CFS= Phobia of Symptoms

[Recovery Soon]

ditto. - That suggestion was mind boggling.

[neil_l]

[quote="Sylvia"]rmx3000 Ashok deserves to make his money from this program. Not to be given freely away. That is wrong. 200 bucks is a ridiculously inexpensive program for something that really helps CFS.[/quote]

As a musician, I wish we could change the mindset of people who think that these productions just happen free of charge.

Stealing music (and DVD contents in this case) from the internet is the same as stealing the actual physical CD or DVD from a shop IMO

[morethansteph]

I said that I fully recovered for 8 years, meaning that I didn't have any CFS symptoms for 8 years (including the post exercise crash). I didn't say I was "cured" permanently. I didn't keep up with the technique I was talking about because I had been well so long, that I thought I was cured and wouldn't need it. Plus, I didn't understand at that point how the stress response was such a big part of the whole picture. In January, I had a relapse. I've been using the similar techniques for the past few weeks and can now exert myself without the symptoms recurring.
I'm not saying that the Gupta Program will provide full recovery (by my definition). I haven't tried it. I do know that other treatments based on the same concept work.
But to say that there is not scientific basis for the idea behind it is ludicrous. The Amygdala plays a large role in the stress response and there is a huge amount of scientific proof that the stress response can harm the whole body and induce the symptoms of CFS. There is also much scientific data showing that we can retrain (or recondition) our brains when they make negative associations. I would urge everyone to learn more about these areas before making blanket statements.
I'm finding some of the posts in this thread hostile and counter-productive, so I won't be following it anymore.
I wish everyone fast recovery and healthy mental states. javascript:emoticon(':D')

[cfs_since_1998]

morethansteph: "I said that I fully recovered for 8 years, meaning that I didn't have any CFS symptoms for 8 years (including the post exercise crash). I didn't say I was "cured" permanently."

Funny, I thought being fully recovered and being cured permanently were the same thing. I guess you did not recover after all.

morethansteph: "But to say that there is not scientific basis for the idea behind it is ludicrous. The Amygdala plays a large role in the stress response and there is a huge amount of scientific proof that the stress response can harm the whole body and induce the symptoms of CFS."

I did not really say there was no basis for it. I said there was no scientific evidence that it works.

The amygdala does not play "a large role" in the stress response. It does play a role but it is not even that well understood. So to say it's a large role and that there is a huge amount of proof behind it...is a huge exaggeration and borders on intellectual dishonesty.

To go from "stress worsens to CFS" to "overactive amygdala causes CFS" to "Gupta retraining program cures CFS" are two huge leaps in logic, with no evidence supporting them.

[Ashok Gupta]

Hi Everyone

PHOBIAS

Let me clear up some things here. Firstly let's deal with whether this is a phobic response. Amygdala trauma in ME/CFS may share some commonalities with phobias, but there are also some differences. Both occur in the amygdala, but in ME/CFS, the severity and levels of conditioning are much higher and more extreme. Why? Because with phobias you generally can avoid the thing you are phobic of. In ME/CFS you cannot, which means that the response becomes continual and automatic and extreme unlike in a phobia. Secondly the response from the nervous system is so extreme that it takes the body completely out of it homeostatic state, stimulating aspects of the immune system, allowing opportunistic viruses to take hold, and many other issues unique to each patient. Furthermore there are secondary sensitivities that occur related to the primary conditioning, such as sensitivitis to people, situations, events etc which may make the condition worse.

FULL RECOVERIES

I have dealt with this time and time again, and will keep repeating what I said before:

- people who recover do not hang out on chat forums on ME/CFS! when people go onto the internet, they go with a specific need, but when you are well you don't want to bother. I have spoken to lots of people who have done my programme who have FULLY recovered, and they don't want to even come on these chat forums. And why? Because what they find is that if they do post, people either accuse them of being plants, or just ignore them and accuse them of some vested interest (or being part of a cult!). I finally got to speak to Thomas Henri today who has agreed to come onto the site and post his experiences directly in a couple of weeks. He has consistently been able to do 2 hour gym sessions from being housebound and is now setting up a full time business. I could contact all the people on the original trial, but I am flat out working on some other trials which are my priority, because they will be independently run.

- there are billions of websites on the internet! Relatively there are not that many people doing the gupta programme, so to think that you can in any way have an accurate reflection of full recovery stories is not scientific.

- I have already posted a thread with many full recovery stories here:
http://www.chronicfatiguetreatments.com ... vt683.html and http://www.chronicfatiguetreatments.com ... vt686.html
but was then accused of making them up (!), so I can't really win here! I was going to be doing a 2 year follow up on the patients from the trial that I did, but I wanted to focus my energies on the new trial that I may be doing with Dr Lapp and other respected names in the field. Dr Lapp is a trusted physician in this area and has had some of his patients make a full recovery, so he is intrigued and wants to test this further.

This comes down to the way that we think as human beings. We interpret information the way that our dominant beliefs guide us. So even if there is lots of information that is supporting something, we will discount that information and only remember information which opposes it because it fits with our dominant belief about it.

TRIAL RESULTS

I have not been posting the trial results because I have been waiting for the publication. The paper is scheduled to be published in June 09, but I can give you the initial results here. Basically in the trial of 33 patients (average years of illness 10.5 years), this is a quote from the study paper:

"Out of the total 33 participants, 27 participants completed the programme. Comparing the percentage self assessment score out of 100 for each participant, 92% of participants (25 out of 27) reported improvements in functioning levels. Pre-treatment, the mean functioning score was 41.5% (+/- 16.0) which improved to a mean score of 77.0% (+/- 27.6) post-treatment. Two thirds of participants (18 out of 27) made considerable recoveries reaching “full functioningâ€

[Recovery Soon]

Dear Ashok,

Thanks for addressing these concerns. The reason the Full Recovery issue has yet to be resolved, not just by me, but by many, is because your definition is ambiguous.

"full functioning is defined at being 80-100% of pre-illness levels. These participants stated that they did not feel that they were suffering from CFS any more, and instead that they were in a transition phase from being ill to adjusting back into normal life."

I don't even understand what this means. Have the symptoms stopped, or haven't they?

I am full functioning according to this criteria, yet exercise is out of the question. So do I tell people I am recovered? Or am I in a "transition stage?"

And yes, this forum is a small subset, one which has not seen a single person fully extinguish the CFS symptoms, which is my definition of full recovery. Unless they are recovering and leaving the forum as you pointed out, but it seems unlikely that one would not return for a farewell post. Especially the one's we have gotten to know.

I don't know if my illness is so much different from others, as is my expectation of what constitutes a recovery. Many people are happy that they can walk around the block when they were once bed bound. This is wonderful, and a credit to you and your work, but this is not recovery. Yet many people have been convinced it is.

Like you said, we tend to include information that fits out belief systems. Your definition gives people lots of latitude in this regard.

I realize you may feel I am not accepting your explanations. But I do not feel satisfied that you have illuminated the concerns.

Kind Regards.

[cfs_since_1998]

Ashok Gupta: "...people who recover do not hang out on chat forums on ME/CFS...there are billions of websites on the internet...I have already posted a thread with many full recovery stories here..."

That is a really lame excuse. People with MS/CFS do come to forums, some of them eventually try the Gupta Programme, they continue to post updates, and there is no reason to believe they wouldn't inform us of a recovery. We have several people here who have been trying the program much longer than 6 months and haven't recovered. This is completely beside the point anyway. The problem isn't a lack of personal testimonials.

Ashok Gupta: "So even if there is lots of information that is supporting something..."

That is the problem, there IS NO scientific information supporting it. Again, just congecture, leaps of logic, and personal anecdotes. Those things are not real evidence.

Ashok Gupta: "I have not been posting the trial results because I have been waiting for the publication. The paper is scheduled to be published in June 09, but I can give you the initial results here. Basically in the trial of 33 patients (average years of illness 10.5 years), this is a quote from the study paper..."

1. It's a non-controlled study? Where is the control group? Without one, this study is useless.

2. The only evaluation was a self assesment questionairre? This is not valid, especially after you make considerable effort trying to change patients' perception of what "recovery" is. Where are the measurements of HPA function, of immune system function, of oxygen uptake, of postural blood pressure?

Defending the program with scienceless "evidence" like this is futile. Try again. I stand by my use of the word "cult."

cult: "any system for treating human sickness that originated by a person usually claiming to have sole insight into the nature of disease, and that employs methods regarded as unorthodox or unscientific."

Sounds familiar doesn't it.

[Recovery Soon]

His point was that his next study, the one with Dr. Lapp, will have control groups.

As far as the science, I don't know what markers are used to indicate CFS. I thought they hadn't nailed down any reliable indicators yet.

If they have, and you know of them, I would PM him, or directly email him at the site. He seems to be taking suggestions, and you might want to get that out to him before he starts prepping the funded study.

I want to see this thing done perfectly, so there is no more debate about any of this.

[Kiwi]

Hi Recovery Soon

It astonishes me somewhat, that you rather pinpoint on any mistake Ashok may have made (or not), than investing some thoughts in what could be the problem in your case that keeps you away from being healthy.

I mean by no way that it is your mistake that you have not gotten better within a certain time or even that program, but no matter what you suffer from, it is very important to put your mind onto something that helps you, no?

I have made the experience that there can arise many problems when being long term ill. I have worked with a therapeut once that helped me in a very tracked situation (amygdala closing down very very badly). We made an inner travel and asked a personality in me why she would keep me away from healing. And the answer was: Because I do not want to.

I was honestly astonished, because everything I knew about myself wanted to get well!!!! But some part of me seemed so hurt about all that had happened, that it was not constructive anymore. I would not heal as long as I did not know that and could work with it.

That is just one example of one reason. Of course there can be many others.

I would say that the part that is so hurt and doesn't move forward therefore may happen very often in ME/CFS, because what people go through is often very cruel.

Well, I will stop rambling for now. I just wanted to give my impression onto all that. I'd wish it will help you, but I am not really sure about it.

Best wishes

Kiwi

[Recovery Soon]

Kiwi,

I mean this with the deepest respect, but I think you're getting a little too deep.

I don't know about souls and inner personalities and all that.

I just want to know whether this program is a bona-fide, proven path to recovery, or just a very creative waste of time.

Much of the program rings true so I've continued to work with it.

I don't know how much good a wild goose chase searching for a subconscious desire to be ill will do me. I know myself better than most. I'm pretty sure I'm not willing this to happen. Even if I was, I don't think years on an analysts couch searching for a needle in a haystack is my path to recovery.

But I do appreciate the sincerity of your post.

[Kiwi]

Hi Recovery Soon


Thanks for your post...ah, yes indeed, I have the tendency to get a little deep

Thanks for reminding me that it is not always necessary.

Best wishes

Kiwi