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Muscle atrophy not related to disuse

dannybex

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It would be interesting to study this subset of patients, especially the metabolomics.
Fluge, Mella & Co found elevated levels of 3-methylhistidine, at least in males, in their 2016 study. 3-methylhistidine is the marker for muscle tissue breakdown, a sign that one is using one's own muscles for "fuel" in the krebs cycle.

And this 2015 study proposed 'that amino acids are being increasingly used to provide an adequate carbohydrate source for the citric acid cycle.'

Elevated 3-methylhistidine was also found in this study from 2007.

Sepsis (infections) increases 3-methylhistidine, as does a zinc deficiency. I believe elevated cortisol increases it as well, but can't find the study at the moment.

Carnitine
, taurine (in rats), zinc, and glutamine have been shown to lower or normalize it.

Edit: BCAAs also lower 3-methylhistidine.
 
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Kati

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It is so frustrating that we are in 2017 and we have yet to tease out clear and well defined subsets of this disease, let alone have definite biomarkers instead of a case definition based on reported symptoms.

Clearly, there are those of us who lose weight and muscle mass with this illness. And there are those of us who have gained significant amount of weight with disease onset.

Our own experts cannot even figure it out, because of the lack of consensus/ case definition issues, lack of funding for research and because the most severe patients are not even seen in the office.

This disease is so lame. :ill:
 
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dannybex

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How is methylhistadine different than methylhistamine?
I'm not sure, but I don't think there's a connection.

Methylhistamine is a metabolite of histamine, "which is produced by mast cells. Increased histamine production is seen in conditions associated with increased mast-cell activity, such as allergic reactions, but also in mast-cell proliferation disorders, in particular mastocytosis."

Then there's both 1-methylhistidine which is marker for protein (usually meat) consumption (possibly a too high protein diet), and 3-methylhistidine, which is a marker as noted above, for the breakdown of one's own muscles.
 

PatJ

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Would you ever put it in a hot drink like decaf coffee or tea or is the consistency meant for a cold drink?
You could mix a small amount into coffee (although some of the whey might be damaged by the heat) but it's usually taken in larger quantities. Mine comes with a scoop that measures out 22 grams and looks roughly the size of 1/4 cup. The consistency is a fine powder, similar to powdered milk. I mix it with kefir and berries for a morning smoothie that I split into three small meals.
 

RYO

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I can only stay upright for 45mins to an hour before OI symptoms become bad enough that I need to lie down for at least 80 minutes to recover. Standing starts to become uncomfortable within a couple of minutes due to poor blood pressure control. If I'm upright I need periods of sitting, or moving around (presumably because leg muscle movement acts like a pump to help blood circulate).

When moving I have to be careful not to move too much within a short time. I can walk 20-30 steps, stop and do something, then do another 20-30, but if I did 60 continuous steps my muscles would object and I would be setting myself up for PEM. A couple of months ago I tried roughly 60 steps, waited for about 30 seconds, then did another 60 steps (which included going up 10 stairs, slowly). The result was that I had PEM quickly after, and more difficulty walking for the rest of the day. PEM lasted until late the next day.

This is such a contrast to my 73 year old Aunt who easily goes for 3 mile walks and recovers by having a short rest and some tea.
It is unclear to me whether there are subsets of patients that are unable to stand or walk due to POTS or similar autonomic issue and others whose inability to walk is based upon muscle weakness (? metabolic issue).

I know advanced heart failure patients that wear an external VAD (Ventricular Assist Device) that have much higher functional status.
 

Gingergrrl

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It is unclear to me whether there are subsets of patients that are unable to stand or walk due to POTS or similar autonomic issue and others whose inability to walk is based upon muscle weakness (? metabolic issue).
The issue that stopped me from walking prior to my current treatment was a combination of POTS, hypotension & OI, muscle weakness and breathing weakness. I do not know if any of it was of a metabolic cause vs. autoantibody mediated and not sure if I ever will.
 

PatJ

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It is unclear to me whether there are subsets of patients that are unable to stand or walk due to POTS or similar autonomic issue and others whose inability to walk is based upon muscle weakness (? metabolic issue).
In my case I think It may be OI inducing muscle weakness from activity. I don't have POTS but I'm fairly sure that I have low blood volume, and definitely have low blood pressure and 'orthostatic narrowing of pulse pressure' (meaning my pulse pressure becomes narrower the longer I'm upright). If the low blood pressure prevents proper nutrient delivery to muscles, and prevents the clearing of exercise induced by-products (like lactic or carbonic acid) then the muscle weakness could be a result.

Maybe short duration activity leads to byproducts that can be cleared in a reasonable time, but longer duration causes them to build up and overwhelm my body's ability to cope (like a garbage collector strike in a major city; once the strike is over it takes a long time to get rid of the accumulated trash.)

I've also had periods where just holding my arm up causes muscle weakness and 'burn' in that arm; again I think this is from low blood pressure. I can watch my veins contract when my arm is held up, and watch them expand when my arm hangs loose at my side while upright. I think this is a sign that my blood vessels don't contract properly to maintain blood proper blood pressure.
 

RYO

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I have carefully logged my blood pressure and pulse over the last 6 months. I have not noticed significant variation. My tilt table test at NIH was normal. It would be nice if there was an easy way to measure pulmonary wedge pressure as in ICU sepsis patients. Transesophageal ultrasound has been used to provide indirect estimate.

Does anyone know if pulmonary wedge pressure ever studied in ME/CFS patients?

My guess is that pulmonary wedge pressure would be normal. But I am not sure why I feel better after receiving IV fluids during severe relapse. Placebo?
 

PatJ

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But I am not sure why I feel better after receiving IV fluids during severe relapse.
Thinking in terms of being ovewhelmed by exertion (mental or physical) byproducts, then maybe you feel better because the IV fluids quickly dilute those byproducts.

Have you ever tested your blood pressure after having the IV fluids?
 

panckage

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I have had to deal with a lot of muscle atrophy too. Often I'm too weak to clean my apartment even though I can work part time...

I believe that it is ME interacting with 2 main things
1) height - I'm very tall. Tall people are weaker relative to their own body mass. Ergonomics at work are also hell. I work different places so I can not control this
2) INJURIES!!! this is a big one. It seems if I am working I can not recover from injuries. I am just too exhausted from work and adopt horrible posture and body mechanics... It seems the only time I can improve this is in the summer when I'm not working... But when I work it's downhill for the next 10 months until I get another 2 month vacation and can gradually work on strengthening and proper movement
 

RYO

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Thinking in terms of being ovewhelmed by exertion (mental or physical) byproducts, then maybe you feel better because the IV fluids quickly dilute those byproducts.

Have you ever tested your blood pressure after having the IV fluids?
My theory is that many us suffer from vestibular issues during relapses.
IV fluids help perhaps because of its supportive effects similar to treating someone with labyrinthitis.

I also find that small doses of ondansetron help with nausea, dizziness and stomach upset during severe relapse. (5-HT3 receptor antagonist)
 

Rossy191276

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@RYO @viggster

I was wondering whether the NIH study has decided to include muscle biopsies.

I had a biopsy done at the end of last year which revealed severe typeII muscle atrophy. I am bedbound with severe muscle weakness. I was shocked to find that a study in the early 90's showed 39 of 50 ME/CFS patients had type II atrophy and this target has never been looked at again.
 

RYO

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@RYO @viggster

I was wondering whether the NIH study has decided to include muscle biopsies.

I had a biopsy done at the end of last year which revealed severe typeII muscle atrophy. I am bedbound with severe muscle weakness. I was shocked to find that a study in the early 90's showed 39 of 50 ME/CFS patients had type II atrophy and this target has never been looked at again.
The NIH intramural study has decided to definitely include the muscle biopsy. I have been in a crash since my trip to NIH and I am just beginning to feel a little better.

They are performing closed muscle biopsies targeting the vastus medialis / vastus intermedius muscle. They thought about using Seahorse analyzer on muscle samples but it was not technically feasible. Along with routine histologic studies, they are studying muscle using electron microscopy. Genetic studies will be performed. An expert on mitochondrial diseases will also be examining muscle samples.

The procedure itself was not painful but it wasn't exactly pleasant. They also completed 2 skin punch biopsies (one near ankle and the other near lateral thigh). My understanding is that this may help discern whether some ME/CFS patients suffer from neuropathy (small fiber peripheral neuropathy). They have asked a specialist from John Hopkins to help in this area of study.

I am not sure how long it will take for them to complete their analysis.
 

Rossy191276

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The NIH intramural study has decided to definitely include the muscle biopsy. I have been in a crash since my trip to NIH and I am just beginning to feel a little better.

They are performing closed muscle biopsies targeting the vastus medialis / vastus intermedius muscle. They thought about using Seahorse analyzer on muscle samples but it was not technically feasible. Along with routine histologic studies, they are studying muscle using electron microscopy. Genetic studies will be performed. An expert on mitochondrial diseases will also be examining muscle samples.

The procedure itself was not painful but it wasn't exactly pleasant. They also completed 2 skin punch biopsies (one near ankle and the other near lateral thigh). My understanding is that this may help discern whether some ME/CFS patients suffer from neuropathy (small fiber peripheral neuropathy). They have asked a specialist from John Hopkins to help in this area of study.

I am not sure how long it will take for them to complete their analysis.
That's great news...!thank you for your participation and the update... please keep us updated on progress