In August 2006, Mary Leitao, the inventor of the Morgellons appellation and founder of the Morgellons Research Foundation, came under some scrutiny for lack of accounting for monies donated to the MRF. She had this to say:
“It has been the most bizarre situation,” Ms. Leitao said in an interview. “We’re talking little, tiny chunks of money. I will tell you, the year 2004, there were $318 worth of donations. And $100 of those came from me. I donated a check to my own foundation to jump-start us.”
http://www.post-gazette.com/pg/06226/713319-85.stm
Yet, three month’s earlier, she had personally signed the 990 tax form for the year 2005, which listed donations of $17,165 and expenses of $2,819 and $1,715 on a new computer listed as an asset.
Why then did Leitao attempt to characterize the money involved as “tiny chunks”, when clearly thousands of dollars are involved?
The 990 form is available here:
http://www.guidestar.org/FinDocuments/2005/020/723/2005-020723970-02561e28-Z.pdf
(Free registration required)
Apparently $10,000 was donated by one person, who was then not able to get any information as to where the money went.
http://morgellonsgroup.proboards23.com/index.cgi?board=general&action=display&thread=1157702900
There’s a line from the play Hamlet, by William Shakespeare, that I find quite fitting, concerning the donations to the Morgellons Research Foundation. After the ghost of the dead king appears, walking over the palace walls, an officer of the palace guard says, “Something’s rotten in the state of Denmark”.
Irrational decisions, driven by emotion, or whatever the cause, usually result in tragic consequences. I think it’s a shame that the person who’d donated $10,000 didn’t even receive honorable recognition on MRF’s web site for making such a sizable contribution.
I clicked the link that Michael provided to see the IRS 990 Form that was filed by the Morgellons Research Foundation and I went right on in without registration being required. I’m just letting you know, in case some readers want to view the document, but didn’t try the link because they didn’t want to register. If you’re interested, try the link provided in the original post, and see if you get in.
TC
I was told that Dr. Staninger and Dr. Karjoo submitted Morgellons specimens to the testing lab, and the results are in. What’s holding up news of the results? I was told that they want 20,000 dollars before the results will be released. I expect that before this is over they’ll be claiming that FAR Infrared Treatment will cure the “Disease”.
Bait ’em
Hook ’em
Reel ’em in
$318? $17,000? What’s the difference, really?
A nonprofit need not file a 990 if it raises less than $25,000 a year. The fact that Morgellons filed one, despite raising less, makes me believe it wants to be upfront with its money. In reality, $17,000 in one year is not enough money to run a corporation, unless it is handing out penny candy in a one-horse town on Halloween.
All a doctor has to do is believe them, or pretend to, and then he (or she) could herd them up and march them off a cliff, like a bunch of dumb sheep. It makes me sick to see some doctors are doing, but you can’t tell a Morgie anything. If a doctor says he believes them, they are totally mesmerized. I wish they would open their eyes to the fact that there is no Morgellons and go and get the treatment they need for their diagnosed conditions. Everyone has talked till they’re blue in the face, but the Morgies just don’t get it.
I don’t know about the IRS laws of the state of South Carolina, but some states are required to file a complete return. It was reported that Mary Leitao refused to let other member examine the financial records. In my opinion, that looks very suspicious. I ask myself, is there really any money left in the kitty, or is it really just a hollow pie?
Oh, come on, Read The 990. The entire ball of wax of “morgellons disease” is founded on extremely ill conceived deception.
In my opinion, Dr. Staninger, Dr. Karjoo, and Shoshanna Allison are all three butting heads with Monsanto,the doctors opposing Monsanto’s biological envelopes and Shoshanna opposing the use of Aspartame. That tells me that they all have alterior motives. As I understand it, fiber specimens were taken from the person whose hands and feet were pictured in the fiber report. But, to me, that looked like fiberglass poisoning. I’m not sure whether any fibers were removed from greema leg. I think she had silicone migration from her prosthetic knee. It looks to me like the report was nothing less than a shell game, intended to confuse the reader.
There’s another outlandishly unreal & slimey “doctor report” on the fiber disease forum. I hate that these poor patients are like sitting ducks for such predators.
Michael, what’s the deal with the posts? So few, on such a hot topic. Are you moderating for comments only pertaining to the topic?
Nope, I’m approving all comments (except for one “you are stupid” comment from Gillian, which I deleted).
Leaving moderation off while I was on vaca was a bit of a mistake, I much prefer this slow pace of conversation.
Anyway, I think most Morgellons folk now have given up on the MRF, they have done nothing in the last three months. NMO is where the action is now
http://cherokeechas.com
SBD – mind you don’t end up on this page: http://cherokeechas.com/quote-em.htm
Oh wow. That’s quite clever… my favorite is Pinocchio.
My God I live in Vancouver Canada and i have this condition also.But i used to live in Texas a about 20 years ago.I am an ex-Marine Nam years vet. I got 121 IQ and let me tell you buddie the dam sores on my legs and arms and a few under my eyebrows and all the little balck specs and haird like stuff isnt my imagination some folks need to get a life and did you know that it was not that long ago they said an insect couldnt carry a diease.Until they admitted it 1ooo died from yellow fever.So grow up shut up in less you got some helpful feed back people are suffering and if you think it isnt real i will give you my address and come stay over for awhile IF you dare.
Hello,
No one has said that your symptoms aren’t real. Being delusional doesn’t necessarily mean that a person is “seeing things” that aren’t there. Being delusional means that what a person believes about their experiences is unshakable and not founded on reason. Since you obviously do have a health problem, wouldn’t it foolish for anyone in their right mind to come spend time with you, not knowing whether or not you have something contagious? You could have anything from poison ivy to AIDS. But, being an ex-marine has nothing to do with this. Neither it, nor your IQ, prevents you from being delusional. What did you doctor say about your condition?
TC
My God, Chris, see a doctor, and follow their advice. My IQ’s higher than yours, and I was loco with DOP for a couple of months before I ever heard of this “morgellons disease” bullshit. Click onto Tall Cotton’s , or my, name. When our minds mess up and make us believe abnormal things, we need help in the worst way. Try to settle down, and trust what a doctor tells you. Heck yeah, I believe you, with all of my heart, when you say, “the damn sores on my legs and arms and a few under my eyebrows and all the little black specs and hard like stuff isn’t my imagination”!!!!! I hope you can get well, and soon.
tallcotton, smileykins, and Michael in charge – your ignorance is astounding
you have no qualifications to be saying the things you say
do not ask for examples just read your posts
to the tweaker, tall cotton, your inference of staying away “you could have anything from poison ivy to AIDS” is fucked up. do you think you could catch something by observation? there would be no health threat imposed upon you. this person’s symptoms would be obvious even to an idiot like you, and your entire fucked up part in this sham of a site would go to hell.
either you really are ignorant – or you are just a prick.
the same goes for you smileykins and Michael – the other two in this ridiculous trinity. 3 in 1 ?
this site is misleading
it consists of lame self authored articles inundated with cut and paste verbiage
information regarding health issues posed as opinions is easily interpreted as diagnosis
your opportunities to cause harm to those who believe you what you are preaching are great
let the cdc make determinations and keep your fucked up rhetoric to yourselves they are launching their task force after the year’s end
whoever runs this site stays anonymous supposedly because of fear of harassment by morgs?
the more probably reason for anonymity is to keep from being shut down or taken to court
the person directing the morgellons task force is not anonymous
his contact information is readily available, and he returns those that leave messages
why not just refer to the cdc and let it be
you overstep your boundaries with your opinions relating directly to a post in need of help
do them a favor and just go away – close this sham down on your own
stop debunking the obvious or at least face it publcly
ik
So Ivan, you think “see a doctor, and follow their advice” is misleading?
I’ve read my posts. I’d be happy to correct any problems with them, but you’ll have to actually point them out first. Please be a bit more specific.
Ivankipling,
You’re a very silly person, Ivan. You havn’t a clue what my qualifications are, or what level of education I have. And for that matter, you’ll never know. My qualifications are none of your fucking business. It doesn’t take a rocket scientist, anyway, to know that Morgellons is NOT a disease.
I never doubted the person’s symptoms. The problem is that a whole lot of diseases cause the same symptoms that are being referred to as being those of “Morgellons”. There is no Morgellons. There never was, and there never will be. You can keep your “so-called” disease if that’s what you want, but I am here to prevent others from being deceived by the Morgellons nonsense.
The CDC already knows that Morgellons is synonomous with DOP. But, in the meantime, people are jumping onto the Morgellons bandwagon because of all the internet hysteria, and they’re taught to distrust their doctors and ignore accurate diagnoses. They forego needed medication, and there is where the harm lies. You are part of the problem, but you’re too ignorant to realize it.
I have nothing to retract. I havn’t posted anything other than what I know to be facts. Am I an expert on “Morgellons”. Yes, as a matter of fact, I am. If that bothers you, you can kiss my ass.
Tall Cotton
Tall Cotton
Ivankipling, you’re making it clear that you have some very serious problems and misconceptions. I don’t know what is the matter, but I’d like to suggest that perhaps instead of thinking of “morgellons disease” as something that claims victims (and needs to be solved by an outside source of power such as those you are looking to), that those who can try to empower themselves will continue to read Michael blog, and do so for themselves. Many such patients are active participants in futile searches into science fiction and conspiracy theories, rather than learning useful things about human anatomy and their immune systems. Perhaps as far as anyone’s skin may be concerned, they could benefit in looking up some localized fibrosing disorders. The reasons behind them them are unknown, but the suggested causes include genetic, infectious, and autoimmune mechanisms. Here are some key words, and definitions, for anyone trying to get on track. With so many people looking at their cells with microscopes…ah, nevermind.
Epidermis:The nonvascular outermost protective layers of skin, of up to 30 layers of stratified squamous epithelium, covering the dermis.
Dermis: The sensitive connective tissue layer of the skin located below the epidermis, containing nerve endings, sweat and sebaceous glands, and blood and lymph vessels.
Epithelial Tissue: Membranous tissue composed of one or more layers of cells separated by very little intercellular substance and forming the covering of most internal and external surfaces of the body and its organs.
Loose Connective Tissue: The most common type of connective tissue in vertebrates. It holds organs in place and attaches epithelial tissue to other underlying tissues. It also surrounds the blood vessels and nerves. Cells called fibroblasts are widely dispered in this tissue; they are irregular branching cells that secrete strong fibrous proteins and proteoglycans as an extracellular matrix. The cells of this type of tissue are generally separated by quite some distance by a gel-like gelatinous substance primarily made up of collagenous and elastic fibers.
Collagen: The main protein of connective tissue in animals and the most abundant protein in mammals, making up about 40% of the total. It is one of the long, fibrous structural proteins whose functions are quite different from those of globular proteins such as enzymes. It is tough and inextensible, with great tensile strength, and is the main component of cartilage, ligaments, tendons, bone and teeth. Along with soft keratin, it is responsible for skin strength and elasticity, and its degradation leads to wrinkles that accompany aging. It strengthens blood vessels and plays a role in tissue development. It is present in the cornea and lens of the eye in crystalline form. It is also used in cosmetic surgery and burns surgery.
Enzyme: A protein that speeds up (catalyzes) a chemical reaction. Some RNA molecules also have catalytic activity, and they are referred to as RNA enzymes or ribozymes. By selecting only certain reactions from among a multitude of possiblities, enzymes determine what happens in cell. A molecule in a cell can undergo many reactions, even in the absence of enzymes. However, these alternative reactions progress extremely slowly when not catalysed by enzymes. As a result, enzymes select those reactions that are useful to life. In this way enzymes transmit the information in the DNA and use this to direct the metabolism of the cell. Like all catalysts, enzymes work by providing an alternate pathway of lower activation energy for a reaction. This speeds up the reaction, sometimes making it many millions of times faster. Chemically, enzymes are like any catalyst and are not consumed in chemical reactions nor do they alter the equilibrium of a reaction. However, enzymes do differ from most other catalysts in showing much higher levels of specificity. Enzyme activity can be affected by other molecules. Inhibitors are molecules that decrease or abolish enzyme activity; while activators are molecules that increase activity. Drugs and poisons are often enzyme inhibitors.
Elastin: a protein in connective tissue that is elastic and allows many tissues in the body to resume their shape after stretching or contracting. Elastin helps skin to return to its original position when it is poked or pinched. It is primarily composed of the amino acids glycine, valine, alanine and proline. Elastin is made by linking many soluble tropoelastin protein molecules, in a reaction catalyzed by lysyl oxidase, to make a massive insoluble, durable cross-linked array. Elastin is particularly abundant in large elastic blood vessels such as the aorta. Muscles do not use elastin for their mechanical function. Elastin is particularly important in arteries, lung, elastic ligaments, skin, bladder, and elastic cartilage.
Keratin: Any of a group of scleroproteins or albuminoids that contain large amounts of sulfur and are the chief structural constituents of hair, nails, and other horny tissues.
Scleroprotein: Any of a class of generally insoluble proteins found in skeletal and connective tissue. Also called albuminoid.
Hyalizination: A form of tissue degeneration that results in a translucent product that is firm and tough, yet flexible.
Fibrous: Composed of or characterized by fibroblasts, fibrils, or connective tissue fibers.
Fibroblast: A cell that gives rise to connective tissue
Fibril: A minute fiber
Secrete: To generate and separate a substance from cells or bodily fluids.
Protein: Any of a group of complex organic macromolecules that contain carbon, hydrogen, oxygen, nitrogen, and usually sulfur and are composed of chains of alpha-amino acids. Proteins are fundamental components of all living cells and include many substances, such as enzymes, hormones, and antibodies, that are necessary to the functioning of an organism. They are essential in the diet of animals for the growth and repair of tissue and can be obtained from foods such as meat, fish, eggs, milk, and legumes.
Proteoglycan: Any of various mucopolysaccharides that are bound to protein chains in covalent complexes and occur in the extracellular matrix of connective tissue.
Mucopolysaccharide: Any of a group of polysaccharides with high molecular weight that contain amino sugars and often form complexes with proteins. Also called galactosaminoglycan, glycosaminoglycan.
Extracellular Matrix: Any material part of a tissue that is not part of any cell. Extracellular matrix is the defining feature of connective tissue. ECMs main components are various glycoproteins, proteoglycans and hyaluronic acid. In most animals, the most abundant glycoproteins in the ECM are collagens. ECM also contains many other components: proteins such as fibrin, elastin, fibronectins, laminins, and nidogens, and minerals such as hydroxylapatite, or fluids such as blood plasma or serum with secreted free flowing antigens. In addition it sequesters a wide range of cellular growth factors, and acts as a local depot for them. Changes in physiological conditions can trigger protease activities that cause local release of such depots. This allows the rapid and local activation of cellular functions, without de novo synthesis. Given this diversity, ECM can serve many functions, such as providing support and anchorage for cells, providing a way of separating the tissues, and regulating intercellular communication. The ECM regulates a cell’s dynamic behavior. Many cells bind to components of the extracellular matrix. This cell-to-ECM adhesion is regulated by specific cell surface cellular adhesion molecules (CAM) known as integrins. The integrins transmit mechanical stimuli from the ECM to the cytoskeleton.
Reticular: Resembling a net in form; netlike
Cell: The smallest structural unit of an organism that is capable of independent functioning, consisting of one or more nuclei, cytoplasm, and various organelles, all surrounded by a semipermeable cell membrane.
Lymphocyte: Any of the nearly colorless cells found in the blood, lymph, and lymphoid tissues, constituting approximately 25 percent of white blood cells and including B cells, which function in humoral immunity, and T cells, which function in cellular immunity.
Histiocyte: A relatively inactive, immobile macrophage found in normal connective tissue. Also called fixed macrophage.
Macrophage: Any of the large phagocytic cells found in the reticuloendothelial system
Phagocytic: A cell, such as a white blood cell, that engulfs and absorbs waste material, harmful microorganisms, or other foreign bodies in the bloodstream and tissues.
Reticuloendothelial System: The diffuse system constituting all phagocytic cells of the body except granulocytes including the cells lining the sinusoids of the spleen, lymph nodes, and bone marrow along with the fibroblastic reticular cells of hematopoietic tissues.
Granulocytes: Any of a group of white blood cells having granules in the cytoplasm.
White Blood Cells: Help protect the body from infection and disease through specialized neutrophils, lymphocytes, and monocytes. Also called leukocyte, white corpuscle.
Granules: A cellular or cytoplasmic particle, especially one that stains readily.
Cytoplasm: The protoplasm outside a cell nucleus.
Protoplasm: The complex, semifluid, translucent substance that constitutes the living matter of plant and animal cells and manifests the essential life functions of a cell. Composed of proteins, fats, and other molecules suspended in water, it includes the nucleus and cytoplasm.
Cell Nucleus: A large, membrane-bound, usually spherical protoplasmic structure within a living cell, containing the cell’s hereditary material and controlling its metabolism, growth, and reproduction
Infiltrate: An abnormal substance that accumulates gradually in cells or body tissues
Perivascular: Around the blood vessels
Diffuse: Widely spread or scattered; not concentrated
Fibrous Trabeculae: Rod-shaped structures of fibrous tissue
Did You Ever See This On The CDC’s Site & Click Onto Their Link To Read About Morgellons?
Excuse me, here is something that may help get someone get started. You can refer to the definitions above.
Connective tissue within the reticular dermis has a dense concentration of collagenous, elastic, and reticular fibers that weave throughout it. These protein fibers give the dermis its properties of strength, extensibility, and elasticity. There are fibrosing skin disorders, such as, for instance, morphea, which is, if you look here, synonymous with quite a few things, including borreliosis and Borrelia burgdorferi
http://www.emedicine.com/derm/topic272.htm
The focus of morphea seems to be collagen fibers, which become altered with thickening and hyalinization. In the early inflammatory stage, a lymphohistiocytic infiltrate, perivascular or diffuse, is often present in the reticular dermis and the fibrous trabeculae of the subcutaneous tissues; large numbers of plasma cells may also be present. The dermis is typically edematous, with collagen bundle swelling in the lower reticular dermis.
In the late sclerotic stage, the inflammatory infiltrate frequently disappears. Collagen bundles become thick, dense, homogenous, and eosinophilic, with collagen changes extending to the upper dermis and possibly also involving the panniculus, the fascia, and the muscle. Hair follicles, sweat glands, and subcutaneous fat are progressively lost as collagenous material accumulates.
Excuse me, again, that wasn’t the link to morphea I’d intended to include. I seem to have lost that one, but, upon looking, here is another skin disorder that may be connected to lyme disease, and morphea, called “Atrophoderma of Pasini and Pierini”.
* At first, only a single lesion may be present, but more often, multiple lesions 1-12 cm in diameter are present.
* Within 1-2 weeks, these lesions develop pigmentation and appear slate-gray to brown.
* Discrete new lesions may appear for 10-20 years; the lesions give the skin a moth-eaten appearance.
*In the late stage, the superficial blood vessels may be visible through the skin.
Some clinicians believe that IAPP is a late stage of morphea despite the distinct difference in the origin and development of the lesions. Morphea characteristically begins as a discrete circumscribed, erythematous-to-sclerotic plaque, often with a white center and violaceous border. IAPP lesions commonly coalesce with time, producing a moth-eaten appearance that is not seen in morphea. From a distance, the skin depression in lichen sclerosis et atrophicus, anetoderma, and resolving panniculitis may resemble this stage of IAPP, but they lack the pigmentation seen in IAPP.
Typical lesions of morphea and IAPP can appear in different areas on the same patient, as well as in adjacent areas of the skin. These findings may occur simultaneously, or one may precede the other. The significance of this observation is not clear, but it might support the hypothesis that IAPP and morphea are variations in the skin responses to the same abnormality.
Screening tests such as the enzyme-linked immunosorbent assay may be performed to detect anti-Borrelia antibodies.
http://www.emedicine.com/derm/topic40.htm
(Now, I’m done.)
to the tweaker, tall cotton, your inference of staying away “you could have anything from poison ivy to AIDS” is fucked up.do you think you could catch something by observation? ivankipling
I beg to differ, Ivan, but let’s play nice, and agree to disagree. And you’re right. You can’t catch anything by observation only. Problem is, as many sufferers know, even normal close contact can be a problem when it comes to Morgellons. We’ve yet to learn if it’s contagious, but if they recall the incident which triggered it–bird nest mites, broken water pipes,standing water in the house, trimming trees, specks on garden flowers and on their garden gloves,why not someone behind you in the restaurant, in front of you at the check-out,your barber’s scissors, the imported clothes you try on at that huge discount store which come from, what some call, third world countries. Clothes from China, though, are the worst. Go to that giant store, check out the clothes. Look inside the packs of men/women’s underwear and socks, cuddly jammies, tops and pants. You’ll see what I’m talking about. In other words, those with this horrific condition must spend many hours cleaning their homes and furnishings to stay ahead of it, which for most is impossible. Countless people (including a relative and two friends)transport whatever-this-misery is everywhere they go–on their clothes, on their skin. They wear a lot of sweaters and cardigans this time of year, expensive, gorgeous clothes,, but from 3-4 feet away, I can identify what’s scattered over them. Both girls must be immune to have carried them around for so long with no symptoms.. EArly in the disease’s lifecycle, if a scab on a lesion is disturbed, microscopic white thingamies tumble out, and either vanish or spring away. They are some of what you’ll find in people’s homes, in the soft upholstery, and in the carpet. Under the scope each one resembles a strange bundle of thread. No eyes, ears, mouth or legs, yet they can leap like a gazelle, and they know, instinctively, how and where to hide. They tumble rapidly in and out of your fingers, skidding under nails, and nail beds, too fast to be caught. And you think observers are safe, Ivan? Well, I beg to differ, friend.
http://www.nationsonline.org/oneworld/third_world.htm
Sleep tight, sweet dreams, Ivan.
the $318 was for 2004
the file above is for 2005
the 10,000 donation was made in 2006
June P. What you just described is how I’d thought a few years ago, as far as seeing the stuff that you’re seeing everywhere. It took over, and there was an abundance of it. I wasn’t very comfortable in having family members in to visit, either, for fear that they might catch it. It was literally everywhere. What you have described is similar to what all morgie people describe, and it is DOP. People have actual, visible, cutaneous symptoms. I did, from head to toe. That’s not a matter of “just inside patients’ heads”. There are a lot of conditions that cause DOP to manifest in people, and nobody has the same “disease known as morgellons”. They have DOP present itself, *because of their underlying conditions*. Nobody has the same illness in common, aside from the one illness that their separate, unique, illnesses have brought about. I know you can’t accept it, but the name, “morgellons disease”, is synonymous with DOP.
Texas Rose, so, knowing they’d never seen any prior financial reports, all was cool with Chas to let his sister donate a whopping ten thou. Is that the way it went?
I saw this on a morgie message board. ML has given away research money to some other major university, and not even made it known to her followers, by announcing it to them on her site. Having their money, that they donated to OSU, specifically, be given away elsewhere? I would nail her for answers, morgie people.
The more the merrier I say.
I posted, but when I submitted, I was reminded that I hadn’t filled out my name and e-mail address. I used the Back Button, and lost the entire post. What’s the right way to do it without losing what you’ve written?
June – Who the heck knows really, but fill out your name, email, type your post, then hit the submit button.
Maybe an elf somewhere in internet land didn’t like what you had written? Just a thought.
In the past some of my posts have disappeared into cyberspace and recently too.
Not even Michael could give me an explanation for this occurence awhile back, he assured me it was not him.
Chemtrails, Nanotech, and Morgellons
http://blog.myspace.com/index.cfm?fuseaction=blog.view&friendID=119374778&blogID=197142828
Chemtrails, Nano-Tech and Morgellons – Warning this information can change whirled views.
You thought you’d seen it all? Thought … all » chemtrails were a myth? Not looked upward in the last decade?
The good elves must be back in the system, I could not post the above information over the last couple of days.
Michael – I do hope you realise that I share every single link re: Morgellons that is either forwarded to me via email or links I have found myself.
If we want to thrash out the “Morgellons” argument I believe in laying it all out.
Smileykins, could you please elaborate a little for me on what this really means ? buyer beware ????
I received the above letter today in my email in box, personally addressed to me.
I am not nailing anyone for any answers, I haven’t donated a red cent.
MORGELLONS RESEARCH FOUNDATION MISSION STATEMENT AND GOALS.
A nonproft organization
P.O. Box 16576
Surfside Beach, SC 29587
Our Mission is to enable the cure for Morgellons Disease
The goals to accomplish the mission are:
• Enable scientific research into the cause, diagnosis and treatment of Morgellons Disease
• Identify consistent diagnostic markers to aid in diagnosis of Morgellons Disease
• Publish and share all scientific results
• Determine optimal treatment for Morgellons Disease
• Support and encourage prompt diagnosis of all patients with Morgellons disease
• Prevent future cases of Morgellons Disease
Committees established to enable the accomplishment of the goals are:
• Patient support committee
– Establish and maintain hotline for patients with Morgellons disease
– Email newsletter to Morgellons patients, updating research and clinical information
– Website updates and maintenance
– Continued patient registration tracking via Excel Spreadsheet
– Mapping of registrant locations via software to highlight disease clusters
• Physician liaison committee
– Communicate with physicians treating Morgellons patients
– Communicate with physicians suffering from Morgellons disease
– Network physicians to compare treatment regimens
– Promote communication between physicians and government health agencies
• Nurse liaison committee
– Communicate with nurses, and nurse practitioners, with Morgellons patients
– Communicate with nurses suffering from Morgellons disease.
– Promote communication between nurses and government health agencies
• Government Health agency alliance committee
– Determine point-of-contact person at each state health agency for Morgellons disease
– Determine point-of-contact person at each federal health agency (CDC and NIH)
– Communicate with state and federal health agencies
– Send case definition via registered mail to above agencies
– Email Excel spreadsheet of locations only (no patient information) to above agencies.
Fundraising:
• Complete business plan
• Complete fundraising kit (physician letters of support, supporting documents)
• Identify funding sources
• Submit grant applications
• Budget funds according to the Foundation’s needs
Media & Public Relations:
• Project Manage continued radio, television, and print coverage of Morgellons disease.
• Create and disseminate announcements for media coverage of Morgellons disease
• Develop and air Public Service Announcements of Morgellons disease
‘Disease’ Creates Medical Mystery
Though many doctors dismiss Morgellons as a delusion, for those who suffer it, the pain is real.
By ALAN BAVLEY
The Kansas City Star
http://www.kansascity.com/mld/kansascity/16093733.htm
June,
Fill out the message block for your post. Be sure to type in your email address and user name before submitting your comment. Avoid using the back button once you’ve started typing.
TC
If funneling donations elsewhere, without publicly announcing the plans, beforehand, to members of an organization, doesn’t seem to smell of a rat, well, then, far-out. (Yeah, “far-out”, all right.)
I probably shouldn’t have used the word “funneling”, but, rather, “doling out” research donations elsewhere.
But, really, this is quite newsworthy, though:
Gillian, other than providing a copy of that email letter on a message board, the person who’d said, “may the buyer beware” (in the section for the subject content of their post), made no further comments. If Texas Rose is correct in comment #26, then, perhaps the funds that have been dispersed to an anonymous “researcher at another major university”, rather than exclusively to OSU, is largely from Cindy Casey’s sister-in-law’s donation. Of course, the world doesn’t operate according to the ways Smileykins thinks it should, but I believe, at the very least, an announcement was in order on MRF website. In my opinion, since there is another major university involved with the research of “morgellons disease”, now, as well as other researchers waiting in the wings, somebody, and I presume it’s Ken Cowles, was lax in getting the press out about it, too.
Good word “far out” the whole morgies mess is really “far out” my oh my.
Michael – I have some questions, if you could possibly answer for me as honest as possible, the dis/misinformation is going to push my over the edge to insanity, and I want to live my life more than ever.
1. Should I go to the Morgellons Support Group?
2. Should I phone Dr Beverley Drottar MD who contacted me in a PM.
3. Who do I trust Michael.
I am scared and not scared to admit it either, because I know that you would be scared too, you do care. I want this over Michael I really do, and I want US to win, to end this terrible mess, I want to know the truth if I can, I have not done anything wrong.
Thank you for your help.
Gillian.
By the way, I am not putting hidden messages in any of my posts, I am not trying to avoid the truth, or confuse you in anyway.
I am typing straight from my heart, I need to stop thinking or I will self combust.
Nanoop Nanoop
Q. Should I phone my psychiatrist?
The dilemma being of late when I try to express to people outside of cyberspace what is happening to me, they can kind of imply that I am just living in a fantasy world, fixated on the internet and disease, conspiracies, bioterrism, cults you name it. I am not ADDICTED to the internet. In fact yesterday after pulling a night shift, knowing I had to get closer to truth because I fear death is near for me, I was so ill yesterday afternoon. I laugh now saying it was like an Exorcism!! Oh very nasty projectile stuff. Anyway got through it and much better today.
I am not interested in far out ideas it is junk, real junk, and I do not allowing this to enter my life.
I can not/will not/don’t want to pick up the phone and my shrink or whoever to say to me “What are you talking about Gill, just sit tight and you will be okay”. I can’t do it anymore, not another day. And I know that this man cares too.
Time is of the essence, some peace at the moment with my mum not being on the end of the phone. I haven’t even phoned her, but then again my parents both need the break and rest for a week.
Michael – Do you think I am getting somewhere with this?
ummmm how am I going to turn a buck telling people hypericum will fix them?
Its the simple things, Smilykins, always the simple things….