the POLITICIZATION of fibro, chronic fatigue and other "invisible illnesses"

[nashville_brook]

(this is a repost -- thought i'd start a new thread to give this idea more exposure. have our "invisible illnesses" been politicized? this book says yes. -- brook)


if you have one of these illnesses please pick up a copy of:

Chronic Fatigue Syndrome, Fribromyalgia and other Invisible Illnesses: The Comprehensive Guide
by Katrina Berne, PH.D

why i love this book:

i'm a political creature and i've experienced such bizarre behavior from doctors that it's NOT ENOUGH to know the etiology of what is ailing me. i want to know WHY i'm being treated like an outcast and I WANT IT TO STOP. in addition to an exhaustive discussion of causes, treatment and symptoms, this book covers the political positioning of the illness -- and nothing has made me feel quite this good in a very long time.

these are POLITICIZED illnesses. this fact is evident in the very NAMING of the diseases. take "chronic fatigue syndrome" which is also part of my dx -- what does this sound like? "fatigue" is something that happens when you exert yourself. "doctor, it hurts when i do this" -- "well, stop doing THAT."but, if you have this disease you are exhausted from doing nothing. the name "chronic fatigue syndrome" encapsulates a victim-blaming idea AND hides the fact that this disease has epidemic features. from page 10 of the book:

"In the early 1980s, a large portion of the population of Incline Village, Nevada, was stricken with an unusual illness. Drs. Daniel Peterson and Paul Cheney treated many of these patients and in 1985 called upon the Centers for Disease Control and Prevention (CDC) to investigate the outbreak. The CDC initially denied the existence of an epidemic, but later claimed they had taken the illness seriously and believed it to be related to Epstein-Barr virus. In 1988, the CDC, taking the position that the illness was not caused by EBV, RENAMED IT "chronic fatigue syndrome," issuing a case definition. The apparently disinterested CDC essentially turned its back on the devastation of Incline Village and elsewhere."

On a name-changing petition, Hillary J. Johnson, author of Osler's Web, commented that the name "chronic fatigue syndrome" was selected

by a small group of politically motivated and/or poorly informed scientists and doctors who were vastly more concerned about costs to insurance companies and the Social Security Administration than about public health. Their DELIBERATE intention -- based on the correspondence the exchanged over a period of months -- was to OBFUSCATE THE NATURE OF THE DISEASE by placing it in the realm of the psychiatric rather than the organic. The harm they have caused is surely one of the greatest tragedies in the history of medicine.

emphasis mine.

chronic fatigue syndrome is half of my current diagnosis. i paid it hardly any attention because i thought it *sounds like* just a further description of the fibro. it's NOT. it's a much more serious condition that has epidemic qualities. it entails COGNITIVE DIS(fucking)ABILITY of the kind that has plagued me since college. the name used for this disease in the UK is myalgic encephalomyletis. now THAT sounds like a respectable disease! "enceph-" means BRAIN. this is a brain dysfunction -- NOT JUST A BUNCH OF LAZY ASSES or chronically fatigued whiners.

one of the problems with this nomenclature is that it is vague and ambiguous -- it excludes MOST of the characteristics of the disease (cognitive dysfunction) and suggests symptoms of other disorders. this is sloppy and according to this author, it was sloppy for a political reason -- that a REAL, CONCRETE recognition of this disorder would overwhelm insurance companies and the Social Security Administration.

so lets wonder further -- what the fuck is going on? if this is indeed an "industrial disease" then there might also be LIABILITY. this is beginning to look like politically motivated tinkering in my life, health and body -- and fuck if that doesn't piss me off.

right now i've got about 3 good hours a day -- how am i ever going to work and support myself on three hours of productivity on my GOOD DAYS. at a congressional briefing in 1995, Mark Loveless M.D., and infectious disease specialist and head of the AIDS and CF'S Clinic at Oregon Health Sciences University, TESTIFIED that "a CFS patient feels every day effectively the same as an AIDS patient feels two months before death."

i can wave this information in front of my lawyer and most of my healthcare providers until i die and they will say, "you're not disabled because this isn't *really* a disease." which is, of course, what the CDC planned for back in the 80s.

think about the implications and let the anger wash over you.

[siligut]

1. Fight the dragon if you have a chance, otherwise, go around.

Yes, nashville_brook, exactly what I have been saying and I call it selling out to big business. Give the coiners of chronic fatigue syndrome a hand, they misdirected and disarmed in one move. As I’ve said with the skewed media, few doctors went in with a plan to betray the confidence of the public; but when confronted with losing their career which they worked so hard and long on, they cede.

This is a sample of the advice that comes from a trusted, older MD who has been a friend and confidant. It goes something like, “you are not going to get any support in your work to delve further in this chronic fatigue thing, it is a lost cause so don’t waste your time”. Now if the young doctor persists, “you really don’t know, do you? You don’t want to know, look, you get through this and you have a chance at the big time, don’t blow it”.

I don’t get mad anymore, I look for ways around it, much of why I studied alternative medicine, though it isn’t without some of this.

[nashville_brook]

2. my mother used to say "walk around it"

you can imagine she made up that saying for a reason. :evilgrin:

[hedgehog]

3. I don't think the CDC is exactly what we think it is.

Until recently, I had an image of the CDC as a top flight public health agency. Now, I'm not so sure. The tracking system for known diseases such as flu are only as good as the doctors and hospitals reporting in. The politics on emerging diseases such as the 1975 swine flu and AIDS is so bad that good science gets left behind. One disease was blown up all out of proportion, the other ignored for too long. The real shame is that we have a lot of talented, dedicated people who are trapped in the system.

[nashville_brook]

4. here's an interesting narrative on the CDC response to ME/CFS

it's by David Bell M.D. who was a young doctor in the tiny upstate NY town of Lyndonville where there was a CFIDS outbreak in the 80s. it's from his e-book on the episode, available for free on his website. i found him as i was searching for CFIDS specialists, as he lectures and remains active in the CFIDS community.

http://www.davidsbell.com/

In an attempt to make sense of the malady, I
compiled an elaborately detailed list of symptoms I
had observed in the first one-hundred patients I had
seen. By 1987, two years later, 214 people, adults
and children, were ill with the “Lyndonville mono”
- as we were calling it then - within a fifty mile
radius of my clinic.

Epidemics are outbreaks of a particular disease that
occur at a rate far higher than would be expected.
To qualify as a bona fide epidemic, all the cases
must be relatively close in time, and localized
geographically, as well. To this day, the Centers for
Disease Control in Atlanta, a federal agency
charged with monitoring and controlling the spread
of infectious diseases, has never evaluated this
worrisome outbreak in Lyndonville and the
surrounding region. At first, my wife and I called
staff in Atlanta and discussed the outbreak. We
described what we had observed, offered our shaky
theories, and waited for the disease detectives in
Atlanta to help us figure out just what had leveled
so many of our patients, young and old. The federal
scientists ran a few Yersinosis tests (an obscure
infection) for us using blood we sent to them from
our patients, which were negative. Next, they
suggested that we perform lymph node biopsies on
the earliest victims, the children from two families
who had became ill soon after that early snowfall
the year before. The federal investigators suggested
to us that if the biopsies failed to give us a clear
result, they would come to town and study the
outbreak.

Lymph node biopsies are not much fun; it requires
surgically opening the skin and removing the lymph
node tissue. With an effort, we created a little
lymph node biopsy assembly line. Six children
queued up and, one by one, submitted to the painful
and frightening procedure whereby surgeons took
lymph nodes from their armpits.

While these children were in the hospital for these
operations, I noticed another child across the hall
who had been admitted by a doctor from a
neighboring town. This child had been suffering
from fevers, an enlarged spleen, and disabling
exhaustion for weeks. He was in the hospital for
tests, too. One of the remarkable ironies of this
illness that the doctors could not diagnose: The
boy's parents quickly saw that he had the same
illness as the children we were treating. He was still
sick two years later.

All the lymph node biopsies were negative for
known illnesses. Over the years, in collaboration
with other scientists, I have continued to do tests on
the children’s lymph node tissue that we preserved
in paraffin, and I have almost run out of tissue. I
still have a small, secret stash, however. One day,
when the cause of this disease is known, I will be
able to see if the pathogen was present in the lymph
nodes of these children when they fell ill in 1985.
Scientific investigators from the Centers for Disease
Control chose not to come to Lyndonville after the
lymph node biopsies were completed. Instead, they
left the outbreak in the hands of the state health
department, but the state failed to investigate, as
well. My wife and I got the powerful sense that both
state and federal health officials thought our
outbreak of disease in Lyndonville was all hooey.
Hillary Johnson outlined those awful days in her
elegant book, Osler’s Web, a historical narrative of
several outbreaks of CFS around the world during
the 1980s.

The children of Lyndonville, and especially their
parents, hold a bit of a grudge against the Atlantabased
health agency for its failure to help us. I reign
in my temper by telling myself that, even if they
had come, the government scientists would not have
been unable to solve the puzzle of CFS. I continue
to believe, however, that they could have made one
worthy contribution: they could have prevented the
skepticism that now rules supreme in the medical
profession at large. All they needed to do was
admit, “Yes, these people are ill.” That’s all. But
that opportunity has vanished, and the entire nation
lingers in a kind of paralyzing doubt and skepticism
that cripples any concerted research effort into this
disease.

Even now, I find there is just one thing for which I
cannot forgive the CDC, however. The same
government scientists I was talking to in 1985 were
also discussing a strange form of suspected
mononucleosis in Incline Village, Nevada with
internal medicine specialists Dan Peterson and Paul
Cheney. These two doctors were struggling with
what clearly sounded like the same illness at the
same time in a small town 3,000 miles away. At the
time, Peterson and Cheney were seeking to
persuade scientists at the Centers for Disease
Control, who had sent investigators to look into the
Incline Village outbreak, that the malady affecting
approximately two out of every one-hundred people
in their region could have been related to mono. The
virus that causes mono is called Epstein-Barr virus,
and many of the Nevada patients had evidence of
being infected with it. But Epstein-Barr is one of the
viruses that can linger in a person apparently
without causing damage, and we now believe that it
has little to do with causing CFS.

I, too, had looked at the possibility that Epstein-Barr
virus could be the cause of the outbreak in
Lyndonville, but because half of the sick children
had tested negative for the virus, I threw out the
idea. But I would have loved to know that someone
else in the country was studying this clinical illness.
We could have shared notes, come up with better
ideas....It would have been so helpful, if only the
CDC scientist had said, “By the way, you might
want to call....”

[hedgehog]

5. I think the key point I take from this is that when no one was able to identify

the disease as an existing disease, there was no follow-up to see just what was going on. I suspect it may be a matter of not building research into emerging diseases into the budget. A cynical person might also guess that some researchers are only interested in diseases with the potential for developing a lucrative vaccine or treatment. AIDS/HIV was ignored until it was determined that a virus was involved and then the race was on to identify the virus. Unfortunately, there still isn't a vaccine. At the same time, there is still some debate about whether some symptoms are part of the disease or side effects of the medication because the natural progress of the disease was so poorly documented.

[nashville_brook]

6. interesting question: what is CDC's mission?

http://www.cdc.gov/about/mission.htm

CDC Mission

To promote health and quality of life by preventing and controlling disease, injury, and disability.

CDC seeks to accomplish its mission by working with partners throughout the nation and the world to

* monitor health,
* detect and investigate health problems,
* conduct research to enhance prevention,
* develop and advocate sound public health policies,
* implement prevention strategies,
* promote healthy behaviors,
* foster safe and healthful environments,
* provide leadership and training.

Those functions are the backbone of CDC’s mission. Each of CDC’s component organizations undertakes these activities in conducting its specific programs. The steps needed to accomplish this mission are also based on scientific excellence, requiring well-trained public health practitioners and leaders dedicated to high standards of quality and ethical practice.
CDC Pledge

CDC pledges to the American people:

To be a diligent steward of the funds entrusted to it.

To provide an environment for intellectual and personal growth and integrity.

To base all public health decisions on the highest quality scientific data,
openly and objectively derived.

To place the benefits to society above the benefits to the institution.

To treat all persons with dignity, honesty, and respect.

CDC Core Values

Accountability — As diligent stewards of public trust and public funds, we act decisively and compassionately in service to the people’s health. We ensure that our research and our services are based on sound science and meet real public needs to achieve our public health goals.

Respect — We respect and understand our interdependence with all people, both inside the agency and throughout the world, treating them and their contributions with dignity and valuing individual and cultural diversity. We are committed to achieving a diverse workforce at all levels of the organization.

Integrity — We are honest and ethical in all we do. We will do what we say. We prize scientific integrity and professional excellence.

[nashville_brook]

7. website: The Committee for Justice and Recognition of Myalgic Encephalomyelitis

http://www.geocities.com/tcjrme/

here's their mission:

The Committee is an international patient based association dedicated to promoting Justice for the victims of Myalgic Encephalomyelitis; and we are dedicated to achieve the full public Recognition of the dangers of this worldwide disease epidemic. We will demand that the national health agencies of all governments admit that Myalgic Encephalomyelitis is a serious disease and an increasing worldwide health disaster.

Toward that end The Committee will disclose the truth about the disease and history of myalgic encephalomyelitis. We will present the medical facts about ME, and examine the politics and motivations that have led to the public health agencies’ mismanagement of, and dishonest response to this disease epidemic.

To advance the goals of Justice and Recognition of ME, the Committee will promote patient advocacy efforts and support patient campaigns that demand the end to the programs of delay and deception. We will promote efforts that demand that the national health agencies support an urgent and vigorous investigation into the causes and cures for this devastating epidemic. The greater concern for the public worldwide is that the outbreaks of ME continue, the numbers affected are growing and the epidemic spread may only be at its beginning.

The Committee supports educational efforts toward the recognition that Myalgic Encephalomyelitis is a complex multi-systemic disease, producing neurological and metabolic dysfunctions. ME is a devastating disease from which few recover, and results in a large number of people permanently disabled.

ME outbreaks and sporadic disease has been documented for many decades. ME appeared most commonly during local polio outbreaks, and at a high rate among hospital personnel. At onset ME resembles polio, and for many years was considered a variant of polio and classified as Atypical poliomyelitis.

Although Myalgic Encephalomyelitis had been reported in the medical journals many times over the past century it was considered a rare disease. Despite this profile, during the 1980’s ME exploded into an alarming worldwide epidemic. For example during the last 20 years ME progressed from a rare disease to now claim over a million victims in the USA alone.

Upon this background of alarming community outbreaks, pleas from doctors, a contagious pattern and an expanding epidemic spread, the government health agencies did not act in a straightforward manner to determine the nature, cause, and extent of the epidemic, nor to alert and protect the public.

As the leading example, in the USA, the Centers for Disease Control (CDC) is the agency entrusted to actively investigate precisely this type of major health hazard. Rather than fulfilling its mandate, for some reason, the CDC abandoned their duty and proceeded to avoid its investigation. They then proceeded to develop and implement policies designed to disguise the disease, and confuse the medical community and the public. The centerpiece of this program of confusion and distraction was forged by changing the name of ME to CFS, interpreted by all as an innocuous, unexplainable fatigue condition. This instantly cut off the disease from its history and prior medical investigations and reports. Replacing knowledge with ignorance.

These actions rendered doctors ignorant of the history and the established neurological infectious nature of this epidemic disease. This new name distracted doctors and the research investigators with a major effort that proclaimed a “new illness” and focused all attention on fatigue. These policies of concealment even go so far as to advise doctors not to investigate patients for the infectious causes. Many other governments immediately followed the same model. These policies have not diminished this epidemic, or protected the public, or sought to determine the cause of this disease. These policies reveal a clear pattern of malfeasance and disregard for the public’s health.

Our evaluation brings us to the clear conclusion that the greatest problem patients face in receiving proper health care has more to do with the politics surrounding this disease than the difficulties or the complexities of medical science.

We believe it is also our duty to alert the general public that this devastating disease epidemic shows no sign of ending, which means that all our fellow citizens are at risk to be its next victim. Therefore we will promote patient and public understanding of ME, and demand that the national health agencies end the policies and practices of deliberate roadblocks, distraction and dishonesty. These policies have had enormous consequences and continue to extract a tragic toll.

Many people have died from Myalgic Encephalomyelitis and there are now millions disabled by this epidemic. It is time to put an end to the cover-up of this epidemic.

We encourage patients from all countries to work together to end this epidemic! Protect Yourselves. Learn about your disease. Educate your doctors. Alert your fellow citizens to the dangers.

[Duppers]

8. from my email inbox yesterday

AS IF THEY'LL HAVE ANY POLITICAL CLOUT WITH THE CDC!!!

>>
Advisory Board Proposes New Name for CFS!

Today - January 31, 2007 - is a landmark for 'Chronic Fatigue Syndrome' patients and our Campaign For A Fair Name.

I could not be more pleased to announce that the eight members of the CFS Name Change Advisory Board of experts have reached consensus on a suggested new name for this disease - and at their recommendation ProHealth will submit their proposal to the community. Because of the gravity and timeliness of this landmark decision, we will send you a special, separate e-mail informing you of their finding. So please look for it in your e-mail inbox within the next few days.

These dedicated scientists have taken their responsibility in the campaign very seriously, and their commitment to CFS patients is unwavering. Though a period of comment, debate, and planning is sure to follow, I know you will join me in extending them our sincere thanks for their extraordinary efforts. And thank you for your patience and support.

Your fellow advocate for justice in finding an appropriate name for CFS,

Rich Carson

CFS Patient and ProHealth Founder
>>


Brook, I've been a long-time suffer who can greatly empathize with you. When I lived in England, almost everyone had heard of ME and didn't consider it a laughing matter as they do in this country. Most don't even want to understand it.

I remain cynical as ever, but we must fight on.

-duppers

[Duppers]

9. THE new name: "Committee members preferred 'Myalgic Encephalopathy'"

For what it's worth CFS is now 'ME/CFS.' The name change will give more credibility to our aliment, I think, and sympathy for our suffering.

From an email:

>>
A group of noted CFS researchers and clinicians met January 12 in Florida to discuss whether 'Chronic Fatigue Syndrome' was an appropriate name for the disease, and to suggest an alternative name if necessary. Patients and CFS clinicians have long held that 'chronic fatigue syndrome' trivializes the serious nature of the disorder, and have called for a change of the name first adopted by the CDC in 1988.

The impetus for assembling the group was the belief that a panel of the world's leading experts could provide legitimacy and scientific credibility to patients seeking a new name.

The committee, called "the CFS Name Change Advisory Board" by its organizer, CFS patient Rich Carson, included Drs. Lucinda Bateman, David Bell, Paul Cheney, Charles Lapp, Nancy Klimas, Anthony Komaroff, Leonard Jason, and Daniel Peterson. Dr. Peterson was unable to attend the meeting, but was consulted via telephone afterward.

Committee members agreed that CFS downplays the severity of the disease and is hurtful to patients, and discussion focused on alternative names. The majority of attention was spent discussing 'ME' - the name first used to describe the illness in an editorial published in The Lancet in 1956 by Sir Donald Acheson, MD. 'ME' has been used in many countries, including Great Britain.

'ME' has historically been used to describe 'Myalgic Encephalomyelitis' (nervous system inflammation involving muscle pain) - a term that does not accurately describe the disease process in all patients. Committee members preferred 'Myalgic Encephalopathy' (nervous system pathology with associated muscle pain), which is also abbreviated 'ME'. This satisfied the researchers that this form of the term 'ME' is diagnostically accurate.

Recent scientific advances point to the usefulness of the ME label, as brain pathology with often painful consequences, especially in muscle, is increasingly documented in patients with this condition.

The group recognized that dropping CFS completely from a new name could cause problems with disability and medical insurance claims, and recommended that 'CFS' should accompany any new name, at least for a period of time. It was acknowledged that CFS currently has some name recognition, though according to the CDC, less than 20 percent of the patients have been diagnosed.

The researchers expressed their belief that the term 'ME/CFS' (or 'CFS/ME') is diagnostically accurate and, unlike CFS, is not pejorative to patients. It was also noted that this move is consistent with events occurring in different countries, such as Canada, where 'CFS' was recently changed to 'ME/CFS'.

In a recent related event, the board of directors of the International Association for CFS (IACFS) voted to recommend that the name of that organization be changed to the IACFS/ME. This motion is currently being voted on by its members, and if approved, the name of that organization will soon be changed.
>>