Monday, August 26, 2013

What’s the Matter with Meghan?

It appears that Meghan O’Rourke may have ME, but The New Yorker writer doesn’t know it. 


In the current edition of The New Yorker, writer and poet Meghan O’Rourke pens in the readable piece "What's Wrong with Me?" that she's been sick for years with an autoimmune disorder that no one can identify, but the illness has the classic symptoms of ME.

Her early blood work showed recent exposure to Epstein Barr, cytomegalovirus and parvovirus. Her lymph nodes "ache," she’s developed Hashimoto’s thyroiditis, she forgets words, transposes words and can’t think. She’s been plagued with neuropathy, migraines, terrible fatigue, hives, low blood pressure, dizziness, bruises, fevers. These are textbook ME complaints. But it's not just the litany of symptoms that is so familiar. It's the way she describes them, from her brain being "enveloped in a thick gray fog" to this description of an evening out: “Sitting upright at my father’s birthday dinner required a huge act of will."

O’Rourke also has a family history of several autoimmune illnesses, including rheumatoid arthritis, ulcerative colitis and thyroid disease. She has two cousins who, like her, are “inexplicably debilitated.”  

Her illness has doctors baffled. One theorizes that, in addition to her Hashimoto's, she has an autoimmune disease attacking her hypothalamus. And while she's improved on a gluten-free, specific carbohydrate diet, her symptoms persist.

As O'Rourke has vacationed in New England, where she enjoyed walking under the “tall New England sugar maples," she should also consider the new culture test for Lyme disease as well. Some cases of Lyme masquerade as ME.

My advice to O'Rourke would be to first read reporter Hillary Johnson's seminal work on ME, Osler's Web. My bet is O'Rourke will see herself reflected in the stories of these patients.

If you believe that O'Rourke may have ME, why not let her and The New Yorker editors know with a letter to the editor? The issue is available for free with an android device, and for 99 cents with most Kindles (except the Kindle Fire, which will cost you $5.99 for the issue).


7 comments:

  1. Good catch. I read it yesterday and wondered the same thing. What I found especially irksome (besides the failure to include ME or CFS as a diagnostic option) was the upbeat ending, i.e., she's in good-enough condition and it's best not to dwell on one's symptoms all the time and bother others about how one feels. Perhaps she's is for now in good-enough condition but most of us aren't and don't have the option as our symptoms go on 24/7 and change in severity and nature by the hour.

    Michael

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  2. The problem is, in the US, Meghan O'Rouke would be most likely diagnosed with "chronic fatigue syndrome" -- not ME. I would guess that she would receive better medical care, except from a few specialists, without this dubious diagnosis on her records.

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  3. Maybe she does know she has M.E. or CFS and is smart enough not to admit it.

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  4. I don't think it will help us if Meghan O'Rourke gets an ME or CFS diagnosis. I'm disturbed by many of her statements about the purported relationship between illness and thoughts.

    For instance, she writes, "Focussing on symptoms, some studies suggest, can make them seem more severe…[Y]ou've got to be willing to ask how much IS in your head--and whether an obsessive attention to your symptoms is going to lead you to better health."

    Will it help Meghan O'Rourke to get an ME or CFS diagnosis? Probably not, because there isn't one single FDA-approved treatment for them. Since she seems to be at about 80 or 90 on the Karnofsky scale, she might want to leave well enough alone.

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  5. I guess the four million dollars the CFIDS Association took from the CDC to implement the CFS Awareness Campaign starting in 2006 didn't work. It was for, "educating the general public, health care professionals, legislators and the media about CFS http://chronicfatigue.about.com/od/supportadvocacy/a/cfscampaign.htm .

    Why am I not surprised.

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  6. I don't believe in autoimmune disease.

    Contagion aside, everything is "acquired."

    For example, you can "acquire" squalene or mercury poisoning from a vaccine contamination, and NOT be infectious. Contrastingly, you can "acquire" lyme/mycoplasma/SV40/SCMV from a vaccine contamination, and be 100% infectious.

    Infectious or not, it is still an "acquired immune" disorder.

    I am 100% infectious, and it's statistically impossible that my clinically-undiagnosed microbe is rare.

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  7. Wow. Lots of people judging a woman they don't even know. Leave her alone.

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