How common is muscle weakness in ME/CFS?

[Dysfunkion]

I read up extensively on fasting many years ago. The main proponents of fasting back in the 1970's & 80's were Paul Bragg and Paavo Airola. They both believed fasting had enormous healing potential, but disagreed on how best to do the fasts.

Paavo Airola believe that fasting with fresh organic vegetable and diluted fruit juices, in combination with daily enemas, was ideal. Paul Bragg did not believe in doing enemas, and said water only, or water with lemon juice should be the only thing consumed.

I initially sided with Paul Bragg, and underwent several multi-day fasts. There were a few "high" points of feeling more clear headed, but I never felt a boost in physical energy, and a sense of well being.

I finally "resigned myself" to give the "unnatural" (as Paul Bragg put it) way of doing daily enemas and also drinking fresh juices. It made an enormous difference. I seldom felt as "weighed down" as I did with the water only fasts. They were also for the most part relatively easy to do, because I felt MUCH better while doing them.

These days, I frequently do coffee enemas, and feel it is extremely helpful in keeping my body detoxified. With so many toxins in our environment, it's a constant struggle for our body to keep up. I've come to the point of believing it's dangerous to try to fast these days without doing accompanying detoxifying enemas.

That's my story!

Do you mean fruit or vegetable juices? I can't do fruit unfortunately but I can do vegetables. I'll look into enemas too, probably one of the only things I haven't tried at this point, I would be afraid of doing so and moving around a bunch of toxins though and making myself much worse.

 

[Viala]

If you dig around enough you'll definitely find various subtypes of ME/CFS, i also wish I had more words to describe it besides that it feels like my brain is being rate limited because I've had brief windows before but I often can't tie them to anything specific I did. Some people only have physical PEM, some people are bed/housebound, some people have severe cognitive PEM with physical symptoms (my cluster), and there's no answers because often you'll find something one cluster TENDS to respond well to but you'll always have random people it makes worse or does nothing to. Another trend you'll often find someone will find something that finally works and then one day it just mysteriously stops allowing them to function well. Another interesting thing I see happen often is someone will find something that's working for them and then they'll try something else and then suddenly the previous thing is permanently not doing the same thing or not working at all anymore.

Yeah ME/CFS is one of the most annoying diseases when some things work and then stop working, then start working again and it's different with every person. I have observed this as well with many things that I try. SNPs may play a significant role here, then diet, environment, supplements that replenish one thing and cause other deficiencies, same with some pharmaceuticals. There could be different types of ME/CFS but they all have something in common and fixing that one thing hopefully could be the solution, we only need to find it.

 

[Dysfunkion]

Yeah ME/CFS is one of the most annoying diseases when some things work and then stop working, then start working again and it's different with every person. I have observed this as well with many things that I try. SNPs may play a significant role here, then diet, environment, supplements that replenish one thing and cause other deficiencies, same with some pharmaceuticals. There could be different types of ME/CFS but they all have something in common and fixing that one thing hopefully could be the solution, we only need to find it.

There is definitely something being depleted and a common theme of imbalances causing rapid fluctuations in how the person feels. In my case I think it comes from a chronic infection origin and the dysregulation from it causes rampant depletion of resources and feedback loops (like the explanation from the person behind that mecfs- a new hope document based on a viral explanation).

My recent worsening was a chain reaction from going to a concert, the interesting thing is the worst of it hit a few days after the show and then my flu like symptoms, brain fog, and ear pressure ramped up. So my thoughts are that the high volumes of sound pressure hitting the dormant infection caused a reactivation. I have another at the end of the month and got decent ear plugs so I'm gonna see if taking the pressure of them solves the issue after one. If it does im sure that's what is happening and then reactivation cascade causes the accelerated imbalance and depletion cycles possibly.

 

[Wayne]

Do you mean fruit or vegetable juices? I can't do fruit unfortunately but I can do vegetables. I'll look into enemas too, probably one of the only things I haven't tried at this point, I would be afraid of doing so and moving around a bunch of toxins though and making myself much worse.

You can do either vegetable or fruit juices, or both. I like to use organic juice powders which are very easy to make as compared to making my own juices. There's really a lot of flexibility when it comes to fasting and detoxifying. I prefer coffee enemas to which I add 3-6 grams of sodium ascorbate, 1 gram of NAC, 1/8 tsp of charcoal, and various other things, like amino acids, methylene blue, and probiotics.

I honestly believe that if people had done this kind of protocol during the COVID pandemic, that a very large percentage that died would have survived. I also believe that if more people with ME/CFS tried this kind of protocol, that they would likely experience benefits similar to what I've experienced. Notably, I ALWAYS feel better and have better energy after doing an enema. I should mention that I do a variety of energy balancing techniques at the same time, so I believe my benefits are a combination of both.

 

[Viala]

There is definitely something being depleted and a common theme of imbalances causing rapid fluctuations in how the person feels. In my case I think it comes from a chronic infection origin and the dysregulation from it causes rampant depletion of resources and feedback loops (like the explanation from the person behind that mecfs- a new hope document based on a viral explanation).

My recent worsening was a chain reaction from going to a concert, the interesting thing is the worst of it hit a few days after the show and then my flu like symptoms, brain fog, and ear pressure ramped up. So my thoughts are that the high volumes of sound pressure hitting the dormant infection caused a reactivation. I have another at the end of the month and got decent ear plugs so I'm gonna see if taking the pressure of them solves the issue after one. If it does im sure that's what is happening and then reactivation cascade causes the accelerated imbalance and depletion cycles possibly.

I think we're depleted in a lot of things and most of the population is way below under the optimal health baseline. We're just adjusted to it and gaslighted that that's our nature, but it is not normal that people after 30 start to lose energy. We're also constantly overstimulated and people with ME/CFS got it the worst.

A concert PEM can be loud music but also crowds, excitement, all of it saps the energy, then when we're tired it is easier to get an infection. What was first though, an infection, a toxicity or low energy caused by nutrient depletion.

 

[Zebra]

Gentle reminder folks:

@ChookityPop is seeking responses about muscle weakness

 

[Violeta]

My worst symptom is SEVERE muscle weakness or premature muscle fatigue.

Is muscle weakness and or premature muscle weakness common in ME/CFS?

Or is it common in SEVERE patients?


I am confused as muscle weakness/premature muscle weakness is by far my worst symptom and I have the impression that when I try to find similar patients like me on this forum or elsewhere I very rarely find them... I have severe myositis like full body weakness which seems to be progressive. Muscle biopsy shows I have moderate myopathic changes, positive for CN1a autoantibody which is something like 40-80% specific for inclusion body myositis but all MRIs, EMG, NCS etc is normal. I still fear I have IBM though but I will probably not get the diagnosis even though my muscle biopsy shows myopathy.

I have dysphagia which make me unable to swallow solid foods at times. Cant chew semi hard foods as my jaw muscles will strain... Cant have subtitles on the TV as reading them will severely strain my eyes.. The list goes on.

Polymyositis involves manganese toxicity, for some reason.

https://pubmed.ncbi.nlm.nih.gov/8628497/

Manganese superoxide dismutase (Mn SOD) levels in the serum can be a useful clinical marker for polymyositis (PM). In a study of patients with PM, dermatomyositis (DM), muscular dystrophy, amyotrophic lateral sclerosis, and collagen vascular diseases (CVD), only patients with PM and CVD had elevated Mn SOD levels. The increase in Mn SOD levels in patients with PM was more prominent than in those with CVD. The change in Mn SOD levels in patients with PM also correlated closely with disease activity.

And have you ever had Lyme disease?

AI Overview

The bacteria that causes Lyme disease, Borrelia burgdorferi, has a unique ability to use manganese instead of iron to make an essential enzyme, which allows it to evade the body's immune system:

• Manganese use
  Borrelia burgdorferi has a strong capacity to accumulate high levels of manganese, which it uses to activate the superoxide dismutase (SodA) enzyme. This enzyme is essential for the bacteria's virulence.
  
  
  The Lyme bacteria can be eradicated but then leave behind manganese in the tissue.

Lyme myositis​

https://pubmed.ncbi.nlm.nih.gov/16871548/

 

[Viala]

@Zebra You can also join the conversation and add something valuable from yourself, just like we did a few posts earlier.

Do people with ME/CFS and muscle weakness have more problems with the latter during PEM, what triggers it? That would be the next natural question and a potential important insight of common pathology. There's no point in rigidly regulating a discussion since all of it is connected and we still don't know what causes these things.