"Corrupt" Morgellons site

[Slovenia]

Anyone else aware of a website purporting to examine issues regarding Morgellons yet through very clever construction and wording actually tries to rubbish everything we are saying? Either you know of it or you don't (so I won't give it any more hits by mentioning its name) but it scores very highly in web searches.

Now you might say ignore it but I have even had my own Lyme specialist quoting from it recently!! It is a very dangerous site. A year ago I tracked down the owner of the site. He is a very dismissive character and what's more, despite his highly unusual interest in this issue, has absolutely no medical or associated scientific qualification whatsoever! He works in computing!

For someone without a medical background and who is not a sufferer to actually set up such a website is bizarre in the extreme. Still I suppose some people get their kicks in all kinds of weird ways. And it is not some simple "knock it up in an hour" site either. It has dozens and dozens of pages, all excellently designed and linked.

I come back to my doctor's comment. He said he'd seen on the web that the CDC had reported back and basically our problem is in our heads. I disputed this. Now I know where he got it from. The owner of the website recently posted an extract from some old "research" only just posted on another site. And then headlined it "CDC Report on Morgellons"!!!! What a con. He will not even allow comment on his site.

Through this man's expertise in the web he is getting it high in the rankings and before the very doctors who search to learn more and then dismiss us. My own specialist's comment the other day backs this up. That's why I am so angry.

Maybe someone should set up an almost identical looking spoof site and with the same web name. Ideas? Comments?

[scabdraggr]

Please check out the post that I just put up about a utube site for us and produced by me with help from all here that wish to assist.We don't nor will we take this lying down.If you are as you say in the med field then we need you to be a part of this if you will volunteer to do so.How about it? Let's kick some a-- from those that seek to ridicule us and stop the truth from surfacing.Today I'm more determined than ever before to right this wrong and I believe with all my being that it can be done.I won't lay down for anyone or anything until this truth is told again and again!

[treebill14]

First, You are so right.
We have to stand together and fight this.
Why is it that my doctor can be so concerned, frightened for me, as he takes a part of this crazy stuff out of my body, but when he hears of the M word he is no longer worried?
Seems to me there is so much more to this picture.
Like maybe we are all on let's say, the same pain killer, and the company making it, has shut people up, knowing what it is doing, but will no longer be making pills if it all came out.
Or we have all been exposed to something .
All I know is, I was in my kitchen and my attic had just been filled with cellulose spray in insulation. Upon the company not venting my attic, AT ALL, They say it lets blew. The testers told me, it over pressurized and burped .
It was everywhere and I lost everything.
But most of all, my fiance and I, rushed to the hospital with these sores appearing all over parts of our skin exposed to the air.
We didn't ,at that time .know the attic had done what it did.
Found out the insulation came from over seas, and we have been in a battle ever since. Just trying to get what we lost back.
But these sores which are just like your pics, never end.
My fiance thinks it is possible we are being somehow and through many things, exposed to something harmful ,and they knew how to cover it up.
All I know is if I am making this up in my head, then wasn't my doctor seeing things also when he went to go cut it out of me?
I have plenty of pictures, have been to so many doctors, including dermatology at Rochester Mayo in Mn. And have a Dermatology apt. with another next week.
All family doctors are telling us, it is in our heads.
I so would like one of them to go through what so many of us our.
Is there anyone in the medical field admitting they have this?
And why are we not giving this to them?
Sorry, so ,many unanswered questions I know.
I am past the why me stage, and pissed as he??
This is real and happening to so many, and they are blowing us off .
And worse, know one seems to believe what is happening to so many is real.
I keep asking my doctor for some great medication for my delusions, something to treat me then for what he says I have.
But he has given me nothing for these so called mind games he says I am suffering from, causing myself. That in itself seems so not right
I never thought I would go to my doctor with something so painful, hurtful and that needs treatment, and be told they will not help because someone else has said it is in our heads.
What happened to the oath to make us better?
Do they see what they are doing?
They are not treating something because they don't know what it is, but they don't seem to want to do tests to find out either.
This is why I feel there is much more to this than we know.
Doctors don't just give up so easy on unexplained illnesses.
You go in to the doctor with stomach problems , you have no idea why. and they will test you till the cows come home trying to figure it out.
So what is up????
Like I said in my intro.
After seeing the same doctor for years . And how he is aware of the lengths, and expense ,I have gone through, to keep my skin and body healthy and young looking.
How can he can even think for one minute , That I would all of a sudden start causing bodily harm to the body I have taken such great care of .
The Sores and pain , disfigurement it causes, how it hurts me to even look at it.
Still coming to his office trying to look my best, covering them up as best I can.
I keep asking him, HOW COME HE DOESN'T "T BELIEVE ME? how he could ever in all our years together, think I could do this to myself?
Some of my sores are so perfectly round and deep that he can't even explain them. They would have to be made by the best of surgeons.Which I am not.
And why doesn't he seem to want to do anything about them either.
Tests, creams, absolutely nothing?

[scabdraggr]

Stop going to drs as they will only cause you greif,especially the derms as they have a cash cow or golden goose to help with their beach houses,sports cars,GF's and bank accounts.Dr John Goden in Hendersonville,NC is a genius and a great derm but doesn't have this figured out but he does listen and will view evidence.Hurray for one with a heart and mind that is a good dr.I know of drs that treat m patients but no new ones.I went to a local derm for free as he saw me and wouldn't charge as he knew from my friend that I was broke financially.He wouldn't speak to me but his assistant did and he started with the dop BS and had to be embarrassed by me before I left.I knew who I was seeing that day and to my surprise I had spoken to his professor from UC-- that morning.He had told me to tell his student to pay close attention to me and listen to me.He turned red and was speechless as his professor is one of the few drs that treat m but have so many patients that he can't see any more.His student and my derm dr doesn't talk to me but will write me prescripts for help.I have a great ER story about M and drs that when time permits,I will post.It's a good one.My email is bluedog58@hotmail.com if I can be of assistance or moral support.

[Slovenia]

Hi scabdraggr, just to clarify things...I am not in the medical field as you say. Sorry if my posting gives that impression. But I AM or was a broadcast journalist. What's your Youtube link? We can support you if you post the link here.

[scabdraggr]

The reference about my utube link was a hypothetical situation being that I had asked for input concerning others opinions about my possibly putting up a you tube mini documentary based upon my research and findings.What,may I asked are you doing here today after an absence of two years?I normally wouldn't ask but stated that you were into the TV profession.Are you still involved with this.Do you suffer from M?I'm certain that you don't know of me as a researcher so I'll dismiss the comment about only 3 researchers being serious about this dilemma that's affecting this planet in such a negative manner.I assure you that I'm quite serious about my research into this dilemma called morgellons.What,in yout mind,denotes serious?Millions of dollars invested,thousands of hours committed to it,many others assisting one doing research?I hope not as this sounds like the CDC and how serious it was with their research.My point is that to be serious about this,in my opinion,is for someone to commit their life to it,to deny anything else in their life to be put in front of the commitment,to follow the evidence no matter where it leads one.To search for evidence no matter where it originates from.Aren't these attributes that define serious research?I agree that in many ways all three of them are serious but there are others that are also just as committed.Also,some researchers and teams of researchers are quitely doing their best to unlock this mystery without the public watching over their shoulders and demanding an answer.It's my belief that the best minds in this world are quite busy with research into morgelons.unbridled and anonymus they carry on even after the CDC report and it's millions invested in both money and time failed to come to a conclusion that helps anyone other than the status quo.We all want answers that are true from those assigned to protect us but for now we have been left to our own devices for a means to combat this.It's my belief that we can and will triumph over this dilemma with our passion, desire,and dedication to overcome this disease and to reclaim not only our lives but the lives of so many here on this planet.The CDC study failed to even look for possible internal issues that weren't from the three basic parasite groups but they instead chose to call us delusional,addicted,and ignorant.I'll take those over incompetent any day.If you're here to help lift those ridiculous classifications from the many sick and hurting individuals here on mdr and elsewhere then you are quite welcome to do so.I didn't mean to challenge you but it seems that I did anyway.I don't know you and you don't know me, so Hello and what's up with you?

[tcmgpt13]

That site and its owner have been discussed here many times in the past. Maddening to hear this man is still at it. I am also sorry to learn your doctor is being sucked into the misinformation that fellow serves up, especially if your doctor is one of the two European doctors I have noticed who often give presentations at the ILADS conferences, in Europe and the US. We already have too much negative publicity out there about Morgellons. I feel many at the CDC and Mayo should hang their heads in shame after issuing some of their conclusions, but of course they do not. The current medical dismissal of Morgellons syndrome is little more than the modern equivalent to the old medical wisdom that doctors need not wash their hands before examining different women who were birthing babies. Some medical attitudes unfortunately never change.

quote=Slovenia;88745]Anyone else aware of a website purporting to examine issues regarding Morgellons yet through very clever construction and wording actually tries to rubbish everything we are saying? Either you know of it or you don't (so I won't give it any more hits by mentioning its name) but it scores very highly in web searches.

Now you might say ignore it but I have even had my own Lyme specialist quoting from it recently!! It is a very dangerous site. A year ago I tracked down the owner of the site. He is a very dismissive character and what's more, despite his highly unusual interest in this issue, has absolutely no medical or associated scientific qualification whatsoever! He works in computing!

For someone without a medical background and who is not a sufferer to actually set up such a website is bizarre in the extreme. Still I suppose some people get their kicks in all kinds of weird ways. And it is not some simple 'knock it up in an hour' site either. It has dozens and dozens of pages, all excellently designed and linked.

I come back to my doctor's comment. He said he'd seen on the web that the CDC had reported back and basically our problem is in our heads. I disputed this. Now I know where he got it from. The owner of the website recently posted an extract from some old "research" only just posted on another site. And then headlined it 'CDC Report on Morgellons'!!!! What a con. He will not even allow comment on his site.

Through this man's expertise in the web he is getting it high in the rankings and before the very doctors who search to learn more and then dismiss us. My own specialist's comment the other day backs this up. That's why I am so angry.

Maybe someone should set up an almost identical looking spoof site and with the same web name. Ideas? Comments?[/quote]

[scabdraggr]

Focusing on the negative aspects of this media diemma will only add fuel and rcognition to his fire.No one needs to look this up and or go there as the hits are counted and given credence to spread his filthy spew.We can knock these people out with our intellicts,our dedication,our coming together without negative bickering and with some results from our endeavours that are coming from many of us.We only need to focus on the task at hand.That task is for us to work together to defeat this curse called Morgellons.I don't have time to donate to a fool.

[tcmgpt13]

Could you please clarify who you view as the fool here as it is a bit ambiguous? I think that Slovenia is right to be concerned about the effects a google search about Morgellons will have on doctors who will see that negative site listed close to the top of such a search, now and in the future. Looking up a search term on google only yields a search count from google and does not 'donate' hits to the site itself. The site itself gets no hit count unless someone actually looks up that site directly from that google search. Still ignoring the site is the best defense we have, but...there is that doctor Morgellons search issue which is problematic. I am not sure what the answer for that is. They will read all this in medical journals too.

Right now what we need are researchers who are recognized scientific researchers conducting Morgellons research with adequate funding. There are already clues out there as to where such research should point, such as a gastrointestinal study. After this latest fiasco we are left exactly where we started out, only we are now worse off than we were before. It does not matter how many amateurs here and there look to solve the mystery of this syndrome, such seeking will not solve the dilemma of being ignored by those in charge of health care. We need to pray for recognized researchers who actually look fairly and with an open mind beyond the more obvious surface problems people are experiencing. I believe the outcome of this latest 'research study' was already determined before the 'study' was even started.

quote=scabdraggr;88846]Focusing on the negative aspects of this media diemma will only add fuel and rcognition to his fire.No one needs to look this up and or go there as the hits are counted and given credence to spread his filthy spew.We can knock these people out with our intellicts,our dedication,our coming together without negative bickering and with some results from our endeavours that are coming from many of us.We only need to focus on the task at hand.That task is for us to work together to defeat this curse called Morgellons.I don't have time to donate to a fool.[/quote]

[scabdraggr]

I am so sorry that in my haste to post that I didn't make it clear to others that I was referring to the person with the web site that seeks to demean us here on mdr.Thanks TC for catching my grammatical error as I seem to do that at times with my thinking being slow to my moving,I hope and feel that no harm was done to Slovenia that provided the post.I was way too quick to respond without enough thought but my heart was in the right place just not my words.Anger towards some that seek to do us harm does no good for me.I'll pause before posting in the future.Slovenia is a friend!