chronic fatigue syndrome, cfs, chronic fatigue immune dysfunction, cfids, myalgic encephalopathy, fibromyalgia, fms, Forum,  myalgic encephal, m.e., low blood volume, neurotoxin, orthostatic intolerance, multiple chemical sensitiv, National CFIDS Foundation, chronic fatigue, NCF Forum newsletter, chronic illness

"Still Stranded on the Yellow Brick Road... 3 Flats & a Blow-out!"

Part 1:  Reprint and Updated of 1997's "Out of Gas on the Yellow Brick Road 2004

By Carol Hope-Maier

I am a victim of myalgic encephalomyelitis (M.E.), aka chronic fatigue syndrome and immune dysfunction syndrome (CFIDS).  Confined to my bed again. I was trying to alleviate the boredom by reading everything within reach, and I saw another one today!  Another Be-All, End-All "You, Too, Can Use Your Mind to Cure Your Body" Program!
   
I've used various forms of holistic healing for so long that I'm reminded of the song "I Was Country When Country Wasn't Cool."  Almost all of the myriad of alternative, behavioral techniques have been of value to some degree, so this is not an indictment of these programs.  It is, however, a plea for a reality check!
 

Several years ago, I spent five weeks in a pain management program that claimed to eliminate the need for any prescription pain medication and return people to normal life.  This program of behavioral modification included meditation, biofeedback, physical therapy, occupational therapy, group counseling, nutrition, stress reduction, hazards of prescription medication, etc.  It probably sounds very familiar to many.  After The Program, I was returned to my bed with permanent physical and emotional damage, only to receive a bill for more than $42,000 about two days later!  No, I didn't pay the bill.  A few months later, the bill was suddenly withdrawn without explanation and the $1,000 deposit demanded upon entry was reimbursed in full.  While that served to validate my feelings, it was no consolation for the trauma.

I believe such programs are effective for some illnesses and injuries -- "some" being the key word here.  Unfortunately, the practioners with whom I have personal knowledge and experience either fail to recognize or to admit this fact.  (Giving them the benefit of the doubt, maybe they are ignorant of this -- but blinded by over-enthusiasm or arrogance?)  Regardless, it is my humble opinion that this omission renders them truly dangerous.  Unfortunately, it seems only we "traumatically initiated" know, and educating others about this is very difficult.

Whether by design or coincidence, these people have  ideal "win-win" marketing programs since they remain totally without responsibility, accountability or blame -- that is deflected onto the patient.  Their cleverly designed and irrefutable responses are bounced right in your face to shut you up.  For example, when someone balks at the cost, they reply, "How much is your life worth?"  Now I ask you, "What can you or your family possibly say to that?"  And if their "product" fails, you: A. aren't trying hard enough; B. aren't doing it right; C. "WANT" to be sick. ("Why do you WANT to be sick?"); D. etc., etc.

Of course, with the exception of "C" which has been stated, most do not literally quote these accusations, but the message is clear and unmistakable.  Most persons with CFIDS (PWCs) are now among the unemployable poor who cannot afford to waste hundreds or thousands of dollars on these treatments.  But the real tragedy is the blow to the souls of the proud high-achievers who can no longer get out of bed unassisted.

I have yet to meet a single PWC who wouldn't try almost anything to get well.  Our inherent pre-CFIDS drive makes us particularly susceptible to the crushing demoralization triggered by the criticism when our characteriscally zealous and meticulous compliance with their programs has failed to make us well.

Worse, during the sales pitch, the family has been assured that they can have their loved one "back like he or she used to be" --their loved one need only apply the principles set before him or her as (s)he travels the Yellow Brick Road.  When our best efforts fail to regain our health, the devastating effects are compounded by cruel alienation from our families who were convinced that we had all the necessary tools to return to our former selves but chose the lifestyle of a slug.  I should be amazed that there aren't more suicides among the PWC population -- but then again, it's further evidence of our indomitable spirit to which we tenciously cling even as our bodies and brains cease to function and "life as we knew it" evaporates before our eyes.

Culpabililty can even be dodged for the ultimate failure (suicide) when that is offered as confirmation of the initial assessment that the person was really deperssed or mentally or emotionally weak or defective all along ---anything but physically ill.  "What a shame!  Well, we did our best..."
 

I also find it interesting that so many of these "practioners" claim knowledge of PWCs who are cured.  My fellow support group members and I have heard this claim many times, but none of us has met a "cured PWC."  Our requests to meet one continue to be ignored.
 

Again, let me stress that I believe many of these programs are useful.  They simply don't cure everybody of everything.  The problem lies with those who overstate the application of such techniques, giving sufferers and their loved ones false expectations.  We must recognize that some of us run out of gas on the Yellow Brick Road no matter how hard we try.  I strongly believe that these practioners have an obligation to be more realistic about the results achieved by PWCs and stop blaming the victim!

---------------------------------------------

"OUT OF GAS ON THE YELLOW BRICK ROAD" was first published by The CFIDS Association of America in 1997. Since at that time my concerns involved over-zealous marketing of "Pain Management Programs" to persons with ME/CFS, I mentioned physical damage  incurred in 1993 but did not elaborate. However, even THEN people KNEW those Programs exacerbated some ME/CFS symptoms. So NOW years later, I am INFURIATED with those who STILL advocate ONE OF THE MOST HARMFUL ME/CFS "TREATMENTS" ever... "GRADED EXERCISE !"
So IF YOU are considering it, first CONSIDER THIS...
"GRADED EXERCISE" has caused me to take 400 mgs of MS CONTIN (morphine) and 60 mgs of HYDROCODONE every 24 hours FOR A DECADE! Compared to my prior 1 or 2 tabs of VICODIN (5 mgs), does "GRADED EXERCISE" still spell "E.F.F.E.C.T.I.V.E. T.R.E.A.T.M.E.N.T." to YOU?
In 1993 I was FORCED into an inpatient "Pain Management Program" that proved to be the worst five weeks of my life! It quickly triggered pain so excruciating that I considered suicide SOLELY to escape rocking in agony and biting a pillow to stifle my screams! I became much worse during the Program, and the damage suffered was obviously perrmanent!

It is particularly galling to remember that this was avoidable: Although very ill and cognitively impaired, before admission I sensed the harm of "GRADED EXERCISE" and BEGGED my physicians to excuse me from the exercise segment of the Program. Predictably, my pleas for caution were ignored. I was transported to the facility with cognition alternating from robotic daze to light coma. Within hours of admission, "GRADED EXERCISE" began to the mantra "I will not engage in drug seeking behavior." Humiliating? YES!

Overall, I endured 50 intense exercise sessions to the cadence of an inexperienced and over-eager "Taskmaster's" ridicule of those unable to maintain the pace. The twice daily exercise included speed-walking; jogging hospital grounds; barbells, stationary bike, "Stairmaster", plus unidentifiable equipment; aerobics; etc. New symptoms and impairments soon developed that continue today: Constant, SEVERE pain over ENTIRE body from aching so intense I grind my teeth to sharp like stabs with an ice pick & EVERYthing between; sore, often warm nodes/lumps; painful, knotted left leg muscles contracted for 11 yrs; insomnia/sleep paralysis; mild seizures; an unpredictable phenomenon that forces me to have my head below my heart... I have a wide range of symptoms; but since persons with long-term ME/CFS are "in tune with their bodies", I'm confident that I've cited ONLY examples of those caused or exacerbated by "GRADED EXERCISE." Although I could continue, my problems are not the point. THIS is:
IF YOU haven't tried "GRADED EXERCISE," YOU STILL HAVE A CHOICE!
"EXERCISE" it!

(NOTE: In the next issue, PART 2 will address the self-appointed "PRESCRIPTION POLICE," hopefully before they "run amuck" ... YOU KNOW who you are!)


[Ed. Note: Yet another medical journal article publicized near and far on how exercise would help those with "CFS" was part of the Cochrane Review Study.  M. Edmond's report from the Cochrane Collaboration Research Group reported on data that suggest that exercise therapy would help within just three months.  The authors also suggest that taking Prozac plus exercise helped even more!  Before we could object, CFS specialist Charles W. Lapp, M.D. put his own reply on About.com and called the review "just horrible."  He said, "The author examined 9 studies, accepted only 5, and none were from the USA." The study, he wrote, "sends the incorrect message to primary physicians."  He listed 7 problems:
1. They measured "fatigue" primarily instead of the quality of life.
2. The patients only used the CDC's criteria in two studies so it seems none were particularly severe.
3. Two of five of the studies showed between 80-92% were still working, another had 35% employed, and the others did not report this at all.
4. Only one had "rigourous exercise and "did NOT show any improvement in subjects and had the highest dropout rate."
5. The report failed to mention that most CFS patients "could not tolerate such exercise."
6. The "experts" mentioned really was only one, "Dr. Peter White, whom I believe works closely with Wessley and Sharpe.  Read biased."
7. The study stated "exercise therapy may not worsen outcomes," but never mentioned  that it "may trigger prolonged relapses."]


 

The National CFIDS Foundation * 103 Aletha Rd, Needham Ma 02492 * (781) 449-3535 Fax (781) 449-8606