July 2006

You get a lot of different reports of fibers.  Some people find fibers in lesions, some wipe them off their skin, some are short, some long, all different colors, some hard, some soft, some move, some grow, some pop in and out of the skin, some are microscopic, some hair sized, some like threads, some are like spaghetti strands.

Why so many different types of fiber?

I think the problem is with the Morgellons Research Foundation case definition, which describes the fibers thusly:

“[the fibers] are generally described by patients as white, but clinicians also report seeing blue, green, red, and black fibers,”

That is it, no particular diameter, length, morphology, ductile or brittle properties, opacity, smoothness, curvature, solubility, texture or any characteristic other than them being one of a number of colors.

So, anyone who finds any fiber “in or on a lesion”, OF ANY KIND WHATSOEVER, will fit the case definition.

What exactly is the MRF doing?  Presumably they are not stupid, they have a few PhDs in there, and Leitao has a degree in biology.  Can’t they see that with this ridiculously broad case definition, nobody will take them seriously?  If Morgellons is real, then they do the real sufferers a great disservice in having such an inclusive case definition.
I think that the reason they do not refine the case definition is that they are stuck in the same “non-judgemental” mindset that prevails at Lymebusters.  Not wanting to exclude anyone, they include everyone.  The case definition covers the ailments of about 50 Million Americans with some kind of MUPS.  Anyone who chooses, can simply say they have Morgellons, and the case definition will agree with them.   According to the case definition, I have Morgellons.

I challenge the Morgellons Research Foundation to either update their case definition, or explain themselves.

This is Helicobacter Pylori:

It’s a bacterium that lives in the stomach. About 40% of Americans are infected with it. In most people it does nothing harmful, but for some people it is involved in the production of stomach ulcers. Treatment with antibiotics that target H. Pylori will cure and then prevent the recurrence of stomach ulcers.

What has this to do with Morgellons?

Firstly, the story of the discovery of the connection between H. Pylori and ulcers is a rather romantic one. Scientists originally were unsure what caused ulcers, but though stress or eating spicy foods might contribute. One maverick scientist though that bacteria might be involved after a colleague found some H. Pylori via biopsies of people who had ulcers. This was just 25 years ago, in 1981.

His peers though this idea was crazy, as bacteria could not establish colonies in the harsh acidic environment of the stomach. To prove them wrong, the scientist drank a bunch of the bacteria, and got sick. He then found that H. Pylori was living in his stomach. Subsequent research demonstrated a clear link between H.Pylori infection and Ulcers. The scientist went on to win the Nobel prize for his work.

Mary Leitao, the founder of the Morgellons Research foundation has this to say about H. Pylori.:

My take on why this organism has not been identified is similar to what happened with the discovery of Helicobacter pylori and ulcer disease.

So, is there any similarity here?

No.

In 1981 Peptic ulcer disease was very well documented. Several million cases of peptic ulcers were diagnosed each year. The clinical manifestations of Peptic ulcers were clearly defined. A clear diagnosis could be given. The existence of the ulcer could be determined via X-Ray and endoscope. Effective pallative treatments were available. They simply did not know what caused them, or how to prevent them.

In 2006, there is no scientific documentation on Morgellons. No cases have been documented in a clinical setting. No diagnosis of Morgellons can be given, no standards exist for determining if the disease even exists. Since we don’t know if it exists as a distinct disease, we don’t have any treatments for it. You cannot find a causative agent for something that is not defined.

The first step towards finding a treatment for a new disease would be to establish that the disease actually exists. This has not been done for Morgellons. How can you tell if you have cured something if there is no standard for saying if you have it? With ulcers, the connection is clear, you can tell if someone has an ulcer with endoscopic examination. You can tell if they have H. Pylori infection with a sample and culture. Statistical studies show that without H. Pylori there are no ulcers.

Since there is no standard for what constitutes “Morgellons”, there is no standard for what constitutes “cured of Morgellons”. If the Morgellons Research Foundation wishes to be taken seriously, they must first take the step of clearly demonstrating that the disease actually exists.

Then we can move on, and examine the effectiveness of tests and treatments.

Mary Leitao, you can’t identify a causitive organism before you identify the disease.

We know what ulcers are. What is Morgellons?