What do we know about oral rehydration or electrolytes for OI in adult PwME?

Wondering if our knowledge has moved forward on this in terms of trial showing whether they work, understanding why they would work, knowing who they would and wouldn't work for, etc.?

Also wondering about the pros and cons of rehydration recipes including sugar rather than electrolytes alone...

 

The World Health Organisation lists Oral Rehydration Salts in their list of Essential Medicines and they supply a recipe for people to create their own.

https://iris.who.int/bitstream/handle/10665/69227/WHO_FCH_CAH_06.1.pdf

https://en.wikipedia.org/wiki/Oral_rehydration_therapy

 

Thanks, @Arnie Pye - the question is, though, what do we know about such ORS in relation to OI in adult PwME? It seems to be a low-evidence / low-theory zone...

 

Sugar in the form of glucose helps absorb electrolytes and improves the absorption of water more efficiently.

 

I still don't think there is any meaningful information with regard to OI in ME/CFS. I thin Chris Armstrong was hoping to set up a study but I don't know it proved feasible.

I very much doubt that sugar is relevant. Glucose may well mediate sodium uptake in the gut but I think it highly unlikely that matters other than in situations like neonatal gastroenteritis.

If you drink some electrolytes in solution they will not come out the other end of the gut. They just don't. It may be that glucose helps rapid absorption in the stomach or small intestine but if not absorbed there I am pretty sure there will be absorption lower down in the end. Certainly the water gets absorbed. We don't normally pay any attention to taking in glucose when we want to rehydrate during normal life.

The bigger question is whether or not OI in ME/CFS has much to do with electrolytes anyway (it would be sodium only) and even if it does whether drinking sodium actually makes any difference to the shift in control mechanism. Generally speaking if you have a problem with a regulatory mechanism just pushing on it by increasing input does nothing unless you re-set the regulator.

 

If only sodium is key, why do so many recipes seem to involve other salts? There seems to be a lot of variation that I don't understand.

Lots of PwME say their OI improved with electrolytes (not sure about ORS). What do you make of that? I'm wondering at what point lots of anecdotes become indicative.

 

You will find a lot of variation in vitamin packs too. Those WellMan tablets combine about 17 varieties! It is all just a marketing gimmick. For children with life threatening gastroenteritis you need to reach a variety of salts but that has nothing to do with OI in ME/CFS where the (unproven) theory is a lack of sodium and water.

They don't with this sort of thing. Millions upon millions of people swear that vitamins help them when there is absolutely no reason to think that they would. People swear by selenium and ginseng and God knows what. None of it tells us anything.

 

Actually, as I've mentioned several times in other similar threads before, for some of us the glucose makes all the difference.

For me, the only oral rehydration fluids that help are the ones that contain both salts and glucose. Specifically the Swedish brand Resorb. None of the other oral rehydration solutions I've tried over the years (shop-bought or home made) has worked for me.

This doesn't seem to be uncommon, juding by posts in Swedish discussion forums for various forms of dysautonomia.

 

I hear what you say but to me it makes no physiological sense. The fluid goes in to you whether there is sugar or not if you don't have watery diarrhoea. Maybe the sugar makes you feel better for other reasons. I don't think we can assume it has anything to do with absorbing salt.

 

I think you've mentioned before that the literature on OI is in disarray and it's a real shame because needing to lie flat is a major ME/CFS symptom as you've said, and hugely disabling.

 

Just to clarify, only glucose doesn't have the same effect at all.

There really is something about the combination of glucose and salts and water.

As I've mentioned before, in my case you can see on the blood pressure monitor that it has an effect too.

 

Yes, but it doesn't need to have anything to do with this theory about absorbing the salt.

I feel better if I have a nice cup of tea with some milk. A glass of milk does nothing for me. Tea without milk is horrid. I feel better if I drink a glass of alcohol free beer and I know that is because I am conning my hypothalamus into thinking I am drinking real beer with alcohol because it recognises the taste.

Those examples may sound flippant but tastes and smells and sensations of temperature and fullness of stomach can have hugely powerful effects on the autonomic system. The effect of a cold pack of ice on pain is way more powerful than any medication. Cold air on the face when you are fainting in a hot crowded room will instantly restore a sense of stability. It probably gets your blood pressure right too.

To me the absorption theory for glucose and salt really doesn't make any sense in the context of someone who isn't having life-threatening diarrhoea. And we have seen in our discussions that the whole PoTS story for ME/CFS OI makes little sense (beautifully summarised by ME/CFS Skeptic).

 

Just to clarify, I don't have POTS.

 

Understood. I was just referring to the general confusion and lack of reliable evidence over physiology in relation to ME/CFS.

 

I hadn't seen that review, and it's fascinating - it's here.

 

Yes, both of these statements can be taken as true. But they may be completely irrelevant to the use of electrolyte solutions in people who do not have diarrhoea. It is interesting that normal healthy people put out 2-3gm sodium into the gut and reabsorb it. That means that they can reabsorb sodium without eating glucose. So there must be enough glucose around anyway. People do not have osmotic diarrhoea during Ramadan so we have to assume that there is enough glucose around even if you are fasting. That would not be surprising since there is glucose in plasma and interstitial fluid surrounding all cells. I don't know of the lives in gastric and pancreatic secretions but the evidence is that there is enough glucose around in fasting people to stop them losing grams of sodium in the gut. They must reabsorb it.

The situation in someone with diarrhoea is different because you are desperately trying to put back sodium being lost because it is being washed out by water through the colon. In that situation it makes sense to optimise the absorption of sodium by adding glucose to the fluid. So it is true that that is why these rehydration fluids have glucose in them. But I strongly suspect that for anyone using such fluids who does not have diarrhoea the only value of the glucose is to provide some easy access calories - as for sports.

 

That is certainly the story put about.

But again it does not make a lot of sense. If people with ME/CFS have low blood volume it must be due to some re-setting of the volume control mechanism. It is not just due to salt and water deprivation. It is a deliberate shift made by the kidneys.

If that shift is due to an abnormal dysregulation then drinking salt and water might help for half an hour or so but the kidneys will pee it all out by an hour - which is why the volume was low in the first place. But the shift may not be a dysregulation. It may be a normal response to relative recumbency (which is known to reduce blood volume). In which case taking too much salt and water might actually be a bad idea. More likely the same applies as before - the water will just be peed out.

You could argue that it might be good to take electrolytes just before the one time in the day you do stand up and do necessary jobs but beyond that I cannot see any good physiological justification. Unfortunately almost all the doctors who specialise in looking after ME/CFS are pretty clueless about real physiological control mechanisms.

 

Thanks Trish!

I think my problem is low blood volume and that's why I keep rehydrating. I thought I drank 2 liters a day, but after remeasuring it's over 3 liters a day. I don't use the mixtures anymore, too much hassle. Just a little salt several times a day. That's also counting what is in all the products I eat. A bit on an egg, a small handfull of salted nuts, a few potato chips, bread, soup or a hot meal. There is more salt in those than most people think and most of the time there is glucose too.
Most important: it is something I can do to help myself. I'm not deconditioned.

I once experimented with a glucose test after drinking a liter of water. I have type II diabetes. Morning glucose was 7.7, after a liter of water it was 6.8. I have no idea how long it takes my body to absorb a liter of water, it took about 1 hour to do the second test, just before I really had to go to the bathroom. Which test is the right one?
And what about other blood tests? The blood volume that isn't there doesn't contain glucose, Hb or Ht or whatever. Lab tests assume normal bloodvolume, but what if some of us don't have 100 %?
Is that a reason why "nothing can be found" in tests? Or the forever third of patients? If it shows normal, should it be more concentrated?
Only a droplet of blood is tested, but what if I lack a thousand droplets?