Conference call Wed, 6/16 Intro to Biofilm and Probiotics w/Pam Crane & Nancy Guberti

[zara cybele]

[tcmgpt13]

Here you have it folks, MDR now appears to be sponsoring free ads posted by "members" who are making not one penny doing this. This used to be a support forum, but no more. Groups of sellers and newly recruited "helper" members seem to be selling products and/or testing labs. Information is now being posted about laboratories who conveniently keep lists of helpful doctors for you to contact to "test" for Morgellons (eventually, down some future road, of hazy promises). How handy that the tests are being run by this same lab who suggests the doctors. Oh, of course no one makes a penny on any of this either. Does anyone who is doing this advertising ever check to see if it was okay with Franky? No, I rather doubt that. I do not see any information which shows this testing is generally accepted as having validity, that it performs as advertised and if it is recognized by other labs and doctors (not associated with this ad). Do any other labs do these tests? If not why? Why should sick people accept only words saying these tests are valid? I would like to see valid facts posted here showing some kind of research recognized by those not associated with this group.

[livewell]

Originally Posted by tcmgpt13

Here you have it folks, MDR now appears to be sponsoring free ads posted by "members" who are making not one penny doing this. This used to be a support forum, but no more. Groups of sellers and newly recruited "helper" members seem to be selling products and/or testing labs. Information is now being posted about laboratories who conveniently keep lists of helpful doctors for you to contact to "test" for Morgellons (eventually, down some future road, of hazy promises). How handy that the tests are being run by this same lab who suggests the doctors. Oh, of course no one makes a penny on any of this either. Does anyone who is doing this advertising ever check to see if it was okay with Franky? No, I rather doubt that. I do not see any information which shows this testing is generally accepted as having validity, that it performs as advertised and if it is recognized by other labs and doctors (not associated with this ad). Do any other labs do these tests? If not why? Why should sick people accept only words saying these tests are valid? I would like to see valid facts posted here showing some kind of research recognized by those not associated with this group.

Thanks Zara

I'm sure everyone will cross their T's and dot their eye's and make the best informed decisions for themselves.

I'm still looking into the Great Plains Labs myself and plan on doing more than dotting my eye's. Thanks for reminding us to think for ourselves TC. I tend to do that even when you are the one forthcoming with information in an effort to be helpful.

Livewell

[tcmgpt13]

LW, it's good to hear you think for yourself. Many don't see this is an ad which is why I like to point out that so far we have very little information about any of these tests or their validity. BTW, this is an ad Zara posted for this lab. It would be good if other information which was not from any of this group were posted about the tests. If these tests are indeed helpful they should be available from more than just one lab. Also there is no way that we can know that this will lead to a definitive test for Morgellons. I feel it is wrong to raise hopes when right now there is nothing more than a vague suggestion this will ever happen.

Originally Posted by livewell

Thanks Zara

I'm sure everyone will cross their T's and dot their eye's and make the best informed decisions for themselves.

I'm still looking into the Great Plains Labs myself and plan on doing more than dotting my eye's. Thanks for reminding us to think for ourselves TC. I tend to do that even when you are the one forthcoming with information in an effort to be helpful.

Livewell

[Baraka Obam]

There are many questions pertaining to our recovery.

If we do not take part in mass of new types of testing can we expect to find any answers without the CDC's help.

Where is the help coming from, will we be used as test subjects for the next coming years without positive test results

What investigators free of big government and drug company money will help people screaming FRAUD every time someone with the best intentions comes around.

How will any private sector investigator do their work without money'

Will the government and drug companys need to lift a finger to discredit any work that will be leaning towards a cure with everyone yelling fraud.


I feel our best hope for a CURE not a SYMPTOM drug will come from the private sector, I also feel this fibrous material disease is at the basis of total body system destruction.

The drug companys can not allow disease eradication drug development, the government does not want disease to be eradicated.

I hope this method of investigating will be productive.

We will either pay for finding the answer to this, or quite frankley we are going to waste away as the drug companys try symptom drug after symptom drug on us. They will work on itching, hair loss and lesions/tumors first, because if we arn't ugly we do not care, we would rather be DEAD than UGLY, poor vain people.

[pmc]

Originally Posted by tcmgpt13

Here you have it folks, MDR now appears to be sponsoring free ads posted by "members" who are making not one penny doing this. This used to be a support forum, but no more. Groups of sellers and newly recruited "helper" members seem to be selling products and/or testing labs. Information is now being posted about laboratories who conveniently keep lists of helpful doctors for you to contact to "test" for Morgellons (eventually, down some future road, of hazy promises). How handy that the tests are being run by this same lab who suggests the doctors. Oh, of course no one makes a penny on any of this either. Does anyone who is doing this advertising ever check to see if it was okay with Franky? No, I rather doubt that. I do not see any information which shows this testing is generally accepted as having validity, that it performs as advertised and if it is recognized by other labs and doctors (not associated with this ad). Do any other labs do these tests? If not why? Why should sick people accept only words saying these tests are valid? I would like to see valid facts posted here showing some kind of research recognized by those not associated with this group.

Dear Everyone,
Please read and go to things I have written and have been involved with so you can come to know me instead of misreading snippets.
I do not sell anything nor do I earn anything.
I do not look for any ones approval nor do I scam anyone,but try only to practice good science.
Not particularly sure why all of you are looking at it like you are.?? Quizzical....
It is a gift that has been given to those who want a chance to get well.
No one has to go do it. I shared with excitement something that has been alot of hard work to achieve and wanted to give it freely.
If I could I would give it freely,and my true friends know this.
The lab has finally agreed to document morgellons sufferers and to name our suffering.
No one is earning anything off of that and those being tested will only stabilize.
It is an amazing dichotomy to me that any one would discourage others from something that could help them get well.
I posted here because I was told you are all very intelligent and all very positive,supportive,and kind people who do not lend to a pack mentality.

If I had expensive machinery I was selling or asked for donations or worked for the labs or pushed 1 product you could have at me.
This is not looking too good for you all in regards to professionalism and I would ask that you do not a discredit my reputation as I have not done yours.
It was my hope to help many,and for nothing but the joy of knowing they are well.
I work 24/7 for the satisfaction in knowing that in spite of some who do not understand there are those who will get well.... I will be doing the 'Happy dance at that time' and I will push through any and all resistance thrown out there. I wouldn't think you would want to be labeled in that pack.
It is my hope that you will email me directly instead of defaming my name in an open forum.
Lets talk as adults and go over anything you would like.
Blessings to you and those you love, I am so very sorry you have so drastically misunderstood.
*Truth goes through 3 phases - First Ridicule
*Second - Violently opposed
*Third Acceptance

Pamela Mae
Morgellons Focus |
pamela@morgellonsfocus.com

[lamb]

PMC ignore these sales obsessed dweebs. As my Mom used to say
Misery loves Company.

There is no moving forward without the approval of the ignorati on MDR anymore.

Sad but true.

[tcmgpt13]

"Lets talk as adults and go over anything you would like."

When others don't see things your way PMC it does not make them less than adults.

"Please read and go to things I have written and have been involved with so you can come to know me instead of misreading snippets."

There is nothing snippet like about my post which you quoted above, though if you would like me to I could go on at greater length, extend it.

Many people who sell products say they are just doing it out of the goodness of their hearts and are not making any money. We have heard a lot of this in the past and are hearing it again now.

These labs you support seem to have some very questionable testing. Still the reason to do any testing is to make money. Medical testing is a money making business. Referring people is too. Websites also have that potential. You happen to own one.

Quizzical....

Nothing too quizzical here.

"I work 24/7 for the satisfaction in knowing that in spite of some who do not understand there are those who will get well...."

No one works 24/7. Everyone has to have some rest. Also you need to quit insulting those who do not agree with you. We do understand, maybe more than you would like us to.

There is no reason to believe anything you support will make anyone here well either. This is yet another example of the false promises that those who sell snake oil make.

Now we hear the real truth here:

You said "If I COULD I would give it freely..."

So obviously it is NOT FREE. So please stop pretending.

This lab wants to keep records of DNA and other materials. How would anyone know it is safe to do so? Who are you? Who are the people who run this lab? I believe Skylark99 already discussed this yet like the typical snake oil person questions raised are never answered. You say you want to answer questions. Why not answer the questions skylark99 raised? Others have been raised too. We are all waiting...

"This is not looking too good for you all in regards to professionalism..."

Since when did you think that any of us here were professionals? So what are YOU up to here? No one is discrediting your reputation. Provide credible answers and I am sure people will listen.

"It is a gift that has been given to those who want a chance to get well."

Some people may get well without your help. This is another red flag for a person selling snake oil. Sort of the do it my way or you will stay sick routine. Use only these labs. Contact these labs only through me. Oh, it's all so transparent.

Then add the little insult: "I posted here because I was told you are all very intelligent and all very positive,supportive,and kind people who do not lend to a pack mentality."

Imply that if we do not listen to you alone we are a pack of animals. Nice touch. This is so typical of a person who is selling snake oil. You are the reason I started a snake oil thread here. I wanted people to have rational articles which discussed the tactics of people who prey upon those who are chronically ill.

Skylark99's post:

Originally Posted by skylark99

........ So, in the "interest of science", that Metametrix has the possibility to identify the Morgellons parasite........ and since we would be allowing our personal data and DNA to be stored, and for such willingness to participate in groundbreaking research to find the answer to the terrible disease of Morgellons...........

I am assuming that all this testing, is going to be free and without cost to any guinea pigs who ante up for participation in this study???

And it IS a study, and a research effort to "identify the Morgellons parasite", no matter what paintbrush it is colored with. Because if Metametrix does actually identify a single parasite or cause, Metametrix, not the people who pay for the testing (the Morgellons patients), will get the credit for that.

Of course not.

I looked at the GPL homepage and price list for these tests......... way too much for people struggling to simply stay alive and manage the enormous costs of the ravages of this illness. I didn't even add up the numbers....... as it is obviously thousands and thousands.
It is never assumed that people with Huntingtons, cancer and other horrendous illnesses can commit financial contributions to research into their own illnesses, I am flabbergasted that Morgellons patients are assumed to be less affected physically and financially.

Yes, research needs to be done, but the costs for that should not be borne on the back of people ill with the disease.
This reminds me of the ever-more clever and ingenious ways that businesses have come to invent methods of passing on THEIR costs of doing business to their customers.
Likely, the few participants will be those with insurance coverage that will make this participation possible for Morgellons patients. But in the end, the data will not be as valuable or perhaps even useful from lack of the broad sampling of patient data required for useful analysis.

The Mathematical Model for Why Snake Oil Sells

Originally Posted by pmc

Dear Everyone,
Please read and go to things I have written and have been involved with so you can come to know me instead of misreading snippets.
I do not sell anything nor do I earn anything.
I do not look for any ones approval nor do I scam anyone,but try only to practice good science.
Not particularly sure why all of you are looking at it like you are.?? Quizzical....
It is a gift that has been given to those who want a chance to get well.
No one has to go do it. I shared with excitement something that has been alot of hard work to achieve and wanted to give it freely.
If I could I would give it freely,and my true friends know this.
The lab has finally agreed to document morgellons sufferers and to name our suffering.
No one is earning anything off of that and those being tested will only stabilize.
It is an amazing dichotomy to me that any one would discourage others from something that could help them get well.
I posted here because I was told you are all very intelligent and all very positive,supportive,and kind people who do not lend to a pack mentality.

If I had expensive machinery I was selling or asked for donations or worked for the labs or pushed 1 product you could have at me.
This is not looking too good for you all in regards to professionalism and I would ask that you do not a discredit my reputation as I have not done yours.
It was my hope to help many,and for nothing but the joy of knowing they are well.
I work 24/7 for the satisfaction in knowing that in spite of some who do not understand there are those who will get well.... I will be doing the 'Happy dance at that time' and I will push through any and all resistance thrown out there. I wouldn't think you would want to be labeled in that pack.
It is my hope that you will email me directly instead of defaming my name in an open forum.
Lets talk as adults and go over anything you would like.
Blessings to you and those you love, I am so very sorry you have so drastically misunderstood.
*Truth goes through 3 phases - First Ridicule
*Second - Violently opposed
*Third Acceptance

Pamela Mae
Morgellons Focus |
pamela@morgellonsfocus.com

[Tootsie]

hi Pam

May I ask how long you have had morgellons?

And are you cured now?


Also what is your association with Mel Freidman? And how did you meet him?

Thanks

[tcmgpt13]

Well, toots, Cyn found some discrepancies in the length of time Pam said she had it. Cyn posted about that earlier.