Sunday, March 31, 2013

Llewellyn King on ME/CFS

A friend sent me this article this morning. It is written by Llewellyn King,  a journalist who has come to champion this illness called ME/CFS.

This is an important article, especially for those who may want to educate themselves about this little recognized illness. Society in general takes a dismissive and disbelieving attitude towards this serious illness - and one wonders why?

The article can be read here.

We need to thank Llewellyn King for writing with such completeness and such clarity. Llewellyn King also covers this illness in his video interview journal ME/CFS Alert.


  1. By Llewellyn King

    The disease is Chronic Fatigue Syndrome (CFS), a benign name for a malignant condition. Patients prefer that it be called by its old name, and the one used elsewhere in the world, Myalgic Encephalomyelitis (ME). But they are stuck with CFS because that is what the Centers for Disease Control named it when following investigation of a Nevada outbreak that sickened 300 people in the 1980s.


    "Let me make something perfectly clear. The illness entity known as CFS, based on an outbreak of ME Plus, has never been fully investigated by anyone.

    Not one researcher has examined all of the evidence that caused the creation of this syndrome. NOT A SINGLE ONE. After nearly 30

    This is a disgrace of epic proportions. A disease that has brought brutal,relentless suffering to now millions of people and yet we have evidence that has been around since the inception of the syndrome that has never been examined."

    -Jeri McClure Kurre

  2. Let me make this MORE than clear.

    My story has been told in Mold Warriors and Surviving Mold.

    CFS researchers have NO RIGHT to refuse to investigate the evidence that started the syndrome.

  3. I'd like to express my appreciation to Lewellyn King and CFS-Patient Advocate for not censoring and deleting me, as so many others do.

    As Dr Peterson's Simmaron Research has done.

    It is very strange for a "CFS research institute" in Incline Village to suppress and delete an actual survivor for trying to talk about it.

    But I have no control over the bizarre way the "Labyrinth of CFS" has twisted and turned.

    It is gratifying to see that a few people left the door open, just a tiny bit.. to some unfamiliar concepts.


  4. It should be apparent to all, that if a researcher "Fails" to take an interest in this incident, and refuses to "Respond"...
    Clearing up the mystery of CFS is not what they have in mind.

    More like "I refuse to have my wonderful theory threatened by having it compared against this "irrelevant" incident.

    It was a long time ago.

    Who cares? Let's make CFS into anything I want it to be"

    Multiply that by a thousand "good researchers", and now you know why "CFS is so confusing"

  5. Detection of Mycotoxins in Patients with Chronic Fatigue Syndrome

    Joseph H. Brewer, Jack D. Thrasher, David C. Straus, Roberta A. Madison and Dennis Hooper

    Abstract: Over the past 20 years, exposure to mycotoxin producing mold has been re...cognized as a significant health risk. Scientific literature has demonstrated mycotoxins as possible causes of human disease in water-damaged buildings (WDB). This study was conducted to determine if selected mycotoxins could be identified in human urine from patients suffering from chronic fatigue syndrome (CFS). Patients (n = 112) with a prior diagnosis of CFS were evaluated for mold exposure and the presence of mycotoxins in their urine. Urine was tested for aflatoxins (AT), ochratoxin A (OTA) and macrocyclic trichothecenes (MT) using Enzyme Linked Immunosorbent Assays (ELISA). Urine specimens from 104 of 112 patients (93%) were positive for at least one mycotoxin (one in the equivocal range). Almost 30% of the cases had more than one mycotoxin present. OTA was the most prevalent mycotoxin detected (83%) with MT as the next most common (44%). Exposure histories indicated current and/or past exposure to WDB in over 90% of cases. Environmental testing was performed in the WDB from a subset of these patients. This testing revealed the presence of potentially mycotoxin producing mold species and mycotoxins in the environment of the WDB. Prior testing in a healthy control population with no history of exposure to a WDB or moldy environment (n = 55) by the same laboratory, utilizing the same methods, revealed no positive cases at the limits of detection.