Severe difficulties with eating in ME/CFS

[Jonathan Edwards]

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?

I agree that I am putting forward my own theory but I would argue that it is a reasonable working theory in line with what we know about ME - that it is a very unusual illness characterised by intolerances of a whole range of stimuli. What I am advocating against are theories of mechanisms for which we have no evidence - like relation to EDS, POTS, MCAS - and talk of gastroparesis as if it implied some failure of the stomach itself as part of a 'multi system disease' for which we have no evidence.

But yes, it may well be useful to focus in the detail of the difficulty, although I rather suspect that these symptoms all come together as part of a vagal response, just as they do in flu.

 

[Jonathan Edwards]

Thanks for the reminder. I did glance at them, but couldn't face more.

Maybe step away for a bit. But those documents are very revealing. They show the depth of the problem in gastroenterology and its nature very clearly.

 

[Binkie4]

Online copy of Times article on ME today


https://www.google.co.uk/url?sa=t&rct=j&q=&esrc=s&source=web&cd=&ved=2ahUKEwjezeWjybX9AhWVg1wKHXn5DI0QFnoECAwQAQ&url=https://www.thetimes.co.uk/article/me-patients-risk-dying-of-starvation-under-nhs-care-kkdwjbkl2&usg=AOvVaw0EhcC3Q8c5PbmPaGS6MYwD

 

[Jonathan Edwards]

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."

And I think this is exactly the wrong thing to be feeding to the public perception. Of course it is right but it is a red flag to the bull.

It is also misleading to the extent that there isn't actually any scientific evidence to support anything.

 

[Jonathan Edwards]

I cannot access the Times piece without paying it seems.

 

[Binkie4]

From the online link


"Dr William Weir, a retired consultant in infectious diseases with a special interest in ME, said: “There’s a fault line which runs through the medical profession, on the one side of which are doctors and [on the] other medical professionals who think that this condition — ME, chronic fatigue syndrome, has a psychological basis.

“Nothing could be further from the truth because there’s now a lot of scientific evidence which supports the proposition that this condition has a primary physical, pathological basis.” Weir authored a paper published last year describing five cases in which NHS hospitals had denied treatment to patients with severe ME, which can be triggered by an infection."

@Jonathan Edwards
https://www.thetimes.co.uk/subscribe/digital-1mf/. link to a month's free access to digital Times

 

[Jonathan Edwards]

Unfortunately, I cannot get into the Times. It may be because I have used their free trial before.

 

[Binkie4]

Also from the online copy

"Professor Adrian Harris, chief medical officer at Royal Devon University Healthcare NHS Foundation Trust, said: “ME is an incredibly complex and poorly understood disease. It is recognised that there is a global lack of evidence for the safe treatment and maintenance of people living with ME. This was highlighted in recent Nice guidance, particularly when it comes to those with severe ME."


edit: sentence withdrawn

 

[mango]

I cannot access the Times piece without paying it seems.

Try this?

https://archive.is/YWjwk

 

[Jonathan Edwards]

Try this?

Thanks that worked fine.

So the story highlights this antagonism between nutrition units and 'ME specialists and family'.
Why, why, why, cannot these 'ME specialists' see the problem being created?

No doubt there are shortcomings to the nutritional care - we have seen why that is likely - but trying to keep someone alive with nutritional support is no easy task and having 'specialists' breathing down your neck telling you that you are doing wrong, despite nobody actually knowing what is right must be infuriating.

 

[JemPD]

Thanks that worked fine.

So the story highlights this antagonism between nutrition units and 'ME specialists and family'.
Why, why, why, cannot these 'ME specialists' see the problem being created?

No doubt there are shortcomings to the nutritional care - we have seen why that is likely - but trying to keep someone alive with nutritional support is no easy task and having 'specialists' breathing down your neck telling you that you are doing wrong, despite nobody actually knowing what is right must be infuriating.

indeed and i imagine being stories about it in the national press will make it all soooo much better

 

[MSEsperanza]

Again apologies for not having read through the whole discussion as moving on too fast. Sorry if I make redundant points.

From skimming, I think it could help offer us as well as the doctors who happen to be in charge of pwME who can't eat a potential alternative explanation which could make it more likely that those doctors deliver appropriate medical interventions.

So I think it is helpful to have @Jonathan Edwards ' thoughts on what could be a potential mechanism and maybe the most plausible potential mechanism on the basis of current evidence.

(And perhaps could also be a continuation of the forum discussion on "Is-me-a-metabolic-problem-or-a-signalling-problem?" -- thread here. )

The problem still seems that doctors make decisions on grounds of mere beliefs instead of scrutinizing existing evidence.

@Midnattsol said above that also applied to other illnesses in which symptoms (can) include an inability to eat.

I think for improving care for people who can't eat it's important to focus on the evidence what helps or doesn't help in conditions that have similar features, even if the underlying cause is different. So as others here suggested, it should be helpful to look at the evidence of tube feeding in eating disorders in general -- not because of an alleged psychogenic cause of inability to eat in ME but because there are other conditions with no apparent physical reasons why tube feeding could be harmful.

There must be some evidence base for different kinds of eating disorders?

Are the documents cited by @cassava7 above in line with guidelines on anorexia nervosa? How do they differ from guidance on other forms of inability to eat in conditions that are not beleived to be psychogenic ?

As we repeatedly discussed, I also think ME advocacy could be be stronger if it didn't refer to the physical vs. psychological argument, especially in combination with making inaccurate claims of evidence for certain allegedly established pathomechanisms/ physical abnormalities. (see this members-only thread)

I think that applies here too: We need better evidence and make sure people don't starve from not giving them treatment that could save them, independent from the underlying cause.

If there is lack of evidence also for treatments of 'established' mental / psychological illness I think it's helpful to point this out too -- but I think that doesn't need to be accompanied by making categorical statements about how useful psychiatry and clinical psychology are in general.(*)

So if there is no good evidence for psychological / behavioral interventions being helpful (or in some form of psychosis maybe no evidence that they are sufficient without also deliver nourishment by tube), then doctors should not withhold tube feeding on grounds that they deem the underlying condition psychological/ mental?

Also, I assume there must be some useful evidence about tube feeding in general that should be applicable in situations where the cause of the inability to eat isn't clear but certain physical causes that could conflict with feeding per tube can be excluded?

In the NICE guidance on eating disorders I could not find any explicit mention of tube feeding -- only found references to the Royal College of Psychiatrists' guidance on Medical Emergencies in Eating Disorders.

https://www.rcpsych.ac.uk/improving...cy/college-reports/2022-college-reports/cr233

Anyone able to have a look what is said there?



(*) Apologies for not giving references now and maybe such categorical statements haven't been made in this thread but if I remember correctly have been made occasionally in other forum discussions.



Edited to add links and remove off-topic part.

 

[Amw66]

ME is often compared with MS.

There are specific issues with swallowing in MS.
Seemingly gastroparesis is common .
Are there similar gut issues ME/ MS which could be linked to lack of energy / signalling / vagus nerve?

MS may not have the full psychogenic baggage that anorexia etc have , and perhaps there may be similarities and some guidance ?

 

[cassava7]

We should be wary of calling the inability to process food in ME an eating disorder if just for translation purposes: in French, “eating disorder” is named “disorders of eating behaviour” (troubles du comportement alimentaire) which infers a psychological cause.

Further, it may well be that the brain is downregulating some inputs and outputs but that is probably a consequence (for example of some cellular exhaustion mechanism), not the root cause of the issue. I would be interested to see studies on how PEM affects digestion and nutrient absorption.

 

[MSEsperanza]

We should be wary of calling the inability to process food in ME an eating disorder

Also if you have a look at the NICE guidance for eating disorders it seems not helpful for any difficulty with eating that has not an established psychological cause.

I don't have the expertise though to gauge if it is even useful for the 'classical' eating disorders.

The point I was trying to make in my post above is that if we oppose the application of certain psychological terms or treatments for ME the reason should not be that these are treatments for psychogenic conditions/ mental illness but that

(1) there is no evidence that ME shares the same pathology as these specific conditions (no matter whether attributed to 'psycho' causes or not), and

(2) there is evidence that (these specific) psychological treatments don't work in ME (from clinical trials investigating all kind of activation therapies in ME).

Edit: Based on the same logic, we also should not embrace biomedical terms for explaining certain features of ME if there is no evidence that they play a role or that they even describe a plausible pathomechanism per se.

I think it's better to just say there are medical interventions that are commonly applied e.g. to prevent starving and if people don't have any other apparent reasons for severe weight loss/ malnourishment that can be treated otherwise, then tube feeding seems the only reasonable option?


What I think could be helpful in addition is to scrutinize the evidence for psychological treatments for 'established' mental conditions/ disease -- without implying that there are no good psychological treatments per se but just asking how good the evidence is also for the latter. Edit: I realize that's rather a long term task and probably won't help question the credibility of non-evidenced but auhoritative treatment recommedations now.

 

[Jonathan Edwards]

ME is often compared with MS.

There are specific issues with swallowing in MS.
Seemingly gastroparesis is common .
Are there similar gut issues ME/ MS which could be linked to lack of energy / signalling / vagus nerve?

Although ME does get compared with MS they have nothing in common in terms of mechanism as far as we know.

MS produces swallowing problems by demyelination of central connections of swallowing nerves (chiefly 9th cranial nerve). ME involves nothing similar that we know of or have reason to suspect.

The same centres affected in MS may have knock on effects on vagal activity. But I think it is likely to be a false quest looking for abnormalities of the vagus nerve itself in ME. The problem is highly unlikely to be due to lack of energy (i.e. metabolic) or failure of signalling. It is much more likely that the vagus is doing its normal job under bad instructions from the brain. After all, in POT the vagus and sympathetic systems are working fine ramping up the heart rate, not failing. The problem is whatever is giving them the instructions.

 

[Jonathan Edwards]

We should be wary of calling the inability to process food in ME an eating disorder if just for translation purposes: in French, “eating disorder” is named “disorders of eating behaviour” (troubles du comportement alimentaire) which infers a psychological cause.

I can see the problem but I think it may be important not to be squeamish about this. Lives depend on it.

I can think of various psychiatric causes of eating disorders where we can equally say that the brain problem is downstream of some other cause. People treated for craniopharyngeoma can rightly be said to have disordered eating behaviour. Why not ME?

I think it would be useful to get rid of this BPS distinction between psychological and physical.

 

[Hoopoe]

The Baxter paper describes it as "problem of nutrition and hydration" which is a good choice of words.

Very severe Myalgic Encephalomyelitis (ME), (also known as Chronic Fatigue Syndrome) can lead to problems with nutrition and hydration. The reasons can be an inability to swallow, severe gastrointestinal problems tolerating food or the patient being too debilitated to eat and drink.

https://www.mdpi.com/2227-9032/9/4/459

 

[Midnattsol]

@MidnattsolI think for improving care for people who can't eat it's important to focus on the evidence what helps or doesn't help in conditions that have similar features, even if the underlying cause is different. So as others here suggested, it should be helpful to look at the evidence of tube feeding in eating disorders in general -- not because of an alleged psychogenic cause of inability to eat in ME but because there are other conditions with no apparent physical reasons why tube feeding could be harmful.

...

Also, I assume there must be some useful evidence about tube feeding in general that should be applicable in situations where the cause of the inability to eat isn't clear but certain physical causes that could conflict with feeding per tube can be excluded?

There are already guidelines for when tube feeding should and shouldn't be used, and they are not specific for diagnoses. Rather they are in place to avoid that anyone is malnourished. For some diagnoses tube feeding can be contraindicated at various times if not all the time, but then we are typically talking about problems in the GI tract so that it cannot tolerate anything going through it.

A problem is that nutrition is not being assessed, a dietitian will not be involved, and these guidelines remain unused. I appreciate I might sound like an advert for dietitian talking points here, but it is so frustrating the number of people who get fobbed off when it comes to eating because it is not being taken seriously by healthcare.

We should be wary of calling the inability to process food in ME an eating disorder if just for translation purposes: in French, “eating disorder” is named “disorders of eating behaviour” (troubles du comportement alimentaire) which infers a psychological cause.

Same in Norwegian, "eating disorder" is anorexia/bulimia/overeating. For anything else we talk about "eating difficulties".

I can see the problem but I think it may be important not to be squeamish about this. Lives depend on it.

The Baxter paper describes it as "problem of nutrition and hydration" which is a good choice of words.

I guess choice of words would be different depending on where one is in the world, I'm familiar with using "eating difficulties" with patients that have problems getting enough food for whatever reason that is not an eating disorder. I would not use the term eating disorder for when I have PEM and don't eat since I get nausea or just generally feel unwell.

 

[Jonathan Edwards]

The Baxter paper describes it as "problem of nutrition and hydration" which is a good choice of words.

I think that is too general. It could include not being able to get to the shops - and for some probably does. We need an agreed description of the sort of problem that occurs despite lots of people being around offering food and can lead to starvation.