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United Kingdom: Cases of people with ME/CFS with severe feeding problems, in the media
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Jonathan Edwards
Senior Member (Voting Rights)
I don't think things are simple, in fact.
I agree that @SNT Gatchaman 's suggestions make perfect sense.
BUT. We talk a lot about basing treatment on reliable evidence. I worry that patients are caught between two sets of health care professionals presenting them with opposing analyses neither of which is based on reliable evidence in the ME context. In fact, even @SNT Gatchaman 's proposals aren't in this context (even if they sound very sensible to me).
What we need is some reliable evidence.
I agree in general terms with what you say. We do need reliable evidence.
But, specifically how does the fact that it is a person with ME/CFS that is the patient affect things in this case? If someone, anyone, does not seem to be able to eat on their own; if there is documentation showing that their food intake is too low, over a significant period of time; if the person's weight is becoming dangerously low and continues to drop; if they are willing to have some sort of assisted feeding; if doctors who have had experience caring for people with the same diagnosis say that a proposed treatment has not only been safe but useful in other cases; if a person with the same diagnosis died when they did not get assisted feeding... then is that not enough evidence to try assisted feeding while the underlying issue causing the inability to eat is investigated and addressed? I don't think a randomised controlled trial is always required before action is taken.
I ask, because I think this is what a lot of people will be thinking, a lot of people like me who don't have any experience with this. If this thinking is wrong, then it would be good to know why, good to know where the risks are, so that what is asked for is more appropriate.
Jonathan Edwards
Senior Member (Voting Rights)
I don't want to discuss an individual case. All I can say is that on the evidence available to me I do not think things are simple. My previous post gives the basic reason and it is not just a statement of principle. I suspect it is relevant down to fine detail.
We need to sort this mess out, in general terms. We want to see a happy resolution to individual cases but where we lack detail I don't think we should rush to judge who is wrong and who right and in what respects.
I have some personal experience with this type of situation, as you know, although the variables were very different. We had a happy conclusion but things were far from simple. Risks are very real and every decision affects the options for the next decision.
I wasn't meaning to, but yes, we probably need to go back to the general thread. I haven't signed petitions asking for specific things for specific people, precisely because I don't think individual medical care should be decided by petitions. But, all of us can potentially influence general clinical guidance for ME/CFS, so it is good to understand the risks and benefits so our input is soundly based.
This.
Re jejunal tube feeding, it is still advised to not lie flat when feeding. It can also be harder to tolerate and I guess if someone is uncertain or downright negative towards tube feeding already arguing for a more invasive kind of tube feeding would not be easy even if it has other beneficial sides.
cassava7
Senior Member (Voting Rights)
How might jejunal feeding be harder to tolerate than gastric feeding?
Unlike the stomach the intestine has no storing capacity so things must go slower and it is easier for a patient to experience pain, nausea etc due to too much food at once.
Would we expect negative views of tube feeding from the patient in this context?
Given what they're already going through, I would expect severe ME patients to be very positive toward tube feeding, although enduring the act of placing them would no doubt be a dreadful burden, as documented by Whitney Dafoe's family, for example. It would need a light touch, calm, quiet, sensitivity and flexibility on the part of the interventional team. If I were doing this now and from what I've learned here, I would know to be quiet and work in low light as much as possible, which is perfectly feasible when you have x-ray vision
Here I would draw the analogy with much of medical care involving children - it takes more time and will often be seen as "less efficient" than the typical adult patient with a well understood problem list. The flip side is positive medical interventions will often have a much longer runway in terms of improved quality of life over time.
In my experience families typically go to great lengths to protect these types of tubes, viewing them as a literal life-line. Patients would often come in with devices broken or blocked, or hanging on by a thread having been jury-rigged by the family at home. Once we started employing these types of long-term tubes more frequently around 20 years ago and we realised they were then often coming in acutely with device failure (usually on the weekend or holiday), our nursing team set up a system of pro-active changes, planned for a time that suited everyone. Families might be coming from 100s of km away. They developed a patient database and tried to work out the variables that led to longer or shorter device lifetime (eg nutrient, medication mix) in individuals, and liaised with our suppliers who were very helpful with advice for increasing device lifetime (GJTs are NZD 4-500 last time I checked). Our colleagues in ED very much appreciated this too, reducing acute presentations, or they were able to simply take a phone call and arrange for the family to come directly to us the next morning and save an encounter and overnight admission.
Patients with these type of long-term tubes may have profound neurological impairments with very limited communication, but I found it not uncommon to have the pleasure and gratitude conveyed by the patient, not just the family, following replacement, even when the process was clearly going to be painful through a sometimes excoriated gastric stoma. We would see them over many years and so built up a relationship with these kids and their families and you would learn particular articulations or brief facial expressions - not something a superficial view would ever realise.
Tubes can of course come out, but that is often accidental, maybe catching with wheelchair transfers, or related to uncontrolled movements. In contrast, the severe ME patient, lying quietly in a darkened room might be expected to have very stable tube positioning, unless vomiting is a major factor. As far as I've seen patients with anorexia nervosa are generally the only ones that might deliberately pull an NGT, but even then that seems less common than you might have thought - although I might have a very limited view on that, as we usually only get involved for complicated NGT placements. (AN being a whole other conversation in terms of possible biological causes.)
Given what they're already going through, I would expect severe ME patients to be very positive toward tube feeding, although enduring the act of placing them would no doubt be a dreadful burden, as documented by Whitney Dafoe's family, for example. It would need a light touch, calm, quiet, sensitivity and flexibility on the part of the interventional team. If I were doing this now and from what I've learned here, I would know to be quiet and work in low light as much as possible, which is perfectly feasible when you have x-ray vision
Here I would draw the analogy with much of medical care involving children - it takes more time and will often be seen as "less efficient" than the typical adult patient with a well understood problem list. The flip side is positive medical interventions will often have a much longer runway in terms of improved quality of life over time.In my experience families typically go to great lengths to protect these types of tubes, viewing them as a literal life-line. Patients would often come in with devices broken or blocked, or hanging on by a thread having been jury-rigged by the family at home. Once we started employing these types of long-term tubes more frequently around 20 years ago and we realised they were then often coming in acutely with device failure (usually on the weekend or holiday), our nursing team set up a system of pro-active changes, planned for a time that suited everyone. Families might be coming from 100s of km away. They developed a patient database and tried to work out the variables that led to longer or shorter device lifetime (eg nutrient, medication mix) in individuals, and liaised with our suppliers who were very helpful with advice for increasing device lifetime (GJTs are NZD 4-500 last time I checked). Our colleagues in ED very much appreciated this too, reducing acute presentations, or they were able to simply take a phone call and arrange for the family to come directly to us the next morning and save an encounter and overnight admission.
Patients with these type of long-term tubes may have profound neurological impairments with very limited communication, but I found it not uncommon to have the pleasure and gratitude conveyed by the patient, not just the family, following replacement, even when the process was clearly going to be painful through a sometimes excoriated gastric stoma. We would see them over many years and so built up a relationship with these kids and their families and you would learn particular articulations or brief facial expressions - not something a superficial view would ever realise.
Tubes can of course come out, but that is often accidental, maybe catching with wheelchair transfers, or related to uncontrolled movements. In contrast, the severe ME patient, lying quietly in a darkened room might be expected to have very stable tube positioning, unless vomiting is a major factor. As far as I've seen patients with anorexia nervosa are generally the only ones that might deliberately pull an NGT, but even then that seems less common than you might have thought - although I might have a very limited view on that, as we usually only get involved for complicated NGT placements. (AN being a whole other conversation in terms of possible biological causes.)
cassava7
Senior Member (Voting Rights)
Thank you for explaining the difference, this makes sense.
If this is a reply to my comment, I was thinking more of the healthcare personell than the patients (though of course there are also patients that do not want a feeding tube for various reasons).
I just wish nutrition interventions could be introduced sooner. Not thinking about tube feeding necessarily, before that one usually want to try fortification or nutrition drinks. We obviously don't know if it would be beneficial since we have no data, but avoiding malnutrition is generally believed to improve level of functioning and quality of life. I don't think pwME are different in this aspect.
Kalliope
Senior Member (Voting Rights)
BBC Exeter ME patient's hospital care changed after campaign
quote:
The change by the RDE came after her family raised concerns she could die from starvation if her treatment was not changed.
Ms Barrett's father Mark told BBC News: "We are so pleased they have listened and we hope it is not too late."
quote:
The change by the RDE came after her family raised concerns she could die from starvation if her treatment was not changed.
Ms Barrett's father Mark told BBC News: "We are so pleased they have listened and we hope it is not too late."
Sorry @Midnattsol I misunderstood as when I read your comment, I thought the sentence continued from the viewpoint of the patient. That makes better sense to me now
. At any rate I did appreciate the opportunity to share our longer term experience in other scenarios.One other point about this whole area is nagging at me. I've seen plenty of unusual and unexplained bowel behaviours over the years, but I can't recall doing diagnostic or interventional gastrointestinal procedures in a youngster with ME/CFS — and that worries me. It's possible some came through but advertised as something different, but I think I'd recall someone with our classic sunglasses and ear protector fashion stylings.
Anyhow I'm hoping to soon be in a little more professional contact with my gastro colleagues again. I used to run their clinical imaging meetings most weeks and am going to try and pick that back up remotely in the next month. If this can work out for me, I'll enquire about our local experience and report back.
Dolphin
Senior Member (Voting Rights)
She has been posting on Twitter e.g.
https://twitter.com/lucy_x_lou_/status/1631956647953178624?s=46&t=fB55_-omyDIDREBokX-E6Q
Maeve's mother replying on Twitter —
LucyLou on Twitter said (her caps, my bold) —
I fear all these datapoints are suggesting that there is a fundamental failure of understanding across a substantial part of the health service. I'm starting to think that organisations like the NZMC and GMC are going to need to make a definitive statement on this: even institute mandatory training/CME, similar to basic/intermediate resuscitation requirements, across the entire profession before we have a COVID/ME-related wave of avoidable deaths in young people.
LucyLou on Twitter said (her caps, my bold) —
I fear all these datapoints are suggesting that there is a fundamental failure of understanding across a substantial part of the health service. I'm starting to think that organisations like the NZMC and GMC are going to need to make a definitive statement on this: even institute mandatory training/CME, similar to basic/intermediate resuscitation requirements, across the entire profession before we have a COVID/ME-related wave of avoidable deaths in young people.