ME Patient Needs Feeding Tube--And Information

I'm writing on behalf of a friend of mine--an ME patient--who is at risk of starving to death because he is too sick to properly digest food. His BMI is currently 18.5 (that's very low) and the public healthcare system where he is has refused to give him a feeding tube.

He's now looking to get one from a private doctor, and we (his friends) are trying to gather information about...really about feeding tubes in general, but also about how doctors see feeding tubes as well.

So please, if anyone can share their knowledge/experience about feeding tubes, or if someone knows someone who has knowledge/experience about them who could get in touch with me, I'd be very grateful.

 

Sorry, I don't know if you're in the UK or elsewhere. I know very little about feeding tubes and the like but wonder of the 25% Group (for severe ME) might be able to help.

https://25megroup.org

Also, can anyone remember which hospital Jessica Bearman was in - was it the Burrswood? If so I wonder if they can help at all?

Edit - I found this - it describes the different types of tubes

https://www.cancerresearchuk.org/ab...-problems/managing/drip-or-tube-feeding/types

 

Burrswood no longer exists

 

This is such a large area that it can not be covered in a simple comment.

There are many different solutions to different problems, and it is also complicated in that it sits between several medical specialism (eg ENT, neurology, gastroenterology).

(Also with my poor cognitive functioning I am struggling with remembering the correct vocabulary.)

Need to know where the problems are
- the mechanics of chewing and swallowing
- the transfer of food stuffs through the digestive system
- the digestive process itself

Solutions need to reflect the problem and how long term a solution is required
- consistency of food stuffs and liquids may compensate for mechanical or neurological problems at the oro pharyngeal stage
- enhancing the nutritional value of food ingested if the amount of food eaten is very restricted in quantity (eg only has the energy to eat small amounts at a time)
- surgery to deal with structural problems in the digestive tract

- tube feeding, tube feeding is a way of bypassing particular stages of the system, most commonly to avoid food/liquid going onto the lungs and/or compensate for swallowing issues. It can be a temporary solution in acute conditions, most often this would be a nasogastric tube or more long term with a peg where the tube goes directly into a lower part of the digestive tract, again most commonly directly into the stomach. Tube feeding relates to the transfer of the food stuffs and by itself will not solve any problems related to the physiological process of digestion

My personal involvement, many years ago now, was with the oropharyngeal phase, the mechanics of eating and swallowing and I know little about treating the process of digestion itself in terms of enzymes breaking down the foodstuff and the absorption of the nutrients.

It should also be born in mind that malnutrition/dehydration also interferes with digestive functioning, so correcting the malnutrition/dehydration may be required before a full understanding of the long term issues can be achieved.

Hope this is of some use.

 

Really sorry to hear your friend is so unwell. It must be worrying for you and for him.

To give context to my comments, I was a Speech & Language Therapist in a hospital. In that setting my job was mostly working with people with swallowing disorders, so I was involved in the decision-making process for whether people needed a feeding tube, alongside dieticians and doctors. The people I worked with had conditions like stroke, dementia, Parkinson’s, motor neuron disease, chronic obstructive pulmonary disease etc.

I am not a doctor, and I was never involved in a case of a person with ME/CFS. I’m just familiar with some of the considerations involved more generally. My suggestions are about information you can gather that would be helpful for the dietitian and doctor.

If you can find a local dietitian/doctor familiar with very severe ME or recommended by someone with or the carer of someone with very severe ME who has had a lot of trouble with eating/drinking or needed a feeding tube, use them.

A BMI of 18.5 is a normal BMI in the UK and US; it is the lower bound of the normal range. So that by itself is unlikely to cause concern to doctors.

In terms of weight, what matters more to the dietitians and doctors is whether your friend is losing weight over time, when he’s not trying to. If your friend has a record of his weight in previous years or months, and there is a clear pattern of weight loss, then it would be helpful to show this to the doctor.

If he doesn’t have a record like this, it might be helpful to start keeping one now.

Your friend/a carer could also keep a record of everything your friend eats and drinks each day for at least a week – including the amounts, e.g. two tablespoons porridge, three sips apple juice etc. This will allow the doctors and dietitian to see at a glance how much food your friend is managing to take in, and whether your friend is getting enough nutrients to keep his body working as well as possible.

Also record why your friend is not able to eat and drink more – e.g. is he not able to chew the food? Not able to swallow it so it just sits in his mouth? Or does he get nauseous or vomit if he eats more? Or does eating take so much out of him that it makes his ME symptoms much worse?

I’d think of it as – your/your friend’s/your friend’s carer’s job is to show the doctor or dietitian

(a) what your friend is able to eat and drink each day, and how long this has gone on for

(b) whether your friend has lost weight when he didn’t mean to, how much weight he has lost and over what period of time

(c) why your friend is not able to eat and drink more

The doctor and dietitian’s jobs are then to figure out how to optimise his nutrition, whether your friend would benefit from a feeding tube, and if so, which type.

Dietitians are key in helping people who are unable to eat/drink enough and establishing if/when and what type of feeding tube will help. If your friend hasn’t been assessed by a registered dietitian, see if he can be.

Ask for what you need. If the best way of assessing him would be for your friend’s main carer to send the dietitian more information on the problem by post (e.g. food diary, details of weight changes etc), followed by a video/phone call between the dietitian and your friend’s main carer, then ask for that.

Nutritionists are not the same as dietitians and it’s a dietitian you need. If in the UK: https://www.nhs.uk/common-health-qu...-find-a-registered-dietitian-or-nutritionist/

In general, feeding tubes will only be considered if adequate nutrition cannot be given orally. There are risks with all feeding tubes, so this is sensible. Sometimes high-calorie foods/supplements and changes in timing and size of meals will be enough, and the person won’t need a tube.

The person also needs to be able to digest the food, i.e. things need to be working below where the tube goes in. So if a tube is going into the stomach, then the stomach and bowels need to be working reasonably well.

If your friend needs a feeding tube, there’s no way of knowing which tube will be best without a lot of medical information about his specific case. The dietitian and doctor will have/get this information. The type of tube I’ve heard people with ME using most is this one. A PEG tube is used when someone is going to need tube feeding for an extended time, and their stomach and bowels are working reasonably well. A little tube goes from the outside of the person’s tummy straight into the stomach. It’s closed off with a cap when not feeding. When feeding, you attach a bag of feed (a bit like a drip, where the bag of liquid hangs up high and attaches via a thin tube to the person). The PEG tube requires a little operation or procedure to put it in, but is then managed at home. If your friend is completely bedbound then his carers would be trained to maintain the PEG.

Here’s more on PEG from an American source, but remember, this might not be what your friend needs at all. https://gi.org/topics/percutaneous-endoscopic-gastrostomy-peg/

I really hope this is helpful. I won’t be able to post again, as I have severe (not very severe) ME.

Try local and national ME associations for more information, but bear in mind that your friend’s case will not necessarily be the same as other people’s. A good dietitian will be really helpful.

@Peter Trewhitt has made a lot of good points above.

Wishing you and your friend the very best.