Just what is the definition of the word “new” anyway? This page on the CDC Site went up one year ago today. After one year do you think this should still be called “new” information? Well, if you watch this Video you can see by the timeline that “Yes’, when it comes to the CDC this still might be considered “new”.

Let’s take a look at a comment from the recent Washington Post article.

CDC experts are preparing the final draft of their report, which they hope to submit for publication in a peer-reviewed scientific journal sometime in early 2011.

Notice the language, “draft“, “hope to submit“, “peer review“. To me at least, these are all signs that no real help is coming from the CDC. In fact, I would say just the opposite. If you were researching a disease and stumbled upon the cause would you hide that truth for years on end? Probably not, unless you have a reason to actually hide it. In fact, every day we read stories in the news where researchers stumble upon the cause of some condition and then say more research is necessary. I mean honestly, what’s the big deal? If you find the cause or even think you have found the cause you announce it and give hope to those suffering, isn’t that the reason for the research? Even if you’re in it only for the money wouldn’t you want to alert all your potential customers?

On the flip side, if your study found nothing why would you drag your feet year after year and take forever to publish a peer review journal to say “We found nothing”?

At this point, the only conclusion I can come to from simply looking at the facts is that the CDC is purposely delaying, stalling, and dragging its feet, and they do have information they are not sharing. It’s hard for me to imagine anyone being capable of doing such a terrible thing, but then, unless you’ve been through what we have you couldn’t possibly understand the horror of it all.

Look at this quote from the recent article:

The CDC won’t say right now, for fear that releasing information might jeopardize the study’s publication. Mark Eberhard, director of the CDC’s division of parasitic diseases, said, “We were very clear from the outset that no one study, not even this one, would likely provide the whole answer.”

What information could they have that would cause them to say “fear that releasing information might jeopardize the study’s publication“? That doesn’t even make sense; releasing information would jeopardize its publication? Really? Interesting that the word “fear” is used. Also, notice that they say The CDC won’t say right now …” . Won’t say what exactly? Finally, Mark Eberhard states that

“no one study, not even this one, would likely provide the whole answer.”

Is Mr. Eberhard stating they have part of the answer? I think he is. Finally, and notice, they never use language such that what they are doing is to “help those who are suffering”, never have they used such language or shown any compassion. Whoever the “stakeholders” are that they spoke of in regards to the study you can clearly tell they are not the sufferers, we are not the stakeholders, there is somebody else with something at stake. None of the language used by the CDC indicates even the slightest sympathy for Morgellons sufferers. It’s as if the study is being done for, and run by, somebody else with a stake in the outcome. Even their recent comment indicates the goal (and worry) is the studies publication, not those suffering. Why even publish if there’s nothing to say? If there is something to say that could help those suffering from this horrible condition then they are causing great harm by not releasing that information. Not only does this delay affect the health of those suffering but if they are allowing the DOP diagnosis to be continually applied to those suffering (knowing full well that there is indeed a cause) I believe disciplinary action might apply.

For those suffering you are your best advocate, my prayers are with you as are many others. I think our friend Joe said it best on a recent post:

“Given the current situation for Morgellons and all it represents, ultimately the sufferers truest hero is right in the mirror. I know what I went through. I did thank plenty along the way, but it the end it was sorting through what made sense and investing time, energy and money in getting well. Decisions I made on my own.”

I’ll leave you with this video, never give up, fight like hell for your health, it’s all worth it.

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Comments on: "It’s time to Pressure the CDC" (32)

  1. October 24, 2010
    American Medical Association Release “Morgellons is systemic”

    Small Bowel Capsule Findings Suggest that Morgellon’s Disease has an Organic Basis and is Not Psychosomatic in Origin!

    Daniel Chao, MD, David Cave, MD, PhD University of Massachusetts Medical Center, Worcester, MA.

    Purpose: Background: Morgellon’s disease is a poorly described, severe ulcerative skin condition that histologically is consistent with dermatitis artefacta. It has therefore been dismissed as a psychosomatic disorder, much as was the case with ulcerative colitis in the period from 1930 to 1960. We present the first case of a patient with Morgellon’s syndrome who had additional findings suggesting that it is a systemic disease.

    Case report: A 65 year old white female presents to us with an unexplained iron deficiency anemia. She had a history of systemic lupus and a 2 year history of severe skin ulcerations. The ulcers contained fragments of black material. She had been seen by multiple specialists who told her that the lesions were self-inflicted and that she should get psychiatric care. Physical exam was of note for numerous papules with erythematous, ulcerated centers measuring 2 to 12 mm located on the trunk, back, upper and lower limbs and outer ear canal.

    The ulcers were notable for sharply angulated corners and clearly demarcated edges. She had extensive scarring on her arms and legs. Her labs were notable for a hemoglobin of 9.1 g/dL with MCV 83.3, serum albumin 3.4, and ESR 32. ANA was negative. She had recently completed a course of intravenous iron. A video capsule was performed. This showed denuded villous patches in the jejunem, which were unusual for their sharply angulated appearance, similar to her skin lesions. Small bowel biopsies were normal. Skin biopsy showed hemorrhage and non-specific inflammation. Histology of the black debris from her ulcers suggested vegetable matter. Repeat capsule examination 6 months later showed spontaneous resolution of the denuded patches. Occlusion treatment on one limb led to some improvement.

    Discussion: This patient demonstrated cutaneous ulceration consistent with Morgellon’s syndrome, but she had co-existing evidence for systemic disease with iron deficiency, low albumin and small bowel villous changes consistent with a mild enteritis. This is the first time that evidence for systemic disease has been demonstrated in association with what has previously been considered a disorder limited to the skin. Further investigations are warranted in a larger patient population.

  2. Mr. Common Sense said:

    Interesting, truly goes to show that there really is no such thing as a “skin disorder”, if it’s come to the point where your issue is ulcerating your skin then there is truly something more sinister going on within the human body.

    However, I cannot find a link for this story and finding one person with a iron deficiency I’m not sure cut’s it with me. There’s no way the AMA think’s Morgellons is real.

  3. Mr. Common Sense said:

    I did find this which is probably where you got the info, thanks for posting it.

    http://www.nature.com/ajg/journal/v104/n3s/full/ajg2009492_10a.html

    However, if that is what the CDC found, or something similiar they wouldn’t be using the language they are in the article above.

    FOR THOSE READING THAT ARTICLE, DO NOT GO AND TAKE IRON, IT IS THE #1 CAUSE OF OVERDOSE LEADING TO DEATH BY NATURAL SUPPLIEMENTS

    • I agree 100 percent that the CDC is not acting responsible with this study from the start. The funding was not in place for a true study at $300,000.00 budget. (CDC didn’t respond to budget or study questions) The Dr. in the Washington Post article even made note about not having funding for one of the reasons of bowing out.

      This is a good thing with these doctors understanding how this illness is effecting more then just skin. This is encouragement for all of us! This will make it a bit harder for the CDC to blow this issue off and hold the CDC with something I like to call accountability! It will be ever so hard for the CDC to not move forward with a true study with the AMA making movements such as this study. I have a good feeling the CDC didn’t know the AMA was working on this study it all. The original link I did get this information was up and gone with in days with error 404 in its place.

      This is a tool in our quest to be heard and healed. Keep praying and don’t give up!

  4. Mr. Common Sense,

    As always, well said!

    I know that I have continued my own personal “experiments” to try and figure out just what factors may or may not contribute to my flare-ups. Thus far, the only thing that I have found to be consistent is that my Rain Soft water softener definitely seems to lessen my symptoms…

    Prayers and love to all!!!!

  5. well, The National Institutes of Health
    gives a reference number for morgellons.
    c17.800.518, here are listings for that reference number:
    http://search2.google.cit.nih.gov/search?site=NIH_Master&client=NIHNEW_frontend&proxystylesheet=NIHNEW_frontend&output=xml_no_dtd&filter=0&getfields=*&q=c17.800.518&btnG.x=765&btnG.y=87&btnG=search

    Morgelons is listed under the category of a skin disease (C-17 Diseases Dermatologic and Connective Tissue) on page 6, here:
    http://www.nlm.nih.gov/mesh/2010/mesh_trees/C17.pdf
    Date of publication: 8/23/2009.

    This MeSH Tree Structure document first appeared
    10/20/2008, again on 8/30/2009 and again -as above- on 8/23/2009. All on the NIH website.

    So they have known about this and have referenced it since 2008…….. so WHY all the DOP diagnoses??? Do dermatologists recognize the veracity of NIH data?

    I cannot find any more information about Morgellons at the NIH website. Specifically, I was looking for a list of symptoms and possibly etiology/sequale (causes, and symptom progression). Nothing came up except the MeSH Trees. But it is listed as a skin disease, three years in a row.

  6. This is obviously my personal opinion and commentary and wondered if anyone else interpreted this Washington Post article the way that I did:

    It seems that Brigid, the Washington Post reporter, didn’t really do her homework, did she? Or were there other reasons to repeat this kind of information, lacking in substance? Could be this sensationalism at it’s best to sell newspapers or something else involved? Something seems rotten in Denmark…

    Either way, I think not only we should call the CDC, but write the Washington Post and demand a follow up article that depicts the truth, as well as emailing Brigid to ‘enlighten’ her with updated information.

    I for one am outraged that Brigid, who has known the suffering involved and had written about this subject before, would include such ‘naysayers’ to interview and once again depict us as crazy, with subtle innuendos…

    My hope was shattered too when the ‘delusional’ theory that doctors so wanted to pin on us because they didn’t know what this was or have the time to find out, had surfaced again–I thought we were through with that battle!

    I too had recently read the above report from the AMA and was happy to finally see something concrete from a source that physicians would find irrefutably credible, considering the AMA’s involvement. However, I know there are other independent studies going on showing the slime mold and other possible factors too, so why didn’t Brigid get on board with us and provide the public with updated interviews with microbiologists who have been providing us with these current findings?

    And where has Randy Wymore been? Was it reported to seem like he was talking about the entire pathogenic process within this infection not being fungal, or was it meant to infer that he was talking only about the fibers? In my opinion, this was rather vague too so most readers I assume would interpret his comment saying there is no fungal / parasite / insect component at all to this disease. Or was this just taken out of context in the interview? Because I can’t believe at this point Randy Wymore would deny a fungus element being involved; if he really does believe this, then he hasn’t spent very much time on any other aspect of this infection.

    I think it IS TIME TO CONTACT THE CDC– this is ridiculous and we will never get anywhere unless we speak up and demand to be heard. Ok, so should we all set a time to bombard them all at once?

    Anyway, thanks for listening to me vent my frustration…
    Pdidit

  7. I have emailed everything to Dr Pearson and Dr Mark Eberhards at the CDC. No responses from either of them
    Their emails directly are
    mpearson@cdc.gom
    meberhardt@cdc.gov
    Maybe if we barrage them personally we would get some response.
    I have discovered that disease and pestulance stops at 5:00 up there, on weekends, holidays and during an election.
    Score ones for the Good Guys though, I reported to the Florida Citizens Services in Florida, and he listened to the story for 2 hours asking me who I have contacted and how many are contacting me. If anyone on this blog Pam, MCS, John everyone give me some numbers that you have reporting to you. I am at well over 30,000 and am slammed. I need some numbers from anyone on this site You can email how many are reporting to you to my personal email.
    Thanks,
    Trisha

  8. PS I don’t mean phone numbers but estimates of how many
    are reporting to you. I can’t get any info from the CEHF, MRF. So it’s a black out there.
    Thanks,
    Trisha

  9. Janet Fedeles said:

    A “handful of scentists….” What are their names? What group of scientists and researchers is this journalist referring to? Because if research is really done, results will be found. And if our skin is examined, results will be seen. Period. And our sole researcher left is Randy Wymore??? I don’t think so. He needs to do more than examine fibers. If he has not seen fungus, bacteria or insects, what in the world is he looking at? His comments, in my opinion, do us more harm than good. And the comment from Joe….I am very happy to hear when someone has gotten well. But not all of us can do it alone. We have been trying for years and spending thousands of dollars on treatment protocols and products. Obviously, some of us need more help than what we can do on our own. The CDC’s “game” has become ridiculous. C’mon folks, let’s rally and do something! Calls to the CDC got the ball rolling before. Let’s start calling again and not stopping until we get some answers/action. Our silence is exactly what the CDC wants. And let’s not settle any longer for the CDC alluding to us being delusional. Incidentally, years ago, I took care of patients with delusional parasitosis. Their symptoms could not be compared to Morgellons. A completely different presentation. No doctor ever mentions this…they probably have never seen a patient with DOP. It is a very rare diagnosis…not one that thousands of people suddenly develop. As far as this being a disease being spread by the internet, do the people who claim this think Joni Mitchell spends all day surfing the net? Or Mr. Koch and his family? Who is delusional here? this is nothing but hype to make us look bad and it is maddening and only we can stop it. Janet

  10. With regard to the DOP Diagnosis Janet, I have had a trawl through a year and a half of my doctors medical records of my treatment and visits (still waiting for “permission” to view the hospital ones). They are littered with misquotes, assumptions, outright false statements -much of which has bee refuted by witnesses — and a statement by a psychiatrist that “because i would not give permission for a private doctor to be contacted, she ‘has a feeling that there is a underlying psychopathology’. I won’t address spelling and grammatical errors in these records, but suffice it to say that it is evident that the medical community is eager to pass patients over to the waiting arms of the psychiatric community based on assumptions in the absence of any clinical physical investigations. So much easier than doing one’s job, earning one’s fees or practicing evidence-based medicine. No wonder so many doctors are so despised by so many patients.
    The telephone numbers at the CDC continue to give only recorded messages. Perhaps a (written) letter campaign to Pearson and Eberhardt would provoke a response.

    • I have consistently predicted these interminal delays, in my Blog, which I have mostly taken down.

      SARS, Avian Flu, Swine Flu, Cholera (in Haiti), all within days are indentified, as well as the source nation, and hospitals and health authorities are notified, etc.

      So you are right. the CDC will offer nothing. They are delaying as long as possible, like truat schoolboys, avoid submitting their essays.

      Probably the actors in this CDC soap-opera are close to retirement, so they want to delay until the end is in sight. Then they can disappear, leaving us standing holding and empty bag.

      But what pressure can anyone put on them. They must know that most of the sufferers (AND I MEAN SUFFERERS), are on their last legs, physically, emotionslly, financially. So they have a pretty good idea that we will collapse in a cloud of dust when we finally see their report (which by the way will be so full of useless data, obfuscations, and out and out BS.

  11. It is getting to the point when my thoughts turn to litigation directed at health authorities, HMO’s and doctor groups. The class-action type, actually. Not an endeavor to be taken lightly, mind you. For example, I am aware that in the UK, as regards the social medicine service (under the Patients Right’s Charter), it is a right to receive BOTH diagnosis and treatment when ill. I believe it is one of two matters that an MP can address for their constituents. But social medicine in the UK is failing hundreds of not thousands of patients with this illness.

    • Janet Fedeles said:

      We need to stop thinking and start acting, is my opinion. This is how people with AIDES got research and subsequent medical attention. My records were also “tampered with,” Mr. C and this is fraud. It seems like there is nothing we can do but we can, at least, try. Sending emails to these guys at the CDC is a good start. Thanks for letting me know you only get recordings at the CDC. Any suggestions for what to say in the emails? There is so much to say…..
      Janet

  12. I emailed both Pearson and Eberhardt.
    BTW the email for Pearson should end with goV, rather than goM…. Trish, you are multi-tasking again, ain’t cha? You are such a Blessing to all of us… and with Mr C and you up to bat for us, we can’t but make some headway.Janet, I simply stated facts and that the release of theCDC data/report is urgently needed and asked for no further delay… some of the statistics that I am reading about the number of people with this illness are very concerning.
    While no specific number of cases of an illness quantifies an ‘epidemic’, numbers in excess of normal expectancy are considered to meet the definition. I think that when Trish gathers her data (UK and UK) we will see that we have met that bench mark.

  13. The time for action is long past. The only mass action undertaken by our group was the shift to Morgellons, and the disappearance of all symptoms except “I’ve got fibres coming out of my skin”

    Thus, the real cause, Springtails, has been forgotten. Plus I assume most sufferers are broke. So there goes any idea of mass protest, in Washington or anywhere. But please don’t give up trying ! I could be wrong, In fact I hope I am.

  14. Mr. Common Sense said:

    I’ve been loving the comments on this post, and yes, it’s time to do something, brainstorming right now. However, case in point, we were watching TV tonight when I saw a drug commercial for Fibromyalgia. This is almost word for word:

    “Fibromyalgia is thought to be the result of overactive nerves, Lyrica is thought to calm these nerves”

    So, there you have a drug commercial for a disease for which they admit they don’t understand and are using a drug that they are unsure as to what makes it work.

    And the CDC can’t tell us what they found? So, we can’t know the results (actual facts) of the study yet big pharma can market drugs which while they seem to help, they don’t really know why and for a diseases which they don’t know the cause?

    Go figure …

  15. I’ve been contaced by my local Radio Station to speak on Monday. Say your prayers that I may remain calm. Finally my county is interested. What about that????
    We will send you the link.
    Healing Begins at home and Yes my dear friend Belinda I am multitasking.
    I tried to walk away then it hit my emails like a ton of bricks. I can’t walk away with too many suffering.
    I have slowed down and still make phone calls every day.
    Some Dirfwad wrote “its all about you isn’t it”. I just hit delete. I promise it is not all about me and it is about everyone who is sick, and broke and being treated like crap by Doctors.
    This spill is so bad that a man in Boca Raton died from the Corexit. What a mess. Do not eat any GULF SEAFOOD.
    So many dying and children dying and it is a media blackout again.
    Same symptoms different Ground Hogs Day.
    I can not walk away and will not be silenced,
    Eberhard, Pearson, Exxon, BP and Haliburton will get back what they deserve. In Gods time not my time.
    I am now working with the Barefoot Doctors. Any help even 5 dollars will help. I can post the link ASAP
    Thanks,
    Trisha
    Love to All,
    Trisha

  16. The Crystals that people are seeing under their skin are very simply explained they are Charcot-Layden crystals.
    They have been found in skin, kidneys, Alzheimers, ALS, Biofilms ect. They are just the breakdown of WBC’s and RBCs from parasites ect. Dr Amin talks of them in his website under parasites http://www.parasitetesting.com

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2047431/pdf/amjpathol00405-0051.pdf

    I have a sneaking suspicion that this is what is in the plaques that people are seeing on Brain Ct’s of these patients.
    Sincerely,
    Trisha

  17. Mr C
    I have an idea (pro-active, time-saving and above board), not sure how to go about it, not sure I want it posted for global reading. Talked to Trish about it, but she is overwhelmed with work and does not really need another task on her to-do list IMO.
    Any chance you could email me, so I can ask you 2 questions? My correct email addy has ‘1935’ in it; I think your bog records two and the one without 1935 is wrong. Thanks.

    • Belinda
      I have been trying to work on something pro active but before sending it out I needed a fresh set of eyes on it. If you wouldn’t mind proof reading it for me please email me at faithwhoknew@gmail.com
      Thanks

  18. I am working on a backdoor pro-active project to advance the release of information to the public about Morgellons Disease. If you have some time to spare I would appreciate some help – email me at pottersfied1935@yahoo.com.
    Let’s get some action going on this and brainstorm some ideas, and BUDDY UP and TEAM UP on getting some work done. Trish can’t do it all, and well-paid government officials don’t seem in the mood to offer much help at the moment. If we are going to make any headway, we have to do it ourselves. Fight, come on, Fight!

  19. It might be useful to present information and letters directed at the CDC’s lack of response, via public comment on the 2010 National Nanotechnology Inititiative Draft Strategic Plan, which is open for public comment until Nov. 30, 2010. A portion of the draft plan is related to research on health and environmental impacts of nanotechnology. And the entire document is the proposed national policy on nanotech. Since this is the DRAFT proposal, they will need to enter the comments into the public record and respond to questions raised in the letters in the FINAL published Nanotechnology Strategic Plan whose membership includes the National Institutes of Health, the Dept of Defense, EPA, and numerous other federal agencies. Links to the full Draft Plan, rules for comment, and links to the National Nanotechnology Initiative website (check out the membership) are all on the Federal Register Notice page: http://www.federalregister.gov/articles/2010/11/01/2010-27358/request-for-public-comment-on-the-draft-2010-national-nanotechnology-initiative-strategic-plan
    A simple one page letter on the human health impacts related to Morgellons, and its possible links to nanotech can be emailed to: nnistrategy@ostp.gov
    It is a way to reach many government agencies at once, in the published record, on the human health impacts of nanotech and the lack of medical treatment, medical education, and even the lack of medical pathology microscopes of sufficent power to detect nano life-forms.
    I think the CDC is stalling not just because of trying to hide or marginalize what is happening, but also because of timing . . . they don’t want anything to upset the trajectory of their nanoplans.

  20. Joe Keleher said:

    Dealing with the CDC is pretty frustrating. It is sad that instead of being allies in the battle against Morgellons, they seem to be disinterested. Maybe I’m wrong. I wish instead of coming off as being secretive game players, I wish someone there…anyone there… would step up and say “these people are very sick and they need our help…let’s roll up our sleeves and help”.

    Janet, I didn’t mean to imply you should “do it all on your own”…what I meant was give yourself credit for any action you take and see yourself as a hero. I fear if people wait on the CDC or anyone else looking in Morgellons to give them solid answers, you may be waiting a very long time.

    Trish, I’m looking forward to hearing your radio broadcast! Go, Trish, GO! I am so glad you are doing all that you are. God bless you.

    In the meantime if anyone comes up with a rock solid plan toward getting the folks at the CDC to come out and play, let me know. I’ll support in any way I can!

    Peace to all- Joe

  21. so, do you think if the name ‘morgellons’ was changed to something else, would the CDC then recognize it? and if stanninger kept her ‘research’ out of it, maybe it would then be recognized as a problem. its way easier to change a name than an entire study.
    but isnt the whole point to get morgellons sufferes ( i am too) some relief/ answers? see, i really dont care the political side, i want this crap gone!!! i couldnt care less what they call it, GET RID IT!! MAKE IT GO AWAY! thats all i care about.

  22. This post stays on my mind daily. This is the thought that has come to my mind when I ponder how to take action.

    The CDC refuses to respond to us but they did talk to the Washington Post on the study. It appears they way to put pressure on the CDC is through the Media! They did feel the pressure to make so sort of comment to the post.

    Well thought out emails to the media I think is the way to go as for emailing the CDC does nothing. If the media is contacting them they will have to respond as they did to the Washington Post.

    I did do what I call a Media Blitz after reading this. If more take the time to send letters to the national press along with the washington post for more follow up the better.

    They don’t respond to our plea for help but they did comment to the post.

    Food for thought!!

  23. Torpedolynn said:

    Maybe posting what was already said. The DR. who got Aids reconcized. It took him something like 10 years to get it reconized. Before he took the situation in had all the aids victums were diagnosed on adverage as delusional. Sound familar folks? Maybe we should find that old gentlemen Dr. and flooding him with our pleas. Maybe he or someone he trust will step in.

    Just food for thought.
    In Light Lynn

  24. I think that another site took notice of this blog and started a action group. What the attempt is to get groups of people in each state working with one another. It is just starting out with informing what state/town you live in so that small support groups can be formed in each state.

    My thought is that here on this site is a good group of common sense thinkers and we should also see how many are willing to work as a team. Who knows someone with Morgellons like me may live down the street and I would never know it. I think it would be great to be able to support each other as we work on our state rep’s and Media outlets getting the word out. Small groups of people working to one goal.

    Many of us our alone and at the very least having people who get you would be great! My heart brakes everyday for other people going through this alone and scared! Even though I am sick beyond sick I can’t just not do nothing well others need help!

    I Live just outside of Charlotte NC if anyone in my area is willing to work as a team.

    Without action you can’t get a reaction!

  25. Joe Keleher said:

    I’ve been thinking the topic of CDC releasing/not releasing the results of their studies should not grow cold. I am certain they are intentionally shuffling their feet. And I wonder what could this mean?

    If they have found absolutely nothing new out about Morgellons, then why hold off on telling?

    If they have figured out some piece of the puzzle, getting this information out to the general public ASAP should be a priority. If the information is intentionally being held from those suffering, those making such decisions need to be held accountable.

    I plan to email both Dr. Pearson and Dr. Eberhardt and ask a sincere question- Why haven’t these study results been released?

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