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Metabolic profiling reveals anomalous energy metabolism and oxidative stress pathways

Messages
67
This glucose thing is definately a problem for a subset in my eyes....it just makes sense...without sugars going to your brain you have more problems and more symptoms etc.

Why is this happening though?????

Did the bugs cause brain damage? Did they damage the immune system? Did trigger autoimmunity?

What is the cause and perpetuating factor?
Well I guess we all wish we knew, will be testing some things in this area though
 

bertiedog

Senior Member
Messages
1,738
Location
South East England, UK
That's very interesting - your theory linking joint hypermobility and ME.

So, me, my son and my daughter are all very flexible and we all got ME in the same month. My husband is not flexible at all. He did not get ME (although he didn't get what we think was the precipitating virus either).

Since getting ME, my son has developed very bad stretch marks on his back - although he is 16, he has been growing quite a bit. He continues to get more stretch marks and is still quite significantly affected by ME. He was the one who got the worst joint pain - and still does sometimes now.

I got new stretch marks on my thighs after getting ME - although I put on a few kg when I became ill (but just a few kg). And my daughter who has now mostly recovered got new stretch marks around her armpits, and she didn't change weight really. I hadn't really put all that together until now.

Just a thought have you had Bartonella otherwise known as cats scratch disease ruled out?

Pam
 
Messages
67
Dyspenea and tachycardia are both symptoms of POTS and Dyautonomia is mentioned in both the CCC and ICC Criteria.

To add to this a couple of groups are looking inton the Gut Brain connection via the Vagus Nerve which is part of the Autonomic nervous system which is in control of all process that we unconciously dont think about.

Would this ANS dysfunction not reperesent the true multisystem nature of real ME?
Yes I think the Sympathetic nervous system is a good place to look into.
 
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67







@ChrisArmstrong, I think you might find that many of your trial participants do have orthostatic intolerance (including POTS). My son and I do (my daughter is borderline). And it seems on PR that possibly even the majority do.

Chris O'Callaghan in Melbourne believes hypermobility is linked to/the cause of orthostatic intolerance - due to the stretchiness of blood vessels not providing enough resistance to ensure blood gets to the brain when a person moves from supine to standing.

It could fit with your hypothesis. I've always had a bit of a tendency to dizziness upon standing and occasionally fainting. But the full-on orthostatic intolerance didn't develop until the ME kicked in.

But Gijs is right - there does seem to be a bit of a story around autoantibodies and orthostatic intolerance.

BTW - the frequency of hypermobility in ME/CFS patients isn't pinned down all that well I think. Some people very knowledgeable about ME actually dispute that it is more common in People With ME. Do you have a percentage for how many of your trial participants are hypermobile vs the general population?

Checking how many have orthostatic intolerance wouldn't take long and could be very interesting. Chris O'Callaghan might be an useful person to chat to given you are in Melbourne too I think. (Not that I agree with all that he says - he thought ME is really just orthostatic intolerance and the answer is GET when I last saw him. But he may be open to new ideas.)

Yeah I think many believe POTS is due to a lack of collagen as well. It's a main structural element of animal cells. POTS is common in all collagen-based illnesses.
 
Messages
67
To allay the confusion, this cohort had hypermobility issues and POTS issues. This is important to the thought process because collagen is a main structural component of all cells that give them rigidity. Collagen being made up of all non-essential amino acids is likely the first major protein to be degraded as the body would rather use amino acids it can recreate on its own.

I'm not saying this is the illness but I think it's a susceptibility factor. Plus there are many areas of the body where amino acids might be taken. The place they are taken is likely different from person to person. This is if the hypothesis is correct.
 

Hutan

Senior Member
Messages
1,099
Location
New Zealand
Just for your info @ChrisArmstrong and @JaimeS

http://www.thejournal.ie/readme/me-invisible-illness-2792636-Jun2016/
quoted on this thread
http://forums.phoenixrising.me/inde...he-last-diseases-we-know-nothing-about.45061/

There are many clinical studies on ME/CFS which demonstrate that the disease is not psychosomatic and is indeed physiological in nature.

A study published in May 2015 by Armstrong, McGregor, et al. found impairments in both energy metabolism and oxidative stress pathways, along with a reduction in amino acids levels.
 

bertiedog

Senior Member
Messages
1,738
Location
South East England, UK
To allay the confusion, this cohort had hypermobility issues and POTS issues. This is important to the thought process because collagen is a main structural component of all cells that give them rigidity. Collagen being made up of all non-essential amino acids is likely the first major protein to be degraded as the body would rather use amino acids it can recreate on its own.

I'm not saying this is the illness but I think it's a susceptibility factor. Plus there are many areas of the body where amino acids might be taken. The place they are taken is likely different from person to person. This is if the hypothesis is correct.

I have hypermobility and I also have POTS. Also I have very stretchy skin which I think has aged me. I would love to know if there was anything I could do to improve the situation although I am doing very well energy-wise having given up gluten and lactose. The past few days I have had to lower my dose of thyroid and adrenal meds because it feels like I have too much energy and my brain is a bit too hyper.

With regard to blood sugar I have had problems in the past with keeping it up to a reasonable level, I was permanently in a hypoglycaemic state but taking 6mg Prednisolone has sorted that out. It used to wake me up every night around 3 am and often it would be a panic attack. I was treated with thyroid and adrenal meds because my doctor thought I had a mild Sheehan's Syndrome which is basically hypopituitarism but I am not completely sure about that because one time I had to come off my thyroid meds after a load of stress I couldn't tolerate them. My TSH went up from 0.5 to 5.7 whereas if it was a pituitary problem I had that shouldn't have happened.

Still I am very sensitive to where my blood sugar is and have often felt terrible with a perfectly normal blood sugar so for me I think I have had blood sugar issues long before I developed ME/CFS. A low carb diet with plenty of nuts, vegetables, small amounts of cheese, meat and fish suits me well and I have been able to stay slim and being able to walk every day by eating in this way (provided I haven't any virus or infection going on when everything changes and my energy plummets.

Pam
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
Hi @Jaimie

Really like the blog, but haven't worked out how to reply on there.
Ron Davis was saying at lunchtime on Friday that at one stage Whitney was finding improved energy from amino acid powder (tastes revolting apparently).
Sadly he can now only be fed via PICC line.

Whey protein made me feel *so good*.

Unfortunately it also made it hard to breathe. That was before I realized I was intolerant to milk protein... not lactose-intolerant, which is what I had suspected.

I keep thinking I'm going to try a plant-based amino-acid blend. The higher-quality powders were pricey, though, last I looked.

To comment, you may have to make an account. At the top, right-hand bit of the screen you should see something that says 'log in' or something equivalent. Then you can comment easily. I'm not sure we allow anonymous ones? Not in that position myself, as I of course have had an account from day 1! ;)

ohhhh you mean on my blog here on PR! Oops... since you mentioned Ron, I thought you were talking about commenting on #MEAction. You should be able to scroll to the end of the article and there should be a comment box...


-J
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
Jaime, it sounds like you're some kind of sugar vampire! (Edit: not meaning to make light of your situation.)

LOL! The thing is, I don't process sugar or carbs at all well, normally. Not long after that, I stopped eating them almost entirely. Get all my calories from lean protein and coconut oils. Seriously. Fish, chicken, very lean beef, and lots of coconut oil in everything.

Not ready to try epileptic diet -- carbs are still 55-90-g a day, I'd say, even when one is actively avoiding them. I shudder to think what you'd really have to do to get low enough to avoid them enough to go into a primarily ketotic state.
 

halcyon

Senior Member
Messages
2,482
I know many many patiënts who aren't hypermobile at all, so i don't think it has anything to do with ME or POTS, maybe it is another subgroup too?
My guess is that there is an EDS+POTS group that looks very similar or identical clinically to CFS. In really strictly defined ME patients my bet is that the orthostatic tachycardia is due to nerve damage and not overcompliant veins.
 
Messages
67
I've thought about the collagen issue before and wondered if it might be associated with weak membranes, such as the gut barrier, blood vessels, and blood/brain barrier, which might make us vulnerable to unusual stress in various parts of the body?
It's possible yes, the structural proteins of everything important are made of the non-essential amino acids, the amino acids of interest here. They are non-essential because they can be made in the body and that's the very reason they are used in such high amounts for important large structural proteins (even if malnourished during development you can still form these important proteins).
 
Messages
67
I have hypermobility and I also have POTS. Also I have very stretchy skin which I think has aged me. I would love to know if there was anything I could do to improve the situation although I am doing very well energy-wise having given up gluten and lactose. The past few days I have had to lower my dose of thyroid and adrenal meds because it feels like I have too much energy and my brain is a bit too hyper.

With regard to blood sugar I have had problems in the past with keeping it up to a reasonable level, I was permanently in a hypoglycaemic state but taking 6mg Prednisolone has sorted that out. It used to wake me up every night around 3 am and often it would be a panic attack. I was treated with thyroid and adrenal meds because my doctor thought I had a mild Sheehan's Syndrome which is basically hypopituitarism but I am not completely sure about that because one time I had to come off my thyroid meds after a load of stress I couldn't tolerate them. My TSH went up from 0.5 to 5.7 whereas if it was a pituitary problem I had that shouldn't have happened.

Still I am very sensitive to where my blood sugar is and have often felt terrible with a perfectly normal blood sugar so for me I think I have had blood sugar issues long before I developed ME/CFS. A low carb diet with plenty of nuts, vegetables, small amounts of cheese, meat and fish suits me well and I have been able to stay slim and being able to walk every day by eating in this way (provided I haven't any virus or infection going on when everything changes and my energy plummets.

Pam
Powder amino acids might help, we're going to start monitoring a few patients over time to accurately determine correct ratios of supplements to see if we get a correlation in symptom improvement and to see what ratios of amino acids are optimal for the individual. This is just a treatment to help, we still believe the issue with glucose management is the important thread to pull.
 
Messages
67
I cannot take added amino acids because they affect my neurotransmitters and make me feel almost manic. It's horrible so I have never been able to take them for more than a week before I realise what is happening. I agree with regard to managing one's glucose I am aware of this every day and I am really careful about what I eat.

Pam
I have the similar thing as part of my anxiety disorder. It has something to do with the balance of amino acids you take. For instance your amino acids that generate dopamine and serotonin all share the same transporter as BCAA's and they competitively inhibit each other. I tried using BCAA's thinking they might be good but I think they altered my ability to transport dopamine (tyrosine and phenylalanine) and serotonin (tryptophan).

This is the reason we are doing the monitoring study to look at ratios.
 

Richard7

Senior Member
Messages
772
Location
Australia
Have you both always had hypermobility or did it get worse at the start of ME?

The joint hypermobility and stretchy skin are related to collagen. Collagen is the most abundant protein in the body and is entirely made up of non-essential amino acids. The non-essential amino acids are the ones being depleted and we suspect its because they are more inclined to be used for ATP production. The largest stores of collagen are in the joints and skin. So our theory of amino acid catabolism being increased to produce ATP due to an inhibition of glycolysis is linked to this symptom.

So yes your ability to tolerate lower glucose could be related although I would certainly need to test that.

Ok would this relate to @Hip's thing about crepe paper skin wrinkles.https://chronicsorethroat.wordpress.com/