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

[Lou B Lou]

There is a lot of evidence for anchoring biases and their effects: https://en.wikipedia.org/wiki/Anchoring_effect

The reason I was nervous is because I suspected that you would see me as a grouse rather than a dove. Please consider that *that* anchor has biased how you read my post.

I was commenting on how your paper might be read by those who are coming from a completely different perspective.

I don't think there is any point in me saying anything else.

Please do continue to speak/write about this issue @Lucibee, your points about anchoring are vitally important.

The 'CFS' Psychosocial lobby operate language manipulation to a very high degree. Manipulating language, and perpetual repetition of thought terminating slogans and narratives, are at the core of the tactics of psychologising of ME. Language and Narrative. And we need to be at least as astute in making sure statements cannot be read as supporting or reinforcing the very ideology that undermines ME being taken seriously as a biomedical disease.

Hope that makes sense as I am struggling to write anything at all atm.

 

[Trish]

I think this whole thread has provided some very valuable contributions to the specific and wider issues about ME/CFS.

@Lucibee, thank you for your contribution to this discussion. I think the concept of anchoring is an important one in the context of ME/CFS. I think the paper is sufficiently clear, but sadly some doctors with fixed views that ME/CFS is psychosomatic may deliberately misinterpret whatever they read, however clearly it is written.

While I agree that the sentence you quote could in isolation (management of these patients with stimulus challenge) be interpreted the wrong way around and might be better worded (management with stimulus challenge of these patients), the rest of the article contains several paragraphs that make it absolutely clear which way it is meant.
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I have re-read the letter by the parents and carers. I think their point about doctors caring for the patients needing to know about the current state of biomedical research, and the research cited, is the weakest point of their argument, as although there are some potentially useful clues, which we hope will lead to future effective treatments, the existence of such research does not, as far as I can see, contribute anything useful to the specific problem addressed in Edwards' paper, namely provision of appropriate nutritional support and avoidance of a 'challenge' approach to sensory, OI and exertion sensitivities, and co-operation with families. The important point on causes the paper makes is that theory driven approaches, especially in this case psychological and behavioural ones, are unevidenced and potentially harmful.

Apart from that I see the carers' letter as a positive addition to the Edwards paper in providing context and additional points such as hydration being important as well as nutrition. (I had assumed ensuring adequate hydration would be part of providing adequate nutrition).
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@tuppence, thank you for your contribution spelling out legal issues which may be useful more widely for our medical care beyond the specific case of nutrition in ME/CFS.

@hibiscuswahine, it's very helpful to see it from the perspective of psychiatry, and the role of pain medicine.

Sorry, I'm losing track of who said what. Thanks everyone.

 

[dave30th]

Apologies for this long post, but your question is a good one.

thanks for clarifying!

 

[Jonathan Edwards]

I was commenting on how your paper might be read by those who are coming from a completely different perspective.

I can see that @Lucibee, but I spent about four months crafting and re-crafting the document with precisely that in mind - in fact deliberately weighting all the sections to take account of seven different perspectives that I could identify as relevant - physicians in colleges, psychiatrists, 'ME specialists', carers, patients, journalist and, last but very much not least, lawyers.

There was no way of writing things such that nobody would misinterpret but there seemed to be a way of minimising the options for misinterpreters making active use of such misinterpretations and maybe even flushing out misinterpretations so that they could be exposed for what they are. So far things seemed to have gone fairly well!!

And as Trish says, I think the final comments are pretty bluntly in one direction.

 

[Arvo]

I've read a large part of the article, and I really like the point it makes, thank you for writing it Jonathan. It's an urgent and important topic to cover, and it's imperative to set up a good basic protocol for it.

There are several parts I found especially good, but one of my favorite bits was from the "content for a protocol" section:

If patients who have been given a diagnosis of ME/CFS are to be given an alternative diagnosis, with implications for treatment outside this protocol, this must be based on reliable scientific evidence, and the patient must be given a full explanation of the evidence, both at a general and an individual level, for such a diagnosis.

As a survivor of such a situation, where it is very clear they believed I was experiencing psychosomatic "complaints" and an eating disorder but they never told me that they did, I'd say that while this would be incredibly stressfull if it happens, it does give clarity on what is done and something solid to counter. (It also means that the physician has to go beyond acting on easy prejudices and vague personal beliefs to actually substantiate their view- if they had spent 5 honest minutes with me asking questions it would have been very clear that I did not have an eating disorder.)

I also appreciate @Lucibee's thoughts on some wording in the article. It can be debated wheter it would be better to change it, but I see where she is coming from.

Spoiler: Some details on that, if you are interested

Personally, I tripped on the sentence
"ME/CFS is not an understood ’biopsychosocial’ process, but nor is it a clearly defined disease of which we understand the physiological mechanism." and it has to do with the linguistic build; these two statements are juxtaposed as equals, and they are both stated in a "what they are not" way.

I think it would be better to rephrase as something like: "ME/CFS is not an understood ’biopsychosocial’ process. It is a roughly defined disease of which we understand as yet too little of the physiological mechanism." (It is not this. It is this.)

I think David Davies-Pane wrote what might be the basis of a good, elucidating follow-up sentence: "While the research clues implicate e.g., immunometabolic and neurovascular dysfunction, the evidence is currently not mature and robust."

The following paragraph that mentions McEvedy and Bears is messy and breaks the flow of the article (and why even bring them up in the first place if they are not your topic and their analysis is irrelevant anyway for what you are saying?). Personally, I'd pull out the whole first half of it, pick up at "ME/CFS has no identified tissue pathology." (which connects to the previous paragraph), although rephrased as something like "ME/CFS has no consistent identified tissue pathology."

Jonathan, I get that you find it very important that people do not inflate what is known about ME/CFS, which is good. But you need to take into account how you phrase that, especially in the current context.

Honestly, I found your response to Lucibee insulting and deflective, which is a pity when discussing a possible less strongly executed part of your article. She rightly points out that a good portion of readers will have been "anchored" to the belief that there is no biomedical or physiological cause of ME - the psychosomatic movement has been misrepresenting scientific uncertainty to that effect for decades, and media outlets have until recently been parroting that far and wide. This same movement has also invested heavily in "educating" health care workers and researchers with these claims.

So to wave aside her concern that some detailed parts of your text might read like "the implication is that there is no evidence, meaning such pathways don't exist and will never be found to exist", especially to a pre-influenced audience, with

An editor might think that but not any scientist or properly trained medic I know of!!

is just uncalled for, and nonsensical as an argument. If you are still content with your chosen words after consideration of the criticism, that's fine, but that the exact substance of what you mean is generally evident as some theoretical, "high quality" labeled readers will get it, at least by your assumption, is just nonsense (and rude because you insinuate that editors -which Lucibee is- are just not as smart and enlightened). It's actually a good editor who points out any disconnect between what you as author expect from your readers, and what readers are actually like and will be able to take from the article.
(Also, really, I hope your article gets read far outside of the circle of scientists and "properly trained" medics you know of .)

Added after post just now:

in fact deliberately weighting all the sections to take account of seven different perspectives that I could identify as relevant - physicians in colleges, psychiatrists, 'ME specialists', carers, patients, journalist and, last but very much not least, lawyers.

It's a challenge for an author to adress a wider collection of types of readers properly, and I think you managed to do it in your article. So your effort paid off well.

(I do want to add that none of these groups overlap fully with 'scientist or properly trained medics you know of' )

 

[Jonathan Edwards]

Thank you for the welcome comments @Arvo.

I am sorry if I have been sounding grumpy and offensive. But I feel I have my rights to be a little that way at times. I was not intending to hang out the dirty washing on the writing of this piece but maybe it will do no harm to do a bit of that.

@Lucibee is a greatly valued co-member who often posts incisive insights, always with good humour. Unfortunately, the harm I have seen done by editors to my branch of science over the years is so great that I have developed an allergy to the putting on of an editor's hat. I am an editor too - it is my only official job now - and I mostly use my role to try to expiate the collective crimes of the trade. This is why I like Qeios - people have to justify themselves on their own, and it works very well. If their manuscripts are full of flaws, that helps one understand their value (or otherwise)

I am gong to split this here.

 

[Jonathan Edwards]

But the perceived charge is interesting. Spelling it out may clarify things. I think the point is that my denial of an evidence base for ME/CFS being a specific biomedical condition would provide ammunition for the psychiatrists. My perception was, and still is, the opposite. If I had made the rude comments I did about the incompetence of the BPS crowd and their lack of any evidence base and contrasted that with the biomedical side being just not quite fully worked out yet the BPS reader would sit back comfortably in their chair and conclude that I was another fringe physician nutter who had been persuaded by the patients that there was something wrong with their metabolism or that they were full of viruses.

Perhaps more importantly, the large body of physicians and medical profession in general, who are perhaps the most important target of all this in terms of power to change things, would have done the same - 'Oh come on Jo, you are getting a bit soft in the head in your old age, aren't you, we all know there's nothing much wrong with these people.

So it seemed to me that I was obliged to go well beyond my own comfort zone and that of patients and carers in doing what, after much deliberation, I realised was the only right thing to do anyway, which was to point out that nobody has any theoretical evidence that matters. That is the real point of the article and the one that David Davies-Pane picks out. Note that the last time I did this and got a response from a psychiatrist it was from a certain Prof Sir S.W. who said something like 'I thought that was a very reasonable analysis'. Similarly, I would expect the thousands of general physicians whose help one might want to recruit to say 'Yes, you have a point there, Jo. It makes sense.'

What about the journalists. Well, at least they aren't going to have the usual simplistic headline about the argument between psychology and biomedicine. The message I am trying to convey is that that argument may in itself be a major source of harm. We just want agreement on keeping people fed.

And I think the lawyers will see that what we end up with as most relevant to them are exactly the points that @tuppence has eloquently enlarged on - and that they apply across the board.

Another break

 

[Jonathan Edwards]

So that leaves us with the ME specialist physicians, the carers and the patients. There are a lot of very raw nerves here and many of them are best passed over. But I think a strong message needs to be sent without pulling any punches. That is that treating people on the basis of speculative theory, whatever sort of theory it is, may cause very considerable harm, and in much more complicated ways than people realise. There are a number of obscure sentences in the text, including the apparently irrelevant reference to Acheson and McEvedy and Beard that are targeted specifically to address very particular concerns. The fact that these authors were decribing something that bears no relation to the current concept of ME/CFS is relevant.

From what I have seen recently I think there is a serious risk that we are moving towards a situation for ME/CFS rather like the US where the NHS (our insurance system) reimburses fringe medics using pseudoscientific treatments that may cause major long term harm, plus the knock-on effect that the problem is supposed to be dealt with and can go back to being forgotten. The frying pan of GET was bad enough, the fire of pseudo physiology may be just as bad if not worse.

 

[Nightsong]

From what I have seen recently I think there is a serious risk that we are moving towards a situation for ME/CFS rather like the US where the NHS (our insurance system) reimburses fringe medics using pseudoscientific treatments that may cause major long term harm, plus the knock-on effect that the problem is supposed to be dealt with and can go back to being forgotten. The frying pan of GET was bad enough, the fire of pseudo physiology may be just as bad if not worse.

Do you think this is a genuinely serious risk? The NHS may now be routinely reimbursing private hospitals for carrying out operations but that is a far cry from paying fringe medics to treat pwME, and running a search in Newsbank I see there has been past media coverage of at least 4 different doctors having previously been hauled up before the GMC for trying fringe treatments for ME so that is a strong disincentive. The patients trying apheresis had to go to Germany if I remember correctly although it wasn't entirely clear who was prescribing the anticoagulants.

Of the private physicians most associated with ME/CFS in the UK one of them is, I understand, unwell and not seeing patients and another is no longer taking on new patients and apparently intends to retire from private practice; not having those options to fall back on will undoubtedly very badly affect a number of severe and very severe pwME who as a result of previous negative experiences can be quite disconnected from any NHS care.

What would be ideal is for something sensible and sympathetic on the subject of caring for severely affected pwME to end up in a journal that is widely read among UK medics, the majority of whom will not be remotely aware that ME can be as severe as we all know it can, let alone that feeding issues & gastroparesis-like symptoms can occur in the most severe cases... but what are the chances of that happening?

 

[Jonathan Edwards]

Do you think this is a genuinely serious risk?

I am sure it is. People are pushing for dedicated ME/CFS services with good intention but maybe not realising what that is likely to end up with. The new UK government has put emphasis on GPs being in charge of deciding what services there are and also on encouraging business. In the past unproven medical procedures commonly occurred within the NHS. Unproven (non-pharmacological) therapies mushroomed under the BPS roof and most were outsourced. I think there is a very real chance that outsourced services for ME/CFS will start providing unproven medical procedures because it suits the politics.

The individuals involved in this process are, as you indicate, changing. Anticoagulant therapy has already been taken on in the UK. The physicians who take over may turn out to be less cautious than the familiar ones.

Trying to write anything sensible about this in a medical journal is pretty much a dead duck because the editors will follow the status quo and not want anything controversial to be said. In the recent past the BMJ and Lancet editors have been the very last people to expect help from. The establishment system has failed. The people actively trying to take this forward have realised that communication needs to be through other channels.

 

[Kitty]

What would be ideal is for something sensible and sympathetic on the subject of caring for severely affected pwME to end up in a journal that is widely read among UK medics, the majority of whom will not be remotely aware that ME can be as severe as we all know it can, let alone that feeding issues & gastroparesis-like symptoms can occur in the most severe cases... but what are the chances of that happening?

The lack of access to specialists for severely ill people is worrying, but if we're focusing on those who develop nutritional failure, in a sense it shouldn't matter whether or not the doctor has experience with ME.

If they accept the available evidence (i.e., that there is none) but there is a history of severely ill patients dying of malnourishment, they ought to be equipped to look after them. Managing nutritional failure's probably difficult, but they do have experience of it. There are options available and pathways to follow.

The awful cases we've heard about happened because clinicians thought they knew about ME and people with ME, and they were wrong. Understanding that they don't know anything at all should make care safer for severely ill patients.

 

[Peter T]

The lack of access to specialists for severely ill people is worrying, but if we're focusing on those who develop nutritional failure, in a sense it shouldn't matter whether or not the doctor has experience with ME.

If they accept the available evidence (i.e., that there is none) but there is a history of severely ill patients dying of malnourishment, they ought to be equipped to look after them. Managing nutritional failure's probably difficult, but they do have experience of it. There are options available and pathways to follow.

The awful cases we've heard about happened because clinicians thought they knew about ME and people with ME, and they were wrong. Understanding that they don't know anything at all should make care safer for severely ill patients.

This is the crux of the matter, these severely ill patients are suffering and even dying because their care is based on false beliefs and unevidenced theories rather than acknowledging our ignorance and responding sensibly to the presenting symptoms.

 

[Sid]

They are willing to provide nutritional support for other conditions with unknown cause and widely believed to be "psychological" like anorexia and depression (the severe end). So why not us? What does lack of evidence on aetiology have to do with letting your patient die?

 

[Peter T]

They are willing to provide nutritional support for other conditions with unknown cause and widely believed to be "psychological" like anorexia and depression (the severe end). So why not us? What does lack of evidence on aetiology have to do with letting your patient die?

False beliefs and unevidenced theories.

But yes even if we were ‘malingerers’ why treat us with less compassion than those with other conditions?

 

[Turtle]

False beliefs and unevidenced theories.

But yes even if we were ‘malingerers’ why treat us with less compassion than those with other conditions?

No knowledge at the doctors end and we are not even malingerers but "attention seekers ". Best treatment is to ignore them.
The same for their carers; they fell for it, so ignore them too.

 

[hibiscuswahine]

They are willing to provide nutritional support for other conditions with unknown cause and widely believed to be "psychological" like anorexia and depression (the severe end). So why not us? What does lack of evidence on aetiology have to do with letting your patient die?

Yes, I have been thinking about this too. I would like to know why the physicians even call in psychiatry?

I believe, the physicians who manage severe nutritional problems all the time, (including anorexia nervosa, extreme weight loss from inflammatory bowel disease, the elderly, and clients with self neglect due to psychiatric disorders, be it depression, psychosis etc, to name just a few). The Physicians do not understand what is going on for the pwME, and perhaps, may not even when Physicians with a Special Interest in ME are called in. It is not within the treating physician's level of comprehension or experience.

Why is this? Gastroenterolgists understand about gastroparesis and how uncomfortable eating can be and postural change etc ( I am no expert in this but it would certainly make sense to me as a doctor and as a general psychiatrist if I didn't have ME).

I think the problem comes in with the pain and the Physicians experience with the distress that arises with feeding, and their experience of this with other patients - will likely influence how s/he thinks of the patient. So then what happens? do they feel anxious or uncertain? All doctors are trained to revise their knowledge by reading the available literature, discussing it with their peers for anything they have missed or what their experience is and how they could help and if those suggestions don't work, they will seek consultation with people who know - more specialised gastroenterologists or ME specialists (or appear to know in the case of psychiatry, though I suspect some CL psychiatrists do treat ME as a biomedical not a psychosomatic illness but why haven't they written more articles to inform their colleagues and medical staff? (Or maybe they have?? and I haven't come across it)

If the pain is severe and they cannot manage it with what they would consider reasonable and normal doses of pain relief - they will start getting concerned that the morphine/tramadol dose is starting to get into very high levels and causing side effects - eg sedation, constipation, bowel impaction etc, even unusual behaviour eg like the patient appearing to hallucinate. If the patient is too sedated they might risk aspiration and can't communicate their wishes etc.

A person being very distressed with pain while getting good doses of pain relief, would be concerning and perplexing for the Physicians and the staff and other patients on the ward. That is usually when Consultation Liaison Psychiatry is called in.

(I do not know all the details of the history of the cases often described on threads here - I can only presume that the parents who are advocating for their young person, because they have the most experience of nasogastric feeding and the postural changes required, are coming into conflict with staff who worry about aspiration, while the family want the tube feeding to be done more prone as that is less distressing due to OI in ME)

So something is making the Physicians call in CL Psychiatry. Is it because of the distress and pain? Is it because they think ME is psychosomatic? or the pain is due to the theory of Central Sensitisation?

Why are they listening to the psychiatrist who might re-diagnose the weight loss as a psychiatric disorder eg an eating disorder when none of the history suggests this? Does it make more sense than what the ME specialist is saying? That is the question I would like more information from a physician treating such a case..or have knowledge of such.

The distress of the patient becomes distressing to the staff (and sometimes other patients) and they want to be able to understand it. Staff will come with their own preconceived ideas and CL psychiatrists help with this process based on their training and experience. (eg. meet with representatives of different staff groups, let them air their positive and negative feelings and thoughts in a safe environment and come up with ways to support them in their practice and the patient). This could have a good outcome or a bad outcome for the patient. Also medical wards are busy places, anything out of the "ordinary" or "normal" is often extra work and often nursing teams are understaffed, communication and handovers becomes brief or staff feel the patient or the family are too demanding etc, misunderstandings start occurring, communication becomes strained.

Physicians are the lead treating doctors on a Medical ward, they are the ones to request a CL review. They allow psychiatrists to come and assess the client. The psychiatrist will discuss the case with them and write in the notes the history they gathered, the diagnosis and their recommended psychiatric treatment. Physician's (or any staff on the medical ward) are able to read and then discuss this with the psychiatrist. The Physicians need to make a decision on whether they agree and disagree with the psychiatric treatment as it is their ward and they must justify themselves to all staff. They (the physician or the pwME/family) can ask for a second opinion by an independent psychiatrist if they don't agree with the diagnosis or treatment. Physicians are the one's who have the power to change these situations for the pwME as it is their patient.

(Edited at request of moderation and some paragraphs revised)

 

[Sid]

Yes, I have been thinking about this too. I would like to know why the physicians even call in psychiatry?

Because they don't believe that severe ME/CFS can result in gastroparesis. They are taught in medical schools and on the wards by their consultants that ME/CFS = all bodily systems are operating normally. So a mild case is imagining mild pain and a severe case is imagining severe pain, but it's all the same imaginary process of thinking that you're ill when you're not. Giving tube feeding in this scenario would just add to the secondary gains from being ill that they imagine we're getting, like destroying your life to spend it in bed to get out of having to do the dishes. Or something.

 

[Midnattsol]

I just want to point out that malnutrition is common across the board, and not necessarily treated well even in other patient groups (partly because it is not discovered and/or taken seriously). This is generally believed to be about lack of knowledge on the part of healthcare staff, with mistaken beliefs such as "one can always tell" if someone is undernourished. In Norway the highest prevalence I've seen of undernutrition at a ward (I think it was gastric illness patients) were 70%, but we typically say that one in three patients at hospitals in Norway are undernourished at any given time (and that is more or less only counting calories, never mind the micronutrient deficiencies!). Patients die from lack of/wrong nutrition support, even in wards were you'd think they were aware of it.

Lessening symptoms and removing sensory stimuli that could interfere with eating are the two first levels of nutritional care (illustrated in Norway by our seven-stepped nutrition-care staircase where these two make the two first steps). This is general treatment advice for all illness, and there are guidelines for different symptoms and how to lessen them. Such as dietary advice to reduce nausea or (hopefully) improve gastroparesis. And of course there is medication, but that would be outside the dietitians caree.

There are times when the reason for a patient's undernourished state is psychology, but if the patient is at risk of dying from lack of food psychology need to take a backseat until this has been sorted out. Though if the patient has some energy reserves and is believed to not be in risk of dying the goal is often to support them to eat as normal as possible. One case I remember from my dietitian education was a kid who stopped eating - and it turned out they had developed a refusal to eat of fear of doing it "wrong" as they were yelled at by one parent for not eating "correctly" (and this had only gotten worse as the kid more or less stopped eating and become dangerously thin, as the parent became more vocal out of worry). The kid was very undernourished, but still had some reserves and while at first the thought had been the kid would need nutritional support the family got therapy instead. I don't know how this went, and if nutritional support was needed later despite the therapy, as I wasn't still there when they had scheduled follow-up.

This is a situation where interdisciplinary teams are supposed to be helpful, but the nutritional risk must be taken seriously.

 

[hibiscuswahine]

Because they don't believe that severe ME/CFS can result in gastroparesis. They are taught in medical schools and on the wards by their consultants that ME/CFS = all bodily systems are operating normally. So a mild case is imagining mild pain and a severe case is imagining severe pain, but it's all the same imaginary process of thinking that you're ill when you're not. Giving tube feeding in this scenario would just add to the secondary gains from being ill that they imagine we're getting, like destroying your life to spend it in bed to get out of having to do the dishes. Or something.

Yes, I understand the BPS influence on the diagnosis and treatment of ME, but I am not sure all physicians are taught this at medical school or on their wards by their consultants. Maybe in the UK, but I am not sure that would be the same in my country. Despite the poor outcomes that we read about, and people have actually experienced this in this forum, I think it is important not to assume what Physicians are thinking (and sometimes Psychiatrists either). Oddly enough, we can think for ourselves, we can change our view of an illness with more education. My GP (and many GP's in NZ) firmly believe ME is a medical, not a psychiatric illness. They also follow the NICE guidelines for the treatment of ME. I don't know any physicians personally and would be interested to know exactly what they thought. I know quite a few psychiatrists here that don't believe in the psychosomatic model of ME.

 

[FMMM1]

One such anchoring belief is that there is no biomedical or physiological cause of ME.

Reminds me of a slightly Kafkaesque(?) experience when I was working in the civil service. We were required to do diversity training which basically meant identifying your prejudices - there were some academic references and I looked at one which basically said that the training was useless at addressing problematic attitudes/prejudice - the answer was to design out the problem. I think if there's a willingness to adopt Jonathan's advice, at least at "Health Trust" level, then systems could be put in place to ensure the treatment is delivered. Seems it would be better if NICE did that at national (England) level then that would ensure adoption throughout the UK.
I wonder if NICE might act post Maeve's inquest?