What needs to change to ensure better care for people with ME/CFS with feeding difficulties?

[Jonathan Edwards]

Can someone summarise what the useful/bearable/survivable alternatives would be? Such as feeding into a vein?

Feeding via a vein, known as parenteral nutrition, is problematic long term because of infection of the catheter tip and thrombosis. It can be done for months but the risks are considerable.

People over 65 given PEG tubes will mostly die within a year because they were going to die within a year anyway. Some will have oesophageal cancer, some maybe motor neurone disease and so on. People with gut obstruction of benign origin can I believe be kept well with PEG tubes for long periods. Whitney Dafoe has had a PEJ tube I think for five years.

 

[Nightsong]

As I understand it, very simply because a group of gastroenterologists led by Dr Peter Paine have been pushing for a consensus not provide feeding support for anyone who does not either have gut obstruction or psychiatric illness with loss of mental capacity. The argument is that feeding support 'over-medicalises'.

This reminds me of something I came across: a couple of years ago Dr Paine (also one of the authors of the BSG document we discussed a little while ago) presented a lecture entitled "First do no harm: walking the gut-brain-nutrition tightrope". Don't think it mentions ME/CFS explicitly, but a lot of the issues we have discussed are there: demedicalisation, biopsychosocial approaches to DGBIs, as well as EDS III and the "neuroconnective phenotype". Very problematic in many respects.

YouTube link

 

[Nightsong]

She was considered to be of sound mind by one physician we are told. That is all. What I do not understand is why the gastroenterologist who presumably advised against further feeding support options did not make that decision for himself. There are aspects to this story that are not at all clear.

If you mean Roy, he said that he was not Maeve's consultant at any point, & only met her twice. He chaired the feeding issues MDT, & said he was involved because of the challenging & complex nature of the case; his service was what he called an "inreach service" that didn't take responsibility for the overall care of patients, which would fall to the named consultants on the wards, & which was mainly concerned with complex IF patients including those (as a tertiary team) who had been referred from other centres. Several clinicians had raised the possibility of psychiatric intervention or sectioning. I wasn't able to listen on the day when Strain testified but suspect he was the main voice against that.

 

[Jonathan Edwards]

If you mean Roy, he said that he was not Maeve's consultant at any point

Talking to Maeve's mother it seemed hard to discover who was actually in charge of Maeve. If he chaired her feeding issues MDT that sounds as if he was in charge of that aspect.

 

[JemPD]

It is a gross injustice and I shall be presenting a UCL Department of Medicine Grand Round on it in January.

Are grand Rounds private Jonathan? I mean i know theyr'e not open to the public, but I have thought a few times that i wish your GRs could be made available to interested physicians etc, outside of UCL, wondered if it were possible to have it recorded, if only on a phone

 

[Jonathan Edwards]

wondered if it were possible to have it recorded, if only on a phone

I don't think I am very good on video. The acoustic is terrible too.

 

[SNT Gatchaman]

I've never had brain fog in any meaningful way. At the most I was globally slowed, with speech slowing commensurate with body movements generally. At my worst I could barely eat and was unable to maintain nutrition and lost weight rapidly. Fortunately in my case this was a relatively short period and with spontaneous improvement to "merely severe" and the support of my wife I managed to avoid the need for more advanced measures. At no point was I not fully compos mentis, and fully aware of my situation, its wider context and able to make rational decisions. I will admit to being more emotional at that time, but I don't think even that was in anyway abnormal given the circumstance — I'm sure I would have been the same had I been Christopher Reeve falling from his horse and suddenly finding a life destroyed, likely permanently.

I could not have qualified for mental health sectioning - unless the rules were meaningless.

And, as Maeve did, I knew the futility of my situation at that time, and I also knew the horror of severe symptoms where death was not necessarily the worst outcome or to be avoided at all costs. I'll quote my wife at the time when describing to colleagues: "Both of us had worked in healthcare for 30 years - nothing prepared us for this disease."

And during this time of severity and dreadful symptoms, the horror was compounded by the realisation of medicine's error — and its magnitude. I've said this before but I was immensely proud of what we did in medicine and it was an enormous blow to realise that there was - shall we just say - this whole other thing. That was something that I came to understand quite quickly, although it's taken further years here to even start to appreciate the history of all the — what we've come to term — shitfuckery*.

However, at the time I would not have pursued or agreed to "sectioning" under psychiatric services if that was what was required for feeding support. As I saw it my life had already been sacrificed and the die was cast by medicine, probably around the time I was born. I might love medicine, sadly medicine did not love me back. One thing still in my power was not to contribute to the disinformation, stick to my truth and the scientific truth, and not reinforce the problem for those following me. Yes it was a hill I would die on.

---
* The same term is also applied to the symptoms themselves, such that medical friends in this boat with all the formal language to hand simply enquire: "how's the shitfuckery today?".

 

[Hutan]

Thanks to George Monbiot for the article and to those who continue to help inform him. I have already used the article in advocacy.

I'm coming late to today's discussion and have only read the posts quickly. I'm sorry if I have misunderstood the arguments made, I'm left a bit confused.

I feel a bit uneasy about a public picking over of Maeve's particular situation, when, even after the inquest, we don't seem to have all of the information. Maybe it is constructive, but maybe it is something that would be better done privately by people who do have access to the details.

I don't think we should assume that Maeve's difficulty with the NG tube or the feed used in it was not based in physical reality. Perhaps sectioning was necessary at some point to save Maeve, perhaps it was not.

But to me, the most important question for the community to be concerned with is, what care should people with ME/CFS receive? I definitely do not think that people with ME/CFS should have to accept being sectioned in order to receive life saving and compassionate care. Sectioning someone may not be a big deal for the doctors who do it, but I imagine that it would be devastating to patients who believe that they are of sound mind, and would have many repercussions in their later health care and lives in general. We've previously discussed the tremendous harm that a diagnosis of a functional disorder/conversion disorder can do to a person, causing them to question whether they are a credible witness to their own life. I am sure that we can have clinical guidance for ME/CFS that does not require sectioning.

It's much like the situation in some countries where people with ME/CFS have to be diagnosed with depression in order to qualify for state welfare support. If that is what it takes, I don't criticise any person seeking or facilitating that depression diagnosis in order to get the financial support they need to survive. But, it's not right and there are many costs, to the patient and to truth, to such a work around. We should be campaigning for people with ME/CFS to get good clinical care and welfare support, without work arounds that can cause harm.

 

[Sean]

This is a political process, not about facts. Cochrane is wrong on the facts. They don't care. Only politics can force their hands, they will never care about being wrong because it has nothing to do with that, it's about power.

About 15-20 years ago a senior biomed researcher (can't remember who) said that the solution to ME/CFS is not scientific, it is political. Meaning the barriers to progress were more political than scientific.

It's much like the situation in some countries where people with ME/CFS have to be diagnosed with depression in order to qualify for state welfare support. If that is what it takes, I don't criticise any person seeking or facilitating that depression diagnosis in order to get the financial support they need to survive. But, it's not right and there are many costs, to the patient and to truth, to such a work around. We should be campaigning for people with ME/CFS to get good clinical care and welfare support, without work arounds that can cause harm.

If there is no other option in life threatening situations then we have work with the options that are available, however inadequate, inappropriate, and risky.

But I too have extremely serious concerns about the use of sectioning, independent of actual mental state, just to gain access to necessary medical services. Having been sectioned on one's medical records is not a good idea at the best of times, but especially for somebody with ME/CFS.

The track record of medicine on ME/CFS makes it difficult in the extreme to have faith that they will not let that combination of labels compound out of control in influencing clinicians' interpretations and management of these patients.

The fact that we even have to need to even have this discussion is beyond appalling, and damning of the profession.

 

[Jonathan Edwards]

I feel a bit uneasy about a public picking over of Maeve's particular situation, when, even after the inquest, we don't seem to have all of the information. Maybe it is constructive, but maybe it is something that would be better done privately by people who do have access to the details.

I also feel uneasy and have tried to think this through. The salient points for me are.
1. Maeve's parents have both made it clear they want her case to be used to help others.
2. Nothing will change until physicians accept that ME/CFS is their responsibility and that it cannot be dumped in a 'third category' that is neither medical nor psychiatric but 'psychological=functional' - to be dealt with by incompetent 'liaison psychiatrists' or half-trained psychotherapists (whatever training means anyway).
3. In the UK it appears that there may only be two people in a position to engage the physicians - having adequate familiarity with ME/CFS, and being fellows of RCP and free enough of personal interest conflicts. Those are Ilora Finlay and myself. Ilora has a problem in that she has had the role of neutral NICE committee chair. I am getting old.
4. Until recently I have found it hard to know how to tackle the problem because I did not know enough about individual cases. Nigel Speight and Helen Baxter have provided useful information but the detail of the clinical errors is crucial to understanding what is wrong. Following the inquest and feedback after my Qeios article I now feel I have a clearer understanding of the specifics.
5. Open discussion is difficult but I learn a huge amount from people's experience and intelligence here. Interestingly, I have also noticed this year that where in the past I have had uneasy exchanges with one or two members we now seem much closer in approach. Everyone has moved towards a common purpose, even if we still debate differences.

 

[Jonathan Edwards]

I don't think we should assume that Maeve's difficulty with the NG tube or the feed used in it was not based in physical reality.

Agreed. I don't think anyone is suggesting that.

I definitely do not think that people with ME/CFS should have to accept being sectioned in order to receive life saving and compassionate care.

Agreed. The argument I raised was whether a physician, knowing that sectioning was the only way to keep a patient alive in the face of the stupidity of the system and the people who had created and ran that system should consider offering the option. It is a rhetorical question but in a sense I think to say it should not be allowed is to do exactly what was done in Exeter that led to Maeve falling between all stools. She got no help because everyone said 'well you can't do it that way'.

 

[Jonathan Edwards]

Sectioning someone may not be a big deal for the doctors who do it, but I imagine that it would be devastating to patients who believe that they are of sound mind, and would have many repercussions in their later health care and lives in general. We've previously discussed the tremendous harm that a diagnosis of a functional disorder/conversion disorder can do to a person,

Sectioning a very big deal for the doctors, I assure you. It is almost as big a deal as switching off a ventilator. How it appears to patients is a matter of how it is presented. In a case like this if I was talking to the patient I would make it clear that the choice was a pragmatic one. Sectioning often involves convoluted arguments about why it is needed. In my wife's case these were handled with the utmost sympathy and transparency.

But to go back to why I raised this in the first place - in this particular context sectioning has nothing to do with a diagnosis of a functional disorder. This is the whole point. If you are considered needing sectioning you are considered to have a formal psychiatric illness - of a sort that is often termed biological, meaning, essentially physical. If you have a functional disorder you don't get sectioned, you get CBT. The whole thing is rife with paradoxes because you might say anorexia nervosa was functional. But in practice there is a conceptual line in doctors heads that puts it with the biological group.

I appreciate that we cannot expect journalists to get into this sort of complexity. Nobody would understand a word. But for me, as maybe one of two people in a position to get doctors to see sense, I need to understand what I think the problem is, even if the strategy for getting people to see sense may equally need to use simpler language.

All this discussion is invaluable in getting a perspective.

 

[Peter T]

The whole thing is rife with paradoxes because you might say anorexia nervosa was functional. But in practice there is a conceptual line in doctors heads that puts it with the biological group.

Perhaps a red herring, but it is even more confusing given there is some evidence of a genetic component to anorexia.

 

[Kitty]

Maybe one of Maeve's gifts to us is better collective awareness of the need to describe ME/CFS without theories or mechanisms.

I'm used to reading about healthcare failings, but some of the doctors' inquest testimony hit me in the face like nothing else has.

Not one of them was willing to say what Jonathan has here. That severely affected people can't tolerate being in hospital and some types of feeding because it makes them feel terribly ill.

It's all we've got, but it has a truth that's nearly always missing.

 

[JohnTheJack]

But to go back to why I raised this in the first place - in this particular context sectioning has nothing to do with a diagnosis of a functional disorder. This is the whole point. If you are considered needing sectioning you are considered to have a formal psychiatric illness - of a sort that is often termed biological, meaning, essentially physical. If you have a functional disorder you don't get sectioned, you get CBT. The whole thing is rife with paradoxes because you might say anorexia nervosa was functional. But in practice there is a conceptual line in doctors heads that puts it with the biological group.

I think this is a really interesting point and one that sometimes gets overlooked in the history of the last few decades. We associate the behavioural approach with psychiatrists, principally he-who-shall-not-be-named of course, but actually it's always been a psychological approach.

I often say that my illness is almost entirely cognitive (though also my immune system is shot and I get neuralgia) and actually think it may be psychiatric in the sense you are using it here.

The reason why Keith Laws and Jim Coyne were interested is that they were exposing exaggerated claims for psychotherapy for psychiatric illnesses. For some time, there's been a massive battle to counter the claims of therapy. There is a guild war. And the most prominent psychiatrist of his generation has been fighting against his own guild: making false claims for psychotherapy, seeking to redefine what may be seen (to a degree, or maybe in some patients) as a psychiatric illness as a psychological illness.

He's also been doing it (intellectually) dishonestly by claiming a psychotherapeutic approach is 'biopsychosocial' and so abusing and misusing that term. I actually wish there could a BPS approach, in the sense that it is normally and properly used: addressing the biology with proper regard to the phenomenology of the illness and offering where necessary psychological and social support to the patient.

 

[JemPD]

But in practice there is a conceptual line in doctors heads that puts it with the biological group.

Do you think that line is about doctors' perceptions of whether the patient can 'help it' or not? - as in the idea that while their refusal to eat is a behaviour - its abnormal but 'they cant help it'.
I have had several friends with anorexia N over the years, 1 who still struggles with it. Her mother spoke to me recently of how, while eating disorder services in the community are all CBT based & often not that helpful or compassionate (in their experience), if you can get to see an actual psychiatrist, they are usually very sympathetic, recognising that the patient cant just decide to eat - they cant, no matter how much they want to be well, they just cant get themselves to eat. She tells of much more compassionate care than she received in the 80s when she first developed it as a teenager.

Do you think the issue is that we are still seen as people who could get better if we chose to and secondary gain combined with 'unhelpful beliefs' is all that is holding us back. Therefore the only help we really need (in their eyes) from medics is to not enable our bad behaviour/unhelpful beliefs.... thus providing 'proper motivation' to change - because actually, WE, can get well if we really wanted to. So helping us would simply demotivate us to do so.

 

[Nightsong]

I'd disagree that AN is conceptualised or categorised along with "biological" psychiatric illnesses. The treatment given is largely psychological-behavioural. I think there is much more considerable awareness of the mortality rate & the potential dangers and a greater familiarity with such cases leading to an established willingness to use sectioning where it is thought necessary, although perhaps worth noting that a decade ago RCPsych/RCP/RCPath produced a report based on concerns they had over several AN cases with fatal outcomes.

As it's causing unease I won't post any more inquest-related observations.

Interestingly evidence from a GWAS suggests AN also has a metabolic component.

 

[Jonathan Edwards]

Do you think that line is about doctors' perceptions of whether the patient can 'help it' or not?

In short, yes.

 

[Jonathan Edwards]

I'd disagree that AN is conceptualised or categorised along with "biological" psychiatric illnesses.

My impression is in keeping with @JemPD 's observation that it depends on the level of service.

I was quite careful with my wording 'But in practice there is a conceptual line in doctors heads that puts it with the biological group.' They may not be aware that that line is in their heads or write as if it is!

 

[rvallee]

In the discussion over sectioning is missing the crucial part: what then? What would have been done to Maeve had she been sectioned? I don't think this can be discussed without those facts, and for certain there is an answer to this question, it's just one made in secret behind closed doors with no accountability. With the main consequence of removing any influence from her family, the only people protecting her.

The possibility that appropriate things would have been done, which could not be done elsewhere, sounds laughable to me. It's not as if she needed to be restrained, force-fed, sedated, encouraged through either positive or negative reinforcement, or anything like that.

What exactly is it that the psychiatric department would had done had the sectioning gone on? Nothing about this discussion matters more than this, and it's basically still mystery through secrecy. Unnecessary secrecy, which generally exists to protect privacy, but here is explicitly abused to shield from accountability.