What the Heck are They Talking About: Neurological CFS

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.

Common Sense and Patient Compliance

"Studies have shown that patients retain only a small percentage—less than 20%—of what they're told at the time of a visit," said Mark T. Parker, MD, an emergency medicine physician at Monadnock Community Hospital in Peterborough, N.H.

Why Don't Patients Do What You Tell Them?
American College of Physician
Always Putting Patients First

And that's patients who don't have objectively substantiated working memory problems.

Questioning the use of Cox-2 inhibtors in patients with documented cardiac abnomalities

Pfizer has agreed to pull the painkiller Betrax, a Cox-2 inhibitor, because it can cause heart and skin problems.

Question: If Cox-2 inhibitors such as Bextra, Celebrex, and Vioxx have an impact on cardiac health in patients that take them: what are the implications for neuroimmune disorder patients medically diagnosed with ME/CFS?

The role of the heart in this multi-systemic disorder is well documented by:

Dr. Peter Rowe, pediatrician and associate professor of pediatrics at Johns Hopkins University.

Dr. Arnold Peckerman, clinical professor at the New Jersey Medical School.

Matching Research Funds

UPDATE:

In the past few months a strong fundraising effort was launched to fund testing by Dr. Natelson, who is researching a set of variables in spinal fluid which could lead to a test for ICD 10 G3.93, a neurological disorder often misdiagnosed when physicians fail to test for the specific biomedical pattern of this disorder. Mr. Bearman challenged the ME/CFS community to chip in when NIH funding proved unavailable.

"With reference to "A challenge in aid of research" we are delighted to confirm that MERGE has received £4000 of matching funding from Mr Bearman. The response to this appeal - from individual ME patients, ME Groups, and Corporate Friends - was heartening, and a great example of "energising ME research" in action. Many thanks to all who contributed or gave this appeal their support."

Co-Cure