Observations & questions after a relapse

[soti]

I'll try to find it again, @AdamS

 

[Wishful]

I don't suggest getting too excited about an arm use respiration link. For me, a couple of minutes of overhead work will trigger PEM, yet I can do hours of digging (strenuous muscle activity) without triggering PEM. Sawing wood by hand (strains some muscle groups different from the first two) takes more than a couple of minutes to be enough to trigger PEM. It seems to be how much you go past your strain limits for specific muscle groups. Often used muscles: hours. Seldom used muscles: minutes.

 

[Murph]

I don't suggest getting too excited about an arm use respiration link. For me, a couple of minutes of overhead work will trigger PEM, yet I can do hours of digging (strenuous muscle activity) without triggering PEM. Sawing wood by hand (strains some muscle groups different from the first two) takes more than a couple of minutes to be enough to trigger PEM. It seems to be how much you go past your strain limits for specific muscle groups. Often used muscles: hours. Seldom used muscles: minutes.

This may make sense. Arms are not only smaller muscles than legs but easier to let become weak and untrained = easier to strain

 

[gregh286]

Okay so I had a bit of a relapse, PEM, symptom exacerbation, you get the story...

My last big relapse happened in maybe March/April this year, since then i've had a tons of bad-ish days but pacing has allowed me to avoid any major crashes and do quite a lot considering.

Anyway...I threw caution to the wind and went on a family holiday abroad last week, I had to be up at 2:30am to travel via car to an airport 90 mins away and get a flight at 6:30am ish. The journey was pretty hellish but aside from being absolutely exhausted on the first day, astonishingly, I recovered well and averaged 2-3 miles of walking per day. I climbed quite a lot of steps, went out on a boat, paddle boarded for 30 mins (with rests), did some light swimming most days (maybe 150-200m max) and stayed up socialising until around midnight each night. I had to make tons of accommodations to do this...lying down a lot, resting a lot, loading up on carbs, fruits, water etc every few hours.

On the final day I made a fatal error...I'd been out on a pedalo boat with some of my family in the morning just after breakfast, we were on the boat for around 60 mins, I did some light swimming. After we got off the boat I saw an amazing snorkelling spot and decided to go for another swim...BAM big mistake, despite resting a bit between each swim, I noticed that my brain started to slowly fade into mush, I was becoming lethargic and my breathing was more laboured...I woke up with PEM, exhausted, pain in legs etc and the journey home was a bit of a nightmare to say the least. Fortunately my family helped me pretty much everything on the way back otherwise i'd have been considerably worse.

Below are a few observations i've made about the relapse when compared to my other relapses:

• In all of my relapses I was doing something physical e.g exercise, it also usually involved using my arms.
• Some of the relapses seem to correspond to overdoing it when it feels like my blood sugar/glucose supply is low or depleted.
• According to Wiki, the brain is dependent on a continual supply of glucose diffusing from the blood into the interstitial tissue within the central nervous system and into the neurons themselves. This could explain why my brain seems to always be the first thing that turns to mush when i'm approaching my limit/relapse threshold. Taking in glucose more regularly e.g every hour (via lucazade sport, fruit or carbs) in combination with pacing seems to help me avoid these dips and maintain a slightly better baseline.
• According to a study that Maureen Hanson talked about in her OMF Syposium presentation, plasma glucose is lower in ME/CFS patients, and endurance athletes with higher plasma glucose usually recover better.

Question:

• What thing/s could be affecting glucose utilisation/absorption in this way?

Yea the dreaded CFS wall. Think we have all experienced it. Just not recycling atp fast enough....body panics.....cell danger...shuts down glycosis. Can happen in stress event....physical event....from nowhere......adrenaline surge.
Good weapon here is d.ribose.
Its a metabolic switch.....why or how remains to be uncovered.
And as for low carb diet.....thats a killer for me. I need to maintain decent glucose levels.

 

[gregh286]

Just on blood sugar levels...

I have been getting a lot of incremental improvements over the last year from suppplementing with whey. (The idea is to feed into the krebs cycle downstream of Fluge and Mella's hypothesised PDH blockage (although perhaps the improvements come from another mechanism, who knows!)). Anyway, by adding all this whey to my diet, I've put on about 7 kilos. Okay maybe 8. Fine, I've put on 10kg. I feel much better and almost never crash these days, but geez am I portly.

So I decided to cut out carbs and see if I could shed a bit of this fat. I was doing some fairly minor home renovations this week, drilling some bits of wood onto my deck, the sort of thing I can do sitting down. I was doing a similar thing before my new low-carb diet without any problems. But this time, I experienced a huge and very sharp crash. Went and spent 3 hours in bed in the middle of the day in an absolutely catatonic state. (I'm mild so this is a rare event for me.)

I'm now back on the carbs. I may be a touch rotund but at least I seem to be able to avoid PEM!

Hi murph.
Good to hear aminos working out.
Actually i find glutamine and aakg just as good and without turning into a yeti.
D ribose also....but be careful with it...too much can suppress immmune system and you get an awful kickback somedays. Same effect i get if i use prednisone. Works sweet next day but immune system goes berserk when you pull out.
Potatoes and veg seem to the best pure form of carbs that doesnt cause cdr.
I can react real bad to pasta.
Rice not so bad.

 

[gregh286]

Oh and btw.
My cfs mate ex triathlete champ started ucan around 1.week ago.
Its early days but reckons its turbo charged his energy.
He and i both have tried same.protocols over years and its early days but its a big a.breakthrough as anything he tried.
Just got mine will update later.

 

[AdamS]

I don't suggest getting too excited about an arm use respiration link. For me, a couple of minutes of overhead work will trigger PEM, yet I can do hours of digging (strenuous muscle activity) without triggering PEM. Sawing wood by hand (strains some muscle groups different from the first two) takes more than a couple of minutes to be enough to trigger PEM. It seems to be how much you go past your strain limits for specific muscle groups. Often used muscles: hours. Seldom used muscles: minutes.

Interesting observations I think it is certainly possible that fatigue signalling is more sensitised (via receptors such as P2X4, β-1 & β-2) on certain muscle groups. I know Alan Light and some others have studied this in detail.

In my view, the speed at which PEM is induced by overhead work is likely explained by autonomic dysfunction and the fact that raising ones arms above the head means that the heart has to pump blood harder against gravity, this activity could amplify the signal mentioned above triggering PEM at a much lower threshold.

 

[jpcv]

Oh and btw.
My cfs mate ex triathlete champ started ucan around 1.week ago.
Its early days but reckons its turbo charged his energy.
He and i both have tried same.protocols over years and its early days but its a big a.breakthrough as anything he tried.
Just got mine will update later.

What´s aakg and uncan?

 

[gregh286]

http://www.generationucan.co.uk/

And.
Arginine ketoglumarate

 

[Wishful]

My belief about why arm activities--or any other infrequently stressed muscle groups--triggers PEM with only a short duration of stress is that it damages muscle cells and thus triggers t-cells, releasing cytokines, which in turn triggers PEM. For a non-arm example, I could ride a bike 6 hrs, with hills and rough gravel roads, without triggering significant PEM, but climbing a ladder a couple of times, which strains the same muscle groups past the limit faced by cycling (and maybe strains some other muscle groups) triggered severe PEM. As I understand it, the latter activity would cause significantly more immune system activation than the hours of cycling. The symptoms caused by PEM seem the same as when triggered by a viral infection, so altogether that's why I think PEM--and other ME/CFS symptoms--are the result of immune system activation rather than ATP deficiency or other metabolic dysfunction. Metabolic dysfunction might play a role in the feedback loop that sustains the disorder, or it might be just a side effect. I expect that a breakthrough in understanding ME/CFS is more likely to come from studying the effect of cytokines than from studying metabolic effects.

 

[Wishful]

I have to clarify my previous post, after thinking about it more. I feel that T-cell activation is important for initial triggering of ME/CFS, and also for triggering PEM (via damaged muscle clean-up squads). I also believe that the mystery serum component that causes mitochondria to malfunction is likely to be a cytokine.

I also believe that something in the mitochondrial function is critical for causing general ME/CFS symptoms. I think kynurenines play a big role in that, and kynurenine production is being increased by the changes in mito function. I personally think that the ratio of peroxynitrite/superoxide is a major factor. Peroxynitrite scavengers such as cinnamon and turmeric make my general symptoms much worse. There were a few other compounds that affect superoxide and peroxynitrite production in the last stages of the electron transport chain that made my symptoms worse. I think that's likely part of the feedback loop that keeps us in the ME/CFS state.

I think a measurement of peroxynitrite/superoxide ratio in the microglia might show something abnormal. Of course, as far as I know, that's really difficult to measure, since it requires sampling of brain tissue and because peroxynitrite has a very short half-life and short range. Maybe some testing with scavengers or blockers (that cross easily into the brain) might show some interesting results. Testing blood for ME/CFS factors might be easy, but it's probably missing some critical factors that are localized in the microglia.

 

[gregh286]

The ucann experiment ended for.my friend.
It helped energy but the.sheer volume needed to boost energy created huge GI issues and constipation.

I used prednisone again at 20mg. Same problem great next day but kickback horrific day after.
The more we suppress the immune the bigger the recoil.
Nightmare!!

 

[gregh286]

My belief about why arm activities--or any other infrequently stressed muscle groups--triggers PEM with only a short duration of stress is that it damages muscle cells and thus triggers t-cells, releasing cytokines, which in turn triggers PEM. For a non-arm example, I could ride a bike 6 hrs, with hills and rough gravel roads, without triggering significant PEM, but climbing a ladder a couple of times, which strains the same muscle groups past the limit faced by cycling (and maybe strains some other muscle groups) triggered severe PEM. As I understand it, the latter activity would cause significantly more immune system activation than the hours of cycling. The symptoms caused by PEM seem the same as when triggered by a viral infection, so altogether that's why I think PEM--and other ME/CFS symptoms--are the result of immune system activation rather than ATP deficiency or other metabolic dysfunction. Metabolic dysfunction might play a role in the feedback loop that sustains the disorder, or it might be just a side effect. I expect that a breakthrough in understanding ME/CFS is more likely to come from studying the effect of cytokines than from studying metabolic effects.

Hi wishful.
Great piece.
Yea i can be shunted into a heavy crash by multiple triggers. Alcohol, sugar, adrenaline surge, gluten, smoke.
So body highly sensitive to many factors.
Its on edge constantly.