A 50,000 Foot Overview of Major ME/CFS Theories

[alex3619]

Warren Tate, New Zealand, rewriting of the epigenetic code is being looked at as a cause. That is many of the genes are switched off or on by methylation of cytosine in particular. The first study suggests patients are undermethylated.

 

[sam.d]

Thanks for the overview @Jesse2233 .
I've just this week realized I've probably been having ME/CFS for 20+ years and I am looking to learn everything there is to know about it. Is there a go to resource on the web that gathers all these theories and stays up to date with new research and treatment avenues?

 

[sue la-la]

superb topic

i remember a list of criteria for ME causation theories ... does anyone have a link ?

eg the causation theory needs to take into account - the epidemics and the sporadic cases - the gradual onset and sudden onset - the different pathogens involved - how it links with over-training syndrome and sepsis - etc.

 

[Insomniac]

CFIDS Foundation theory is that it is caused by low dose radiation. Can't remember if it is alphas or betas.

 

[enginewitty]

I haven't heard this one yet so I'll list it as a possibility as its outside of what we consider our species' normal range of cognition. but maybe the reason nobody seems to be able to definitively comprehend a physically cause is because we can't perceive it... maybe it's something outside the frequency range of what our 5 senses can perceive.

as Tesla said, "if you want to know the secrets of the universe..."

maybe I'll post a new thread as this is more philosophical but,
does anyone have any idea of why nothing seems to have any effect? maybe some of us have found some relief in specific things, but for the most part it appears to me that this disease is a complete mystery despite the amount of active involvement toward curing it/figuring it out by most of us.
a cure has definitely not be found for a lack of us trying.
does anybody have an idea to why nothing seems to make any significant change in how we feel??
this seems beyond any sense of what should be considered a resilient disease; it's just bizarre.

 

[alex3619]

does anyone have any idea of why nothing seems to have any effect?

Any theory with a homeostatic basis might explain this. As you push the set point for homeostasis pushes back. However it might be more a strange attractor than typical homeostasis, that is interactions of the disease chemistry keep driving that chemistry to a small range.

 

[Learner1]

does anyone have any idea of why nothing seems to have any effect? maybe some of us have found some relief in specific things, but for the most part it appears to me that this disease is a complete mystery despite the amount of active involvement toward curing it/figuring it out by most of us.
a cure has definitely not be found for a lack of us trying.

does anybody have an idea to why nothing seems to make any significant change in how we feel??

this seems beyond any sense of what should be considered a resilient disease; it's just bizarre.

I'm not sure I agree that nothing helps... I'm a lot better than I was 2 1/2 years ago, as measured by ability to exercise and complete physical and mental tasks, reduced PEM, improved cognitive function/reduced brain fog, etc. I am not cured, and the treatment I've undergone has been significant and costly, but it has helped a great deal.

There's no magic bullet yet, and I doubt there ever will be. This disease is a complex, multiorgan system disease, where the immune, nervous, endocrine, cardiovascular systems, etc. are affected. It is triggered by a number of causes, creating a cascade of adverse events, which lead us to be stuck in this trap, and there is collateral damage along the way that must be cleaned up. No two of us are alike, so though we may be in the same state, we may have different things that need fixing along with breaking us out of the trap.

Things that have dramatically helped me, prescribed for many of the things on the lists above, are:

Methylating nutrients and glutathione
Valcyte
BCAAs and other amino acids
IVIG
Adrenal, thyroid, and sex hormones
NAD+
Phospholipids
HBOT
PolyMVA

 

[enginewitty]

I'm not sure I agree that nothing helps... I'm a lot better than I was 2 1/2 years ago, as measured by ability to exercise and complete physical and mental tasks, reduced PEM, improved cognitive function/reduced brain fog, etc. I am not cured, and the treatment I've undergone has been significant and costly, but it has helped a great deal.

There's no magic bullet yet, and I doubt there ever will be. This disease is a complex, multiorgan system disease, where the immune, nervous, endocrine, cardiovascular systems, etc. are affected. It is triggered by a number of causes, creating a cascade of adverse events, which lead us to be stuck in this trap, and there is collateral damage along the way that must be cleaned up. No two of us are alike, so though we may be in the same state, we may have different things that need fixing along with breaking us out of the trap.

Things that have dramatically helped me, prescribed for many of the things on the lists above, are:

Methylating nutrients and glutathione
Valcyte
BCAAs and other amino acids
IVIG
Adrenal, thyroid, and sex hormones
NAD+
Phospholipids
HBOT
PolyMVA

Thank you so much for sharing this!!

are you regularly taking all of these?

 

[Desertstorm]

Just someone find a magic pill or injection please. The science, the theories, fact that nothing is in common it seems...it all leaves me more exhausted than the shit in my core, than what has infiltrated every cell of my being . Wake me up when it is over please. It’s all above my pay grade. Patient heal thy self ain’t working world. I still have mountains to climb and places to visit. So those charged with finding the cause and thus the cure must get their shit together. I don’t even know who to donate my body to for post mortum research.Any takers?

 

[Stretched]

@Desertstorm You might try the book ‘How to be Sick’ by Toni Bernhard, a PWME ex law professor. It’s a real look at dealing with this malaise along with plenty of insights related to your musings.

 

[Desertstorm]

Will do. Thanks.

 

[YippeeKi YOW !!]

it's also worth mentioning their fecal microbiome collaborator who end up in some of their studies, Dr Butt. The poop specialist! Not a joke, that's his real name.)

... sometimes life's sense of humor is just Dali-esque. This is toooooo good

 

[Desertstorm]

I have a Dr Pepper in my team.

 

[YippeeKi YOW !!]

I have a Dr Pepper in my team.

@Desertstorm
.....and a Dr Upper? Dr Booster? Dr Healwell? Dr Mendall? Dr Cheery? Dr Upandatem?

Sorry. I just sometimes need plain silly to cut thru my moody.

I seem to mostly have Dr. Heresyourbill, Dr U.R. Nutz, Dr M.E. Nosuchthing