Severe difficulties with eating in ME/CFS

This is clearly an important element. However, the literature from the British Society for Gastroenterology suggests a deliberate disincentive to use feeding support measures in people with ME or 'MUS'.

 

Eating difficulties sounds a reasonable way to cover it.

 

I thought I read somewhere a problem could be the angle at which the tube was inserted in severe case of ME if they have bad orthostatic intolerance. I don't know if there are minimum safety standards in uk or if up to individual doctor

 

Reading the BSG literature it seems that things go much further than ignorance and social attitudes. A case is being made for specific withdrawal or withholding of feeding tubes in the ME/MUS category based on bogus BPS theorising and new invented diagnostic names. It is pretty worrying stuff.

 

Do you know who is creating and promoting these theories?

 

I have not delved into that. They are being propagated by British gastroenterologists under the auspices of their professional body.

 

Something that might explain the differences in opinion in these and other matters related to ME is very different views of what ME is.

That other ME, that to us sounds like a gross misunderstanding, might really exist. And maybe these guidelines were developed with that kind of ME in mind.

 

There are 1,117 papers on PubMed on this DGBI diagnosis (disorders of gut brain interaction).
Most of it is about microbiota affecting the brain.
It has been going for five years at least.

It looks as if the gastroenterologists have invented a fairy story to allow them to publish rubbish papers (and dump the patients on psychologists) just like the neurologists

 

ARFID is an eating disorder where someone can't eat many foods due to sensitivities to certain flavors, colors, or textures. It's common in autism and has nothing to do with body image.

 

I think once you get to options like tube feeding, which are what are being denied, the decision on placing a tube has to involve a physician. I may be wrong but I think there is a need to tackle the gastro side.

 

I agree.

I'd go back to my earlier suggestion about having a two pronged approach - the immediate issue revolves around those small number of cases where the patient is on the verge of being hospitalised or is actually in hospital and where enteral feeding is deemed necessary or very likely to be necessary, in those cases (in the UK) there will be a physician led team following national and professional guidance, it those teams that need to be engaged, although in practical terms the lead physician will likely have the greatest influence.

Baxter, Speight and Weir (2021) bemoan the lack of take up of (CPD) Module on ME:

"The uptake was very poor with fewer than two thousand clinicians taking the module to date. Medical education around ME needs to be made part of the core curriculum for undergraduate students and should also be included in postgraduate education. It is necessary for the clinician to recognize ME/CFS as an organic illness. It can only be hoped that the new NICE Guidelines aid clinicians’ understanding and provide guidance on dealing with nutritional problems such as those described in this series."

It seems clear that the general issues around ME/CFS are going to take a considerable time to disseminate through the NHS and achieving a broad consensus on nutrition in ME/CFS has to be a medium/long term aim - so we have an urgent need for some kind of intervention affecting a small number of patients in critical or near critical condition, and a wider problem of consensus and education. Both are important but in this case urgent would seem to define the priority.

This isn't an easy time to be trying achieve change in in-patient management in the NHS*, and I'd suggest that aim should be to achieve some level of acceptance of management specific to ME/CFS when it comes to tube feeding, rather than attempting to get a perfect all patient, all circumstances set of rules.

*Junior doctors in England to strike for 72 hours in March

 

An example of the biopsychosocial school approach and influence:

 

I can't see what is wrong with that apart from the assertions about "CFS/ME" and weight loss, but severe weight loss in anyone should be basis for referral to a full gastro team for assessment, not just to a dietician.

 

The part about weight loss is hardly insignificant:

The aim and net effect was to get the mention of weight loss removed from the guidelines.

And by saying weight loss is not part of CFS/ME, it increases the chances that it will be psychologicalised/blamed on a patient's maladaptive behaviour/similar

 

I think it might be helpful to compare with cystic fibrosis. When CF is advanced there are multiple body systems affected. Most people think about lung disease and bronchiectasis, but the GI tract is significantly affected. Tube feeding is well established in this scenario.

Apart from well known issues like inability to absorb and digest appropriately due epithelial transport impairment and pancreatic insufficiency, mechanical problems handling abnormal gut content, there can also be a significant higher workload of breathing that means eating competes with respiration. These patients are often on overnight continuous low-rate tube feeding to ensure they get adequate nutrition.

See eg —

Nutritional Care in Children with Cystic Fibrosis (2023, Nutrients)
Improving nutrition in cystic fibrosis: A systematic literature review (2022, Nutrition)

 

I think ME is a biomedical illness and the pwME should be under the care of a physician with consults with gastroenterology (and psychiatry/psychology if there is any need for it), I didn’t suggest otherwise.

A liaison psychiatrist is there to exclude psychological and psychiatric illness and give what ever support they can to the medical team. Often the medical team have overlooked many things due to drug interactions, restrictive diets etc and not just a psychotic disorders, J.E., but other psychiatric disorders, there is a diagnostic sieve just like any other specialist applies to a case.

And despite what some people think - they don’t just sit down and start doing a psychodynamic formulation and enquire about early childhood trauma or any abuse as a routine event. Nor do they sit down and start advising GET and doing CBT for ME/CFS. People seem to have a very skewed view. Maybe this is a UK thing arising from certain hospital trusts notorious for their treatments and research. I don’t have experience of these events in my country but I do know there is severe food poverty on disability, which doesn’t help people get quality nutrition, but also a lot of their income is re-routed into excessive supplementation in some pwME.

CL psychiatrists are very busy in a hospital looking after MH clients who get admitted and assessing, primarily, people’s delirium and cognitive disorders and any difficult or concerning behaviour referred by medical and nursing teams like violence and refusing treatment because of a psychiatric disorder

I do not think they are a useless part of the Care Team for a pwME.

Physicians and the sub-speciality of Gastroenterology and many staff can find it very distressing, as well as the family and the pwME, because they are unable to eat and losing weight.

CL teams (psychiatry, psychology and mental health nurses) often provide support to the pwME, their family, support network, all the staff involved of all disciplines. They are “liaison” as they work with the medical staff and the person/family, especially if conflict arises about the wishes of the patient and their family and often have to have clear but assertive words to the medical team, advocating for the patient/family.

I do think trying to have a clearer and more consensus understanding of the main pathophysiological mechanisms (that we currently know) would be advantageous.

edits:typos