Why Agnes Lewis Needs Our Support

[skylark99]

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[tcmgpt13]

And please, skylark99, could you tell us exactly who is Agnes Lewis? What exactly are her qualifications to conduct research which would be looked at seriously by other peer recognized researchers or scientists? Does she have any education to qualify her for this sort of research, whatever sort of research it is? Has she taken some advanced statistics courses to know how to collect data and set up questions correctly? And how do we know she is one of our own? How do we know her testimonial of improved !00% wellness is not one of remission only? Who will certify that she is totally well or what sickness she had? Why is it that you consider any questions made by members aggressive (quote from your post: I can hear the fingers aggressively tapping, tapping, tapping at the keyboards) when the same could be said of people who come here as new members declaring total wellness, solutions and/or cures of Morgellons while offering no proof of that except "take on blind faith what I say"? And finally do you have any particular personal financial reason for supporting this "research" such as writing and selling articles about it? Your "about me" section reads:'

Occupation
alternative health field and author

It would be good if these questions could be answered so that people can know if this person and her research would influence other scientists. It has to be more than just someone declaring she is well, has a theory and a "solution." I think it is good to be skeptical when there are as many unknowns as there are here.

tcmgpt13

Originally Posted by skylark99

Agnes Lewis started the thread "I may have a Possible Solution" this week.

She is asking for participants in the data gathering phase of her work to bring her understanding of how to heal Morgellons to a portion of the medical and research community that is really trying to find an answer to this horrible illness.

The scientific method of inquiry is the only one recognised by the medical and research communities, and frankly, it is the only one we have.

There is a specific protocol, a linear series of events and tasks involved in the process of doing authentic research, and that protocol must be followed in order to prove a theory.
The theory must be proven in order to gain support of other researchers and developers so that the work evolves to produce safe, reliable treatments.

All true scientists must risk disproving their theory in order to prove it.
And they must attempt to disprove it, in order to prove it.
This is how a scientist and researcher works.
And this is how s/he gets to a conclusion, a truth, a fact.
And there is no other way (that I know of).

I am interested in using treatments for my Morgellons that will heal me, and not make me more ill than I already am.
I find Agnes' approach refreshing and it encourages me to want to try it, if her theory proves to be correct.

I have no evidence of any cures to date; many people have made various claims about many protocols, but I have not seen proof that these treatments work; and that's not good enough for me.

It is also vital not to jeopardize the research by posting it publicly and risking it be buried under mountains of opposition and resentment; that happens more than is acceptable, it has happened to date in the area of Morgellons research, and we can't let that happen in this case. Worse has happened.

So. One of our own has possibly found a way to help.
I hope so. I want to get well.
Who could know Morgellons better than one who has experienced it?

And better that the treatment and cure come from one of us, than from Big Pharma, the insurance companies, or other parties only interested in the profitability of illness. Remember thalidomide? Vioxx? (fill in your own paragraph)?

Yes, (I can hear the fingers aggressively tapping, tapping, tapping at the keyboards), I am currently working with a doctor and using his protocol. But what if it doesn't work for me? On the other hand, Agnes' theory may be the same one that my doctor is basing his treatments on; I may get well and both of them will have their theories proven.

So, the sooner Agnes collects her data, does with it whatever a researcher does with data, the sooner she will tell everyone what her treatment protocol involved and how to do it. This is what she said that she will do.
And she is taking many risks to do this for me, for you, for us, for all of those who might have to one day say, "I have Morgellons". She doesn't HAVE to do this; she is already healed, already well. But she's doing it.

Sign up!! The questionnaire will be emailed to participants soon!!





sky

[fracty]

thanks Skylark. As always you are a breath of fresh air and a voice of sanity.

Even if someone is skeptical, things can be investigated in a kind way, rather than a way that chases off the poster.

[tcmgpt13]

fracty, asking questions about Agnes Lewis who is totally unknown (aside from her few posts, some of which were repetitive) here is not unkind. However Skylark's implication that members here are aggressive for asking questions is not kind to other members here. Implying members are wrong to question Agnes Lewis or Skylark's viewpoint by using such a charged word as aggressive was an attempt to deflect such questions. It would be a breath of fresh air to have these questions answered. There is no way to investigate anything about Agnes Lewis without more information or are we supposed to somehow find out about her qualifications by osmosis? If asking questions of a newer poster chases her off then maybe she has something to hide. Unless these posters have been using other names here, Agnes is brand new her (12 posts) and Skylark 99 has been here only a few months (20 posts). (Skylark: Join Date: December 5th, 2009, agneslewisinfo Join Date: February 18th, 2010).

Originally Posted by fracty

thanks Skylark. As always you are a breath of fresh air and a voice of sanity.

Even if someone is skeptical, things can be investigated in a kind way, rather than a way that chases off the poster.

[Enviro Girl]

I contacted her, as well. Sure, I have biiiiig hope after hearing of a 3rd state's success stories (prolly at least 8 ppl) and 1 of them being symptom free for almost a year - But what IF? I could regress and start popping fuzzballs tomorrow, I'd be devastated. Still, I want to be prepared...
NONE of us knows what happens with this down the road, either. Are we gonna be OK? Those folks passing away that were on lymbusters is terrifying.
We don't have time for ANY Reindeer Games. We need to get this OUT of us. We need to be armed with a variety of solutions to do so. Only #'s of us will prove success with any cure/future prevention.
I'm willing to help anyone else (except the CDC) further their research, because we deserve to have a variety of good, safe options. I'm not in this for ego or $, if Agnes has got something better than what I took, I will invite her to put her info on healthemorg.com - Or even if I'm just liking the way her research is going, I'll offer to get her some people to survey from there, as well.
Fastest, safest, cheapest, best is what we need to WORK TOGETHER to determine: Go Agnes!

[Seasprite]

I believe in order for the study to have merit and to warrant participation, we should be able to verify her identity (independently and outside of this forum) I would hope she would share this to add validity. I have asked her to provide me some contact info, However, we must ALSO in turn be willing to offer our identity to her and it would be safest for all to enter a non-disclosure arrangement to protect her and us.

Just as this person could be anyone, a scientist or not, etc. any of US could be random whackos posting in forums. She will also need to verify that we have actual symptoms and possible dx if the study is to be formal.

It may also be that she is just now doing a "straw poll" to try and disprove her theory to test it personally, in which case the formality may not be necessary. However, participants would also need to be certified in some way so fake patients are not included to skew the results.

She got a lot of hate mail etc. after posting, but I pointed out to her that this forum is FULL TEXT searchable on google. ANYONE can email her, even if they are not a member here. What about those who may be trying to cover this up? I ask Sky to please remove her email address in teh format you have now, at least remove the at symbol. She will get spam, by autobot webcrawlers that harvest email addresses that serach by the @ symbol.

all for healing,

sprite

[fracty]

TCM,

There is nothing wrong in asking questions when it is done in a kind way. That is not what happened in this case, and not what has happened in many, many other cases here.

Personally, I had questions about her myself. But you will not find any rude remarks here about her from me. On the other hand, even though I was not sure what to think, I had not already made a judgment against her. My mind was open.

Unfortunately, the trend at this site by a few is to make inferred insults to new people until they end up leaving. There is nothing wrong with having questions. There is something wrong with being rude in getting info, particularly when the questioner has little or no facts and has already made a first impression negative judgment.

[Seasprite]

My impression from many emails with Ms Lewis is that this is a preliminary questionaire and would not require detailed personal information. I plan to participate. I hope many others will also.

All for healing,

sprite

[Seasprite]

I have faith that Agnes Lewis is a real person, who suffered with Morgs, and having found something that seems to work for her, wants to help others.

We don't know what her solution is, and we don't need to know to HELP HER to PROVE
OR

DISPROVE her theory.

I have had many emails with her and I believe her to be sincere.

I would of course like to know her "resume" information, but feel that it is not necessary to answer a simple survey that she and her medical colleagues have worked on.

She assures me in an email that it contains test questions that will help to screen out "fake" patients.

Every question I have posed to her she has immediately and rationally answered.

If you want to help please contact her to get the survey emailed to you.

Email her at: a g nes le wis info (replace this with AT) gmail (dot) com

remove the spaces and put in @ and .

all for healing,

sprite (thanks for the shout out sky, great response from you!)

[ChatCat]

Hi all,

Anyone hear back from Agnes yet?

I am skeptical about this, however I want to be open minded enough to see what others are experiencing.

I hope I was wrong about it being a false hope post.


When you all get a chance please let us know if you hear from her and what she has you do. It would be very much appreciated.

Have a great weekend, cc