Morgellons Research Foundation January newsletter

[tcmgpt13]

(BTW sorry I could not just link to this as MRF doesn't have separate links for each page as most websites do):

MRF
Morgellons Research Foundation
PO Box 357
Guilderland, NY 12084-0357

January 2008 Newsletter

Topics:

1. CDC Investigation
2. Scientific meeting in Texas
3. Washington Post Magazine article


1. CDC Investigation:

The CDC has formally announced a Media Telebriefing re Morgellons for Wednesday, January 16, 2008. According to today's important CDC announcement :

"CDC to Launch Study on Unexplained Illness The Centers for Disease Control and Prevention (CDC) in conjunction with Kaiser Permanente Northern California Division of Research are launching a study to learn
about an unexplained skin condition known as Morgellons. Researchers hope to learn more about who might be affected, what symptoms they experience, and factors that may contribute to their illness. The telebriefing will outline CDC's study to learn more about an unexplained skin condition referred to by some as Morgellons."

To listen to the live telebriefing:
Dial: 1-800-475-4938
Passcode: CDC Media
Weds January 16, 2008 2pm EST, 11am PST


2. Scientific meeting in Texas

The first, of what we hope will be regular scientific meetings to discuss Morgellons disease, was held in San Antonio, Texas on January 7, 2008. This meeting was attended by physicians, veterinarians, and microbiologists investigating or hoping to investigate Morgellons disease. The MRF Executive Director was invited to make a presentation at this meeting to share the perspective of patients and parents of patients, as well as outline the history of the MRF. Scientific and clinical presentations were made and strategic discussions were carried out by attendees to plan the best course for researching the disease.

3. Washington Post Magazine

An article in the Washington Post Magazine is scheduled to be in print on January 20, 2008. Please check this website for more information on this date:

http://www.washingtonpost.com/wp-dyn...ine/index.html.

As always, we will keep you posted on the latest information about Morgellons disease. We look forward to better times ahead for all of our families.

William T. Harvey, M.D., M.P.H., M.S., Chairman
Mary M. Leitao, Executive Director
Douglas Buckner, Ph.D., Associate Director
Janelle Fossen, Secretary
Dale Cowher, CPA, Treasurer
Roy Houchins
Board of Directors
Candice Han, Director of Media and Public Relations
Morgellons Research Foundation

The Morgellons Research Foundation is a 501(c)3 non-profit organization

[Jo]

Cheers TCM - I think we should ride the crest of this wave the best we can.....interest in Morgs can only grow now, I reckon..
Jo xx

[Kritters]

I agree Em,

No mention of bugs with wings surrounded by fibers or any of the really gruesome things people are experiencing.

With reporters doing the thing they do to get more information than the next (most people calling in on that station were from newspapers or radionews) maybe individuals could call them up and offer more information they didn't have.

Kritts

p.s. is there any way, do you think, that all the links to press releases and interviews could be placed on one thread?

[Kritters]

Here's what's scary Em....

Could "Jilly"s doctor be correct? That the MRF is looking for funding and won't get it as long as a cure is found too quickly? Why am I thinking of the Cancer Foundation right now?

What's going on here anyway?

xoxo
Kritts

p.s. I just updated my photo. I hope you like it.

[Kritters]

I thought the MRF was started by the woman who lost her husband and her kids have it??? I'll check it out. I get confused with all the Morgs sites.

My feeling about the Cancer Foundation is that it's a money making organization and all the money goes into the pockets of the people running it rather than research. If a cure is found, many people will be out of work. Can't let that happen, can we? They have mouths to feed, and we're not talking kibbles and bits.

It's going to be a whole nuther ballgame now. The door is open and the truth will flow out. All of it. The people on this forum and those who are silently reading are intelligent and not without resources. Now that more people will know about it, more people of influence will be involved.

xoxo
Kritts

[al]

Yes it is tough, the never ending frustrations, and uncertianty.
No wonder the trust has gone; as one reporter asked; why the ambivalence/hostility from the medico's for so long?
Chins up, we can only hope that the suffering Dr Pearson so eloquently described, can be allayed by some knowledge.
Maybe the reporters should dig a lot deeper and really get to the truth, whatever that is.
Keep smiling.
oh Kritts, you look well, almost edible...

[tcmgpt13]

I believe the reason why a lot is not posted on the MRF is because even although they have an idea of about what morgesllons is, what they are finding for parasites which are involved varies somewhat among people. The exact species of those they have so far identified also does not seem to be known and I think they were trying to find someone who could accurately identify the parasites by exact names. Also they did briefly post some information about what type of parasties and bacteria they thought were involved (yanked off the site after a day). Since MRF is under such close scrutiny from those who would ridicule anything they say, I think I can understand why they do not want to continue to post information which so far has not undergone the required rigorous Western medicine review for publishing in a medical journal. Despite our impatience with the process those involved want to preserve their professional reputations. I can see why they are reluctant to say much in any official way. I do think though that these researchers have leaked (the one day post on MRF) some of this information to us, so that we are not left totally in the dark. I feel a profound sense of gratitude to those who persist in research into this highly controversial disease, one which many professionals discount to this moment as even existing. Especially since, unlike the allegations recently made by a newer forum member (or their doctor) MRF does not seem to be in line for government grants. Rather they appear to be operating and researching with insufficient funding. It is a shame they do not have a government grant because it looks as if they at least, unlike the CDC's rather dubious contract with Kaiser Permanente appears, intend to do serious research under microscopes, not do what looks like a social investigation into the mental status of those with morgellons. It seems rather questionable to me that for profit HMOs do serious research on anything other than their bottom line.

Here is a link to an earlier post I made which puts several links together about what might be involved in causing morgellons. I think since folks have been exposed to different sorts of triggers in the environment it is hard to pinpoint morgellons, as it seems to be such a complex disease. For some dinoflagellates may be involved, but for those not living near this sort of water it may not even be on the horizon. This is why I think the involved researchers are afraid to say "well it is this" in one patient when in another patient it may be "well it is that." And so on. I am willing to see that the picture may be a lot more complex than any of these folks know yet, especially as research into morgellons so far has had very limited funding. I believe careful sampling will have to be done from different areas of the country (at least to identify some of the parasites). Personally, taking into consideration the money constraints that the foundation seems to be under, I find it amazing that they are even this far along in identifying what is involved with this disease complex. Even finding the common thread appears to be a tough call.

http://www.morgellons-disease-resear...17741#msg17741

[MELISSAJ]

I haven't read EVERY word on this thread, but I will tell you what I know from a very informed source. They must be VERY cautious because everyone wants to discredit them. The public fear, the politics, the media, the patients are variables which cause the group to err on the side of caution when releasing information.

Personally, my experience the Dr. H's group in CO was nothing but class. I was treated better w/o ever getting over there than I was by the group I traveled across the country to see based on Dr. H's nurse practitioner's recommendation. The NP was more thorough when she called and wrote to let me know that they were sending the intake back to me because they were closing shop.

I truly believe that Mary Laitao and the MFR group truly want to make a difference and are not looking for the applause. Dr. H came out of retirement to do this after treating himself and Dr. M, later.

Also, things are VERY political within the Morgellons community. Just like everywhere else, people's belief system, work ethic, etc. causes conflict amongst the group. The group broke up and there is some strange history with some of them.

Anyway, last year, I learned that politics gets in the way everywhere and we just have to keep our chins up and believe that the right persons will advocate for us and NOT lose credibility which is what continually happens. I saw the CA group on TV locally and they looked like a bunch of .....off their rocker doctors. I'm sure the media played a big part, but this is why the other group is so tentative.

My five cents

[jonsi]

From personal experience "humanity" sucks. Look what humans do to each other in the name of "God", politics, freedom, power, greed, fear.

"Dark Souls" are very charismatic and know how to get what they need by trying to rob us of our "light", by putting in place value systems that are so unnecessary to our purpose of being here. But we listen and follow. It's time to listen and learn from the power of the silence with our own inner voice and intuition leading the way.

~jonsi

[tcmgpt13]

I do not think we are the only people who suffer from a serious chronic illness which has few satisfying answers. To me there is not much sense in assigning blame to some amorphous mass of "them" as if there are known answers to cure morgellons which are being somehow being hidden from us. Why if there were known answers to morgellons should they be hidden from us? I do not think railing against those people who try to help us is productive. Personally I think that being thankful for what has been done by this private group with limited funding is the least I can do. Since there seems to be very little reward for them in any real monetary sense, perhaps a word of thanks from me is not undeserved. I cannot think that my needs have precedence over another person's professional reputation. I may not like most doctors (in fact it is ironic that I would defend a doctor, having little from my own direct personal experience for which to thank them), but I can see that the way the Western medicine model is set up certain rules have to be followed to publish answers about what a new disease is and then suggest treatments for it. I can understand the reticence to publish answers in a reputable medical journal before one is absolutely certain about what is actually occurring in a new illness. Even with such certainty on the part of Harvey and his researchers there will yet be a host of neigh-sayers when the research is finally published, human nature being what it is, stodgy and slow to accept new ideas. Especially new ideas which when first presented are not proved by identical research results to backup the original research. In my mind that puts Harvey, his researchers and the MRF between the old rock and the hard place.