"Failings in the care of patients with Very Severe ME" by Dr Nigel Speight, 2024

[Jonathan Edwards]

Guidelines for treating it with diet are mostly based on best clinical evidence etc. As with much else in nutrition.

So what is 'best clinical evidence'?
Are there good quality trials?
The recent review article abstracts tend to suggest nobody has got very far either in terms of mechanism or treatment evidence. The only consistent documentation seems to relate to diabetes and whatever is wrong there may be quite different from problems in other conditions and merit completely different management.

 

[Amw66]

So what is 'best clinical evidence'?
Are there good quality trials?
The recent review article abstracts tend to suggest nobody has got very far either in terms of mechanism or treatment evidence. The only consistent documentation seems to relate to diabetes and whatever is wrong there may be quite different from problems in other conditions and merit completely different management.

Are there mechanism clues here though.
There seems to be similarities in symptoms / comorbidities with conditions where glucose metabolism are dysregulated

 

[Midnattsol]

So what is 'best clinical evidence'?
Are there good quality trials?
The recent review article abstracts tend to suggest nobody has got very far either in terms of mechanism or treatment evidence. The only consistent documentation seems to relate to diabetes and whatever is wrong there may be quite different from problems in other conditions and merit completely different management.

What we're being taught as dietitians is to put people on a diet of "easily digestible foods", a concept that also is not studied a lot.

It will consists of small meals of lean sources of protein (poultry and fish is seen as most digestible, then pork, then red meat. Preferably boiled or baked, not pan fried), well done vegetables, cooked fruit, dried crackers and generally low-fibre grains. Mashed vegetables and pureed meats are easier than whole products. On the other end patients are advised to avoid "thready" foods such as certain cuts of meat and types of vegetables, too much sugar and sugar substitutes, alcohol, coffee, peppermint, carbonated beverages, heavily spiced foods, foods that cause gas (heavily digestible carbohydrates including beans, onions, cabbages, dairy)

And of course everything can be individually tailored So no, we don't really have good quality trials. For diabetics additional focus is on blood sugar control, so where someone else might be adivsed to eat white bread as it is easier to digest, a diabetic may be told it is better to try to keep fibre intake higher.

 

[Jonathan Edwards]

There seems to be similarities in symptoms / comorbidities with conditions where glucose metabolism are dysregulated

Not that I am aware of?

Diabetes produces generalised neuropathic changes so gastroparesis would not be surprising. We have no evidence of neuropathic changes in ME as far as I am aware.

 

[Jonathan Edwards]

What we're being taught as dietitians is to put people on a diet of "easily digestible foods", a concept that also is not studied a lot.

This is my worry. I am not sure what easy digestibility would have to do with gastroparesis. High roughage foods are generally thought to be good, not bad. Once masticated and exposed to pepsin it is all pretty much a soup anyway I guess.

My memory is that fat stimulates cholecystokinin, which gets bile flow going and also gut motility, so fat ought to be good for paresis? It is a common experience that fatty foods lead to 'indigestion' in terms of discomfort or heartburn but I am not sure that has anything to do with gastric emptying. Maybe it is a sign that the stomach is working a bit too hard if anything.

I think we need some facts. Maybe we need a research project to study this. It is desperately important that management of very severe ME is based on evidence rather than vague theories. This would seem to be one area where clear cut answers could be obtained - even if negative ones.

 

[Sasha]

It is a common experience that fatty foods lead to 'indigestion' in terms of discomfort or heartburn but I am not sure that has anything to do with gastric emptying. Maybe it is a sign that the stomach is working a bit too hard if anything.

I've read that fat causes the lower oesophageal sphincter to relax and that that's what causes the heartburn.

 

[Sid]

Papers on gastroparesis and ME/CFS = 0.

This is unsurprising given the general lack of research on the very severe.

 

[Jonathan Edwards]

This is unsurprising given the general lack of research on the very severe.

Yet one commonly hears of ME patients being told they have gastroparesis. If it really exists in ME and causes severe weight loss why haven't physicians at least written case reports?

 

[Samuel]

Turkey, to my knowledge, is seen as an easily digestible food and thus actually recommended with gastroparesis. This refers to the lean parts. For salmon the fat content is seen as most problematic, but in general fish is also seen as easily digestible.

thank you. i wonder if it was the texture, perhaps dryness?, that affected whitney? salmon regurgitated or got stuck before it reached my stomach. for me, fat affects gastroparesis, but not to my awareness esophagus. does it affect esophagus?

idk why salmon had that effect. i stopped it and since then meals are pureed. idk if pureed salmon would have the same effect. i suspect it would. if fish is good, and salmon bad, idk what i would tolerate. i recall sanma bento [saury] was not too fishy at least.

pretty outrageous that papers on m.e. and gastroparesis are non-existent. anecdotally at least it's very common, and vagus nerve issues suspected in m.e.

 

[Sid]

Managing gastrointestinal manifestations in patients with PoTS: a UK DGH experience

Endoscopy, high-resolution manometry, gastric-emptying studies and colonic-transit studies were commonly performed investigations. Over two-thirds of patients had confirmed or suspected GI dysmotility, 5.9% had organic GI disease (e.g. inflammatory and acid peptic disorders).

 

[Jonathan Edwards]

There is an interesting passage in the Byline Times piece:

In 2021, 27-year-old Maeve Boothby O’Neill died after she became too unwell to take in food and water due to the severity of her ME. She was discharged three times when an NHS hospital allegedly mishandled her care and she died at home in Exeter.

An inquest into her death is ongoing, but the pre-inquest hearing last November heard written evidence from the medical director of her local hospital trust that there was a dire lack of NHS services for patients with severe ME.

“The trust was not commissioned, and therefore not resourced, to provide inpatient treatment for severe ME,” Dr Anthony Hemsely wrote. “[And there was] no opportunity to refer Maeve to a specialist inpatient centre.

“There is a lack of commissioned specialist services for severe ME, both locally, regionally, and nationally. In order to rectify this situation, action is required at the highest level.”

It is useful to see a medical director admitting that services are inadequate. However, there is something disturbing about the way the claim is made. He says the Trust was not commissioned to provide inpatient treatment for severe ME. But then the Trust is presumably not commissioned to provide inpatient treatment for helicopter accidents or respiratory distress from Keutel Syndrome or a hundred and one other things yet we assume that if these things occur there is a service to deal with them.

I often worry about calls for specialist services for ME because most illnesses are just treated in general clinics where anyone with relevant symptoms can attend.

The point being that the claim 'not commissioned, and therefore not resourced' doesn't work. The medical director had a responsibility to provide care for a sick human being. The buck stopped with him, not at the 'highest level'. If he had not commissioned services for severe ME then surely he should have done, and failing that, got on with saving somebody's life who was ill for a slightly different reason than was written in the contract.

There is actually no need for any commissioning in the NHS. It is an artefact of the bogus internal market structure. If each region was simply given money to look after all health problems covered by guidelines the 'therefore not resourced' argument could not arise.

 

[SNT Gatchaman]

I had the same thoughts when I first read that. A similar analogy is - the NHS was not commissioned or resourced to deal with the pandemic novel coronavirus. They still got on with intubating and ventilating.

 

[CRG]

There is an interesting passage in the Byline Times piece:

In 2021, 27-year-old Maeve Boothby O’Neill died after she became too unwell to take in food and water due to the severity of her ME. She was discharged three times when an NHS hospital allegedly mishandled her care and she died at home in Exeter.

An inquest into her death is ongoing, but the pre-inquest hearing last November heard written evidence from the medical director of her local hospital trust that there was a dire lack of NHS services for patients with severe ME.

“The trust was not commissioned, and therefore not resourced, to provide inpatient treatment for severe ME,” Dr Anthony Hemsely wrote. “[And there was] no opportunity to refer Maeve to a specialist inpatient centre.

“There is a lack of commissioned specialist services for severe ME, both locally, regionally, and nationally. In order to rectify this situation, action is required at the highest level.”

It is useful to see a medical director admitting that services are inadequate. However, there is something disturbing about the way the claim is made. He says the Trust was not commissioned to provide inpatient treatment for severe ME. But then the Trust is presumably not commissioned to provide inpatient treatment for helicopter accidents or respiratory distress from Keutel Syndrome or a hundred and one other things yet we assume that if these things occur there is a service to deal with them.

I often worry about calls for specialist services for ME because most illnesses are just treated in general clinics where anyone with relevant symptoms can attend.

The point being that the claim 'not commissioned, and therefore not resourced' doesn't work. The medical director had a responsibility to provide care for a sick human being. The buck stopped with him, not at the 'highest level'. If he had not commissioned services for severe ME then surely he should have done, and failing that, got on with saving somebody's life who was ill for a slightly different reason than was written in the contract.

There is actually no need for any commissioning in the NHS. It is an artefact of the bogus internal market structure. If each region was simply given money to look after all health problems covered by guidelines the 'therefore not resourced' argument could not arise.

It's not in the power of the Trust medical director to 'commission' a service - commissioning i.e allocating funds - is done by the local ICB, in this case One Devon. The ICB distributes funds around the differing NHS Trusts in its area - there are three Trusts in the the One Devon area, of which NHS Royal Devon is one. Your example of helicopter accidents and respiratory distress will be covered by seperate A&E contracts with each of the three Trusts, or in the Keutel Syndrome case perhaps also contracts for Heart and Lung services.

The nature of contracts is that they are almost always exclusive - they say what is being paid for and make no allowance for non specified work - a single expensive patient - i.e one requiring more than an overnight stay and ongoing specialist oversight can easily breach the financial boundaries of a contract, which in a financially stressed service can in turn produce a provider/contractor conflict. Of course in a Public Health Service this is all madness - it treats health as a predictable, unit cost constant activity like bin collection or street cleaning but for the people operating under the system there's no choice but to obey the Kafkaesque rules - that includes hospital medical directors.

The greater question is why the madness should exist at all - I'm afraid that is a political and social question that UK society is unwilling or unable to address.

 

[Jonathan Edwards]

It's not in the power of the Trust medical director to 'commission' a service - commissioning i.e allocating funds - is done by the local ICB,

Yes, I realised that after writing it quickly and decided not to edit since as you say later, the real problem is elsewhere.

I guess I should have said that the medical director should have made sure that he had negotiated sufficient commissioning with the purchaser to ensure that a safe service could be provided.

I would argue that feeding problems in people with severe ME could be accommodated under services for feeding problems in general, or gastroenterology, or neurology, whatever just a much as helicopters come under acute trauma.

I think we are agreed that the real problem lies in the politics and the appointing of people to management posts who put career before humanitarian responsibility. When I was put in the situation of not being able to deliver a safe and effective service I tendered my resignation and left. I regret letting down some old friends but on balance I think I did the only justifiable thing.

 

[Kitty]

I think we are agreed that the real problem lies in the politics and the appointing of people to management posts who put career before humanitarian responsibility.

Maeve's care contrasts starkly with that of a relative of mine. She was complicated too, because she was in her 90s, drastically underweight because she had bulbar palsy and was struggling to eat, and although she wasn't senile, her inadequate nutrition made her confused at times and the illness made her frightened.

Her PEG tube was fitted in hospital, but they transferred her to a hospice that had nursing care – not because she was dying, but because she couldn't cope with the noise and confusion of the hospital ward. They showed her great compassion, despite, presumably, not having a commissioned service for the hospice care of scared old ladies with motor neurone diseases. I wonder if they'd have shown as much for a young woman with a misunderstood illness.

 

[Jonathan Edwards]

there's no choice but to obey the Kafkaesque rules

Just to be clear, there is a very real choice for potential medical directors - not to apply for a job that cannot be ethically performed, or to resign when that becomes the case. I have seen that choice deliberately not being taken too many times. Doctors have perfectly good salaries without applying for extra in a job that cannot be done.

The only thing necessary for the triumph of evil is...., or something like that.

 

[CRG]

Just to be clear, there is a very real choice for potential medical directors - not to apply for a job that cannot be ethically performed, or to resign when that becomes the case. I have seen that choice deliberately not being taken too many times. Doctors have perfectly good salaries without applying for extra in a job that cannot be done.

The only thing necessary for the triumph of evil is...., or something like that.

I suspect that a lot of people at all levels have a sense of hanging in there in the hope that something will change - and then if those people do give up the decision making posts go to the ones who actually don't care that things are increasingly unsafe. I think there was a lot of hope that COVID boost funding would see a step change but the UK is still far from its main competitors in spending per capita - unless the public force politicians to take the hard choice for major and rapid boosts in spending,in the face of age and obesity driven increased demand, safety in all parts of UK health care can only worsen: Health expenditure per capita

 

[Jonathan Edwards]

I suspect that a lot of people at all levels have a sense of hanging in there in the hope that something will change

This behaviour goes back to the mid 1980s soon after the internal market was set up. People who take on these jobs know exactly what they are doing and how cynical they are being -getting extra Brownie points, an A merit award and all that goes with it. By 2010 people were jockeying to get into the bonus salary jobs. As ever, some of these people had been the most 'left-wing' as students. The Two Legs Gooders I call them.

The pattern was set long before Covid. Things are worse now but they were pretty bad by 2005. I haven't met any still employed colleagues who thought Covid would change anything. Most of them have settled into a siege mentality long ago.

The basic point is that someone tried to pass the buck. But if you are complicit in a system that everyone knows is unsafe the buck stops firmly with you.