General practitioners' perceptions of chronic fatigue syndrome and beliefs about its management, compared with irritable bowel syndrome: qualitative study

The level of recovery I've experienced by extreme mycotoxin avoidance
is based upon the premise that my illness shares components of the
mechanism responsible for Sudden Infant Death Syndrome.
I was surprised to hear that the psychotheorists attribution of "Cot
Death" to parental "Munchausen by Proxy" syndrome has only recently been
overwhelmed, since strong exclusionary evidence has been known for years.
The "Richardson Hypothesis" and Dr Sprotts compelling demonstration of the
reduction of SIDS prevalence by the BabeSafe impermeable membrane to
isolate infants from the potentiated mycotoxins produced by molds in
mattresses containing flame retardants has done far more than cast the
psychological causality theories of SIDS into doubt.
http://www.cotlife2000.com/

I'm presuming that the infants are not subject to the "placebo
effect" and that their workplace stress may be considered minimal, though
I'm sure that is open to debate.
The Richardson Hypothesis and Dr. Sprotts measures may not provide the
entire answer to SIDS but the results have been sufficiently positive that
general practitioners ignorance of this effect almost certainly
constitutes medical malfeasance.
Despite the drastic reduction in SIDS, there are exceptions to the
spectacular "BabeSafe Effect" are described by Dawn Winkler, former vice
president of "Concerned Parents for Vaccine Safety" who has noted that Dr
Sprotts hypothesis doesn't entirely explain SIDS.
encephalopathy.http://poisonevercure.150m.com/sids_vaccines_play_a_role.htm

My experience is that a major portion of the driving force in my CFS
is the influence of specific mycotoxins as an inflammatory trigger
combined with a demyelinating neuropathological illness, a combination of
the effects described on these two websites.
The level of recovery I demonstrated by acting in accordance with this
concept has been dismissed by people who have applied this somewhat
convoluted pseudological argument of, "Since everybody knows that nobody
knows of anything that helps CFS, if you found something that helped you,
then your illness can't possibly be CFS". This argument has been used so
often that I would like to warn people that applying this sort of logic
means that no therapy can ever be found since as soon one is discovered,
the very fact that it had an effect dismisses the therapy from
consideration.
The other commonly used opposing argument is flawed by presupposing a
premise that is far from proven; "You cannot develope a physiological
strategy for dealing with a psychological illness. Therefore any effect
you experienced must have been placebo effect".
It scarcely seems believable that the mindset of physicians in general
have been such that we have in recent history the rejection of Dr Barry
Marshalls H Pylori concepts and the failure to examine Dr Sprotts
demonstrable SIDS reduction results as examples of medical intransigence.
Yet such has been the case. I can only hope that the repeated
demonstrations of this phenomenon will draw public attention to the damage
and patient abuse created by the psychotheorists dismissive "unexplained
medical beliefs". Society has suffered far too much from the application
of these obstreperous and obstructionist behaviors.

I set out to act in accordance with a concept that appeared to me as
having a logical basis and demonstrated the results. My experience
indicates that my case of CFS may be a variant of the mechanism
responsible for SIDS.
-Erik Johnson

Competing interests:
None declared

I'd like to tell a story about the trees up at Incline Village. Huge
stands of trees were all dying simultaneously and everyone was looking for
the cause. Of course the trees right next to the road were the most
visible and they were in terrible shape so the likliest culprit was the
salt used to de-ice the roads and so people were pushing for a salt
substitute and for federal funds to save the trees. But I pointed up to
the trees thousands of feet above the roads and asked "If road salt was
the cause, what about those trees?". Since people had already made up
their minds that it was the salt, they proceded to come up with wild
explanations that the salt must be blowing in the wind up to those trees,
somehow without affecting the trees that were in between the road and the
dead groves high above. So the trees up high were then found to have bark
beetles and now there were opposing groups who applied for federal funds
to address the "main cause" and fought each other to prove that their
"cause" was the more primary. But next the trees were found to be dying
that had no beetles and were nowhere near a road for any potential salt
exposure. Surely it must be the drought we've been experiencing and it
must be the lack of water that weakened the trees and caused them to
succumb to these other factors. But it was rather odd that some trees were
succumbing in areas that had plenty of water while others in drier areas
were thriving. But still the focus on the drought shifted the debate again
with all sides arguing for their favorite cause and trying to combine the
factors in such a way that they could somehow make sense.
Yet Lake Tahoe has been through droughts before without the trees dying
like this. These proposals just didn't seem entirely satisfactory.
None of these factors had come together before in such a way to create
this effect. The theories, even when all combined simply didn't "fit the
facts" yet this didn't stop most people from promoting their favorite
cause as primary or even cause them to question why trees hadn't been
subject to these factors before.
Finally someone pointed out that Tahoe had been so heavily logged a
hundred years ago that all of the old growth trees were virtually removed.
The new growth that replaced them consisted of trees that were all the
same age, and the weakness that caused them to succumb to all these other
"stressors" was that they were all of the same age.
This was the common denominator that tied the clusters together. It
wasn't until the underlying situation was identified that the other
theories could be incorporated in a way that all the previous factors
presented could be seen as secondary even though the inconsistencies which
should have inspired the quest for that explanation had been apparent all
along. It was only identification of the primary etiology that reconciled
factions of theorists who somehow never managed to agree that their
theories did not fit all of the facts - exactly as had occurred between
scientists and empiricists when confronted with the "Bumblebee paradox".

Yes I improved my symptoms exactly as I described. Had I not, my mind
would have been in no condition to engage in this debate. So I set out to
use my energy and restored mental function to speak out for those who have
not been so fortunate and to try and make sense of this phemonemon.
I don't hide my accomplishment in finding something that helped me. I'm
proud of it and I have offered my story to many others in the hope that it
might help them too.
But rather than ascribing my improvement to psycho social factors, would
it not seem more reasonable to blame the powerful protein synthesis
inhibitors and potent neurotoxic properties of Tricothecene mycotoxins as
an exacerbating factor in a neurological inflammatory condition such as
CFS/ME?
In other words I am still looking for a fundamental reason why I acquired
a susceptibility to neurotoxic chemicals while those who conclude that my
level of recovery was due to a psycho social behavioral adjustment are
still refusing to look at the incredibly long history that such social
factors have of not resulting in illnesses such as CFS. They are still
trying to blame factors that have no record of consistently causing these
types of problems in the same way the the tree theorists fail to examine
the exclusionary evidence which suggested that their concepts did not
address all the facts. If you examine my story, you will see that I make
no claims for deciphering the "cause" of CFS, only that I found a
desperate means to control my symptoms.

If a number of trees suddenly fall in the forest, but not in
compliance with the factors that are being implicated - will anyone hear
the significance?
-Erik Johnson

Competing interests:
None declared

Sir,

Readers may be interested to know that Erik Johnson has written
publicly about his
own recovery from CFS in a number of internet discussion groups.

"I discovered years ago that I have an extreme neurological reaction
to
unbelievably slight amounts of specific mold toxins."

"I found that my depression had a perfect correlation to cytokine
storm from
exposure to my MCS irritants."

"My perception of exposure was the best indicator - not any tests.
I trained myself to recognized subtle symptoms of exposure by
deliberately testing myself against various mold colonies."

"Soon, thanks to my ability to perceive it, I could feel that a vast
number of people in CFS support groups carried either this mold or a
lesser mold of higher toxin concentration on their clothing and were
probably suffering a long term inflammatory response in the same way I
was."

"By avoiding this long term inflammatory response I have exerted more
control over my CFS symptoms than anything else I've tried."

"Within six months of following a strategy of extreme mycotoxin
avoidance, I returned to Dr Petersons office with pictures of myself
after climbing Mt. Whitney, the highest mountain within the contiguous
48 states in the USA. I have spent the years since then controlling my
symptoms through extreme mycotoxin avoidance and being discounted by
every researcher, doctor and PWC I tell my story to."

For someone who is so against psycho-social theories of CFS, it is
interesting
to see that his own recovery is clearly psycho-social in nature. In fact,
it
is as good an example of the placebo effect in action as you are likely
to find anywhere.

David Jameson

http://www.cfs-fm-sandiego.org/Lyme/extreme_mold_avoidance.htm

http://health.groups.yahoo.com/group/cfs_research/message/14128

http://health.groups.yahoo.com/group/cfs_research/message/14182

Competing interests:
None declared

Professor Leonard Jasons DePaul University study of medical students
attributions of illness severity corresponding to different illness names
for the same symptom set indicates that selection of illness names does
indeed influence the perceptions of practitioners.
http://www.cfids.org/archives/1999/1999-4-article04.asp
This is taken as evidence of the necessity to abandon the trivializing
"CFS" in order to induce a serious response from physicians.
Many CFS patients in the USA had hoped that the medical name of Myalgic
Encephalomyelitis would inspire the appropriate response from doctors as
it had induced a more serious illness attribution in Prof. Jasons study.
The difficulties ME patients are having indicates that even this "serious
sounding medical name" has not had the desired effect.
The variability in the medical students response to the same illness
presentation described in Prof. Jasons study and the general practitioners
psychological misperceptions of IBS, which are only now being corrected,
point to the source of the more fundamental problem; General
Practitioners are influenced more by belief systems than symptoms. If the
medical students in Prof. Jasons study assessed severity according to the
illness presentation rather than correlating the severity to the name, the
symptoms presented under the different names should have resulted in the
same diagnosis. While I agree that changing to a more "serious sounding
medical name" may indeed influence suggestible doctors, I would like to
point out that people seeking the cause of their pain don't bring medical
names along to convince the doctors of the illness severity - they bring
their symptoms. If the physicians were responding in an objective manner
to the illness presentation, the name should not have made a difference.

-Erik Johnson

Competing interests:
None declared