Conference in Austin on March 29th

[hilly]

tcm.... you say people should be able to express what they feel and I agree and think Cindy did just that... I would be gutted too if I had put months of work into organizing something that I hoped and prayed would be good. Cindy may not have posted here much but she has had morgellons probably longer than most of us and indeed worse than many of us, but it has never prevented her working consistantly for the cause. She is a lovely caring person, a dedicated nurse and has truly and honestly put her 'all' into fighting this dreadful thing.

The DVD issue is something I can't comment on as I know nothing about it, but I think Cindy explained that well. The cost does seem very high but if that's what is was, OK.

Cindy is a great person to have on the forum and I am glad she felt she could express her sadness and disappointed at some of the comments. That was right and I hope she will stay and always feel able to say what she feels. That goes for all of us. I feel gutted for her. Milly xx

[tcmgpt13]

Milly, I never said that Cindy was not entitled to express her opinion. I think that everyone should say what they feel, as are you too here. I don't feel that saying what I did was anything more than my opinion about these issues. As I said in my prior post:

"Having other ideas about what is happening with morgellons and the study of morgellons does not make anyone unappreciative of others efforts."

This would include Cindy, certainly. I think one can have a different opinion from Cindy and still appreciate what she and others have done for morgellons.

I am not saying anything about her as a person or her work in my post. I don't think length of illness or how ill one is/was is the issue here. It is the right to freely express something in whatever direction one feels without having a guilt trip laid on because it differs from someone else's. And despite the fact that for some money is not an issue for others it is. I know there are some who hardly have the money to buy peroxide, vinegar, salt or borax, much less pay a doctor or purchase medication.

[hilly]

tcm... Sadly with this wretched illness we are all from time to time (or all the timein my case !! lol ) stressed out and therefore re-act possibly more than we would if we were well. All ideas and opinions are good to be shared, and anyone who hears of anything new , shares it. I am quite sure Cindy would agree with that. It's a pity about the cost of the DVD, I am one who can't afford it at the moment either. We are all here to support each other, I know you have given valuable advice to many including me. Cindy is a fund of knowledge and experience too and I do hope she feels she can stay here. Milly x

[Kritters]

Wow, TC....

Thank you so much for your kind words...it's so tough dealing with this most times...okay all the time....and I just love hearing something so nice.

Hey everyone...I have a great idea! I guess those who have been able to purchase the dvd already did, and I hope the proceeds have met their necessary mark. What I'm thinking is, and if needed permission is given, that anyone who can make inexpensive copies of it would do so and mail it to those who can't afford it. Just a thought and hopefully there will be volunteers. If I can figure how to do it I gladly will.

Just a thought.

xoxoxo
Kritts

[jonsi]

I found this on the Charles E. Holman Foundation site:

Scientific/Medical Conference on Morgellons
Austin DVD set information:

What's on the DVD's

BRIEF SUMMARY OF SPEAKER'S POINT

Dr. Raphael Stricker reviewed a brief history of his involvement with Morgellons and compared the situation to the early years of the AIDS epidemic. He reviewed some of the clinical aspects of the disease and his belief that Agrobacterium species may be involved in some manner in the disease process.

Thus far, research by Dr. Vitaly Citovski, Stony Brook Research Institute, has found PCR evidence of Agrobacterium in tissue samples of all Morgellons patients tested. No evidence of the presence of Agrobacterium has been found in the control tissue samples.

I believe it should be noted that Agrobacterium has the ability to insert its DNA into a variety of plant species, and has recently been noted to be the only known species of microbe capable of infiltration of the DNA of not only plant species, but animal species as well.

Ms. Ginger Savely, FNP-C, then spoke of her experiences treating Morgellons. She noted the common history and physical findings of Morgellons in many Lyme positive patients coming to her for care.

As one of the few clinicians who believes in the reality of Morgellons and has published about the disease, she has attracted a large number of Morgellons patients to her practice. Indeed, she likely has seen and treated more patients with Morgellons than any other clinical health care provider.

Ms. Savely shared a number of her observations about the disease and her treatment experiences, emphasizing each patient is unique and may require treatment tailored to that individual’s needs.

Dr. Randy Wymore, research scientist with Oklahoma State University Center for Health Sciences, Tulsa, presented an overview of his interest in the disease and some of the facts discovered in his research efforts.

As the fibers seemingly produced in the body of Morgellons patients seem unique, much of Dr. Wymore’s research has focused on them. To date, exactly what the fibers represent and their role in the disease process is unknown. What is known is mostly what the fibers are NOT. They are not of textile origin, as has been assumed in the past. Not only did a forensic analysis by a textile expert with the Tulsa, OK, PD fail to match the fibers with the FBI fiber database,other research revealed the fibers do not have the characteristics of textile fibers. One example is that the fibers do not dissolve in any of the common laboratory chemicals generally used to dissolve material in preparation for chemical analysis!

Dr. Greg Smith then discussed the fact that Morgellons is not just an odd skin disease, but a multi-system disorder with a profound impact on the health and life of infected patients. He stressed the importance of emphasizing this to health care practitioners and the media as the systemic impact is profound and it is all too easy to focus only on the bizarre skin symptoms thus failing to understand the true impact this disease has on individual patients.

Dr. Smith noted the high proportion of psychiatric illnesses in Morgellons patients which occurred after the initial skin symptoms and were not present prior to the illness. He noted this pattern of mental illnesses along with the failure of many dermatologists to do complete, appropriate medical evaluations of Morgellons patients has led to poor medical care for many patients. He related a story from his medical school days which taught him several valuable lessons for his practice. First, never make assumptions. Second, crazy people get sick, too! Their mental problems should never cause health care providers to dismiss or fail to investigate their complaints.

Before the lunch break, the group was entertained by Mr. Lee Mounger. Lee is a professional musician and was a friend of Charles Holman for 30 years. He performed several songs written by himself and Charles Holman.

Lee's musicical performance was a moving tribute to one of the strongest advocates for Morgellons patients lost to us because of a myocardial infarction last September 6.

After the lunch break a video presentation by Dr. Elizabeth Rasmussen was shown. Unfortunately, due to health issues, Dr. Rasmussen was unable to attend in person.

Dr. Rasmussen's presentation revealed some of her findings about Dermatology research and training.

Harriett Bishop, current President of the Texas Lyme Disease Association spoke of living with Morgellons. She discussed her own illness and the major impact on her life. As she learned to live with the illness, she became a survivor with a message!

Her emphasis on spirituality and a positive attitude was moving and inspirational. Her example and message should be guidelines for life for anyone with a chronic disease!

Mark Darrah presented some of his research including a number of Scanning Electron Microscopy images as well as high resolution light camera images. I believe many Morgellons patients will appreciate his images as in some instances they will see examples similar to those they've viewed with their home microscopes, but with awesome detail and clarity.

Mr. Darrah’s main research interest is the “goo” of Morgellons lesions. This almost glue-like exudate from open Morgellons lesions seems to have qualities very different from the normal weeping secretions from skin abrasions. Mark believes understanding of this material will be vital to understanding the disease process.

The last speaker of the day was Mr. David Gibbs, MS, CDRP. Mr. Gibbs is a patient advocate and representative for Social Security disability claims.

Mr. Gibbs reviewed the process of applying for disability with Social Security, including some of the difficulties and challenges of the process. He encouraged anyone beginning the application process to seek professional help to maximize their chances of a speedy and positive outcome.

At Conference closing all the speakers participated in a lively question and answer session.

Our heartfelt gratitude to our speakers and guests and all the wonderful people who worked behind the scenes to make this first Morgellons Conference a huge success.

GENERAL DISCLAIMER FROM CEHF ABOUT THE DVDs

The Charles E. Holman Foundation (CEHF), aka The New Morgellons Order, is dedicated to the recognition of Morgellons as a true illness and to encouraging valid scientific research to understand the disease, develop treatments for it, and eventually find a cure.

When we obtain information which we think is important and scientifically valid, it is our intent to make such information available to all interested parties. Our Conference on March 29th was professionally taped and is available for viewing on two DVD's.

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In the white light,
~jonsi

[kmar]

DID anyone here buy the DVD?

[tcmgpt13]

I don't see this new segment about the Austin conference on the forum and don't know if others have already posted this (searches being imperfect), but thought I would post the link to the TV video from CBS 11 in Dallas which covered the morgellons conference in Austin in case others may not have seen it either:

cbs11tv.com - Video Library

[kmar]

.


Links to Mark Darrah's images changed.

See images, data and graphs at Links below
(some were presented at conference, most were not:


LymeBusters - Mark Darrah --- Research Images, Data and Graphs

LymeBusters - Mark Darrah --- Research Images, Data and Graphs




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[Seasprite]

lol

I haven't been able to log on in months.

yes, I'd be interested to know if anyone bought the DVD.

[commonsense]

I would like to know if the dvd can be copied

since I don't have enough cash to get it.



does anybody know if it can be copied and did
anyone her buy it?

thankssssss

commonsense says ( sure it is old news now with no new info )
but I would watch it for FREE only