What the Heck are They Talking About: Neurological CFS

Psychology Today story has more factual errors than there are CFS and fibromyalgia advocates

Okay, so I'm joking around as usual, but the June 2005 issue of the consumer magazine Psychology Today started with the cover "Chronic Fatigue: how your mind makes you sick" and the factual errors just kept coming.

I still don't understand how people who write for a living can't figure out that a single common symptom of many diseases is not the same thing as a medically defined syndrome, which is a specific pattern or group of signs and symptoms, but then I'm a tad picky.

HMMMM. Maybe advocates should send Stedman's medical dictionary instead of letters to the editor.

For advocates who want to make sure their "Letter to the Editor is one of the golden few published the following are tips come from both members of the media and other advocacy movements.

So take a memo.

Tips on Writing Effective
Letters to the Editor

To maximize chances of getting your letter published:

Do:

    * respond directly to an article or commentary  published within the previous few days and follow the citation format  used in the target publication. For example: Re "Chronic Fatigue," Psychology Today, June 2005:

    * keep it concise and focus on the single most important point. Be sure to follow the guidelines and word count limit of the target publication (100 to 250 words is typical for a letter to the editor).

    * limit the number of points you make and stay narrowly focused (don't try to  address two separate issues in one letter).

    * use verified facts (take the time to check original sources);

    * create immediacy by indicating how readers will be affected by the issue you address whenever possible;

    * point people to a resource for more information (like the World Health Organization) or a specific action to take whenever practical;

    * pay close attention to letters by others. Note effective and ineffective approaches, style, length, etc. Be a student of persuasive writing;

Avoid:

    * overstating/exaggerating your point

    * pejoratives (insulting your opponents or other advocates)

    * jargon or acronyms (spell out any name the first time you use it,  followed by the acronym in parenthesis) Example: chronic fatigue syndrome (CFS)

    * saying "I'm writing to..." Omit needless words and use active language.

Here is an example of an advocacy letter that met the above criteria and was published by the New York Times:

    Chronic Fatigue? Have a Sugar Pill

    To the Editor:

    Re ''Placebos Fail the Test'': The article highlights the widespread misconceptions about chronic fatigue and immune dysfunction syndrome.

    While the condition is often referred to as chronic fatigue syndrome and confused with plain old fatigue, studies suggest it is strongly linked to debilitating neurological and immunological problems.

    Many doctors who do not treat it consider the condition a questionable psychological illness, which manifests as physical symptoms.

    But there was once a time when multiple sclerosis was not considered a ''real'' disorder either, and those who continue to hold to the theory that chronic fatigue syndrome is a psychological illness are perhaps equally misinformed.

    BIxxxxxx Mxxxxxxxx
    xxxxxx, N.J.

Want to learn more? Hear it from the Editor behind the "letters to the editor" at the New York Times.

Okay ready, set, go ...

Understanding chronic illness and viruses

Despite rumours to the contrary (courtesy of your friendly biopsychosocial specialist), biomedical scientists are getting closer and closer to cracking the code of viral illnesses.

So for those of you who are like me and go into a fog every time scientists use polysyllabic words this  little gem of a booklet explains the role of viral triggers in chronic biological illness such as ME/CFS in a way even I could understand. Copies are $3.

The site also has other information on viral triggers and the role of transfer factors in managing nonpsychiatric neuroimmune disorders such as ME/CFS.

And, of course, they have products to sell.

This is not an advertisement for the product, however I will comment that I ended up on the site because my oldest daughter's immunologist, who medically diagnosed her with the neuroimmune disorder ME/CFS, recommended she take Immune Care 64. 

And for her, based on her specific triggers, it has made a difference.

http://www.immunitytoday.com/unchroniland.html

Bad idea #7568 Prescription Privileges For Psychologists

Pursuit Of Prescription Privileges For Psychologists (RxP) :

My personal experience with being prescribed medication by someone other than a medical doctor:

Twice now, I have been prescribed a medication that was clearly contraindicated by my medical history had my medical files been consulted as should always be the case without exception.

And I'm the one who caught it both times: that's not my job and the medical consequences could have been severe. And a malpractice suit is no consolation to myself or my family had I died.

The lesson I learned - always run a prescribed medication past your treating doctor, aka licensed MD first. Knowing from personal experience that sufferers of ME/CFS often experience nasty side-effects with drugs, usually the one's in tiny print listed as rare, I've learned to double check and cross check my prescriptions. When I took the FDA warning in to my medical doctor the medication was discontinued immediately.

Should nonmedical personnel and professionals be allowed to prescribe powerful drugs?

I know what my vote is. What's yours?

For more information about your medications:

http://www.nlm.nih.gov/medlineplus/druginformation.html
http://www.rxlist.com/
http://www.worstpills.org/
http://www.rxcrosscheck.com/ - pay site

Reality bites - biopsychosocial

The dream:

"The research is clear--any division between mind and body is arbitrary, capricious and detrimental to the health of individuals, family, communities and our nation." 1

Norine G. Johnson
APA past-president

The reality:

"Those who cannot be fitted into a scheme of objective bodily
illness yet refuse to be placed into and accept the stigma of mental illness remain the undeserving sick of our society and our health service." 2

Michael Sharpe
UK Psychiatric specialist

1. Monitor on Psychology, Fusing mental health and health; Volume 33, No. 10 November 2002

2. University of Strathclyde, October 1999

The story of thousands - one woman's perspective

"In the depth of winter, I finally learned that within me there lay an invincible summer."

--- Albert Camus, Novelist

There was once a woman who loved to laugh, play hard, and work hard. Her life was bursting with activity and future plans. Then, without warning, life changed. A virus? A flu that lasted for weeks? A family history of autoimmune disease? That's all affirmative. This woman still loved to laugh, play and work, but life became harder as she became more physically ill.

Laughter faded as this woman fought to stay on her feet. You see, she could no longer play as hard as she once had. Life had been reduced to working just to exist and in the end, that too became physically and cognitively impossible. She couldn't afford to be unemployed; she simply had no choice.

Barriers sprang up like dandelions in springtime. Financial devastation: destitution and poverty; tangled miles of governmental red tape; stigma; and profound losses generating seemingly endless anger and tears. She missed the friends and family who, for whatever reason, could not stand by her. Just existing became a high wire act without a safety net.

Her grief deepened with the medical diagnoses of two of her three adored children with the same neuroimmune disorder that racked her body.

Although she remained a woman who liked to laugh, to watch her children grow, who wanted more than anything to go back to playing and working hard, for the first time in her life she faced something willpower alone could not overcome. Nor was a cure for her young daughters in sight as the result of a ideological war by psychosocial adherents on biomedical medicine and researchers.

Life was unrecognizable and nearly unbearable by her former standards. In a spiritual quandary she faced the same door asking over and over again, "Why? I've lived and I have memories; my daughters have just begun their lives. Why? Why? Please, I'll give anything for a cure for them!

Gradually she realized she faced a decision.

She could make a new life unburdened by former definitions of love, laughter, work and money, and teach her children how to do the same, or remain focused on the only door oblivious to what windows that might open.

Tied to this earth by her profound, unwavering love for her children and their love for her: she chose life and laughter.

It was not an instant decision or an easy decision. Nor was it a single decision. For hers, like so many others, was a fractured fairytale. Answers came in bits and pieces through the 24/7 haze of morphine-level pain and brain damage induced cognitive deficits amplified by physical sensations she jokingly referred to as "sprinting through neck deep Jell-O."

It was not an easy choice and she wistfully glances back toward her "old" life with longing on occasion, but slowly, day-by-day, she realizes she is moving forward based on a new reality.

She still loves fiercely, laughs often, and plays and works as hard as possible. But, now her life is based on her own reality not someone else's version of "life." Each day she tries anew to "walk the walk" for her children for she knows no one ever learned much from "Do as I say, not as I do." She gradually understands that no matter what happens to her or those she loves, good or bad, the world moves on. A lesson, of which she must remind herself on more than one occasion.

Life is good, just different, and she is in the process of becoming a person who might never have "emerged" living the same ‘ol, same ‘ol. And she says to those around her, "Come lean on me and I shall lean on you and together we will move forward, live life to our fullest, and yes, even find justice and a cure."

Live, love, laugh my friends for life is short regardless of the circumstances.