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Lenny Jason - Diseases can stigmatize - Jan 2014

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Posted on Tuesday, January 21st, 2014 at 8:30 am

Diseases can stigmatize

Names of diseases have never required scientific accuracy (e.g. malaria means bad air, lyme is a town, and ebola is a river). But some disease names are offensive, victim-blaming, and stigmatizing. Multiple sclerosis was once called hysterical paralysis when people believed that this disease was caused by stress linked with oedipal fixations. AIDS was initially called “Gay Men’s disease” when it was considered a disease only affecting white gay men. Fortunately, when these disease names were changed, those afflicted with Multiple Sclerosis and AIDS experienced less stigma. Inspired patient activists from around the world are currently engaged in another major effort to rename chronic fatigue syndrome (CFS). It is a political struggle to alleviate some of the stigma caused by the language of scientists at the CDC 25 years ago.

Chronic fatigue syndrome is an illness as debilitating as Type II diabetes mellitus, congestive heart failure, multiple sclerosis, and end-stage renal disease. Yet 95% of individuals seeking medical treatment for CFS reported feelings of estrangement; 85% of clinicians view CFS as a wholly or partially psychiatric disorder; and hundreds of thousands of patients cannot find a single knowledgeable and sympathetic physician to take care of them. Patients believe that the name CFS has contributed to health care providers as well as the general public having negative attitudes towards them. They feel that the word “fatigue” trivializes their illness, as fatigue is generally regarded as a common symptom experienced by many otherwise healthy individuals. Activists add, that if bronchitis or emphysema were called chronic cough syndrome, the results would be a trivialization of those illnesses...

- See more at: http://blog.oup.com/2014/01/diseases-can-stigmatize-chronic-fatigue-syndrome/#sthash.68myOFjN.dpuf

He continues to talk about attempts at redefinition as well as changing the name, and concludes:

If progress is to be made on both the name change and an empirical case definition, key gatekeepers including the patients, scientists, clinicians, and government officials will need to work collaboratively and in a transparent way to build a consensus for change. Considerable activity is currently ongoing at the federal level on these critical issues, but only through open communications and the building of trust will there be the possibility of overcoming the past 25 years, which have been marked by feelings of anger and hostility due to being excluded from the decision-making process.

- See more at: http://blog.oup.com/2014/01/diseases-can-stigmatize-chronic-fatigue-syndrome/#sthash.68myOFjN.dpuf
 

A.B.

Senior Member
Messages
3,780
Powerful vested forces have opposed changes. In the late 1990s and early 2000s, when I mentioned over the years that patients were stigmatized by the term chronic fatigue syndrome, I was explicitly told it was reckless and irresponsible to change the name.

Who or what is he referring to?
 

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
Who or what is he referring to?

I don't know specifically, but it is likely those who were involved with the name in the first place.

But "CFS" was always a historical accident and was always just a place holder. The first place holder was "Chronic Epstein Barr Virus Syndrome", which was simply altered as they expanded the criteria to include those who had never contracted EBV.

"ME" is a historical accident too (and has a history of stigmatisation too), but that is another story.

We need a new name and I dare say naming it after a person or place would be quite reasonable - that way there can be no stupid arguments about what it actually means.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
Thanks to Prof. Jason for writing on this!

In reading it, I was annoyed though that he underplayed the CDC malfeasance by omitting most of it, which at the same time talking about patient's 'negative' emotions like anger. Talking about patient's anger and distrust without showing why those emotions are more than justified, serves to make us seem somewhat irrational, imo.

Regardless, this would have been the perfect place to summarize CDC's past and current malfeasance. So, I wrote a critical post. It hasn't appeared yet (i guess it must be moderated, but it didn't say). Some of you may feel I am being to forceful, but I am sick of the soft-pedaling which just gives our oppressors cover.

Dear Prof. Jason,

Thank you for this much needed post on a very important topic.

While your writing is invariably more on the mark than other academics writing on the political-sociological-medical situation surrounding ME, I find that you here omit key information which has the effect of underplaying the severity of the malfeasance and nonfeasance of CDC and NIH. I think this can be ascribed, in great part, to the conservative nature of academia in which you were trained. As the foremost scientist in this area, I feel that your contributions to the understanding of the political realities of the disease would be even greater if you painted a fuller picture for the reader.

I encourage you to include all the key facts that will serve to present a more accurate picture of the landscape of ME politics foisted on patients by CDC. For example: At the time of CDC's renaming of ME to "CFS" in 1988, Myalgic Encephalomyelitis already was the sole official name of the disease in WHO's ICD since it was first listed there in 1969. In changing the name, CDC was responding to a 1984 Lake Tahoe outbreak of what it officially and repeatedly insisted was 'mass hysteria', but was in fact an outbreak of ME.

Federal documents uncovered by FOIA requests showed a key reason for the change of name to "CFS" was to prevent "chronic disbursements by insurance companies." (see Johnson, Hillary, Osler's Web).

In the 1994 CDC Fukuda definition process, the only clinicians and researchers with experience with ME resigned from the CDC definition committee in protest resulting in a substantially inaccurate definition which has been the standard definition worldwide for the last 20 years.

In later years, CDC produced another definition, the patently invalid Reeves Criteria which was a bald attempt to warp the science. CDC even lied in one important study, saying it used the 1994 Fukuda definition, when it in fact used Reeves. And CDC misappropriated the entire CDC CFS budget for years while repeatedly lying to Congress about it in person in sworn testimony. An on and on.

Now, the Federal government has undertaken three simultaneous bad-faith, secretive and unscientific attempts to redefine the disease and consequently many badly disabled people with ME are attempting to correct this on a volunteer basis through much hard work, but are having limited success due to CDC's usual malfeasance regarding the disease.

As you know, these facts provide only a small glimpse of the intentional warping of science in this disease by CDC and NIH, but providing some of them as context would make pieces on ME definition much more informative to the reader. I understand that scientists' reluctance to offend CDC and NIH, whence most of their funding comes serves as a powerful incentive to downplay the facts of CDC's and NIH's malfeasance, but please try to present a more wholly accurate picture in the future. I very much welcome any dialogue you may wish to have on the subject.

Please feel more than free to contact me at the email provided. Again, I do realize that you provide a much more accurate picture than other academics writing on the topic and I wish to thank you so much for all your excellent, groundbreaking scholarship in the field. Thank you for your consideration.
 
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justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
I submitted another, more personal comment:

Dear Prof. Jason,

Allow me to add as a post-script, that I specifically have been meaning to thank you from the bottom of my heart for all your amazing work, but most especially for your interview in the New York Times circa 2009 in which you characterized CDC's methodology in its "CFS" studies as "atrocious." That very word caused the turning of the corner in my then-atrocious relationship with my parents.

For seven years I had been very disabled with ME. My parents, due to input from physicians and their own prejudices (caused by medicine), thought I was, by turns over the years, malingering, hypochondriacal, obsessive, depressed and finally somaticising. At one time they nearly had me involuntarily committed to a mental institution, which frightened me due to my knowledge of what could be done to me against my will in such a setting, gained from my career as a lawyer, in part, representing people involuntarily committed to mental institutions.

For years I had told them CDC's studies were largely invalid due to their use of their own subpar definitions and horrible methodology. But they were not receiving any confirmation from their own trusted sources: the NY Times and physicians they knew. My mother's dermatologist reportedly told her that "poor people don't get 'chronic fatigue' because they have to go to work. Let him completely run out of money."

A psychiatrist my parents knew for a long time and trusted, said "CFS" was neurasthenia. He then showed them that neurasthenia is classified as a mental disorder in ICD-9CM. My parents insisted I see him and he diagnosed me with ADD. He wrote me that I may have a 'chronic fatigue syndrome', but it is entirely caused by ADD and would be cured by amphetamines. This was accompanied by a bill for $350 per hour.

When I showed my folks your characterization of CDC's "CFS" methodology as 'atrocious.' The shift in their attitudes was palpable. Due to similar affirmations in the NY Times and other trusted sources of my earlier explanations of ME to them, they slowly, over several years, have done a 180 degree turn in their attitude and now emotionally support me and financially support my medical care under Dr. Enlander at the ME Center at Mt. Sinai.

I write this both to thank you deeply and to encourage you to present the unvarnished, full truth about CDC's and NIH's intentional misconduct regarding ME to your readers. It will literally save lives. It helped save mine.
 
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Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
The was just linked to on the Daily Dish, a big and popular blog: http://dish.andrewsullivan.com/2014/01/27/a-disease-by-any-other-name/

They've linked to another Jason thing on CFS in the past too.

I think - talking about the presentations yesterday and how we might have answered the question that was set - some reference to other diseases that result in similar levels of disability, might not have been a bad idea. Indeed, when IOM complete their review, I do hope they at least consider including such a comparison. NICE do for example, and I think it helps better inform doctors as well as others how disabling ME can be. In fact I can't think of a simpler way of doing it...
 
Messages
13,774
I think - talking about the presentations yesterday and how we might have answered the question that was set - some reference to other diseases that result in similar levels of disability, might not have been a bad idea. Indeed, when IOM complete their review, I do hope they at least consider including such a comparison. NICE do for example, and I think it helps better inform doctors as well as others how disabling ME can be. In fact I can't think of a simpler way of doing it...

With ME stuff, there's always more to put in!