the U.S. needs the Canadian Consensus Document

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In the article by Mary Schweitzer:

*Why the U.S. needs the Canadian Consensus Document* - Co-Cure, 05/04/08,

were some typos and other errors.

 

Below is a corrected version.

 

~jvr

 

``````````

 

Mary Schweitzer <_marymsch_ (marymsch) >

 

 

 

Why the U.S. needs the Canadian Consensus Document

~~~~~~~~~~~~~~~~~~~~~~

 

 

MAY BE REPOSTED IN FULL

 

 

 

Twenty years ago, the U.S. CDC concluded that the disease breakout at

Incline Village, NV, and other similar outbreaks around the nation, was not

Epidemic Neuromyesthenia as Myalgic Encephalomyelitis, or M.E., was called in

the

U.S.), but a new disease entity entirely.

 

CDC epidemiologist Ian Holmes and some members of a committee that had met

the previous year on the subject published an article naming the new disease

chronic fatigue syndrome (CFS), insisted it was not chronic Epstein-Barr Virus

(mono or glandular fever), and gave it a definition that looked a lot more

like EBV than the disease still known as M.E. in the UK.

 

 

[The definition of M.E. from Dr. Melvin Ramsay s textbook on the disease can

be found here: < _http://www.cfids-me.org/ramsay86.html_

(http://www.cfids-me.org/ramsay86.html) >]

 

 

Two years later, in Europe, the World Health Organization (WHO) published

its tenth revision of the International Classification of Disease (ICD-10). By

the early 2000 s, every major nation had adopted ICD-10, except the U.S.,

which is still on ICD-9. In ICD-10, both M.E. and CFS are coded together at

G93.3 in the chapter on neurological diseases.

 

 

After Canada adopted ICD-10, the National ME/FM Action Network of Canada

brought together a committee for a consensus document to help physicians

diagnosis and treat the disease ME/CFS. As a whole, the clinicians in the group

had

treated over 20,000 patients. The Canadian Consensus Document that resulted

was published in the Journal of CFS in 2003. A summary pamphlet is available

online: _http://www.mefmaction.net/documents/me_overview.pdf_

(http://www.mefmaction.net/documents/me_overview.pdf) .

 

 

Two years ago, the CDC went all-out on a publicity campaign that (finally)

stated the disease was significant and debilitating. Some of us thought that

perhaps they were going to join the 21st Century. But the CDC went in a

different direction.

 

Using a prevalence estimate closer to that of Britain's Simon Wessely than

the 1999 estimate by U.S. researcher Leonard Jason, they even suggested that

there might be as many as four million victims in the U.S. alone, quite a jump

from their estimate of 500,000 at an AACFS conference in Boston, 1998.

 

An increase in eight-fold in eight years? Either this is a much more

contagious illness than CDC will admit or there is something wrong with the way

the

CDC goes about diagnosing the illness in the first place.

 

Along with the new definition came a new set of pamphlets for physicians:

the CDC s CFS Toolkit for Professionals, available on the web at:

_http://www.cdc.gov/cfs/toolkit.htm_ (http://www.cdc.gov/cfs/toolkit.htm)

 

 

It was pretty and respectful, but in the end had little practical

information to offer physicians or patients. According to the CDC, there is no

diagnostic laboratory test or biomarker for CFS. [CFS Overview].

 

 

They offered as they have offered since the early 1990s antidepressants and

pain killers. But now they also added the solution British psychiatrists

offer overseas. There is an entire pamphlet on CBT (cognitive behavior

therapy).

 

CBT is a type of behavioral therapy that is used in everything from drug

addiction to major mental disorders. The CDC is not suggesting simple

counseling

to help the patient accept his or her limitations or live within one s

energy envelope to the contrary, the program assumes the patient accepts a

higher

degree of limitation than really exists, and needs to be taught or shown how

to try to do more.

 

The CDC s belief that improvement is in the willpower of the patient, if the

patient only knew how to use it, can be found in the final sentence of the

pamphlet on Managing Activity:

 

A subset of people with CFS are so severely ill that they are largely

housebound or bedbound, Hand stretches and picking up and grasping objects may

be

all that can be managed at first. Gradually increasing activity to the point

patients can handle essential activities of daily living getting up, personal

hygiene and dressing is the next step. - CFS Toolkit, Managing Activity

 

 

It apparently has not occurred to the CDC that these patients might be so

severely afflicted because they are beset by one or more viruses or other

microbes, or have an abnormal immune system that has left them vulnerable to

diseases.

 

Who in their right mind would suggest a program of graduated exercise for a

person who had viral encephalitis? And yet, that is what many patients with

HHV-6 have. The problem is that the CDC does not accept the possibility that

CFS patients are ill with HHV-6, or enteroviruses (coxsackie viruses, polio

viruses), or mycoplasma, or environmental toxins such as black mold. If the

solution is behavioral, we must assume, so must be the problem.

 

 

In summary, no matter what the CDC statements imply, when it comes to

actually dealing with patients, the treatments are almost entirely

psychological:

antidepressants, Cognitive Behavior Therapy, and Graded Exercise Therapy.

The only non-psychological treatment offered is painkillers.

 

With fewer and fewer doctors able to offer anything of use to their patients

disabled with ME or CFS in the United States, we cannot wait for a solution

far in the future. There already exists a set of criteria for diagnosing,

testing, and treating patients with this disease: The Canadian Consensus

Document for ME/CFS.

 

The bibliography from the Canadian Consensus Document makes it clear that

the barrier to treatment and care for patients in the U.S. is not scientific:

it is political. So must the remedy be.

 

 

Join the movement to Adopt the Canadian Consensus Document in the U.S.

To begin, go to:

 

_http://www.cfids-me.org/index.html#consensus_

(http://www.cfids-me.org/index.html#consensus)

 

 

 

Mary Schweitzer

 

Email: _me-cfs_ (me-cfs)

 

 

 

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