The “Research” is in the garage.
The “Research” is in a Garage in Santa Barbara
From discussions on the Rhythmic Living Research Discussion group in April, 2005
Many women on the Wiley Protocol were concerned about the toxins in the PCCA HRT cream because we were putting on such large amounts. We were concerned that this did not support our health and might be why we were having unwanted results as well as inconsistent blood levels. We had been pushing for a better base cream. We asked about olive oil as a possibility. TS Wiley told us it did not get blood levels and was not an effective method to get hormones. (Please see the end of Dr. Formby’s interview to put this in context.) Many women had a hard time getting “blood levels” which is quite amazing considering the quantity of hormones were used. We were told we would feel better once we got “blood levels”. We were told we needed good product to get good blood levels. We were promised we would get good product from a registered Wiley Phrarmacy. We did that. It didn’t work.
[For more recent evidence of the methods of Wiley's publicist, Wiley's husband, and Wiley's pharmacy please read carefully, the message board at www.sexliesandmenopausesupport.com The message board was eventually taken down by the owner. The behavior on the open internet board inspired the creator of www.wileywatch.org]
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Wiley refers to Caren Abdula as “My Publicist”. Caren’s writing appears in red.
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Wiley’s Publicist:
This is the least heinous base that we have to choose from right now. There are chemicals and preservatives in numerous products that we all use every day. Susie makes the joke that since these preservatives all have estriogenic effects, how do we know it’s not the preservatives that actually hold the estrogen in suspension.
4/18/2005
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Lynne:
Rushing to market the current flawed hormone cream suggests that the whole protocol may have been rushed into production.
Wiley’s Publicist:
“Excuse me, I responded to a demand. Eight years of research is not “rushing to market”.
4/18/2005
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Wiley’s Publicist:
This is in response to Lynne’s outrageous and argumentative remarks. Susie and I are sorry you’re so unhappy. Women nurture each other not chew each other out. If you’re Estrogen in the olive oil was working, you wouldn’t be acting this way.Susie had 50 volunteers test Wally’s oil from Women’s International. It doesn’t work. It sediments, seperates and doesn’t stay in the fat base.
If you can make it work good for you!
I will not respond to anything else you had to say. In my opinion much of it was taken out of context and twisted.
I believe Debi responded perfectly and we applaud and thank her for her comments.
Caren
4/19/2005
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Wiley’s Publicist:
I forgot to mention one more thing that’s very important for everyone to know in regards to the true “Wiley Protocol”
Lynne, you aren’t on the Wiley Protocol if you use olive oil, you’ve made your choice. All Susie ever wanted was to give women a choice and you are the beneficiary of that. You were able to make a choice. You should be grateful.
Caren
4/19/2005
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Lynne:
I phoned Carol Peterson at Women’s International Pharmacy about Caren’s claim that Susie had 50 volunteers taking WIPs olive oil-based hormones. She gave me permission to post this to the list.
Subj: RE: [Rhythmic_Living_Research] Digest Number 78
Date: 4/20/2005 3:51:10 PM Eastern Daylight Time
From: [XXXX]@womensinternational.com
To: [X]
Hi, Lynne.
Thank you for asking about the 50 volunteers using the olive oil drops. We don’t have information about this. We have at times supplied investigators with product for a study but this wasn’t the case for this. If this has been done and compiled we would love to see it. We are always interested in results positive or negative. We don’t disagree that the hormones settle in the olive oil, it is very important to shake well before dosing to disperse the powder. As I mentioned to you, we have a good number of practitioners using drops regularly with their patients and following them for long periods of time.
Carol Petersen, RPh, CNP
Director of Pharmacy Operations
Women’s International Pharmacy
4/21/2005
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(former member of RL group):
Caren
Other than anecdotal references to her research in the book, Susie has provided no documented or published evidence of any study or research.
Susie does mention in her book anecdotally that about 100 people have been involved. She also mentions a handful of names in her acknowledgements.
Laurel has created a website where women can anecdotally share experiences. It is also a forum for sharing the scientific literature as it becomes available. If the intent of this forum is to be scientific in analyzing the research, then we would appreciate any reporting of valid, published material. You are making claims and citing figures from some information source that has not been
validated by any published source. We can all make unvalidated
claims. We are looking for something more comprehensive on this website.
So the question is, does Susie intend to publish her results? If so, when?
I think everyone here on the website would greatly appreciate an update from Wiley’s study regarding;
• the number of patients involved
• health of patients at baseline
• the doses of hormones used throughout cycle
• the ingredients of the creams used as base
• the source of the base hormones – e.g. compounder
• the duration of the treatment e.g. number of years on protocol
• side effects reported
• benefits reported
• experimental and analytical methods
I would urge her to submit her findings not only to us – the women who are attempting to use her protocol – but to a peer-reviewed journal for others in the scientific community to examine her research. Susie claims that this research has been about ten years in the making.
The biology of breast cancer and cardiovascular disease also indicates that a 10 year reporting window is a good time frame. It takes about 10 years for a noticeable 1 cm tumor to form and about the same amount of time for atherosclerotic build-up to become noticeable (for references see my up-coming analysis of the WHI).
A response from Wiley is eagerly awaited.
Name withheld on request
4/20/2005
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Carole Tomasco of The Wiley Registered Pharmacy:
There has been so much “hearsay”, “speculation”, & “false rumors”, that I cannot sit by & just let all this talk go on, day after day, without commenting. I hope that the comments & speculations by a select few woman do not overshadow the amazing & positive results that 99% of the women receive from this protocol & the years of research that Susie has put into this.
For the select few that are having “problems” with our base , I urge you to change to another pharmacy who will serve your needs better.
I take all of this very seriously & to heart & feel personally insulted when the comments of “a few” can be so “unfounded in reality” when it comes to what goes on in the compounding of this protocol or questions the years of research that occurred, prior to the writing of Susie’s book………..
Carole Tomasco of the Medicine Shoppe (The Wiley Registered Pharmacy)
4/20/2005
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Lynn R. (member of RL group):
1. Does Susie have any of this study written down? This is the first I’ve heard of anything being tried besides cream. Even if it’s not aformal study could you post the informal data like what blood levels these women got, amounts used, for how many months, etc.
Wiley’s Publicist:
All of Susie’s research is in a garage in Santa Barbara [emphasis added]. She said anyone is free to come over and spend the time it takes to look thru it, we cannot. She put everything that she thought was important in the book SLM. The bibliography has 2100 references to the medical journals and bench science. Caren
4/20/05
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(former member of RL group):
Caren’s response to our inquires about Susie’s research was:
“All of Susie’s research is in a garage in Santa Barbara. She said anyone is free to come over and spend the time it takes to look thru it, we cannot. She put everything that she thought was important in the book SLM. The bibliography has 2100 references to the medical journals and bench science.”
My response to the above quote is:
Let me get this straight. Susie has put her so-called “research” into a musty garage in a box? IS this indicative of the value she places on this so-called “research” – stuffing it in a box in a garage? It suggests that she herself places absolutely no value on the information therein.
Furthermore, Susie “cannot” or will not spend the time to present it for our scrutiny? WHY?
Researchers publish their research and submit it to peers for review. Why is she unwilling to allow the scrutiny of the scientific community or our scrutiny? Her claims to research are suspect.
If Susie is unwilling to publish this “research” do not call her anything more than an author with interesting ideas.
We can all lay claim to having interesting ideas. And we choose to discuss them openly and freely – without censorship on this website and on this board.
Caren speaks of choice: “All Susie ever wanted was to give women a choice” .
My response:
On the one hand Susie advocates self-managed menopause, but on the other hand she and her spokespeople censor any one who “choses” to deviate from the WP and self-manage. You cannot have it both ways.
Name withheld on request
4/21/2005
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Lynne:
Many of us don’t want to be associated with “the research is somewhere in the garage” school of science. We prefer full disclosure.
4/21/2005