Preprint Management of Nutritional Failure in People with Severe ME/CFS: Review of the Case for Supplementing NICE Guideline NG206, 2024, Edwards (Qeios)

I think there's an opportunity here i.e. to ask the UK Devolved administrations what they intend to do re the evident gaps in Maeve's care and highlight Jonathan's excellent publication* as a way of doing that!

@Keela Too - you're in northern Ireland - perhaps the local charities are working on this?

Anyone in Scotland or Wales?


*https://www.qeios.com/read/T9SXEU

 

There are now three 5-star peer reviews.

 

Posts moved from Maeve Boothby O'Neill - articles about her life, death and inquest

I have been looking through the RCP document on feeding and thinking of some further things I might say on Qeios. I will post on that later.

However, it strikes me that it would be useful to add some things about what not to do, arising from the discussions around the inquest. That would include a paragraph spelling out the fact that there is no 'psychological support' that should be used instead of feeding. There is no evidence for CBT reducing the symptoms that give rise to the problem.

The argument that we should stop arguing about causes and provide what is needed is right but what is needed is evidence-based care rather than the quackery of CBT .

 

The RCP document on feeding is interesting but as far as I can see says nothing about people with functioning gut needing to be sectioned in order to qualify for enteral or parenteral feeding.

In the closest it gets to ME/CFS, which is an example of a 'functional' problem it says that even TPN may be needed in exceptional cases and that enteral feeding, including PEG would be relevant - the latter likely if the problem was not expected to be short term.

ME/CFS is not mentioned. But, interestingly, nor is anorexia nervosa, other than in passing in the introduction. Presumably this means that AN is not seen as a "difficulty with feeding" per se and is handled somewhere else. The closest the advice gets to ME/CFS is a category of 'functional gut disorders'. If we take that to mean difficulty feeding where the gut itself shows no structural obstruction then it is probably an appropriate category - i.e. it is a problem with how it functions.

However, if we look at the section on functional gut disorders it becomes clear that the authors are very confused about what they mean - basically they haven't a clue. Maybe this is something that the ME charities should pick up on and suggest gets addressed. The section reads like this:

3.7.7 People with functional gut disorders

Many hospitals have seen an increase in patients referred with severe functional gut disorders who require short or longer-term nutrition support. These patients often have complex multiple conditions and require a multidisciplinary approach to their care.

There has also been an increasing awareness of people with hypermobile Ehlers-Danlos syndrome and gastric and/or GI tract dysfunction. The Royal College of GPs has published a toolkit for clinicians as experience of managing this condition is relatively limited.

So hospitals are seeing more cases with non-structural difficulties feeding. OK. But what exactly are 'complex multiple conditions' and why should that require a multidisciplinary approach. This is so far just flannel.

Then it brings in hEDS and 'GI tract dysfunction'. It mentions the GP toolkit for hEDS which, as we have discussed, is appalling nonsense written by hEDS private physicians who claim everyone has it. And hang on, how does a structural problem like EDS give rise to a non-structural problem with eating? In theory anything is possible but this is the purest bullshit you can imagine. Yes, there may well be people with non-structural problems with feeding but why discuss it in the context of trendy grapevine medicine about a condition that probably doesn't even exist.

What the advice document needs to say is that there is a growing realisation that there are people who find it impossible to eat and keep food down for reasons we have no understanding of' in the context of ME/CFS and perhaps in other situations. We can call these problems functional but with all this confusion it would be better not to. The document can then continue much as it is indicating that such cases may require any of the modalities available for feeding support, dependent on the known major drawbacks of TPN in particular.

I think it may be useful for me to add to the Qeios piece, in the part where I have suggested that general feeding support guidance can be followed, that the current RCP advice is seriously confused in this area and needs attention.

 

Eating can also be combined with tube-feeding. So if there is malnutrition or the patient is severely underweight they should first stabilise his/her weight with, for example, tube feeding. Then they can try to treat the underlying problem.

In other words, I see no reason why a physician would have to choose one versus the other unless there is an ideological view that tube feeding would 'medicalize' and thus worsen the underlying eating problem.

 

A nice point to include.

 

Which is gratifying, but where are all the doubters? Where are all the reviews from professionals I know have been asked to do one?

Fairly soon I am likely to modify it with what may be rather more contentious text. If I make it contentious enough sea lion Garner might even appear.

 

[Q

Thank you for sharing your thoughts on how to proceed with your Qeios article in light of recent developments.

Looking forward to seeing how you will include your thoughts there.

I think it's also possible to post an addendum to your original version. On the other hand ...

This would be extremely worthwhile I think but need an updated version.

For a potential update I wonder if it made sense to add to your references to the Pace trial paper and the Cochrane exercise review also references to the critique of both. At least the Wilshire et al re-analysis to the former and one of the strictly factual comments to the latter?

 

Also as has been already pointed out, malnutrition and dehydration potentially cause all sorts of problems and it is unclear until they are reversed what the underlying eating/drinking/digestive functioning is.

 

Copied post

From the perspective of another potential paper on this subject I think there are several points raised by the inquest, in addition to the context of the RCP working group document, that might be worth considering (there are undoubtedly more but these are the ones that come immediately to mind; I haven't referred back to my notes and am writing from memory):

a) How early enteral feeding should be considered in the context of ongoing oral intake but when there is diminishing ability to eat / nutritional status seems to be declining (RC guidance was raised in this context against Weir's suggestion of early enteral feeding).

b) Roy's argument regarding disuse atrophy IMHO deserves exploration.

c) It might be useful to explore where Weir's view came from that some of the research performed about the necessity of enteral feeding while elevated was performed in stroke patients with impaired cough & swallow reflexes and so the aspiration risks may not be as significant as generally thought in pwME. Roy was adamant this was not relevant and the only relevant factor was that of gravity but may be useful to explore the research, such that it is, around feeding while elevated.

d) Also, from Warren's testimony, in the context of NG feeding, there was a reference to a trial of an NG being dependent on a minimum angle of 30 degrees but preferably 45 degrees. Not sure where the 30 degree angle comes from but the origins of the 30 and 45 degree values may be useful to explore.

e) The variety of enteral feeds available, and the potential lack of tolerance to particular feeds, deserves consideration. In Maeve's case there was discussion of a feed being trialled by NG that she had not tolerated orally. It may be worth exploring how things work in the NHS context - e.g. whether there are a limited number of commercial feeds available.

With regard to PN it may also be worth addressing the arguments in the Lal et al (neurogastro) paper, particularly this paragraph and its imputations:

 

Please do!
Why do doctors become medically paralyzed when ME/CFS is involved. More attention seems to have been payed to looking for symptoms of "functional" in Meave's case than measurements of malnutrition and dehydration.

GET/CBT has made pwME into non-patients, not to be treated as patients.
I thought English doctors were not supposed to help in assisted dying. And what about only leaving starvation as a possible outcome? "Functional" dying?
Is that a preferred outcome compared to the "possibility" of medicalisation?

 

When I was put on a NG tube before I had a diagnosis of gastroparesis, I remember that I looked up the evidence on the 30/45 degree angle and despite digging deep, all I could find pertained to ICU patients who were unconscious. As far as I can recall there were no studies showing evidence of increased aspiration risk in conscious / awake people — in particular, none were cited in the American Society of Parenteral and Enteral Nutrition’s guideline on NG feeding.

 

Most guidelines recommend tube feeding directly into the gut if the risk of aspiration is high as @SNT Gatchaman explained. It is unclear why Roy did not consider this.

For example this one on Nutrition Support Therapy in the Adult Critically III Patient say:

I also did not see it discussed much in reviews of PEG(-J) for example.

 

Yes, I do hope, Johnathan, that if you are thinking of toning up the language of your paper, even if this causes outrage in certain people, as it will, it may be more impactful on the medical community.

I wanted to share some thoughts I have been pondering on while I deal with my emotions of sadness, anger (often rage), frustration, sense of hopelessness and helplessness, whilst I follow the recent coroner's case in the UK.

Ultimately, I see Physician's lack of knowledge and clinical experience treating ME as the primary problem (of course, psychiatry has a lot to answer for in the historic and ongoing treatment of pwME but we need changes to start happening now, or soon, and there also does need to be forward thinking and support of clinicians within the system. There are medically (and psychiatrically) trained clinicians who are diagnosing and treating ME as a primary medical illness (in my experience in NZ).

The way I see it is the medical "paralysis", basically, unable to see the wood for the trees, is that this lack of knowledge, starts to create anxiety and uncertainty within themselves. Usually a doctor will seek more information from their peers and the scientific literature as their first defence to this and to help lower their anxiety. Unfortunately, on a scientific level this is only minimally worked out, ie at the pathophysiological level. Which is what you have reiterated in your paper and is valid, in my opinion.

The next defence (both psychologically and medicolegally) would be to seek an expert in ME. That will depend on availability, it may take time to contact one and have a good discussion, or for them to come and see the person with ME. Next - does what they say make sense to them? That will be very important and will depend on their previous experiences of ME, but also their training in ME, but also any negative attitudes they have towards ME. If they believe people with ME have a medical illness but there is significant "psychological factors" involved, and even worse, just think it is psychosomatic, this will create doubt and likely seal their thinking; they will devise a treatment plan (that they think is medicolegally defensible) and they feel and think they are doing the right thing, until some new information is received and they have to rethink their treatment plan. Also if the patient deteriorates, there is a change in risk and this should trigger a need to respond with more urgency rather than waiting for an expert/additional information. There are so many things in this process that are going seriously wrong for pwME, through no fault of our own, or the illness, and why so many injustices are occurring and such bad outcomes.

There is actually a large body of Expert Consensus by Physicians (and general practitioners) worldwide, These are well documented in the literature of Clinical Practice. This is how most pwME are being treated if they have a doctor who has upskilled themselves in the treatment of ME. Yes, some have not been worked out scientifically on a pathophysiological level or could be challenged as having a weak evidence of research due to lack of funding etc.

One example which is particularly pertinent to maintaining nutrition and fluid balance is Orthostatic Intolerance - the medical treatment is increased salt intake, increased fluid intake and electrolytes (with or without sugar) and compression garments to increase intravascular volume and venous return - one could question if there is any robust scientific evidence for this but clinically it does make a difference for many patients. (unfortunately, no randomised control trials but there are established protocols e.g. out of the USA - Bateman Horne Centre, I personally use this protocol and it is overseen by my GP).

The treating doctor needs to make sure it can be given safely, by ruling out cardiovascular and renal pathology, whereby the extra salt and electrolytes could cause hypertension, fluid overload, heart failure etc. And this treatment is mostly within the control of the patient. Although it is an expense to the patient if there is no provision to fund this, it can be done as an outpatient and within general practice (ie a GP oversees this and takes medical responsibility for it rather than requiring a physician overseeing this via medical outpatients). A person with severe ME and very severe ME who has cognitive dysfunction due to ME, or always in PEM with weakness, low energy levels or other medical complications, is likely to need a carer/family member to help access and prepare the electrolyte drinks, help put on compression stockings and abdominal binders etc. There are some negative effects of volume loading - it needs to be continuous through the day. One may need to bolus fluids prior to exertion (cognitive or physical). There is a lot of preparation and one needs to keep to a routine and needs to keep track of their electrolyte intake (on paper or via an app). They need regular medical follow up to monitor electrolyte levels so housebound patients need to be able to be taken for a blood test by a family member or other options for transport or have a phlebotomist come to their home, which is then based on care provision (which can be very different between countries and often has it's own problems with access, reliability etc. There is also an increase in urination as the body naturally will want to return to "normal" fluid balance via the usually intact kidney function (that involves various feedback loops).

I think when things get difficult, doctors start to intellectualise things. (This is a psychodynamic term, intellectualisation is a defence against anxiety or unwanted feelings, eg sense of failure and many others I won't bore you and the forum with). Some of these are conscious but many are subconscious. This is part of Consultation-Liaison Psychiatry. (I am trained to consultant level but not had the additional training required of this super (sub) specialty.. I hope people in the forum understand this is about examining the behaviour of the doctors, this is very important for making the correct decisions in complex cases where scientific evidence is lacking. I do appreciate psychological and psychodynamic theories have been used with great negative effect for ME and is an emotionally loaded topic for all of us.

So the doctors are having to face their own internal psychological processes, that are arising from their lack of understanding of ME - their anxiety starts growing, they don't know what to do, they intellectualise it and start digging in, often becoming a need for absolute scientific evidence. If anomalies occur (things that don't fit their model of physical illnesses) things like "vague symptoms" or behaviour that doesn't conform to their understanding of health, (which may have cultural differences as well). They start to interpret this as not a sign of a physical process or perfectly natural psychological process and need to have some theory/explanation to lower their anxiety - hence they move towards thinking this is a psychological or psychiatric disturbance (that they have no training in). So to lower their anxiety, they put the person in the "psych" basket. This is a reasonable explanation to them and absolves them of any responsibility as this requires a psychiatrist, or suitably trained mental health professional, to intervene and remove the clinical (and medicolegal) responsibility from them.

But often the person clearly has capacity and competence to make medical decisions. Or the treating doctor think they do. This thinking could be true or false (but, usually if they have doubts, they would ask for a psychiatric consult, or from a clinical psychologist, to do more extensive testing of the person's capacity and competence.

I do wonder if they resist getting psychiatry involved because they are afraid they will stigmatise the client (if they do believe in the biomedical model) or don't trust the psychiatrists, available to them, to mis-diagnose their patient with a psychiatric disorder and ruin whatever therapeutic rapport they had with their patient.

So what does the doctor's then do? This is when critical thinking becomes strained and paralysed in my opinion. The onus is then on the patient and their free will and this too becomes an easy out for them.(victim-blaming, scapegoating etc) But it is still the treating doctor's responsibility to care for the patient. They need to assess the risk in front of them, manage the uncertainties and act appropriately with actions that directly address the medical needs of the patient and their family/carers.

I, personally, think CL psychiatry is in a position to be very helpful in working out these problems in medical teams. Unfortunately they also seem to do a lot of damage to many pwME and the onus is on CL psychiatry to up their game!

One rule of this forum is we are not allowed to discuss or speculate on a doctor's character, psychological processes etc and infer personality issues or problems (even though people regularly do it without censure as we are a patient forum and expressing frustration etc) But for me, the psychological and psychodynamic processes that have plagued the biomedical treatment of ME lies within the doctor, as a person within their culture and society, their own personality, experiences and training. I think this is an important part of medical decision making in ME. I think it also needs to be acknowledged and addressed by the medical community.

Unfortunately, doctor's do not like their psychological processes picked through. I know this, as I have had to challenge medical specialists' thinking and behaviour on many occasions. If one has a therapeutic rapport and the respect of the treating doctor, one can be very straightforward and quite candid (in my experience and culture). They often feel a bit ashamed of themselves (for allowing their emotions and ignorance to govern their thinking processes) but good doctors do want to help their patient and they certainly don't want their patient to die or deteriorate and want to do everything within their power, and with the resources available, to treat them.

Or, one triggers defensive and angry responses in the treating doctor and they become more entrenched in their thinking. The liaison psychiatrist has to be skilful enough to recognise this and then work through this, (especially when it it comes to multidisciplinary teams of differing health disciplines, where multiple people and their processes are involved). Once that process is done, hopefully, medical decision making becomes less about the doctor's emotional and intellectual responses and more focussed on the actual problem (in this case, problems with nutrition and the real risk of starvation and death.) Thereby, able to produce better assessment of the patient's immediate and long term needs, and then, safe and comprehensive treatment plans can be formed.

There is also a power relationship going on between the liaison psychiatrist and the treating doctor whereby they will only listen to another doctor (preferably a consultant) not a psychologist who has not had medical training. Also, ever present is the pressure for physicians to make decisions quickly with resources they may not have access to or any control over and why many systemic failures occur.

Let's hope your paper does get the medical community thinking and communicating in a constructive manner.

edit typos

 

Very sensible, and I hope it’s picked up as an issue, the Drs say they know ME is real, it’s not for them to say whether it’s psychological or not etc but they don’t understand ME. The patient doesn’t respond to their treatment, the patient doesn’t act they way they feel they should, you can see them defaulting to blaming psychological factors, because something doesn’t add up. Yet anyone with a basic understanding of ME is shouting “yes! That’s what happens! Of course that didn’t work/it caused that effect! Of course Maeve’s mum knew what to do for her, she wasn’t “manipulated” she was experienced in caring for Maeve, she knew what she wanted or needed, and when.

 

Yes well inaccurately and without evidence certain professions and departments seem to get away with accusing all patients with certain conditions of being lying manipulators (as if it is a pathology of the condition it can trip of the tongue as 'advice'). And noone calls that out as situationally problematic and psychologically injurous. As well as of course not being any sort of actual expert opinion at all. That bit is fascinating for showing up how inaccurate such notes are and their reaction when facing it retrospectively.

It's something that needs to be called out too, but noone does because of the nonsense of 'don't touch, do you think you know better about mental health bla' and most think they don't so are scared off to stand back and stop asking for evidence the other person knows it either.


There is a problem where exhaustion just used to be a symptom all could see it now needs to be said that is actually NOT the nasty little mis-sell that BPS put out there of 'fatigue being a psych construct you can push through' (or need some sort of 'therapy' for).

We do have an outrageous situation where HCP's eyesight has been primed by these people into seeing pain as 'somaticisation' and exhaustion as 'needing motivation' and fatiguability as 'fatigue'. Writing things off even when they are taking a history. Or not seeing them as 'consequences' of inappropriate treatment by HCPs having an excuse not to believe them for what they are.

So the status quo has been shifted and it does need to be underlined these things are actually physical phenomena, even if it is obvious. I think its so obvious that physical things to do with feeding would relate to exhaustion they aren't said, and then there is this insidious functional training creeping in and it is saying and using as much inference as it can to suggest 'try this first'.

And the whole thing is set up as an argument whether someone even mentions their symptom of exhaustion or just looks it, nevermind suggests 'it's physical'.


And I wonder how many training courses and pathways these things might have polluted. So that they've become instinctive 'triage processes' that are wired in. Drag off the ones who 'look like this' (and we know eg the criteria the FND people suggest as their proposed targets). So something does need to actively face this off for those in that demographic.

It seems to be like a decision chart pushing any condition with certain symptoms under this inappropriate area. And leaving a question mark to do it for those who aren't. And recent reading shows the Liaison Psychiatry is being used as a way to hawk the wards for 'potential targets' or catch them in A&E.

Once they've been sent off to the wrong place I wonder what % have notes that are written in rather different terms and angles to what a medic viewing a medical condition would ('didn't comply' vs 'treatment caused collapse'). And it sounds like the protocols become very different too (eg with tube feeding approaches). SO how much what might be feedback has been historically hidden under that, and confirmation bias.


Yet I think at best people outside this area are being conned into thinking 'we try upping their exertion, and if they get worse at least you know' (and that psych support is a harmless thing with no implications on how they will be viewed or treated, and totally not getting 'questionnaires can exhaust' so questioning of the CBT type certainly can). The 'worth a try' fallacy.

BUT it isn't being emphasised that to obtain the diagnosis it's been confirmed this doesn't work (to use their term 'rule-in' not 'rule-out' anymore now PEM is better defined), is certainly not without harm, and they'll missing opportunity windows that pass very quickly with something like ME by taking such diversions.

ie the equation has been mis-represented as which way around is the 'path of most caution' or whatever it is called. They think the psych one is easier unpicked (and the one that is the 'horse not zebra')!!