Nov 032007

The CDC Investigation page on “Unexplained Dermopathy” (Morgellons) was updated on Nov 1, the relevant changes were:

old:

As part of CDC’s ongoing process to identify potential sites for the epidemiologic investigation, in July 2007 CDC published a solicitation notice about CDC’s planned investigation of this unexplained dermopathy in Federal Business Opportunities. In the notice, CDC announced that it may award a contract to Kaiser Permanente Northern California to assist the government in conducting the investigation. The notice also served to solicit the services of other organizations that may be capable of doing tasks related to the investigation, as specified in the notice. CDC will award a contract to the vendor that is identified during the solicitation process.

new

To learn more about this condition, the CDC is conducting an epidemiologic investigation. The CDC has awarded a contract to Kaiser Permanente in Northern California to assist the CDC in the investigation of this condition. The investigation will begin after review and approval of the scientific protocol by the CDC and the Kaiser Permanente institutional review boards (IRBs). IRBs have an important role in the protection of the rights and welfare of all research participants.

old:

When does CDC plan to begin the investigation?

The investigation will begin once the contract is awarded to the vendor that is selected. CDC will begin work with the qualified vendor immediately to identify and evaluate patients who are eligible to participate in the planned investigation

new:

When does CDC plan to begin the investigation?

The investigation will begin after review and approval of the scientific protocol by the CDC and the Kaiser Permanente institutional review boards (IRBs). IRBs have an important role in the protection of the rights and welfare of all research participants.

So, as expected, Kaiser was awarded the contract (there were no other possible candidates, based on the FBO specification). However the interesting news is that BOTH the CDC and Kaiser still have to sign off on IRB approval of the scientific protocol. IRB Clearance was originally scheduled for October 30th. I doubt this means much besides laggardness, but I’d be very interested in hearing just how they are going to organize a patient cohort of “persons who have reported themselves as having this unexplained skin condition” without any additional criteria.

21 Responses to “CDC Kaiser Update”

  1. Can you give me information on where to register
    for study of morgellons.

  2. A piece of advice for the cdc and doctors who’d like to discount this disease as mental…I’m a living example that Morgellons is not unique to only one protocol…It is manifesting into many forms….Mites infested my home and body over 8 years ago and have since nearly destroyed all that I was….and my family…for the super intelligent doctors looking for indisputable proof of existence of this infestation…I can give it to you in about 30 seconds….a simple filling of a bowl of water and raking down my clothes will produce hundreds of samples…so for you so-called intelligent doctors….stop being “fools”, showing your true ignorance and start searching for the truth…it’s in front of your nose, but YOU choose not to know…for obvious reasons…One thing is for certain…this is spreading at an alarming rate….so…cdc and doctors…continue going home to your families and playing the mighty entity of all knowing…one day it will hit you or your family…then we shall all see who is really…”dillusional.”

  3. I would be curious about who is really “dillusional.”

  4. Very easy to find out who is really dillusional…..

  5. Larry,

    The reason that “Morgellons” seems to have many manifestations is because what is considered, by some, to be Morgellons, is actually many other, “real” diseases. There’s no evidence that Morgellons is a real disease, but there’s often plenty of evidence that many of these patients have been correctly diagnosed, even though they ignore those diagnoses.

    In many cases, a diagnosis of a physical disease is accompanied by a diagnosis of DOP. This, of course, doesn’t mean that the patient isn’t sick, or that he’s imagining his symptoms. To the contrary, it simply means that the patient has revealed, through his interview with his doctor, that his beliefs about his condition are unwarranted, illogical, and unshakable, i.e., delusional.

    In some cases DOP may be the only diagnosis, but if the patient would stick with one good doctor, rather than hopping from one to another, in search of validation, the doctor, in time, would probably be able to pin-point other problems. But when the interview with the doctor reveals that the patient is delusional, other testing is not needed to confirm the DOP diagnosis. One can really be physically sick, and really be mentally delusional, at the same time. In fact, in the case of “Morgellons”, it’s quite common.

    tallcotton

  6. The sum total of your statement above is obviously the same ole same ole clinical double talk that has led to the current and future determination of DOP…It is one of the main reasons so many are still suffering with this disease and why many more will be infected…It is “THE WAY OF THE ESTABLISHMENT.”…You make an interesting assuption in the second paragraph above…”that in some way, “the patient.” is responsible for the doctors lack of enthusiasm to find the truth and that somehow lets all doctors off the hook for overwhelming diagnosis of DOP…There are many ways for TRULY concerned doctors to get to the truth…THEY choose to take the route of least resistance and diagnose DOP…In your last paragraph, again you blame the patient for, “going to the doctor to find out why he is being contstantly bitten by bugs with hopes for some relief.”… You think that it’s the patients fault because he is mis-diagnosed with DOP and seeks someone else with a true medical desire to help him…There are only two ways to prove delusion…(mental and physical exams) One without the other will produce ….a possible mis-diagnosis…but there’s one more ingredient that is necessary…and that is that…”Doctors have to be educated to the “FACT.”….that this is a disease and that most of the people seeking treatment are not delusional….Until that day comes…the spread of this well known phenomenon will continue until “even the establishment becomes infected, looks back on their foolishness and prays for someone to take it all away.” You can continue to play all of your games with this and pretend that it never was, but YOU can never say that the evidence of truth was never there…..The proof is in front of your face and “YOU CHOOSE.”…to ignore it….God help all of you for this calculated and convenient mis-treatment of humanity.

  7. One more thing…There will be no more comments from me…I have NO more time to waste with organizations, doctors and an uncaring establishments with their heads buried in the sand…My time is better spent helping my family members and friends to deal with this tragic situation…Also…don’t be so ingnorant to really believe that my friends and family members are all delusional….they all have the same symptoms…but….one day you will find that out for yourselves….It is spreading …”that fast.”

  8. Dear tallcotton- I am so upset with people like you whom have nothing better to do then to get on line and discredit those of us who have this terrible disease that is referred to as Morgellons. Let me first say that I am a 42yr. old R.N. who almost had my husband commited to a psychiatric ward when he first began complaining of, among many things, fibers coming out of his body. Keep in mind that at the time he was a 50yr. old who was quite mentally intact. He was the type that researched everything before believing it-if I made a statement he wanted to know of my source and details. Also note that prior to this nightmare we had never heard of morgellons. I must admit that this affliction, if you will, sounds totally insane, that is until you live it. It has totally devasted us financially. Worse yet our health had deteriorated so badly we couln’t get out of bed for 3mths. We have never done drugs but the medical profession went as far as to test us for illicit drug use. Our families have all but removed us from their lives- out of fear that this affliction is contagious. I can not say I blame them for several family members have seen the fibers, both coming out of my skin and under a microscope. Some of them didn’t believe at first either. It is a scary, misunderstood illness. We have turned to homeopathic measures like deworming- did you know that until the 1930′s people did this twice a year? It is actually quite good for you considering 90% of us walk around with 2lbs. of parasites inside of us. We worm our animals for health purposes. One last comment- D.O.P.- interesting how many of us see the same delusions- not to mention others are able to see these delusions too. I was under the impression most delusions were not visible to others and were also invisible!

  9. It virtually seems to be impossible for a believer in “morgellons disease” to understand that seeing and feeling things is not a delusion.

    THINKING WRONGLY about it all is

  10. There is no doubt, this is a real disease that doctors are unaware of. Whether or not these closed-minded individuals believe us or not, it’s still a real disease. It’s like them telling us there is no water in the oceans. I know there is cuz I have seen it. These fools here either have not experienced this disease, or they work for the pharmaceutical industry.

  11. Big Daddy, I’d like your opinion on a situation I’ve developed. A few days ago, in the process of letting our outdoor dog loose, I’d cut my thumb. Tonight, I’d noticed that it had become swollen, and, few hours later, my thumb began throbbing real hard. Oh, it hurt so bad, that I just felt that I had to squeeze it for some relief. Well, first, it started secreting a thick reddish-black fluid, and, then, a yellowish liquid began coming out of the cut. The fluid changed to a pinkish color, and, then, I disinfected and bandaged my thumb. I had to change the bandage a little while ago, and there are some fibers in the cut, now.

    Do you think what I just described means that I have “morgellons disease”? I haven’t microscopically looked at anything, but, do you think I should? Also, would it be a good idea to go see my doctor and describe my findings, or would he, likely, think that something had happened to my mind to make me start thinking and talking like that?

    Thank you, Smileykins

  12. No one can convincingly comment on this disease without direct experience…whether scientific or personal…Those who would like to play the “intelligent game.”…and pretend to know what they’re talking about is full of bologna…Delusion would be if someone had the feeling of being bitten and there was NO evidence to back it up…If I can rake my hands over my pant leg and it feels like sandpaper…then scrape my pant leg with a knife and collect my evidence in a receptacle, then put my evidence under a microscope and every sample is mites..”THAT IS NOT DELUSIONAL.”…So, for the idiots out there who insist they would like to use their intellect to determine that we are or aren’t delusional…just a little crazy at times…I say to you that…trust me…”Your time will come.”….when you will feel the direct experience of Morgellons…The more people out there like you, so called “smart thinkers”…. who do not believe, nor act on this real problem, will rush the spread of this, soon to be epidemic,,,,,You can sit on your buns and analyze all you would like and simply “WAIT”….for the inevitable to happen….It will be a crushing moment in your life….and one that you will most certainly..”DESERVE.”

  13. Larry, nobody can comment on YOUR health problems without direct experience. But I can comment that it is seems different from other people who claim to have “Morgellons”. They don’t have their skin covered with mites.

    If you have mites, then show them to your doctor, to make sure they are mites. An entomologist can identify them. It is possible though that you are mistaking something like skin flakes for mites. Itching and formication can have many causes.

  14. Don’t think I’ll comment on your foolishness….There are many ignorant people in this world and I think that you have proven to be at the top of the list…Have your fun and games….your day will come…

  15. Hi, Larry. Welcome back. I am sorry, really, but mites aren’t anything new, or disputable. I’ll take your word that you’ve had mites for over eight years, but it seems that mites shouldn’t be that impossible to eradicate.

    Aside from that, could you please take a moment to look at a couple of things that you’ve just said?

    Delusion would be if someone had the feeling of being bitten and there was NO evidence to back it up…

    Nuh-uh, Larry, that is completely wrong. Lots and lots of people may experience the sensation of being bitten without ever having even the slightest inclination towards thinking that anything has actually bitten them, and without ever feeling any sort of a need to look for some sort of physical evidence to back it up. Such people are NOT suffering from delusions, they just happen to know that a whole lot of things can cause biting, crawling, or stinging sensations, and, therefore, they don’t go making a big deal out of it, turning it into something it isn’t.

    If I can rake my hands over my pant leg and it feels like sandpaper…then scrape my pant leg with a knife and collect my evidence in a receptacle, then put my evidence under a microscope and every sample is mites..”THAT IS NOT DELUSIONAL.”

    Call me an idiot, but why can’t you get rid of the mites?

  16. This is such an unkind, unsympathetic web site. What’s next? A site for cancer patients who “brought it on themselves?” Your crusade to slander those who are experiencing something you know NOTHING about is so misplaced that it begs the question: what the hell is wrong with YOU?

  17. Heather: Instead of criticizing how things are said, could you please point to issues in the blog that are inaccurate?

  18. Heather, I hope you will just answer Sarah’s one simple question. I know I ask too many things (things that never get answered), but, please, what DID upset you?

    Do you already know that people who’ve heard about “morgellons disease” and want to discuss things with patients can’t usually post on their forums? That’s not the way to do people after sounding the alarm that the public is at risk of catching a new disease. They have a lot of unusual methods, but their basic message of “go away if you don’t have this” is not the way anybody stricken with a disease, so serious that they want everyone to know we’re all at risk, acts when they want it noticed! Patients take over just about any news article’s comments’ section, too, talking unnecessarily rudely to others, disregarding their questions, and any views outside their own.

    Notice that the owner of this blog welcomes everyone here to talk. We mind our own business discussing “morgellons disease” in this one little space. Patients want to educate us? Then, they just need to talk with a simple little exchange of answering easy little questions.

    Heather, some patients, really, think the stuff they’re saying on the web is tucked away from public view. I glean lots of information patients seem to forget saying as soon as they’ve posted it. People are seriously, seriously, SERIOUSLY ILL!!! No one is allowed to discuss it, though. They mention it as though it’s a little incidental thing and that their “morgellons disease” is the cause of it all.

    Everyone’s underlying illness is to blame. Doctors aren’t stupid, and neither is anyone who’s looked into this mess and seen it for what it is. People who think they have “morgellons disease” and/or “chronic lyme” believe, only, their cult doctors who tell them what they want to hear, do what they want, and take their money. Your nazi doctors’ experimentations are assisting in helping destroy your lives and spreading antibiotic resistance to the rest of us. Those who DO have delusional disorders, and don’t blame me, I never stated it, the Morgellons Research Foundation did, well, hell, read the headlines about what untreated delusions can lead to. No, who has to, anymore, it’s all online now! Pictures and videos, even. Look at this example:

    The Face of Morgellons

    http://www.flickr.com/photos/chamberlin2007/727459784/

    Heather, since you’ve brought up cancer, some “morgellons patients” state that they are cancer patients. If so, that would explain a lot towards why those people are going through their experience. It’s pitiful, unless, they’re doing like so many I’ve read accounts of and “diagnosing themselves”. Yes, some morgies admit to doing that with such serious things as cancer and multiple sclerosis.

    Lies, lies, lies tripping themselves right up as soon as they say things. All “morgellons disease” patients should do like EnviroGirl said in another comment on Morgellons Watch and get up there in front of Congress.

    Please do it. Now, I think I’ve said more than enough tonight. AND, it isn’t because I’m unkind and unsympathetic, it’s just the opposite. And, anyway, I survived DOP.

  19. SarahBoneDunn

    The better solution is to point to the accuracies. You guys are full of beans.

  20. Once, again, a reply only of ad-hominem attack, and nothing to do with the issues.

  21. Funny how it’s in my head that I have “Morgellons” when I never heard of it until I started getting bleeding sores that started shooting fibers and my right eye is practically non functional, I have another (now 3) “brain cysts”. And my stomach of steel (haven’t puked in over 10 years) is kicking out vomit every other night now.
    I’ve lost 35 lbs, everything hurts and got locked in a mental ward for going to the ER for help. Thank you butt-head hubby. Come home; after lying my way out, “wow, so glad I don’t itch or hurt anymore” Didn’t even find a mental issue with me, no depression, anxiety, NOTHING, still kept me for 8 days.
    Got home, and skin and health declines further and further looking for answers, come across Morgellon’s. OMG- every single symptom.
    Thanks for bringing me to FL dear (BTW- Hubby is Air Force, we live on a base).

    So, I guess it’s just all in my head. Like my brain cysts.
    Everyone who says this isn’t real should get struck down with this. I know that’s cruel, but I spent 8 days in the mental ward from 12 Monkeys, it was really bad. They accused me of making the sores myself and therefor being a danger to myself. ERGH. Now it’s worse and hubby says, “Oh, that’s probably this…” or “It must be the flu…” discount and disbelief. Just like them.

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