Is this fishy? Dynamic neural retraining a cure...?

[sillysocks84]

http://wheelchairtorollerblades.com/2014/02/02/my-recovery-from-chronic-illness/

This woman says she was cured of pots, cfs/me, fibro, mast cell disorder etc... AND had a baby by Christmas! Yeah right. Has anyone heard of this?

 

[John Mac]

Fantastic.......who do I send my money to so I can be cured.

 

[Snowdrop]

The very least she could do is acknowledge that she is being paid to shill for Annie Hopper. At least that would make her honest.
Shame for trying to take advantage of the vulnerable. The fact is that some number of people will part with their money--think they are cured and then go on to relapse later after having given glowing reviews.

If there was no money in this they wouldn't do it. Unfortunately I suspect there is a great deal of money to be made off people desperate to try anything.

 

[alex3619]

The fact is that some number of people will part with their money--think they are cured and then go on to relapse later after having given glowing reviews.

Some number also get better on their own, or for some other reason, but mistakenly think that whatever they last spent a load of money on turned out to be the cure.

If someone has a cure they can start with a pilot clinical trial. Then progress to a phase 1 trial. And so on.

 

[sillysocks84]

It makes me so enraged!!!

 

[PatJ]

It makes me so enraged!!!

The world has scoundrels and villains ready to pray upon anyone with a pulse and a little hope. To get angry about it is a frustrating, useless waste of energy and even a risk for PEM. Try to maintain cautious hope and optimism in the possibility of beneficial treatments but keep a few thousand grains of salt nearby to keep you balanced and skeptical.

 

[sillysocks84]

@PatJ you are so right!

 

[Living Dead]

I really don't see a problem with this, unless there is something I am missing. This isn't going to be the cause and cure for everyone. Some people may have their symptom start in the immune system and this won't work. For others it can start in the brain. If the brain is sensitised (wired to release excess glutamate) to certain stimuli, that could lead to excitoxicity and inflammation. This is a "wiring", so it can be rewired (relearned). Obviously, once you open a can of worms it's not easy to get them back in, so there's no guarantee the inflammation will calm down even if the brain is desensitised. In fact, inflammation sensitises the brain, so there is a vicious circle going.

This is just my impression, I'm not a scientist.

If someone has a cure they can start with a pilot clinical trial.

No. At least in my country you would need (by law) any medical research approved, and a competent person (i.e. doctor) in charge. This costs money. The end result may be that the treatment is approved so patients can buy it. This is exactly where we are at now, except that only people who recognize themselves in the idea buy the treatment. Loads of more people (who would never have bought it normally, and whom it may not even work for) will buy it if it is backed by research. This would lead to lots of people wasting their money, and the sellers getting a lot richer.

Please remember that this woman had electromagnetic hypersensitivity (ie. imo nocebo-created symptoms). So what if it is placebo if the illness was nocebo? Patients get a better life at basically no risk (compared to the risk of supplements, medications, GET, etc).

Obviously they make money off this. Everyone needs money to eat.

 

[alex3619]

No. At least in my country you would need (by law) any medical research approved, and a competent person (i.e. doctor) in charge.

Gone are the days when this is a major impediment. If there is any credibility you can find a researcher and apply for ethical approval. If there is enough interest you can get crowd funding for a pilot study. This is NOT a large phase 3 trial, and is much much cheaper. Good results from a pilot study can be used to apply for bigger and better funding, including grants, for a phase 1 study. And so on. Its not easy, but its doable. We are currently discussing organizing a pilot study just from patients here on PR, including all funding, involving diagnostics.

I am also aware of a ground breaking study, here in Australia, that broke all the rules. Almost got the doctor thrown out of the medical profession. Instead he shared a Nobel Prize. This was of course the Helicobacter pylori story.

Most treatments that do not go down this path are dodgy. A few might work. Some might work for some patients and not others. Sometimes people wind up with fraud charges, and even murder charges, for using unlicensed treatments that result in harm, including death. The rests mostly disappear over time as people realize they just do not work. You do not hear much about laetrile any more, and the murder charges are part of that.

 

[Living Dead]

If there is enough interest you can get crowd funding for a pilot study.

I doubt this would attract sufficient donations for this particular treatment.

 

[chilove]

I have a few friends in the Lyme community that have been greatly helped by limbic retraining. It seems to be part of the answer, not necessarily "THE" cure, but apparently can really help with symptom relief by down playing the sympathetic nervous system and reducing inflammation