpleasant due to symptoms it provoked once the food was in the esophagus/stomach.
 
Because of my veterinary training these severe GI cases always make me think of Grass Sickness/Equine Dysautonomia and wonder if there is any overlap in pathogenesis. I don't think the suspected causal agent in horses, (C.botulinum) is the culprit but the mechanism of gut shutdown could be similar. Unfortunately the equine disease is very poorly understood as well. Diagnosis is by post-mortem biopsy of the GI nervous system, I don't know if anything similar has ever been done in pwME and is obviously as far from ideal as possible in terms of diagnosis.

On a separate note, Whitney Dafoe's family might know the extent of research on this topic given that Whitney has very serious GI symptoms.
 
Trish said:
I think we recognise the cases are rare, but that doesn't mean that there should not be proper research and guidance on how to deal with them when they happen.
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I certainly wasn't suggesting rare = ignorable, just that a degree of circumspection is required when recruiting these rare cases into the service of general ME/CFS advocacy or a research setting that is concerned with elucidating the generality of ME/CFS.
 
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