What is your personal theory or understanding of ME/CFS?

notmyself

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As quite a few others have mentioned, I don't believe we are dealing with a singular disease here. There is simply too much diversity in our symptoms among us. Obviously, punishing crushing fatigue is one of the common denominators, but aside from that there is just too much diversity among all of us. When someone here recently posted that consumption of alcohol gave them energy, I knew that I have really nothing disease-wise in common with that person. Alcohol kills me. It's bottled poison for me, exacerbating all my ailments. Drinking wine, after a few hours time, makes me nearly comatose. Not something I aspire to.
I don't even subscribe to the subgroup theory, where we really all have the same disease, but just different varieties of the same thing. I think many of us have completely unrelated disorders, from a physiological perspective. It's been said of cancer, that cancer is not a disease, it is 30 different diseases. I think the same holds true for CFS. We are dealing with multiple pathologies here, multiple diseases here.
i think most of us know this allready.many are probably scared of this reality and are in denial because this mean little hope for efective treatment in the future that will work for everybody. PS : alcohol make my symptoms better, i had drunk 14 beers one night ,suferring just hungover the next day.. so while we probably have fatigue,brain fog, muscle problems etc.in common ,just like you i doubt we have the same disease..it just doesn t fit, and many others things don't fit..the same disease thing is a loose end
 
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JES

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PS : alcohol make my symptoms better, i had drunk 14 beers one night ,suferring just hungover the next day.. so while we probably have fatigue,brain fog, muscle problems etc.in common ,just like you i doubt we have the same disease..it just doesn t fit, and many others things don't fit..the same disease thing is a loose end
Same, I notice a temporary improvement the next day after drinking a minimum of about 6 portions of alcohol. But the day after that I'm back to baseline. Pretty much similar as the temporary improvement I get from a cold/flu or sleep deprivation. It's a shame none of these three "treatments" are sustainable in long term.
 

unto

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you're right Jesse often the sick know more than many doctors ......., however their thoughts are distorted by an insurmountable conflict of interest, that of not accepting the fact of being able to have an infectious disease ....

I after 32 years of ME / cfs I am convinced that the cause is an unknown virus / retrovirus, which remains active forever, ie a patient with ME can transmit the disease even after 20/30/40 years from the beginning.

The history of ME, with more than sixty episodes of reported epidemics, testifies to the infectious nature of the disease; besides the innumerable family realities where there are more cases of patients with ME or cfs or other similar illnesses.

it seems that there are no more epidemics, but actually we live in a timeless and space-free epidemic, ie there are new infections every day all over the world ......

ME is a smart disease, it appears and disappears, it seems to be of organic origin and then it seems it is all in the heads of the sick; sometimes serious sometimes mild sometimes it seems that it does not exist ....
if to all this we unite the proverbial skepticism / blindness of the medical class in the face of new diseases together with the interest of governments and health insurers not to compensate the patients and to the intuition of the patients, diverted from the conflict of interest that I said at the beginning we will have a "perfect storm" a total confusion
 

andyguitar

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@notmyself askes if I think antidepressants can cause CFS. Sure I do. I have looked at studies done into the effect of them on rodents. There was something like a 60% or 40% reduction in locomotor activity and reward seeking behavior in those that were treated with the equivalent of a human dose. Of course you cant ask an animal why it has changed it's behaviour. I found the reduction in reward seeking behaviour particularly interesting. Was it no energy or did it forget how to get the treat on offer if it pressed the lever? @jstash askes about citation. Do you mean what ME/CFS reasearch I looked at? If so i can tell you thet when looking into all this I decided to look at scientific papers that, almost without exception, did not mention ME/CFS. My theory to begin with was that the truth about ME/CFS was already 'out there' it just had'nt been applied. The report in the BMJ into the outbreak at the Royal Free Hospital in the 1950s was very interesting. Read it. Obvious it was not a virus or bacteria. Specific question about this are welcome but as most have limited capacity best keep it simple as my answers will be.
 

notmyself

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@notmyself askes if I think antidepressants can cause CFS. Sure I do. I have looked at studies done into the effect of them on rodents. There was something like a 60% or 40% reduction in locomotor activity and reward seeking behavior in those that were treated with the equivalent of a human dose. Of course you cant ask an animal why it has changed it's behaviour. I found the reduction in reward seeking behaviour particularly interesting. Was it no energy or did it forget how to get the treat on offer if it pressed the lever? @jstash askes about citation. Do you mean what ME/CFS reasearch I looked at? If so i can tell you thet when looking into all this I decided to look at scientific papers that, almost without exception, did not mention ME/CFS. My theory to begin with was that the truth about ME/CFS was already 'out there' it just had'nt been applied. The report in the BMJ into the outbreak at the Royal Free Hospital in the 1950s was very interesting. Read it. Obvious it was not a virus or bacteria. Specific question about this are welcome but as most have limited capacity best keep it simple as my answers will be.
my symptoms start after i stopped taking mirtazepine..shortly after i get some cold..nothing extraordinary but still..it was like a 5 weeks cold ,not very severe but still something strange...it s either the mirtazepine that cause all this or that cold...i'm tempting to go with mirtazepine, beause that cold wasn t debilating , i was still able to work, ..i think was the mirtazepine that ruined my life..funny things is that since i developed this symptoms i don t have anxiety or depression anymore..i obviously get sad and worried about all this but nothing like full blown anxiety disorder or major depression.in my good days with less dizziness,weakness, muscle pain and all the other bulshit,i'm acutally very happy and relaxed..
 

Wishful

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crowquill, no I have no direct way to test peroxynitrite levels. I think it would be extremely difficult even for the most advanced labs. It has such a short lifespan and limited range that you'd really need to measure it inside cells in the brain. What I can do is try drugs or other compounds that affect peroxynitrite levels. Scavengers such as cinnamon and resveratol make me feel much worse. I'd like to find something that boosts peroxynitrite levels in the microglial cells, or at least something that doesn't have other significant effects, such as also acting as an antioxidant. I think I'm unlikely to find anything like that; there's just not enough research in that area regarding effects, ability to cross the BBB, and so forth.

Yes, there's plenty of research showing links between IDO, kynurenines, and the immune system. Before I realized that what I had was ME, I thought it was some really rare chronic neuroinflammation involving IDO, kynurenines, and the mitochondria. Well, the mitochondria affect IDO function and kynurenine production, so they're obviously linked. I'd certainly like to try a kynurenine modulator, such as 1-MT, just to see what effect it has.
 

Wishful

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The history of ME, with more than sixty episodes of reported epidemics, testifies to the infectious nature of the disease; besides the innumerable family realities where there are more cases of patients with ME or cfs or other similar illnesses.
No, it doesn't really testify to infectious nature. ME is very often triggered by infections, but an epidemic of ME could be a specific virus that is exceptionally good at triggering ME, or a shared environmental factor (toxin, stress, infection that doesn't trigger ME but does make triggering more likely). For example, if the epidemic was in a hospital, the victims might all have eaten in the cafeteria, getting bad bacteria that causes leaky gut syndrome, making them susceptible to a virus that other people got without triggering ME. In a town, maybe the common factor would be bacteria in the water supply, or fungal spores in the air.

As far as I can see, no one has shown any solid evidence that ME/CFS is contagious, and that includes the claimed epidemics. Is there any evidence of antivirals curing ME/CFS patients? The lack of cures doesn't prove anything, but does count as negative support for the hypothesis.
 

Hip

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ME comes from a rare species of fungi. Way it effects people similar to Ergot poisioning.
A rare fungus that trips you out like LSD is the cause of ME/CFS you say?!!! Is this idea connected to any research, or did you come up with it yourself? Please explain.



Out of those who actually have CFS, most become ill as a result of an adverse drug reaction.
I have not come across any research showing CFS comes from adverse drug reactions. Where did you read this?



I totally reject the "it's a virus" theory.
So how then do you explain the fact that ME/CFS appears as a sequelae in 9% of cases of glandular fever / mononucleosis?



The report in the BMJ into the outbreak at the Royal Free Hospital in the 1950s was very interesting. Read it. Obvious it was not a virus or bacteria.
Presumably you believe that all the Royal Free outbreak and the numerous other ME outbreaks around the world are due to a cloud of these LSD-like fungi descending on a building or area, or something on those lines?
 
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halcyon

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As far as I can see, no one has shown any solid evidence that ME/CFS is contagious, and that includes the claimed epidemics.
ME is not contagious in the way that poliomyelitis is not contagious. They're rare complications of usually trivial infections. The complication is not contagious, but the triggering infection can be. Have you read the various epidemic reports? There is usually good evidence of the infectious nature of the disease in patients through signs and symptoms of infection. The disease could be transmitted to animals via exposure to blood in several of the outbreaks.

Is there any evidence of antivirals curing ME/CFS patients?
Most of the antiviral drugs on the market don't cure their associated disease. This doesn't prove anything. There are several interesting trials showing interferon can put patients into remission.
 

lansbergen

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ME is not contagious in the way that poliomyelitis is not contagious. They're rare complications of usually trivial infections. The complication is not contagious, but the triggering infection can be.
The difference between a disease and the infectious agent.
 

wastwater

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I’m interested in interferon I know they use it in MS but I always assumed I had too much interferon so I don’t know how even more would help
 
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Hii,

I think it's something related to a virus or group of viruses that cause certain symptoms, so CFS might not be an illness per se it might be a group of symptoms caused by some viruses to some people, I think that's why it's so hard to find a cure, because it's hard to determine who will get it or not.

Some systems(bodies) can handle certain things, some just doesn't, so I think that's our problem, I think this is not different than acne or any other chronic persistant infection, I think wether you will get better or not just depends on luck and there's nothing to do about it but to treat symptoms and try a lifestyle that best accomodate to our problem.
 

Wishful

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ME/CFS is a protective mechanism. We go into this state to preserve us.
Yah, but we're still waiting for the aliens to attack us with bioweapons that ME would protect us from.

Alternatively, it could be protecting us from a nasty microbe that attacked our distant ancestors. Maybe so distant that they only had a few dozen cells at that time. The attacker might be billions of years gone...but we're safe from it! Umm, okay, maybe everyone else is safe from it too now.

Protective mechanism or not, it's now a problem for us.
 

Wishful

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I've been thinking more about the 'chronic infection' vs 'cellular dysfunction that can change abruptly' issue. The argument is a matter of relative complexity. The cellular dysfunction hypothesis is fairly simple. The chronic infection hypothesis requires more factors: there still has to be some sort of as-yet undetermined cellular process involved to cause the symptoms and have them change abruptly, and there needs to be an explanation for why the infectious agent isn't found in all ME patients, and there needs to be an explanation for why the treatments that do work for some people and don't work for others affect the mysterious virus' effects. Those explanations aren't impossible, but combining them makes the probability very much lower than for a simpler hypothesis.

I do think it's likely that there's a set of genetic or, more likely, epigenetic variations that makes us susceptible to entering this abnormal state. Maybe we produce a little more or less than average of some protein, or more or fewer microtubules in the mitochondrial membrane, or some such things. These differences from average don't do anything by themselves, but the imbalances work together in a way that causes major dysfunction when triggered by immune activation, and then works to maintain that abnormal state.

The way I would approach researching ME is to get some patients with reliable before/after effects and see what changes they have in common (preferably testing CSF rather than blood). It might be a slight increase in IL-x, _and_ a slight decrease in sphingolipids _and_ a slight sensitivity to lactic acid, or some such combination of minor variations.
 

cmt12

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From
-a practical perspective: It is a constant signal from the nervous system which forces widespread imbalance among all systems of the body

-an evolutionary perspective: It is the surfacing, or overflow, of the epigenetically inherited ‘freeze’ responses which have helped our ancestors survive since the beginning of complex life forms (since the beginning of nervous systems)

-a psychological perspective: It is repressed (mostly inherited) trauma that has become at least partially un-repressed due to the accumulation of stressors (virus, exertion, etc)

-a mythological perspective: It is the invasion of chaos into our structures of order, calling us to engage in the Hero’s Journey.

-a Christian perspective: It is the imperfection (sin) that beckons us toward the moral struggle of sacrifice, responsibility, and truth in order to ascend toward salvation

-a spiritual perspective: It is the suffering whose purpose is to awaken and motivate Consciousness toward expansion and wholeness
 

Gingergrrl

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mythological perspective: It is the invasion of chaos into our structures of order, calling us to engage in the Hero’s Journey.
WTF is the "Hero's Journey"? This was mentioned to me by someone recently in another context (not about illness) and I am trying to understand what it means to this person?