Video: How dietitians and the wider MDT can help people with ME/CFS, Helen Baxter of The 25% ME Group

In November, as part of the UK Malnutrition Awareness Week, Helen Baxter of The 25% ME Group gave a presentation at the Malnutrition Taskforce Learning Event on how dietitians and the wider MDT can help people with ME.

You can watch the presentation on YouTube, and a transcript is available. Please note there are many errors in the captions and transcript, for example "tube feeding" has been transcribed as "cheap feeding".

https://www.youtube.com/watch?v=buCcmd2iILM

Helen also wrote an article on this subject which was pubished in Dietetics Today, the members' magazine of the British Dietitic Association. I cannot post this as it is only accessible to members.

All the best
Yvonne

 

Thanks for posting this, @Yvonne - I just watched it, and it's what I'd want any dietician dealing with me to watch, if I got into nutrition difficulties.

I expect you've seen it, @Jonathan Edwards?

The big sticking point (as discussed in the video) seems to be avoiding being treated as though failure to eat is psychological. Helen Baxter refers to the NICE guidelines as the 'Get out of jail' card here but my fear is that if a health care provider is convinced ME/CFS is psychological, I don't know how they can be persuaded otherwise. We don't yet have biological markers to show them.

This whole thing really scares me, to be honest.

 

Not yet. I had better have a look.

I think the sticking point is actually something different and it may be important for people like Helen Baxter to take on board.

In medicine there is no 'psychological' category. It is a lay term.
There are medical problems.
And psychiatric problems.
And now 'functional' problems, if you subscribe to that terminology.

If you have a medical or a psychiatric problem you get support, at least if services are in place.
If you have a 'functional' problem you don't.
Functional doesn't mean psychological. It means non-structural, but of course it also implies as a sub-text some peculiar category closer to 'malingering' or 'inadequacy' than psychiatric.

The result is that if physicians insist that someone with ME/CFS does not have a psychiatric problem and therefore cannot be sectioned, they may be more likely to be dumped into the functional group and not supported. The gastroenterologists will say there is nothing medical wrong so they cannot help. Unfortunately, in the modern NHS there is no category for patients for whom 'we do not know what is wrong'.

I will have a look.

 

This is just horrific. Is there no one fighting this in the literature, or in the training that physicians receive? I can't understand how this madness is going unchallenged. The human cost is huge.

Thank you. We desperately need to come up with something that will guarantee proper support for the severely ill.

 

Not so sure about this. The relevant support that patients with AN get are psychological interventions & the gastroenterological support includes force-feeding using NG, and AN could well be - and has been - conceptualised as functional. The problem is that gastroenterologists are not willing to provide escalating (invasive or stomach-bypassing) interventions - NJ, PEJ, IVN - without clear evidence of structural pathology.

I also think there is confusion between supporting the pwME who are just too ill to eat properly (for whom NG or PEG would be appropriate) and those who cannot eat because of the gastroparesis-like symptoms: severe nausea, vomiting & abdominal pain - who cannot tolerate oral feeding or by extension NG feeds (for whom interventions bypassing the stomach may be more appropriate if nutritional needs are not being met). It would also be useful to determine if any medications such as prokinetics or antiemetics could relieve symptoms in the latter case - we have no useful evidence at all.

 

Sorry, what is AN?

 

Why would a PwME need to be sectioned to get feeding help? Couldn't they just say, 'I don't agree that my condition is psychiatric but put me on the psych ward and give me feeding support anyway?' Given that it's a matter of survival?

 

The video covers a lot of useful ground and in general I think is a very good resource.

I would question the reference to 'energy' and of course to things like mast cells and histamine, but these are minor things.

 

AN of course being anorexia nervosa.

I am aware that things are far from ideal for AN patients but at least it is recognised that they need monitoring and giving feeding. The documents supported by BSG seem to be quite clear in wanting to define a third functional group that simply gets recommended for 'psychological support' which of course does not exist in this context.

 

Exactly. But if physicians insist that the ME/CFS is of sound mind then they do not get the option of a psychiatric ward. It is all totally irrational but that is how things work when they are governed by pigeon hole policies as they now are.

 

This is a lethal level of craziness. I've lost track of where the campaigning is on this, but it can't succeed fast enough. And if there isn't any, we need to get some started.

 

The question is who is going to do it?
The responses to the coroner's section 28 report sounded as if NICE might finally engage but I am not sure quite how they are going to solve this problem.
There are a number of charity-based people keen for something to be done but I don't get the impression that most of them really understand what is going on within the physician community - the creation of the anti-Goldilocks functional category that is just wrong.

It seems that there are no physicians interested in seeing the need. There are one or two with an interest in more active care but some of the things they propose do not look to me appropriate. I shall be raising all this at a Divisional meeting at UCL in January and I hope Terry Segal and Anna Gregorowski will be there. This is one thing that I think we are in close agreement on but there is nobody equivalent in adult services as far as I can see. At least one of the cases with feeding problems was under UCH paediatrics in the past but is now an adult and there is no specific local service at all.

 

I don't usually watch videos, but I've just watched this one. It's largely very good, although I'd remove references to fibromyalgia, POTS, MCAS and also to IBS (which will just reinforce the idea that it's an FGID). I don't think there's any evidence for "histamine intolerance" at all? Otherwise there's lots of useful practical advice.

What I don't have a handle on are these cases where there is said to be difficulty in swallowing, which isn't something I experienced myself. Is this just due to debility - to the energy involved in eating - or something else? If the swallowing reflex is intact but the patient says they can't swallow at all I can see where the whole functional disorder thing might come back into play but I hadn't heard of such severe swallowing difficulties in pwME before.

Last month there was a BACME workshop that apparently discussed this:

https://bacme.info/event/severe-and-very-severe-me-cfs-workshop/

I wonder if any gastroenterologists are involved - we need one in an academic medical centre to take this on without the usual preconceptions...

 

I don't understand enough about how the system works to suggest anything, but I can't understand how the system can be so dysfunctional that patients are being left to die because no one has thought things through and nobody in authority cares enough about PwME to do anything about it.

Can't they develop a guideline specifically on this problem? On an emergency basis?

I can't believe what a Kafkaesque mess this all is.

 

I have come into contact with one or two gastroenterologists with an interest in feeding problems. Sadly, I get the impression they work on the basis of a sort of hybrid of vague 'functional gut-brain axis' concepts and equally dubious mechanical or neurological theories about 'gastroparesis' or 'dysbiosis' or whatever. These days people sitting on appointments committees like candidates to have something to sell. The atmosphere is very different from the academic department I trained in.

 

Ilora Finlay is sympathetic but she has not engaged very actively recently. It has been said that she has been preoccupied with the assisted dying legislation. She may also have to keep hands off a bit as a supposedly neutral member of the NICE committee.

 

I found this hard to take on board but the 'system' is now very different from what it was a few decades ago. Everything is now run for the sake of fulfilling targets and rules about equal opportunities, such that any discrimination in quality has lost any significance.

 

But what would they contribute?
Sasha was talking about campaigning, which is what is needed.
Why would a palliative care physician spend time campaigning when all their colleagues are trying as hard as they can to look the other way.