When can we expect a cure?

[Belbyr]

Once they figure out what 'something in the serum' is, I would say 3-5 years after that... but it could be something simple.

 

[percyval577]

What do you mean by this part:
(I was also fine enough for two years in between):

I got ill 2001, and after I had overcome EBV and was not too bad I got worse again over the next years, due to food (I didn´t look at that). Since 2004 I got slowly better, due to change of food (again by accident) but only after having stopped drinking tea (rich on manganese) and picked up coffee instead in 2007/8 I reached an alomst healthy state in 2009 (by accident again). 2010 I detoriated due to nutrition (once more by accident). Only 2015 I got aware of the dependence to intake of mangase.

So I wanted to say that I am confident to recover, because I had almost recovered in 2009/10. Here only uncomfortable legpain stayed, all other symptoms had gone (or had almost gone).

Now I am coming from a very bad state of feeling bad, but I am confident. Nonetheless the improvement was very difficult, not easy to grasp for doctors and anybody else. I couldn´t work anymore, while I slowly lost my pain and can sleep well right since 2015. Only the last 10 months while being on the forum I slowly discovered the other metals, thanksfully.


(@Wishful @debored13 )
In my opinion it must be a software problem. Some ppl feel better when they have an infection (often reported from a flu if I see rightly). True as well that one might also feel worse from an infection, I just had a jaw inflammation and after treatment I am better. But I was also good for half a day when I finally eliminated candida albicans in my mouth. Half a day, what a nonsense behaviour, what is the body doing?

I also think that the delayed appearance of worsening after exertion - on a quite regular basis - would only allow for an interpretation of some information processing. I am not an expert but I think this would not be thinkable from a response to any pathogen on a regular basis. I think it´s a feeling-ill, but it differs from any "normal" ill-feeling.

Finally there are the wide diversity of symptoms, and it looks difficult to grasp the common thing of the illness. What does it indicate, as the common thing is more and more recogniced to be this PEM, this strange worsening aftzer exertion, limiting one´s ability to act profoundly. In my opinion the only place in the body which could induce this wide spread diversitiy are basal ganglia and thalamus. In so far I don´t think that there is a riddle.

A riddle will be, I think, by which software exactly basal ganglia and thalamus were out of proper function. I am afraid that the possibilites of changes are not known well enough. What would chemicals or pathogenes change, probably on a two hit "event"? I think the known pathogenes are not important as a normal infection, here they would occure in ppl without cfs, which is indeed well recognized.
So I think the question must be: What can be a trigger, and what (different) properties do triggers have that they can change which (different) pathways? Pathways which do affect the infomation processing in basal ganglia and/or thalamus.

 

[Wishful]

I also think that the delayed appearance of worsening after exertion - on a quite regular basis - would only allow for an interpretation of some information processing.

Hardly the only interpretation. My interpretation--from before I knew about ME--was that physical exertion caused an increase in IFN-g 24 hrs after the exertion, which triggered the increase in symptoms. Now I know that PEM is far more complicated, with some people having shorter delays, and that it can be triggered by cerebral exertion (which shouldn't cause an increase in IFN-g). There could be multiple chemical pathways invovled in PEM. I don't see 'information processing' as a very likely explanation. Chemical interference with neural function or gland function is reasonable, but I'd call that a hardware problem rather than software.

 

[frozenborderline]

In my opinion it must be a software problem.

Nope. And also, there really is no such thing as “software “ in the body, unless you want to get all Cartesian.

 

[percyval577]

@debored13
I mean a dysregulation of pathways which do not induce any serious damage.
A dysregualtion lasting by itself, not due to any other thing which shouldn´t be there.

@Wishful
I agree that the immunesystem is utterly complex, but why would the immunesystem strictly iterate a behaviour?
Given the huge and different possibilites of fights that take place it seems to me unlikely that there a pattern will show up.

EG. When the Cvernobyl reactor had exploded the ppl flewing around it in the helicopter all died within six years, only one was healthy even 15 year later. "Yes, it was a riddle. But finally I remembered that I had been in a nuclear power station just three months before, there my DNA repair must have gotten adapted to huge impacts of radioactivity." I think systems which deal with such impacts will not show patterns which may turn into PEM, even if they may adapt things the being does on a regular, daily basis, it´s too unpredictable.

But the nerves do need to compare old and new experiences on a daily basis, the whole live long. Otherwise the being will die because of being unable to fit into its enviroment.

 

[Wishful]

I agree that the immunesystem is utterly complex, but why would the immunesystem strictly iterate a behaviour?

If you mean why would it adapt to keep itself in that state, there are several possibilities. One theory is that the immune system is chaotic, with parts of it always shifting somewhat, and occasionally switching between different stable states. It's possible for it to get stuck in one of those states.

Another possibility is a feedback loop: maybe cytokine x causes an increase in protein y, which decreases production of protein z, which causes an increase in cytokine x. The various levels should return to normal after the trigger is gone, but something in our bodies changed so that the gain factor in the feedback loop became positive, locking it into that state.

Another possibility is that ME involves some physiological response that aids survival in certain circumstances (ex: sickness behaviour). Our bodies might have evolved that response, including adaptive behaviour to keep us in that state until it's safe to return to normal. Something that complex can certainly develop flaws, causing it to be a problem.

I'm not sure whether any of these three options applies to ME, but I have no difficulty accepting that such a complex system can develop flaws that can lock it into an abnormal state.

 

[percyval577]

Yes, @Wishful, all good points,

but I meant the delayed PEM.

 

[Wishful]

I ascribe my physically-induced PEM (consistent 24-hr delay) to IFN-g. My cerebrally-induced PEM has an inconsistent delay of less than an hour to a few hours. I have no guesses for what chemical pathways are involved, but I expect it's straightforward overproduction or underproduction of something, or maybe over/under transportation of something.

 

[suevu]

can be made to happen with more aggressive protest actions.

Unfortunately I'm 100% with you, society only understands aggressive stuff.

I have even proposed donating blood to 'spread the disease' (can't be spread but would create a big concern) as a protest, I know it might sound selfish and cruel, but it's even more selfish an cruel so many of us being sick and some of us VERY sick and being absolutely ignored by society and giving money to many other much less important if not completely banal causes... No war is won by letting an empty shoe at your enemy doorstep... We must make our voices heard loud and use all the weapons we can imagine.

Fear is the most powerful thing we have, and if many people could see severe patients donating blood that could end infecting others I'm sure it would be all over the news and people wanting to know what the heck is going on with these sick folks and why do doctors say they are healthy when they are obviously sick and could pass it on to me...

Actions like this or more aggressive are the only way out of this nightmare, noting that I have improved so much and I can live more or less a normal life now, but I know how it feels to be SEVERE, and it's simply so cruel to let people rot like that, that the whole society is responsible for this low heat genocide.

 

[suevu]

I read that cerebral mtDNA is slightly different from DNA elsewhere in the body, which could explain why some people can have cerebral ME symptoms without symptoms in the rest of their body.

My first symptom was only neurological (brain fog and anxiety) after many antibiotics, then doctors told me to do a lot of exercice to get rid of it, and it actually got me into CFS...

But fatigue took almost a year to set on me after first symptoms, doctors caused my disease.

 

[Wishful]

Well, the doctors didn't knowingly cause your disease. The cause of ME might be damaged DNA, or normal DNA in a pattern that makes us susceptible to switching into this abnormal state. The doctor who gave me the tetanus booster may have unknowingly triggered my ME, but I think the cause (susceptibility) was there already.

Once the researchers figure out what causes ME, maybe they can come up with a test for susceptibility to develop it, and warn people about what to avoid.

 

[suevu]

Well, the doctors didn't knowingly cause your disease. The cause of ME might be damaged DNA, or normal DNA in a pattern that makes us susceptible to switching into this abnormal state. The doctor who gave me the tetanus booster may have unknowingly triggered my ME, but I think the cause (susceptibility) was there already.

Once the researchers figure out what causes ME, maybe they can come up with a test for susceptibility to develop it, and warn people about what to avoid.

Their obbligation is knowing the dangers of antibiotics and warning for giving them, and even worse in cases like mine when they have been giving me wrong antibiotics for years for the wrong pathogen thats why they never worked and had to give them again to me.

In a decent country there would be SEVERE penalties for these people, from jail to death penalty. I'm no joking, they ruined my life for years and whats worse they are so mean that they don't even acknowledge their errors.