NIH Undiagnosed Diseases Program - TAKE ACTION NOW!!!

[Sadsack]

Everyone:
I just got off the phone with NIH Undiagnosed Diseases Program, speaking first with a line operator and then up to a supervisor.
I was unable to get a clear answer as to why Morgellons is being rejected as a syndrome worthy of study. I know two very articulate people who applied and had lots of medical documentation and letters from their health care providers asking for their inclusion.
The "reason" for denial into the program...get this...is that "they already have a diagnosis". I made it very clear that NO ONE gets diagnosed with Morgellons - it is ALWAYS a "self-diagnosis" based on the afflicted researching their symptoms and finding the right match.
She then said something about there being a "parasitic disease" section at NIH that perhaps these people could look into. To this I said that the leading researcher into Morgellons has found NO EVIDENCE of parasites (Dr. Wymore).
I was polite but did not allow this "wiggling" to continue. I let her know that there is a ground swell of anger and frustration within the community about the government's apparent lack of concern about this rapidly spreading horror. I told her that many people are so debilitated that they cannot function, yet they are denied Social Security benefits because Morgellons is NOT recognized officially. I also told her that suicides are common, and that the NIH's position regarding Morgellons is unconscionable and suspect.
I told her to let Dr. Gahl know that specific actions against the NIH are the subject of discussion in the Morgellons world and that he should expect organized protests and publicity regarding this travesty.
I recommend that people start innundating the NIH with calls/complaints about this very obvious effort to side-step the issue. Here is the number: 1-866-444-8806
You will be asked your name and number; be prepared to give it to them. Stand up and be counted!
Also be prepared with factual information based on verifiable research. One of the best sites that I have seen that pulls it all together is: Morgellons: Unexplained Dermopathy.
Don't get into theories in your presentation, just stick with the evidence and the numbers of people afflicted, etc. Don't back down, but don't lose your temper and get abusive, etc. A sustained, rational approach to this will eventually wear them down.
Remember, the NIH is a FEDERAL PROGRAM paid for with your tax dollars. Their sole purpose for being is public health and disease enquiry. THERE IS NO REASON FOR THEM TO CONTINUE TO IGNORE MORGELLONS!!!

SS

PS - The supervisor is passing my call up to a higher supervisor who will call me back. I will report the results of this call when it occurs.

[Sadsack]

Katinka -

Is there an equivalent agency in Germany? We know there are many cases there, similarly dismissed. Maybe you can organize something on one of those German sites.
This is just horrible that the people who are charged with our welfare can be so negligent and derelict of duty.
I've only been fighting this for about 2 years, though I know I've had it much longer. Like you, I don't know how the people who've KNOWN what is wrong with them for all those years can tolerate the waiting, the sickness, the pain, the rejection from family, friends, and doctors. Sometimes I get so angry I get chest pains.
The only thing I can do is channel it into action.

SS

[niecy]

Search Results: morgellons

National Institute of Health recognizes Morgellons

Sadsack,

I am thinking that the National Institutes of Health have went farther than any other government organization so far. The first link above is a search at NIH that has nine mentions of Morgellon's.

The second link is the one Hilly posted here in February. I thought it was one of the best things that has happened for our cause, but that's just my opinion.

The CDC is the one that owes us an explanation, as they were supposed to reveal their findings in January of this year.

I don't know that just because Randy Wymore hasn't admitted to finding a parasite in this disease it means anything. Many people have been diagnosed with them regardless of his findings. I myself was approved for a study in the Parasitical division at NIH.....all lined up to go, then the director noted that I hadn't been out of the country and it disqualified me. But, that was one of the qualifications of that particular study. They have many at one time. If anyone with Morgellon's that has been diagnosed with any kind of parasitical infection could get in one of those studies, it would in fact be fantastic. The people that I spoke with said they leave no stone unturned when you do get accepted into any of their studies.

I did mention Morgellon's to them, and they said they have had thousands of calls about it. The woman told me that she felt eventually it would be studied there. She was actually very nice, and didn't speak to me as if she thought I was crazy, even if that's what she felt. I was treated very respectfully by everyone that I spoke to at their facility.

I personally haven't been diagnosed properly with a parasitical infection, although I am 100% sure that I have had, and still do have one. However, there ARE people in our community that have been. I would be very grateful if one or more of them would get into anykind of study at NIH. They most likely would soon see something different, and maybe just maybe someone with a conscience would pursue it.

Where there is a will, there is a way. We just need to keep pursuing the recognition. One day....someone will take note, and we will be respected as we should have been all along. That is my hope, and I have the faith in God to believe that it will happen, hopefully soon.

Niecy

[Sadsack]

Niecy -

Both CDC and NIH owe the victims of this horror something. While the CDC deals mostly with epidemiology, NIH has the capacity and resources to do an intensive, individual study. They are equipped to go much further with this than the CDC is, and their Undiagnosed Disease program is incredibly well funded and perfect for it.

Most DO NOT believe it to be a parasitic disease. I do know that life-like "things" are present in many people with Morgellons (I've had a few myself). But there is MUCH MUCH more involved, and I was not going to get put off with that "try the Parasitic Disease program". If REAL parasites are involved, they are not the central issue.

I am tired of the stalling that's characterized this thing right along. Saying that they "may eventually look into it" is not enough for me. They can and should do it NOW. I am no longer content with a few bread crumbs here and there. If you are, that's fine, that's your choice. But I believe that the only reason the issue has been pushed as far as it has is because of ACTIVISM. And it has not gone nearly far enough.

SS

PS - They were also very nice to me, as was I with them.

[Sadsack]

This was sent to me through a third party. The person who wrote this is unable to join this group because her computer access is at her job:

"I just now did something I've never done before (that is: 1. call the NIH; and 2. lose my cool). Let me explain: On the "Morgellons-Disease-Research' message board, "Sack Sad" posted that he just got off the phone to the NIH and asked everyone to please contact the NIH to support his attempt to get help. He cautioned us not to lose our cool.

But when I called them, try as I may I was unable to adequately 'contain my enthusiasm', if you will, that the NIH please listen to what the gentleman was trying to tell them...

Meanwhile, the 'action' I took was probably futile, but I did it anyway, and I hope others will, too."

Everyone, please remember that individual actions only occasionally yield big results - BUT - together, collectively, our little actions can make big things happen, too.

SS

[kmar]

Likewise, I had a very good conversation. I myself had been diagnosed with parasites too.

(Lyme) which Ginger Savely states 95% of Morgellons patients have tested positive for.......... well LYME IS a parasite disease such a malaria is.

Most don't realize that Lyme does involve parasites.

Yes it's a bacterium, but has many co infections of parasites.

The Lyme Morgellons connection that both Ginger and Dr. Stricker
talk about is very real and I feel the CDC is quite aware of this.



Some excerpts from the article:

http://www.naturalnews.com/025757.html


The involvement of ZVED in creating the CDC webpage for Mogellons clearly implies acceptance by the CDC that Morgellons is a disease involving not just fibers but parasites.



A specialist in infectious disease detection, Ahmed Kilani, claimed to have broken down two fiber samples and extracted their DNA. He found that they belonged to a fungus.

[Sadsack]

I don't have Lyme, but I did have a few "bugs". If you want to classify bacteria as a parasite, then I guess there's nothing I can say....but you are alone in that.
Not everyone with Morgellons has Lyme, and not everyone with Lyme has other possible co-infections.
And are you classifying "fungus" as a parasite, too???
What lab performed the analysis, and what parasites were you diagnosed with? And why weren't you prescribed anti-parasiticals to make your Morgellons go away?
Ginger Savely is very clear that Morgellons is not a parasitic malady; Dr. Wymore has not found any evidence of that, either. Dr. Amin believes it is from dental chemicals and not parasitic. Dr. Staninger believes it is nanotechnology that is creating "life-like" forms.

That is not the point, anyway. The point is that the NIH is attempting to shift this thing away from examination - WHY??? I don't think we are helping ourselves by feeding into that. I will continue to fight for us, and not play "good" and go away.

And I SAID they were very nice - and I was, too. But truly being "nice" is to address a global epidemic when they have everything they need at their disposal, compliments of OUR tax dollars. They are NOT a "private" hospital. They are there to SERVE US.

SS

[jonsi]

Good discussion here. I want to thank all of you for posting this stuff. (& I will be calling that NIH # SS gave in the first post here.)

In the white light,
~jonsi

[tcmgpt13]

I hardly feel that kmar is alone in feeling that parasites may be involved in the Morgellons disease process. Here is a site which has photographs of all the parasites which were seen by the person(s) who used a salt/vitamin C protocol to treat lyme symptoms:

lymephotos

I believe MDR is a great place to discuss theories (theories only mind you, as nothing anyone has said here has been proven by scientific fact). It is a real put down to another member to say:

"If you want to classify bacteria as a parasite, then I guess there's nothing I can say....but you are alone in that." How would you like it if one of us were to say to you "If you want to classify morgellons as a nanobot (or whatever you call it), then I guess there's nothing I can say....but you are alone in that."

First of all it would be untrue to say that, as some people here share your views about nano technology's involvement, just as many of us here feel that parasites are involved with these symptoms and in fact are not just co-infections of lyme or morgellons. It is just an opinion after all, no matter whose it is. So far there is no exact factual information to fall back on here. There are just a lot of interesting belief systems being presented, even by those "experts" you mention.

[posey]

A specialist in infectious disease detection, Ahmed Kilani, claimed to have broken down two fiber samples and extracted their DNA. He found that they belonged to a fungus.


[/color][/quote]


I was just reading this article and the FUNGUS aspect is a HUGE issue with me. I meant to post a reply to a thread about this article but instead posted a thread. I have hyphae growing all over me. I can't tell the derm this however, he has seemed to take more interest when I talked about it on my head and left off "whole body". It grows in my ears, nose, back, legs, and yes those especially personal parts. I keep my entire body shaved.

Which brings me to ask a question. Do others have small fibers fly off ther body's through out the day? My clothes are horribly filled with this after a few hours.

posey