-
Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
Whey protein powder to address ME/CFS metabolic issues being identified by researchers - which one?
- Thread starter Sasha
- Start date
I don't blame you for considering it! I don't know what to do either.
Sometimes I just want to curl up into a ball and cry, but I don't have any of that left in me. The pain of disease is more just an ever-present background drone now. Almost like a constant suffocating feeling. I need out
Sometimes I just want to curl up into a ball and cry, but I don't have any of that left in me. The pain of disease is more just an ever-present background drone now. Almost like a constant suffocating feeling. I need out
My fingers are crossed that this is the year that we finally get some treatment - not necessarily a cure, but at least a treatment that might take the edge off.
My fingers are crossed that this is the year that we finally get some treatment - not necessarily a cure, but at least a treatment that might take the edge off.
I hope you're right.
trishrhymes
Senior Member
- Messages
- 2,158
Does anyone know whether we can get reliable amino acid testing in the UK? I don't suppose we'll get it on the NHS, but it might be worth paying for.
There are a couple of places:
https://purehealthshop.ecwid.com/#!/Metabolic-&-Functional-Tests/p/48202815/category=12550131
(see Genova amino acid bloodspot on right)
Also http://bluehorizonmedicals.co.uk/ep...acetedSearchProducts&SearchString=amino+acids
I think the second of these two provides more comprehensive testing, but it comes at a price.
@Ben Howell - do you know if this is one of the things that would be tested for in the samples that Ron Davis would be collecting from us?
Ysabelle-S
Highly Vexatious
- Messages
- 524
I think the whey protein powder is helping. It's certainly not caused any problems. Not a miracle worker either. Didn't take it yesterday and felt more lethargic. Could be coincidence, don't know. Don't think I'm taking the full dose that's recommended either.
Glad you're getting some (slightly) positive results, @Ysabelle-S. I took a teaspoon a day for two days and had a run of migraines, and felt more tired.
Just in case that was a coincidence, I may retest it later.
Just in case that was a coincidence, I may retest it later.
Can you expand @Sasha ?
If you mean by metabolomics, then yes, amino acid levels would inherently be part of the testing.
B
Murph
:)
- Messages
- 1,799
To answer a question about how much people take, I take one of the big 30gram scoops. I've had days where I've done that twice (without a notable effect).
When I made my first post I'd had no real crashes since starting the whey. Now i've crashed once. So I'm now less convinced it's any sort of miracle cure, but I think it still is doing some good. At the very least it is getting some calories from protein which hopefully crowds out some carbs. And it tastes pretty good!
Only trouble is I seem to have gone through an $A70 tub in about a month. I shall have to decide if that represents good value or not!
Also, FWIW, since people above are discussing Naviaux and amino tests you might be interestd in this. A while ago , I went and checked if Naviaux's paper showed amino acids being any lower in patients than controls, (like in the Fluge and Mella paper.)
You might remember the Fluge and Mella paper had two groups of aminos. Ones that fed in before the PDH problem (which were normal), and ones that fed in after (which were low).
The first four rows in this picture show the levels of some of the AAs Fluge and Mella found being normal, as measured by Naviaux. The following six rows show some of the ones F+M found being low. You can see columns for female patients and controls, then the same for males.
In summary, it doesn't seem to me to replicate their findings. (nb I am just an amateur at all this). Most AAs are about the same in patients as controls. That could be for technical reasons, I'm not sure (or because F+M's work doesn't replicate: eek!). But, intriguingly, it does seem to show higher levels of the early cycle AAs than the later ones, which is not totally inconsistent with Fluge and Mella.
When I made my first post I'd had no real crashes since starting the whey. Now i've crashed once. So I'm now less convinced it's any sort of miracle cure, but I think it still is doing some good. At the very least it is getting some calories from protein which hopefully crowds out some carbs. And it tastes pretty good!
Only trouble is I seem to have gone through an $A70 tub in about a month. I shall have to decide if that represents good value or not!
Also, FWIW, since people above are discussing Naviaux and amino tests you might be interestd in this. A while ago , I went and checked if Naviaux's paper showed amino acids being any lower in patients than controls, (like in the Fluge and Mella paper.)
You might remember the Fluge and Mella paper had two groups of aminos. Ones that fed in before the PDH problem (which were normal), and ones that fed in after (which were low).
The first four rows in this picture show the levels of some of the AAs Fluge and Mella found being normal, as measured by Naviaux. The following six rows show some of the ones F+M found being low. You can see columns for female patients and controls, then the same for males.
In summary, it doesn't seem to me to replicate their findings. (nb I am just an amateur at all this). Most AAs are about the same in patients as controls. That could be for technical reasons, I'm not sure (or because F+M's work doesn't replicate: eek!). But, intriguingly, it does seem to show higher levels of the early cycle AAs than the later ones, which is not totally inconsistent with Fluge and Mella.
Ysabelle-S
Highly Vexatious
- Messages
- 524
I should have said that I take about two teaspoons of whey in a drink twice a day, so it's not the full dose recommended on the packet. I think that might be heaped desert spoons. I also can't recall if recommended dose is three times a day. I must check. If so, it might be time to up the dose since I've been on it for over a week.
deleder2k
Senior Member
- Messages
- 1,129
Has anyone else tried ISO 100? I'll get mine tomorrow after a 3 week delay (yah!). To test this properly could one try to only "eat" this for 3-4 days to eliminate all other sources of food that may contribute to our symptoms? Or is that a crazy idea?
Murph
:)
- Messages
- 1,799
I've been having the ISO 100 every day for a while now. Been a period of reasonable heatlh, but I'm in a wee crash after overdoing it yesterday so it's not a cure-all. I think only eating it for a few days would be a very interesting experiment ... for someone else to do!
Who knows what effect it may have.You'd probably get dramatic shifts in gut bacteria. Could be good or bad. Risks might include a lack of electrolytes causing dehydration and a lack of fibre causing constipation. I'd ease into it. Let us know how you go!
If you do that, you won't know whether any improvement is due to removing those foods or to adding the ISO 100.
deleder2k
Senior Member
- Messages
- 1,129
I've tried to not eat gluten, wheat, milk and yeast for 2 months. No improvement. If I try to only eat the powder for 3-4 days and I improve bigly (or big league) not knowing what caused my improvement won't be the biggest concern. Then I can try using the powder with some food and see.