There will never be a cure.

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Hopeful1976

Senior Member
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346
I've come to the conclusion that this is it for me. There will never be a cure. Never a treatement. Just endless requests for money and endless research pieces that help in no way - never an end, never a cure, never a treatment. I've had enough of m.e. after all these years of suffering, I cannot believe that something significant hasn't been found. It's all so wrong. How can they cure so much, but not us, not even know what it is that ails us so significantly. I'm sick of my world.
 
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Wishful

Senior Member
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Alberta
Hopeful1976 said:
after all these years of suffering, I cannot believe that something significant hasn't been found.
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The body is incredibly complex, with very many interactions. Also, some aspects of the body are difficult to measure; the chemical make-up of interstitial fluid in different regions of a functioning brain, for example, or the properties within a single mitochondria over time. Those aren't the sorts of things that researchers would have had any funding for in past decades. I don't expect funding for such things until some of the easier-to-do research findings point to a need for the harder-to-do stuff. I'm not surprised that no one has found anything really significant yet.

I believe that the core dysfunction causing ME is located in the brain. To me, the studies of blood and body tissue are looking at symptoms fairly far downstream of the core dysfunction. The studies might find a treatment for a symptom for a subgroup, but that won't cure ME.

I am a bit concerned that the OMF and other organizations might be falling prey to a common problem: the focus is on raising money to raise more money, rather than actually trying to find an answer. After all, if a treatment or cure is found, all those administrative/financial types will have to find some other cause to earn their salaries and bonuses. :meh:
 
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Wishful

Senior Member
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Alberta
BTW ME can cause chemically-induced suicidal moods, so be aware of that. Tryptophan, niacin, and B12 all triggered fairly strong suicidal moods in me, and nearly drove me to suicide. Realizing that it was artificially induced helped me cope with it, and avoid further incidents.
 
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Hipsman

Hipsman

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I saw that your last visited thread is about assisted death. That particular thread gave me difficult emotions to handle even thou I didn't have any suicidal thoughts for long time, I can't imagine reading that while being very low. Please try to stay positive, I have proposed that there must be some positive change for ME patents due to Covid research, maybe it will be of some help to you...
 
Hip

Hip

Senior Member
Messages
18,177
Hopeful1976 said:
I've come to the conclusion that this is it for me. There will never be a cure. Never a treatement.
Click to expand...

Have you tried any of the treatments which can often substantially help ME/CFS, patients, such as these:

B12 methylcobalamin injections (or transdermal B12 oils)
Methylation protocol
Low-dose naltrexone
Oxymatrine (antiviral immunomodulator)
Inosine (add-on antival immunomodulator with oxymatrine)
Epivir (for enterovirus ME/CFS)
Valcyte (for EBV, HHV-6 or cytomegalovirus ME/CFS)
Valtrex or Famvir (for EBV ME/CFS)
GcMAF as transdermal cream, capsules or injections (immunomodulator)
Tenofovir (antiviral immunomodulator)

Ampligen (antiviral immunomodulator, but hard to get and expensive)
IVIG (expensive)
Interferon beta (antiviral immunomodulator, expensive and benefits usually do not last)

Piracetam (good supplement for brain fog)
Nimodipine (good drug for brain fog and brain blood flow)
Methylphenidate (stimulant drug for brain fog and fatigue)
Modafinil (stimulant drug for brain fog)

Pyridostigmine (reduces or eliminates PEM)
D-ribose (to speed up PEM recovery)
Dichloroacetate (improves fatigue and brain fog)
Probiotics and prebiotics (if there are gut issues)
Rifaximin (for IBS or gut dysbiosis)

These treatments have a track record of helping ME/CFS, and are used by various ME/CFS doctors, or have been shown effective in studies.

You'd be lucky to find a full cure with these (though it sometimes happens). But it's quite feasible one of these treatments might move you up by one level on the 3-level scale of ME/CFS scale of: mild, moderate and severe.

See also the recoveries/improvements list here.
 
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Hopeful1976

Senior Member
Messages
346
Hipsman said:
I saw that your last visited thread is about assisted death. That particular thread gave me difficult emotions to handle even thou I didn't have any suicidal thoughts for long time, I can't imagine reading that while being very low. Please try to stay positive, I have proposed that there must be some positive change for ME patents due to Covid research, maybe it will be of some help to you...
Click to expand...
It wasn't?
 
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Hopeful1976

Senior Member
Messages
346
I'd actually like to be deleted from this group now. I'm not suicidal, just utterly and thoroughly pissed off with m.e and nothing ever being done. All I ever hear is money needed, donate ect ect. I'm under no illusions of a cure. It will never come. Delete my account admin please.
 
percyval577

percyval577

nucleus caudatus et al
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1,311
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Ik waak up
Hopeful1976 said:
I've come to the conclusion that this is it for me. There will never be a cure. Never a treatement. Just endless requests for money and endless research pieces that help in no way - never an end, never a cure, never a treatment. I've had enough of m.e. after all these years of suffering, I cannot believe that something significant hasn't been found. It's all so wrong. How can they cure so much, but not us, not even know what it is that ails us so significantly. I'm sick of my world.
Click to expand...
I think I have found a cure at lest for my CFS, its complex though. I agree somehow, this will not be found out by any researcher in the next 20 years.

I just posted a thread after having been here: preliminary-result-of-furthered-improvement-obviously-leading-to-health. The concrete intervention (in its last form) is still missing.

Wishful said:
The body is incredibly complex, ...
Click to expand...
I agree, as can be seen in the thread just mentioned.
 
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pamojja

Senior Member
Messages
2,509
Location
Austria
Hopeful1976 said:
Just endless requests for money and endless research pieces that help in no way - never an end, never a cure, never a treatment. I've had enough of m.e. after all these years of suffering, I cannot believe that something significant hasn't been found. It's all so wrong. How can they cure so much, but not us, not even know what it is that ails us so significantly. I'm sick of my world.
Click to expand...

That's the impression one gets if not affected by the major killing diseases. Modern medicine is really good at fixing acute problems. But ask anyone with a chronic disease, like cancer or CVD? - Despite billions of funding and decades of 'war' on cancer, the 'cures' are all mediocre, at best.

percyval577 said:
I think I have found a cure at lest for my CFS, its complex though.
Click to expand...

Me too found improvement is actually possible with alternative means and CVD in my case. But for that I didn't hoped for for in mainstream medicine. Which I only used to assist it with laboratory-monitoring.
 
percyval577

percyval577

nucleus caudatus et al
Messages
1,311
Location
Ik waak up
pamojja said:
But for that I didn't hoped for for in mainstream medicine.
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Completely agree. I thought, this disease is not degenerative, symptoms are non-specific, there must be a way to reverse whatever has happened.

But interestingly, I gave up on that when I had got ill and didn´t recover. This was in 2002. I thought, its too complex and too less is known. Maybe I was right. But I wonder now if I could have found out nevertheless.
 
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lenora

Senior Member
Messages
5,035
Hello Hopeful1976.....It was sad to read your story. You are close in age to my children, 49 and 45. Too young to be thinking there will never be a cure.

I've had ME since I was in my early 40's. I'm now 73 yrs. old, a woman, and I was very involved in trying to find the reasons for my neurological conditions and the horrid pain that accompanied them. (Although not all people had the pain, most did.) ME followed and was diagnosed not too terribly long afterwards.

True, we never found a cure, but we have moved along in finding help for the pain. You may scoff and say it's not real, but it's the pain that stops so many of us from at least being hopeful. Yes, these are band-aid techniques, but sooner or later the real thing will be found. There are more researchers working on this than ever before. We may finally be taken seriously after COVID-19.

Take the same energy and become a volunteer. That way you'll be contributing to this world in some way and it may give you a whole new insight into how difficult it can be to find cures, money, etc. Volunteers are always needed and I know, volunteering helped saved my life. You have nothing to lose, do you? Yours, Lenora
 
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