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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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amazing recovery

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YippeeKi YOW !!

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@sunshine44
I'm asking again, are you referring to The Lightning Process that is quoted as restoring Hanna's health in the article you posted as the basis for this thread?


I'm really confused. You seem to be referring to a some other healing protocol in your statement below,
I think i wrongly assumed all these programs are equally created and that is not the case.
...... but damned if I can figure out what that other of " ....these programs ..." is.
 

sunshine44

Que sera sera
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I do not want to sound like an 'informercial'. There are many different neural retraining programs. I have chosen to not list them all here. People can look them up on their own.

I do know some that have done quite well with ANS, so to each their own.
 

sunshine44

Que sera sera
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Just like some people can do vitamin D but one drop lands me in ER and also magnesium. Gotta do your own research and listen within.

Every one of us is so different which is one of the frustrating parts with this illness.
 

Sushi

Moderation Resource Albuquerque
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I do not want to sound like an 'informercial'. There are many different neural retraining programs. I have chosen to not list them all here. People can look them up on their own.
This is very true but...unless you name the program you are writing about, we will be talking about oranges and apples as the programs are so different. It isn't necessary to name them all, but, for clarity, I think you have to name the program that you are finding helpful and be clear as to whether or not it is the Lightning Process.
 

sunshine44

Que sera sera
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1,153
I am not even aware of all the programs that exist is my entire point. There are many from what I understand.

Programs I own: ANS, Gupta and DNRS
 

YippeeKi YOW !!

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My take is that there are programs that are helpful to some and "honest," and others that are secretive, very expensive and more or less exploit the patient community.
That's my concern, too .....


If the medical and scientific community put as much effort and attention into the ME/CFS community as exploiters do, we'd all be vacationing in Ibiza or Cancun or Hawaii and talking about the 'bad old days' ....

This is not necessarily to say that any of the listed links are exploiting our community, it's just an observation.
 
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Judee

Psalm 46:1-3
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yeah, I am sure they are making lots of bucks on their $300, 100% refundable programs.

1) At $300 per person, you only really need 1000-1500 people to sign up to be well on your way to half a million dollars. That's only a tiny percentage of the worldwide ME/CFS community. We number in the millions.

Thanks! That will help have a meaningful discussion. My take is that there are programs that are helpful to some and "honest," and others that are secretive, very expensive and more or less exploit the patient community.

2) And some are deceptive in their sounding honest when they really are not. Some people are very good at reeling people in with extremely sympathetic pitch only to turn on the patient with "My system worked for these other people. Why isn't it working for you?" (I almost got reeled into one of those before researching the system. He had me in tears sometimes because of his gentle assurances that it wasn't up in my head but the more I learned the more I came to understand that it would be my fault if his system failed. I'm sorry but that made me angry and more suspicious of these programs when I run into them.)

3) And when you're a vulnerable sick person, I just cannot see you going back to fight a narcissistic person for that 100% refund. @sunshine44, you said the ANS rewiring just wasn't for you. Did you get a refund on your money?

4) Anyone can claim to have had ME/CFS. It fits with any number of sales techniques that people employ. 39 powerful sales techniques to turn your prospects into customers (It fits very well with items 1,2, & 4 in this article.)

Look, I know a lot of ME/CFS patients who are blogging to helpfully share their experience with other patients. I visit a lot of those type of sites and while I'm sure they are making some money off their blogs, I have yet to see one promoting their own books/programs. I mean, in my mind, that just doesn't fit with someone who truly has ME/CFS. I think this disease just seems to make us especially empathetic to the suffering of others. While I would want to help others get better, I just wouldn't feel right trying to make a living off of my experiences at their expense especially since this disease impoverishes so many (myself included).

Anyway, @sunshine44, I'm happy you are getting some relief and I understand that you are not trying to sell us anything. You just feel some joy that it is working for you so it's understandable that you would want to share it with us on the chance that someone here would benefit. I agree with you that it is important to research but I also think it is important to have a healthy (misnomer for this site) dose of scepticism when handing over money to someone who got "cured" with their "own system."
 
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YippeeKi YOW !!

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@Judee
You've voiced my concerns perfectly.

I'm so sorry for what you were put thru, Judee. You deserve sooooo much better. It was brave and extremely generous of you to share it here.

On the one hand, I know it's hard not to want to share something that you believe has helped you, but on the other hand (and there always is an 'other hand'), there are too many smooth talking, well-rehearsed, conscienceless, sociopathic salesmen out there willing to say absolutely anything in order to prey on the vulnerable and desperate. We have no choice other than bringing a degree of skepticism to the table.


Thank you, again, Judee. You're a cut above :woot::woot::woot: :thumbsup::thumbsup: :angel::angel: :hug: !!!!
 

sunshine44

Que sera sera
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Have you ever spoken to Dan Neuffer from ANS? or Annie Hopper from DNRS?

If you had, you would know they are the furthest thing from a narcissist and I am quite familiar, having a husband and mother whom are narcissists. If anything Dan Neuffer cares too much for people and I hope he manages his energy well through that.

In an ideal world that would be great if this stuff was through our medical system right now but its not and it won't be any time soon because our current medical system in the US is an absolute sham at best (aside from trauma care etc.)

You guys have fun talking about all perceived bads that could come from this stuff. I have done my duty on this thread to those looking beyond the gray clouds and will not be responding anymore.

peace.
 

used_to_race

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That first one costs $300 initially and another $50 a year thereafter. They even charge an extra $100 for a USB stick with the videos on it... All the testimonials and recovery stories could be made up obviously. Claims to be based on neuroplasticity which is a huge buzzword phrase and an active area of research. I personally know some UCLA neuropsychologists and neuroscientists who study this very thing and wouldn't believe claims like this site is making in a million years. Can probably get their thoughts on it and post here if you guys care. The guy is writing that his program uses "the body's natural ability to heal itself" which is a phrase often used by scammers trying to manipulate and take advantage of sick people who aren't getting better. How can you cure a disease which has no proven cause? Oh, right, just let the body "heal itself" and then I don't have to explain any of the science. Rad!

The second one has some testimonials from clinicians who don't show up at all if you google them, are they even real people? Who knows! He's also charging $400AUD, and the refund (who knows if he would honor this guarantee - he lives in Australia, it would be a huge pain for me as an American to go after someone in Australia and probably not worth it) doesn't include some "administrative fee" that he keeps anyway.

The third program you've linked has a website festooned with testimonials and reviews from "experts", most of whom are chiropractors or acupuncturists. Even if you do believe in these treatment modalities, which you shouldn't really, it's not exactly great to see these as the top experts backing a program. Why hasn't the scientific community backed this? One of the experts cited is someone named "Patrick Hanaway, MD" who is listed as the 2017 winner of the Linus Pauling Award. This is a really prestigious award given for work in chemistry, almost akin to a Nobel Prize. The actual winner of this award for 2017 was Christopher Cummins so I don't know if this is just a lie or there is some other obscure award by the same name won by this Hanaway guy. Either way it's super dishonest. Just based on that the program is obviously BS. They don't seem to take online payment so who knows what the terms are and how easy it is to get a refund.

None of these look like they would ever be helpful to anyone and I honestly think that anyone who says a program like this worked for them is benefiting from a combo of random chance and the placebo effect, or is a liar. It would be so easy to create a paid service like this with a fancy website and then go on PR and post about it like you're a patient whose life has been changed and make thousands of dollars if not more.
 

sunshine44

Que sera sera
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Untrue. I have Gupta. It is not an additional $50 a year.

Yes, Dan Neuffer does honor his return policy, I know from personal experience.

I am not reading testomonials. I have talked on the phone with multiple people/friends whom are much better.

The ME/CFS community can only keep ignoring these cases and calling them sporadic for so long.

Also, a heavy dose of skepticism would have kept most from accomplishing great deeds, ease up there lad!
 
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I understand we are talking about some form of brain training...it could possibly make many symptoms "disappear" but technically it would be a form of brain damage (see the movie, "Eternal Sunshine of the Spotless Mind" for the inspiration for that comment). CFS/ME begins with the "chemical flu" usually caused by chemical exposure/bioaccumulation and frequently made worse with a co-factor (virus, mold, prolonged stress). Even EMF pollution can contribute. Brain training methods may train your body to no longer respond with fatigue and inflammation, but the damage is there, so don't go back to living your old life. If you keep exposing yourself to toxic chemicals, toxic mold, environmental pollution, and EMF long enough and you will likely just end up with cancer or organ failure instead.
 
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