June 2006

How many people have Morgellons?

The Morgellons Research Foundation has been organizing an effective media campaign in recent months. The media, especially local television, but now even CNN, has been lapping up the sensational aspects of the story. MRF has been spoon-feeding them little factoids that the media parrot out on-screen, with no question as to the validity or meaning behind what they have just presented to the public as established fact.

One thing that gets reported is the number of people who “have Morgellons”.

CNN: “thousands of others from various parts of the country complain of similar ailments”

FreeMarketNews.com: “Morgellons Disease, characterized by “a parasite-like infection that literally makes the infected person’s skin crawl,” has been diagnosed in thousands of patients in Florida, Texas and California, according to reports”

Reno-Gazette: “the foundation has registered more than 4,000 households nationwide in which at least one family member suffers from Morgellons”

KATU: “There are more than 4,500 people across the country who report they are suffering with Morgellons.”

Where do these numbers come from? If you go to morgellons.org, you will see a counter that currently says: “Number of Registered Households: 4512”.

This number comes from what is possibly the least reliable statistics gathering tool available, a tool so innacurate it usually comes with a disclaimer “not scientific”. That tool is the Internet Survey.

All that “4512” number reflects is the number of times the following survey has been completed:

Symptoms: (check all that apply)

o Lesions or sores
o Fibers or filaments on skin
o Itching or stinging
o Hair loss
o Joint pain
o Fatigue
o Granules or specks on the skin
o Biting or crawling feeling on the skin
o Mood disorder
o Memory or concentration problems
(ex: ‘brainfog’, short term memory loss)
o Vision problems
o Edema or swelling
o Other

Diagnosis by a physician: (check all that apply)

The Trouble with Cotton Socks

A few people on Lymebusters have problems with their socks:

BLW
I threw away my shoes and wore old socks and treated my feet with tea tree oil. This seemed to stop the pain.Yesterday I put on a laundered, fairly new pair of cotton sweat socks. I think I got them recently from the Dollar Tree store. Wow, my foot pain came back and feet started peeling on bottom.Also, when I did my castor oil rubs on my arms last night, I started getting out ‘white, cotton looking’ fibers instead of my normal black ones. Like the socks had entered my system.

H
I was applying a lot of different creams prescribed by the dermatologist and thought that what was happening was that the material from my socks was being caught up with the cream and being drawn into my foot. However, it is definitely being absorbed as a couple of weeks back I wore a pair of black socks with purple heels and toes – that evening when I was getting undressed a purple fiber about an inch long and quite substantial emerged from my heel.

JH
Just a suggestion, but drop the socks into boiling water before ever wearing them, then wash with borax and machine dry

B
For a while I wore plastic zip lock bags (cut to fit like a sock)over my socks so as not to keep contaminating my shoes. I also started throwing away my socks each day. I have been spending a bundle on socks. […] Now, however, a new situation has developed. It is minor compared to the previous foot infestation. Each night when I take off my white socks to throw them away, there are all these pieces of cotton fiber from the socks in webs between the toes and even balled up knots of sock fiber.It is not the sort of thing one goes to the doctor to show and tell,but each night it strikes me as very odd. First of all, the fiber is not on the top or bottom of the foot where the sock torches the foot but rather it is in between the toes. Maybe a single piece of fiber could go between toes occasionally. But every night to find a network of sock fiber BETWEEN the toes suggests some unaccounted for activity happening on my feet at the toe area.I do not wash these new cotton socks before wearing. I have never washed new socks before the first wearing. I have never had fibers stuck in webs and balls BETWEEN each of the toes. […] Yes, I have worried that the fibers are being drawn into the foot by these microscopic critters. They are definitely pulling fibers out of the new socks and practicing their knitting between my toes.

BC
Our shoes and socks were very infected with the white and black balls and fibers. We got news shoes and Gold Toe socks that are kinda thin with lots of nylon. I spray my feet, shoes, and socks with Woodward’s Diabetic Basics Instant Foot Sanitizer with benzalkonium chloride. This works pretty well but I still have toenail fungus.

22
My elderly friend with morgs bought some micatin spray from Dermatechrx and sprays it on her clean socks inside out the night before. It was on sale or she would not be doing this. She has clipped all of the cotton linings out of her underpants carefully leaving the rayon or nylon ones and then after these are laundered, soaks them in rubbing alcohol in ziplock bags.

H
Lots of different and inspired approaches as per usual. I’ve been washing the socks in Borax and changing them a few times in the day but didn’t wash them when new. At night after applying Special No 1 ointment, prescribed by dermotologist, I then apply petroleum jelly to create a seal. This has been quite effective in healing some of the lesions so I’ve tried this during the day too but the tingling persists.

QH
First of all – anything that comes into my house – if it’s fabric it gets sprayed with ammonia. New clothes get washed with a half-cup of ammonia added to the detergent. I don’t have carpets or curtains anymore. No fabric furniture. But do use blankets, and have had to get new mattresses (sprayed with ammonia)Every load of laundry I do gets ammonia in the wash cycle, not just new stuff. And, because I do chores around horses, and they are constantly wiping their noses on me, blowing their noses on me, etc., I buy shirts at the thrift shop. I wash those with ammonia and am just fine with that. No problemo – no itching caused by the thrift shop shirts – ammonia fixes stuff for me.

BLW
The socks i have been buying really have a lot of loose cotton fibers and balls on the inside. Today, I picke the stuff off before I put on a pair. Three hours later, I peeled them off and looked inside. All the loose stuff had re-appeared. Much was sticking to my feet and liked the area between my toes. I am coming to the conclusion that these socks are alive.

CM
I was initially infected by new cotton socks right out of the sack that I did not wash first. There is little if any doubt that cotton is one of several of the more ubiquitous vectors for this thing.


I think what we are seeing here is the result of the culture of belief within Lymebusters. Nobody steps forward to suggest to B that it’s quite normal for cotton from new socks to collect between the toes. Nobody tells BLW that his socks are probably not alive, and everyone has experienced cotton balls and fluff on their feet from new socks. Nobody tells H that, yes, the fiber was probably just caught in your foot cream. Nobody tells CM that there actually is rather a lot of doubt that cotton socks are a vector for a novel pathogen.

I think willingness to believe others that some of the above people have, is paired with a willingness to believe themselves. Hence whatever idea pops into their head, they believe without question. Questioning themselves (are my socks really alive?) is tantamount to admitting they might have made some mistakes in other area, and perhaps an indication that they were deluded in some beliefs.

Socks are interesting since most people have two feet. It would be a very simple matter to perform experiments such as wearing a cotton sock on one foot, and a linen sock on the other for a week, and see if there is any difference. You could use this technique to test the various (“different and inspired”) sock treatments, such as ammonia, alcohol, bleaching, borax, boiling etc.

But is seems some people don’t want to investigate, to find the truth. They just want to believe.

This uncritical desire for belief is ultimately damaging their health.

The Trouble with Thrips

Thrips are tiny winged insects, around 1mm (1/32th of an inch) long.

This is what they look like, life sized (on a leaf, look closely):
xxvegadv112702fig1.jpg

And here is what they look like under a microscope

xxwesternflowerthrips.jpg

Here’s a photo of some thrips that a Morgellons believer found on her skin:

xxxthrips445f.jpg
(Compare the one at the bottom left with the one in the previous picture)

Thrips infest plants. A serious infestation can have hundreds, even thousands, of thrips in a plant. Sometimes thrips swarm, they fly, and can land on your skin and bite, which can be painful. They can apparently even create lesions that they can get inside, a condition described as Thysanoptera dermatitis.

So suppose you had a thrips infestation, perhaps just on a houseplant, or perhaps you live in an agricultural area, or you have an orchard. Thrips are tiny (they can easily get through a normal window screen) and very hard to see when they are in the air. If you are closely inspecting your skin, then when the thrips land on your skin, it will be difficult to see where they came from. If you have a fertile imagination, it might look like they have emerged from your unbroken skin.

Now within the Morgellons community, there are mixed opinions as to the involvements of insects in the disease. The opinions fall thusly:

1) There are no insects involved with Morgellons, and people should stop talking about them.
2) Insects are not part of Morgellons, but it suppresses your immune system enough to allow insects to nest in your skin.
3) Morgellons is an insect infestation, the insects either create the fibers, or use clothing fibers to create cocoons, and that’s what we should talk about
4) Insects are part of the Morgellons syndrome, but we should not talk about it, as it will get us labeled as suffering from Delusions of Parasitosis.

In its doctor approved “Case Definition“, the Morgellons Research Foundation says:
The sensations are at times related to the presence of easily seen insects

On Lymebusters (the online forum that the MRF recommends), the thread entitled “Morgellons, (collembola?)” sums up the every shifting attitudes of some Morgellons believers.

O
It distresses me every time that morgellons is referanced to insects –such as insects crawling out of the body—this tangent can really confuse those who are trying to understand the morgellon syndrom..I have NEVER, in any remote way, made any observance of bugs-flies-etc exiting my body or crawling underneath my skin…

P
The insect theory can be harmful to us if not presented in the correct manner. I believe there is an indirect connection, phermonally speaking […]

Q
Those that have the insects hatching are suffering a very bad aspect of this – they need so much support and especially to be believed and not rejected.

P
We never told anyone they couldn’t talk about it and I apologize again if it sounded that way. We just didn’t want people to place the main emphasis of this disease’s symptoms on that aspect of it, since that is where our skeptics are getting their ammunition to dismiss us.

Q
But to disarm skeptics, any mention of insects should include the fungal / various causes aspect. Any skeptic that can’t figure out that insects and fungus can be connected is A) not too bright B) has an agenda/sponsor or C) works at UoG

O
I wish to clarify my stance–no doubt that insects can lay eggs and hatch out of the hide-skin-of many animals—

H
My theroey is that the Morg attracts other parrasites. I have personally whatched a fly hatch and fly out of my leg and watched a white furry bug eat its way into my heal,

O
We all have fibers–etc=====or defined as morgellons,some have this manifestation others some other presentation..we can not define it down to say morgellons is caused by this or that—this is what I see–That is what you see–but we all see fibers, right?SOO, I ask, why are the fibers created by so many different things?

Here’s how one of the administrators of Lymebusters (who has posted his own photos of Thrips) explains his own pro-insect belief, and the diversity of what people are seeing.

AH
[…]every time I would get bit by something in the spot where I got bit there would be a fuzzball most of the time they were the color of the article of clothing in the area that that I found the fuzzball in If I was wearing white socks they would be white or if I had something red or blue the fuzzball would be likewise I cant speak for my comrade cult members but I think that the critters that are responsible gather the fibers around them like a cocoon
[…]
And I am not saying that we all have the same thing but there is a common denominator that we all have –and that is Doctors are giving us all a bogus diagnosis that we are stuck with so we unite under the same banner to fight it

(Note that AH is just joking here, when referring to the “cult”, he’s referring to another recent post)

So what is the problem with Thrips?

The problem is the assumption, almost the dogma, amongst Morgellons believers, that they all have the same “thing”. That there is some new pathogen that they all are infected with that causes all of their symptoms. Any new symptom that someone professes to have gets included in the long list of symptoms that are allowed under Morgellons. Anything too outrageous or unique gets explained as a product of a suppressed immune system. Any mental issues get explained as neurological effects of “this disease”.

The problem with that is that they obviously don’t all have the same thing. They have a wide range of symptoms. The one thing they supposedly have in common, the fibers, vary as much as the symptoms. On the question of insects – some have them, and some don’t. Again, some believers explain this as the insects taking advantage of a compromised immune system. But you can explain anything as the result of a compromised immune system.

The trouble with Thrips is that believers unquestioningly accepted that tiny bugs can be hatched in their adult form directly through your skin, if you have Morgellons. If you have Morgellons almost anything can be accepted, no matter how outrageous. The key thing many Morgellons believers want is “to be believed”. By being part of a community that wants to be believed, they support each other, and hence they believe each other, easily glossing over all inconsistencies.

Unfortunately, by believing everyone and everything, some of them abdicate reason, and this gets in the way of them receiving appropriate treatment for their very real health issues.

Fibers on CNN

The recent CNN story on Morgellons (text version) was interesting as it focused on Randy Wymore’s examination of fibers, and actually showed his colleges removing fibers from a patient, and looking at them under a microscope.

In absence of any epidemiological studies, the only thing that makes the claims of Morgellons at all notable are the “fibers” that sufferers claim to have emerging from their skin. Now I’ve written quite a lot about this before, basically showing that fibers are everywhere, and that many of the photos of fibers shown can easily be identified as Kleenex, or clothing fibers.

The whole Morgellons case hinges around these fibers, which was the thing that originally got me interested – I think it’s high time that I get back to examining the fiber evidence, starting with the CNN video.

First of all, we have Dr Wymore in a thrift store, collecting fiber specimens from clothing with some scotch tape. The reporter then asks him if the fibers he found from Morgellons patients resemble clothing fibers. He responds “No, not at all, totally different”.

wymore-thrift-store.jpg
Here’s what Dr Wymore told me, on May 22, 2006:
You see, we do indeed find environmental contaminants in samples from Morgellons sufferers. Definitely cotton, likely from bandages and cellulose fibers, probably from tissue. But, we are not interested in the contaminants that are everywhere. We take the time to sort through the known fibers to examine in more detail the ones that look unusual.”

So what he’s saying here is that he ignores that fibers he can identify, and keeps looking until he finds fibers he cannot identify. I asked him if he did not think that in any sufficiently large sample of household fibers (laundry lint, for example), there would not be some fibers that he would be unable to identify – but so far he has declined to answer.

Later we have some footage of the Morgellons group examining patients, plucking fibers off them, and looking at them through a microscope. Dr Rhonda Casey, DO, points at a small blue fiber and says “That is definitely not a hair, the blue thing there”.

blue-fiber-on-skin.jpg

The fiber she points at looks exactly like standard tiny lint fiber. Probably blue cotton. She carefully take it off, and makes a slide.

This is what they saw”, the reporter says, and shows this picture:
microscope-blue-and-red.jpg
There’s a blue fiber in the middle that looks like a cotton fiber. For some reasons there are a bunch of other fibers that were not next to the blue fiber before. The clear ones in the middle look like cotton or paper, the large brown ones look like human hairs (at about 80 microns they are the correct size). The very dark lines look like the edge of a large air bubble.

We then see several other images, one of which is clearly a damaged human hair – you can even see the scales.
broken-hair-3-50.jpg

So what’s going on here? Randy Wymore is finding fibers that look different (to him) from clothing fibers. Well, notwithstanding that it’s almost inevitable that you will find unidentified fibers wherever you look, what might make ordinary fibers turn into the Morgellons fibers?

Let’s take a simplistic explanation. Say someone suffers from something that has symptoms of neurotic excoriations (they pick at their own skin, consciously or unconsciously). They are going to have many open lesions on their skin (forearms and faces being common areas). Now lesions are wet and sticky, so naturally they will have several tiny fibers stuck in them. Lesions also heal, so the tiny fibers become embedding in the new skin.

A few months later, just like a splinter, the fiber works its way to the surface of the skin. It may emerge at the original lesion site, or it may have migrated a few inches over. Is it surprising that a small blue piece of cotton that has spent many months under the skin, now looks nothing like clothing fibers plucked with scotch tape at the local thrift store?

That’s just a theory – but it’s a nice simple theory that explains things without introducing a mysterious pathogen. Occam’s Razor: “entities should not be multiplied beyond necessity”. Before claiming that because he cannot identify some fibers, then a new disease exists, Professor Wymore must explain how he has fully discounted the multitude of far simple explanations.

I’ll simplify this to two questions:

1) In any large sample of household fibers, will there not always be some that are unidentified?
2) If a clothing fiber were embedded in the skin for a long period of time, and then emerged, would you be able to identify it as a clothing fiber?

CNN Tonight

This should be interesting. Paula Zahn is doing a story on Morgellons at 5PM Pacific, 8PM Eastern today (Thursday June 22).

Regardless of the tone of the piece, this will cause a huge blip in the number of “reported” cases, as viewers go to morgellons.org, and fill in the form. They list 4131 right now, which jumped up from around 2000 a few months ago with the local TV coverage.

Hopefully CNN will have done considerably more homework than the local news.

Why does the MRF recommend Lymebusters?

If you were registered with the Morgellons Research Foundation about a month ago, then you would have gotten an email from Mary Leitao, in which was stated:

“Please know that hope truly is on the horizon. Please do not poison your body with pesticides and toxic chemicals while this mystery is unfolding. You must remain as healthy as possible.
[…]
If you would like a place to communicate with others who have this disease, you can go to this message board, which is dedicated to Lyme and Morgellons.
http://lymebusters.proboards39.com/index.cgi

Best wishes,

Mary M. Leitao, Executive Director
Douglas Buckner, Ph.D., Associate Director Morgellons Research Foundation”


On the MRF web site, back from February 2005 , until the recent re-design, there has also been a link to the Lymebusters discussion board:

http://web.archive.org/web/20050226092207/http://www.morgellons.org/

Why does the the MRF recommend Lymebusters (and ONLY Lymebusters) as the place to discuss Morgellons? I’m really not sure – since a look at Lymebusters does not lend Credibility to the Morgellons case. Here are some representative quotes from the past 48 hours or so:

From Glennb
I also have the stabbing ones, usually the stabbing is in the region of the lower legs and ankles. I can pretty much control this by spraying natural insect repellant on my lower legs everyday. If I forget I get the stabs. Also spraying the carpeting lightly with cedar oil spray helps. These things also float around in the air. I have a big plastic spray bottle that is one quarter water and three quarters Everclear Grain Alcohol that I added grapefruit seed extract to, also added lavender and teatree essential oils. This makes a great spray to clear the floaters out of the air, also like to spray my sheets with it before I get into bed at night.

From Magnolia
[…] I sat down in front of the computer, turned it on and within 20 minutes I was being swarmed by stuff! I looked at the computer screen and saw the “things” that most of us have. The cube that I sat in was very dusty. So I got out the H2O2 and wiped everything down, wiped my face off, and the swarming stopped.

From l46cheetah
If a Dr wants to be in denial that something physical is wrong then he has to do it on his own time and without me in the room. I have fired about 15 Dr.’s for the way they talked to me . I finally got sick of it and started trying things on my own. Then my nurse friend sent me to her Dr friend and he listens and he is at least trying. I have been to 32 Dr.’s in 3 years.

From Flowerchild
You should see a big difference if you zap tonight, as the moon is full, and the parasites are active and easier to kill. Hanna Kroeger recommended going after parasites 5 days before the full moon until at least 5 days after, as that’s when parasites come out of hiding in the body to reproduce

From Belikewater
This current lesion, about 1 inch square on my lower right arm I brought on myself, by pouring bleach on a picked area. There was an instantaneous, very scary reaction. The skin peeled back in a flash. My first panicked thought was ‘flesh eating disease’ and I grabbed my colloidal silver and splashed it on the area. The peeling instantly stopped. Then before my eyes a weird thing happened. Instantly all sorts of black fibers, specks and what appeared to be semi-formed arthropod forms appeared in the wound, spaced a bit apart from eachother

These are not unusual posts. They are quite typical, and they go without comment. There are far worse posts in there, but I limited it to the last 48 hours, and left out the suicidal rambles.

So why is Lymebusters the semi-official discussion board of the Morgellons Research Foundation? It really can’t help their image.

Lymebusters, as has been noted several times in comments here, is not a very healthy place. It’s a place where people build and reinforce errant belief structures, and a place where vulnerable people can easily be snared.

How can the MRF say “Please do not poison your body with pesticides and toxic chemicals while this mystery is unfolding” and then two paragraphs later direct them to Lymebusters, where people discuss assailing their skin with bleach, Everclear, tweezers and worse.

Medical Student Syndrome

Medical Student Syndrome is an unusual affliction that affects people in medical training. The student reads about a novel disease, and finds they have some symptoms of this disease, and then imagine they have this disease.

Here’s a brief audio account from NPR, entitled: “The Challenge of Knowing Too Much, and Too Little”

http://www.npr.org/templates/story/story.php?storyId=5473416

People with inexplicable skin conditions, or itching, or people who simply worry a lot about their health, might resort to performing research on the Internet. It seems quite reasonable that they might find Morgellons, and since the range of symptoms is very broad, they would recognize some symptoms. They would then decide they have Morgellons.

Not that their problems are imagined, if people are sick, then they are sick, they have real problems, physical and/or mental. They are not sick with “Morgellons” but they might be suffering from a recently discovered form of MSS known as Cyberchondria.

Physical and/or Mental

One of the problems with discussing Morgellons is that the argument tends to be polarized by the issue of mental illness. Inevitably, the people who believe they have Morgellons (“Morgellons sufferers”) will accuse their doctors and other skeptics of explaining away their symptoms with “delusions or parasitosis”, or some other mental disorder, and ignoring their physical symptoms.

In reality things are no so black and white. Let me try to clarify my position here, since I feel it’s been misinterpreted.

It is very clear that people with Morgellons do not all have the same problem. In fact the cases discussed on boards such as Lymebusters are very varied.

Some Morgellons sufferers might have a single physical condition. Some might have more that one.

Some Morgellons sufferers might have a single mental condition. Some might have more that one.

Some Morgellons sufferers might have physical conditions, but not mental conditions.

Some Morgellons sufferers might have mental conditions, but not physical conditions.

Some Morgellons sufferers might have both physical and mental conditions.

Let me be very clear here, my UNCHANGED position on this topic is:

I do not think that all Morgellons sufferers are mentally ill.

And just to emphasise this a little more, I’ve changed the word “and” in line 3 of my header to “and/or”.

Lesions are real, and there a number of things that can cause them, including many known diseases, mostly physical, some mental.

Fibers are real, and there a number of things that can cause them. But as yet, no known disease causes fibers to emerge from lesions. No credible evidence suggests that fibers are emerging from the skin.

What is the CDC doing about Morgellons?

It has been reported several times that the CDC is forming a “task force” to investigate Morgellons, but I could find no mention of this on the CDC web site, nor did the news stories go into much detail. So I emailed the CDC to see if they could give me the official line on what they are currently doing. I got the following response (dated Thu, 1 June 2006 ):

“CDC is forming a working group to provide scientific overview for an objective review of issues surrounding what we are referring to as Morgellons Syndrome. This multidisciplinary group will develop a strategy by which we would expect to form a scientifically useful case definition, an important step toward answering other critical questions as to cause and possible treatment. We are basing this work on the evidence of human suffering without prior assumptions as to underlying cause. That important question can only be addressed by objective inquiry. / Dan Rutz Communications Specialist, Centers for Disease Control and Prevention(CDC)”

What does this mean? I’ll give you my interpretation.

They are “forming” a working group (meaning it’s not formed yet), to “review .. issues” (meaning looking at the available purported evidence, and judge its scientific rigour and its public health impacts.)

They are looking at something they are “referring to as Morgellons Syndrome“, (meaning they have not judged it a disease, not even a syndrome, they are just picking a name for something that might turn out to be one of them, but is initially just a phenomenon that the media wants investigated).

The “multidisciplinary” group (meaning it has at least two people, including someone for mental health) will “ develop a strategy by which we would expect to form a scientifically useful case definition” (meaning they will figure out if Morgellons has enough initial evidence to qualify as an actual syndrome or not, and if so, narrowly define what set of symptoms should indicate “Morgellons” for the purposes of future investigations).

Which would be “an important step toward answering other critical questions as to cause and possible treatment” (meaning, if it is a real disease, you have to have some statistically meaningful evidence of this before moving forward, unlike the current anecdotal or otherwise poor quality “evidence”).

We are basing this work on the evidence of human suffering without prior assumptions as to underlying cause” – (Meaning, people are suffering, so we should do something about it. Possibly they have a real disease, in which case we should track that down. Perhaps Morgellons Syndrome should be treated as a specific type of delusional disorder. Perhaps there are actually several different things going on here. Possibly patients sometimes have some other disease and Morgellons is an unhealthy distraction, in which case we should demonstrate that Morgellons is a fabrication to remove uncertainty in treatment. Either way, it’s just good scientific practice to not make any assumptions).

That important question can only be addressed by objective inquiry” (Meaning – unclear. Did he mean to write: “those important questions”, as referenced earlier? Or is he speaking of the “underlying cause”? Or a more general question? Regardless, I’m in agreement, as all important questions should be addressed by objective inquiry.)

The writer, Dan Rutz, is a man I have great respect for. He’s the former chief medical correspondent at CNN. He once wrote:

“I left CNN under the pressure of reporting stories “for competitive reasons” even when I knew the information was highly speculative, sensational, and little else. It was difficult to cave in to a management style that favors the sizzle more then the steak and fails to recognize both the positive value of responsible health journalism or the great harm flowing from the opposite.”

I feel Mr Rutz must be seeing much of what he describes in the current local TV coverage of Morgellons. It must be frustrating for him to not be able to at least urge restraint. But that’s not exactly his current job. His current job is to tell the media what the CDC is doing. He’s doing to very good job of that.

After typing the above, I get a Google alert of this story from sfgate.com: which contains this paragraph which make things clearer:

“Not a day passes when I don’t talk to somebody who claims to have this,” said CDC spokesman Dan Rutz. “In the absence of any objective review, people have jumped to conclusions and found each other on the Internet and formed their own belief structure. We really need to debunk this if there isn’t anything to it or identify if there is indeed a new, unrecognized disease that needs attention.”

The article itself is much better than others in the media so far . I think perhaps the tide is finally turning.