Saturday, June 27, 2009

Legal Challenge to CDC's AIDS definition


It might be of interest to know that the CDC's AIDS definition was successfully challenged in 1993. Below are references to this lawsuit I was able to find on the web.

--Liz Willow


By Josh Barbannel
Published: Tuesday, October 2, 1990, New York Times

Hundreds of women, children, drug addicts and homeless people disabled by the AIDS virus are being improperly denied Federal benefits because the Government is using a flawed and outdated definition of the disease, a lawsuit filed yesterday in Federal court in Manhattan charged.

According to the suit, the people are being denied benefits even though they have been repeatedly hospitalized for disabling conditions, including gynecological disorders, tuberculosis, heart infections, bacterial pneumonia and kidney failure.

These symptoms are not included in the definition used by the Social Security Administration.

''I've been having strong pains since the last time I have been in the hospital,'' said one plaintiff in the suit, identified in court papers and in an interview only by her intials, S.P.

The Social Security Administration referred calls about the lawsuit to the Justice Department, which said it was unfamiliar with the suit.

At the heart of the suit is a dispute over the definition of AIDS promulgated by the Federal Centers for Disease Control in Atlanta to track the spread of the epidemic. That definition has been used, the plaintiffs said, to award or deny Government benefits.

The Federal definition lists a number of ''indicator'' diseases, like Kaposi's sarcoma, a skin cancer. The definition was drawn up after studies of early AIDS victims, often middle-class homosexual men.

Theresa M. McGovern, a lawyer with MFY Legal Services, the lead counsel in the lawsuit, said that so far the Centers for Disease Control had not conducted large studies of the effects of AIDS on women or other groups of patients. She said it was ''irresponsible'' for the Social Security Administration to rely solely on the centers' definition.

The suit seeks to be recognized as a class action representing thousands of women, children, drug users, homeless people and poor people with AIDS across New York State.


S.P. et al. v. Sullivan (Federal Court, New York)

SETTLEMENT CONFERENCE. This lawsuit challenges the Social Security Administration's (SSA) reliance on the Centers for Disease Control's grossly inadequate definition of AIDS for awarding Social Security disability benefits. The SSA regulations challenged here granted disability benefits automatically to anyone with HIV whose doctor certifies that they had one of the opportunistic infections recognized as HIV-related by the CDC. However, the CDC definition did not include many of the diseases which manifest in women, drug users and low-income people. Benefits applicants who were disabled by these non-recognized diseases not only had to provide medical evidence regarding their HIV status but also had to satisfy an additional and very difficult "functional" standard to prove they could not function normally in the work world. In July 1993, the SSA announced new regulations governing disability benefits for people with HIV which address virtually all of the
concerns raised by our lawsuit. The new regulations added the predominant manifestations of HIV in women, drug users, and low income people as criteria by which HIV-infected individuals can qualify for disability benefits. A settlement conference with the Department of Health and Human Services before Southern District of New York Judge Cedarbaum is scheduled for mid-September. Terry McGovern of the HIV Law Project is lead counsel on the case. Other participants include MFY Legal Services, Brooklyn Legal Services, Cardozo Law School's Bet Tzedek Legal Services, and the Center for Constitutional Rights. Suzanne Goldberg is Lambda's attorney on the case.



(Here's the history behind this:)


From the ACT UP Oral History Project     

Maxine Wolfe Interview   February 19, 2004    excerpt pages 81-93

Jim Hubbard:  What about the campaign to change the CDC definition of AIDS?

Maxine Wolfe: Actually, I think that that was probably the best kind of campaign that you could possibly organize, using every single kind of organizing tactic and things really working well together. First of all, I think that it was a monumental change. It was a definite thing that made a difference in people's lives, because there were women who were just not getting any kind of help -- women who didn't even know they were infected, until we started doing that stuff.

It started out by us doing this Women and AIDS teach-in -- which I loved about ACT UP, which people don't even talk about -- the teach-ins, which were just educating ourselves about issues, and then creating booklets. The handbook that we created for the women and AIDS teach-in, went all around the world. Not the book, the handbook, in its Xeroxed form, went all over the world. It went to the Australia conference. It just went everywhere. We sent it anywhere to anyone, and people found out about it immediately and started writing to us. We would just ship them out, ship them out. And, basically, because people had been doing work with women with HIV that women with HIV were getting infections. It started, actually, when we did the Cosmo thing, because we worked with -- what's her name? This woman who had done this research, showing that in Connecticut, the number of cases of bacterial pneumonia amongst women was huge, and that they were dying. And we started talking to these people and found out that women would show up at hospitals with what seemed like pneumonia, and nobody would do a bronchoscopy. People would assume it was bacterial pneumonia, or they would assume that it was flu and they would give people aspirin and tell them to go home, and women would die. And, she had sort of traced the death rates in the tri-state area, to show how many women had been dying of bacterial pneumonia, which was ridiculous, like it was an epidemic of bacterial pneumonia. But, it wasn't. It was HIV, really.

So, we knew it then, okay? And we started doing all kinds of research about what kinds of infections women get. And we did this teach-in, and the teach-in was about the different infections and we actually wrote up sections that were on, for instance, what is it that occurs vaginally? Well, we did yeast infections, which, of course -- all yeast was on the Center for Disease Control definition of AIDS, but not vaginal yeast -- like, yeast is yeast. There were various forms of tubercular bacilli, that would form in women, in different places than men. And, so, we did stuff on that. And we did stuff on bacterial pneumonia. We did stuff on cervical cancer. And, I should say, after the Nine Days of Action, women's committees starting forming in other parts of the country, and we had a national women's committee that we did phone calls and stuff with, and this whole thing was worked on nationally, but it started in the ACT UP teach-in.

And then we started talking to women with HIV, and we found out, yeah, they were getting all this stuff, and nobody knew what to even tell them about what to do. And then, we were doing this teach-in, and Terry McGovern came to ACT UP. She came to ACT UP, not about women and AIDS. She came to ACT UP, because she was going to do an action about the New York City Housing Authority throwing out somebody who had had a partner who died of HIV. And she had gone to Lambda Legal Defense, which had done the one about the private housing -- I forget what the name of that case was -- the Braschi case, I think it was. And, nobody wanted to help her. They didn't know who she was. She was a Legal Aid attorney. They gave her the brush-off, and basically said that they don't deal with that kind of client.

And so, she came to ACT UP, because she thought that what was needed was some kind of an action outside the New York City Housing Authority and she asked us if we would do the action, because we had a Housing Committee then. And, she was sitting in the room, when we were talking about the women's infections. And she suddenly started putting two and two together, because she had been representing women who had been denied disability benefits, and she realized that they were being denied benefits, because they were having infections that we were talking about. She did not know anything about what the infections were for HIV. So then, she came to us and said, this is what I think is going on. So, in fact, then, we all also went to Lambda and they couldn't figure out how to do this, because none of them were seeing women with HIV. So, they have been trying to get the CDC definition changed to include women and IV drug users, but they had no idea how to do that, because they didn't know on what premise.

But she knew that she could sue. As soon as she saw our stuff, she knew she could sue vis-a-vis the disability -- not the generic definition of AIDS, but the disability definition of AIDS, because they were being denied disability. So, she ended up -- we helped her write that lawsuit, put in all the research, and then Linda Meredith, actually, who was in ACT UP/DC, organized from DC, to do this action at Health and Human Services, which was the kick-off for the campaign.

And, the slogan was, Women Don't Get Aids, They Just Die From It. And we had tombstones. And that's when all the women like Iris came, and Phyllis Sharpe and we had a speak-out of women with HIV, talking about all the infections that they got, and did this big demonstration and that was the day that she was filing the lawsuit. So, that was, actually, basically, to kick off the campaign, to have this thing.

And one of the issues that we always had, even within the group that was doing that was that terror was very focused on the disability benefits, but there were other outcomes of this, that were just not about disability, which is that, if you don't define a kind of infection that's associated, you don't do research. You don't do research, you don't get any treatment. So, it's not just that you don't get disability benefits, because who wants to get disability benefits and die. It's that you want to make sure that if people are doing research or developing treatments, they're also developing treatments for the things that you get and not just what somebody else gets, and that they're not giving you drugs that haven't been tested on you that can cause cancer of the cervix, when that's something that you're going to get.

So, we did that one, and then, Linda, before that, had been living in -- when did we do that? I have to remember the timing -- that was to launch the lawsuit. And then, Linda had been living in Atlanta before that. And, when she had been living in Atlanta, we had done actions with people in Atlanta. We had done actions in Columbia, South Carolina -- we had done a whole bunch of things.

So, I knew the guy who was, then, pretty much the most active person in ACT UP/Atlanta. He was also a lawyer. His name was Chip Rowan. And, they were also wanting to do something about the sodomy demonstration. So, we decided that our first demonstration about the CDC would be about both of those things, and it would take place on World AIDS Day, which was December 1st -- it would be around that time. In October, we did the one at HHS, and then we organized this action in Atlanta that was called, Two Days, Two Ways to Fight For Your Life. And the first day was about the sodomy law in Georgia, and the other day was about the CDC definition, and that was the first demonstration that we did. And we did teach-ins down there about the CDC definition and we did a lot of -- that was the first time that we spoke to people at the CDC and that's when, whatever his name is, said, "What, lesbians get AIDS?" He was a horror. He was one of the people at the CDC -- I forget his name. I probably have totally blanked it out.

So, we did that demonstration. But, it also involved -- that fall was an amazing fall, because that fall we also had the first -- no, that was the next fall. So, we did that, and then we did that demonstration around January, the first one was in January of 1990. The second one was in December of 1990. We did October of '89, then we did January of '90, and then we started doing this thing where we got in touch -- we did this campaign to get as many people on board as possible. We started putting out this thing about change the CDC definition. And we put out all kinds of -- let me just go back for a second. I want to make sure that I'm getting the timing right, because we got a lot of women involved -- the first women and HIV conference. We were already doing the CDC definition stuff, so we had done it.

So, we did that action and through the action, we met people, because we were in Atlanta, and that's where the Centers for Disease Control is. There's this really great gay man, Jim Williams, who worked for the National Education Association -- their health network -- arranged for me to do a talk at their -- when the CDC held a conference for health educators. And I got to speak to these people from all over the country and tell them about CDC definition. We spoke anywhere in the United States that people would invite us -- anybody from the women's committee from around the country. So, we got loads of people to sign onto this campaign. We got people to send postcards. We got people to sign petitions. We had the most radical listing of things. We even wanted them to change the terminology, like, what is this, the way that they put people into categories for AIDS transmission is crazy, because if you ever used drugs, they put you in that category first.

It doesn't matter what else you are. And the only people that had two categories, eventually were, like, gay men who used drugs. But, women, if they fucked somebody and used drugs, they were in the drug category. Nobody was willing to say that they got it heterosexually. This is like, about that thing you said before, just anyway that you could to keep that out of the thing. So, we got all these people to kind of sign onto this -- people who ran youth programs. We eventually had 300 people -- 300 different groups across the United States of every kind that you could imagine, who signed onto the CDC definition campaign. And we would constantly be sending them information about everything that was going on. We were sort of the center of it. And then we decided that we would do a second large action that would be in Atlanta. And that was going to be that year on World AIDS Day -- the end of that year -- I think it was 1990. But, also, over that year we had
been pressuring the National Institutes of Health to do a conference on women and AIDS. And they didn't want to do a conference on women and AIDS, and we kept pressuring them and pressuring them, and when we did the NIH action, my affinity group sat in Dan Hoth's office and we put flyers in every file cabinet there. They've got to still be there -- about, you know, you must do women and AIDS stuff. And, eventually, we convinced them. After the 1990 San Francisco Conference, we sent them a threatening note, I must say. We had sat in their offices, which they didn't every expect. And Dan Hoth got scared to death. He was the head of clinical trials, I think, for the ACTG research system.

And, at the San Francisco conference, we just held up a banner, because there was this whole thing that went down at this conference. But, anyway, we held up a banner. But then, Linda Meredith handed him a note and the note said, basically, we're coming back to your office. And he was not wanting to talk to us on the phone, but when he got that note, he spoke to us on the phone, and we forced him to hold a woman and AIDS Conference -- the first one -- which was held in December of '90, also. Originally, they wanted us to be part of the planning, and Linda was part of the planning, but we made it clear that we would not rubber-stamp what they did. And so, at the beginning, it was really interesting because there were all these women, who were from all over the country, who had been waiting for this day, because all of this stuff had been suppressed. There had been women researchers who had been pushing for this for years and nothing was happening. And, in fact, one woman said to another woman at this planning board meeting, how did we ever get this conference? We've been pushing for this conference for years, and nobody did it. And another woman said, because 20 people sat in at Dan Hoth's office, and he got scared to death.

So, they were all willing to do the best conference there was, but the government wasn't. And, what they used to do and they still do is they run their own conferences, and they put the researchers there that they want to be there, who are going to say what they want those people to say. And at the point, what they wanted people to say was that there was no difference, whatever. And so, we, basically -- Linda, eventually dropped out of the planning because she said she wouldn't have her name associated with a conference that had been -- after the whole schedule had been set, the government people took it and totally decimated it, and put only their people there. And we wanted them to pay for women with HIV to come, and they wouldn't do it -- this whole thing. So, that's when we wrote up our first women's treatment and research agenda, and we handed it out at that conference, and we all showed up, anyway. And, all the women got organized. And, when the guy from the CDC spoke, we opened up a banner and everybody started screaming at him about how wrong he was. We did a lot of actions at that conference, but the main thing at that conference was that a lot of women with HIV came from all over the country, and they formed a group, and they ended up -- when Tony Fauci was speaking, and he was basically saying that they didn't know anything about women and AIDS, but he was going to talk about men and AIDS, and he started doing AIDS 101 --all hell broke loose.

And everybody got up to the microphone and said, hey, you sit down, we have something to say. And they had written up a whole statement about, you know, the three things that they needed was, they needed the CDC to change the definition of AIDS. They needed women in clinical trials, and they needed to get their disability payments, and that sort of got a lot more women involved, and then they -- a lot of those women -- came to the CDC action, because then they got in touch with us. And so, the second CDC action -- we went down to Atlanta and did a really big action in front of the Centers for Disease Control, and also took over the head of the CDC -- his offices -- and a lot of people got arrested. It was the most pouring rain day I've ever seen in my life. It was not to be believed. And people stayed out there. Women with HIV stayed out there. It was just really powerful.

So, after that, they thought that that was it and that we would give up. And, I think this is what was really important -- we just kept going. We didn't just do direct action after that. We did a lot of small things. We monitored what they were doing, and every time they tried to change the CDC definition and not put in women's stuff, we would do something. And we did things like -- because we had this mailing list now, from all over the country -- so, we would send out an alert. James Curran is trying to change the CDC definition. He's not putting in any of the women's infection. Write to your senator, call your congress person, tell them you're demanding a congressional investigation of the Centers for Disease Control. Boom, he would stop.

Then he'd try again. They tried, at the CDC three or four times in the next two years, to change the definition to what they wanted it to be, which was, basically, 200 T-cells, and no specificity of women's infections or the infections that drug users got, at all. And the main reason that people supported the 200 T-cells, is because there were a lot of health care providers, who were seeing people with those T-cells, who are not considered to have HIV, because they didn't have the infections that were on the list. And so, they weren't getting reimbursed from the government. So, they wanted the 200 T-cells, and they didn't care about the rest of it. So, we just kept plugging along, plugging along. So, finally, he shows up -- and I told you, we sent this stuff all over the country and all over the world. So, a lot of people in Europe, from the World Health Organization, got in touch with us, because even though there's socialized medicine in most of those
countries, whatever the CDC does, the World Health Organization was doing, so, they weren't recognizing women with HIV. So, we had all of this stuff.

So, when the '92 Amsterdam Conference happened, and women from ACT UP went there, all these women from all over the world joined with ACT UP and confronted James Curran [documented by DIVA TV] and said, you have to change the CDC definition of AIDS. And he still didn't want to do it. So, we demanded that he had to hold a public hearing, to show that he was right. And first he tried to manipulate that hearing, and to only have his kind of researchers. And we got all these people to say that he was wrong. And so, he finally had a hearing that took place in Atlanta, that we got women with HIV to speak at, that we got the doctors to speak at, who had actually been doing the research. And they got up there, and they basically said, there's no question about it, here's what's going on. And we got the media down there. We got money to get women with HIV down there. We got the media down there, okay? This was after four years.

JH: How did you do that?

MW: You mean, the media stuff, or the women?

JH: The media. The women, the money for the women.

MW: They were so afraid of us by that time. We had done all these demonstrations. We had gotten groups that were so diverse, to support this campaign, from all over the country. We showed that we could get Congress people who would start to investigate the CDC. We used every single tactic that you could possibly use. It was really like community organizing and political organizing at its best. It went from the grass roots up, and we had this committed group of people. We would send out a letter and say, write a letter to your Congressman, and all these people would do it, because they wanted to change it. And then, when they happened to be at a public meeting in Amsterdam, and there were international people saying this -- and because we had developed contacts with the media, they came. Bruce Merkin wrote really excellent stuff for us, at the very beginning, in Los Angeles. And, Ellie Burkett wrote stuff for us -- articles for the big CDC definition in Atlanta. She wrote it in the Miami Herald, and it got picked up by other people. So, over time, we just developed all of these contacts with an incredible range of people, who realized that what we were saying was true. It wasn't like we were asking for something that was crazy. And, that there were women who were dying, because they were being denied food on their table, because people wouldn't admit that they had HIV, when they had HIV.

So, after that hearing, at the very end, he came out to do his speech in front of the media and basically what he said is, they're right, we're going to have change the CDC definition of AIDS. And then, that fall -- in January of '94 -- it was after Katrina Haslip died. She died in December of '93, '94 -- it was '92. We had been working on it from 1988. It was 1992 that they changed the CDC definition of AIDS, to include all that stuff. And you know what? When you look at the listings of what diseases women have -- they have bacterial pneumonia, they have cervical cancer. That's what they're getting. It wasn't anything unusual. We knew that stuff. So, it was pretty amazing.

JH: Did they change it to exactly what ACT UP wanted?

MW: No, they didn't change -- we told them that they had to, like -- well, some things have stayed, even though they didn't want it. We wanted all testing sites to be anonymous -- that was part of our thing. We took everything that the CDC did, we had on our agenda. And, the fact that there are any left is because we fought for them, because originally, that was not true.

They didn't change the categories, but they did put in the infections, and they put in infections that both women and drug users get. They didn't put in all the infections, but they put in the major infections. So, a good part of what we wanted was in there. But, it was an incredible victory, because it was something that affected hundred, thousands, millions of women, probably, across the world, eventually. And yet, it was incredibly political. It had a whole set of radical politics associated with it, and it was using every kind of organizing technique. And, it also showed -- you know, people always think that ACT UP didn't have any contact with -- it was sort of like the radical group to everybody else's conservative group. And the truth is, is that there were many, many service providers, across the United States and around the world, who really valued what we did. They didn't see us as being outside of them, because we got in touch with most of
them. People don't know that. They think that everything about ACT UP was about, either capitulating to the government -- in the case of, like, selling out -- or, like, not having anything to do with the government. And I think that in its best form, the thing that was amazing about ACT UP in the best things it did, was that it did both, without giving up either. You know, you didn't capitulate to anybody, and you still got something.


From the mission statement of the ACLU's HIV/AIDS Project (note the last sentence):

"No one should be deprived of their basic constitutional protections of equality, privacy or free expression because they have HIV or AIDS. The AIDS Project fights to eliminate discrimination against people living with HIV/AIDS in all aspects of society, including employment, housing and public accommodations. We also work to ensure that people can make informed decisions about HIV testing and treatment, and to challenge government responses to HIV that reflect prejudice rather than scientific principles."



Offered as food for thought.

--Liz Willow

* * *
Would be nice if we could challenge the CFS definition the same way.
However, Social Security does recognize that CFS can be disabling, and that standard blood tests will be normal.  It is, under 99p, possible to get benefits for CFS ... but "possible" and "realistic" aren't the same thing, because too many judges are still prejudiced against what they think is just lazy women who want to "get paid to watch soap operas".  (A charge actually levelled against me by someone who doesn't know that I hate soap operas; I'm not particularly fond of anything on daytime TV.)
The bigger problem I have is that the judge I'm dealing with refuses to acknowledge any evidence that there's something wrong.  Any expert (even his own) who says I'm not depressed and can't work, is either dismissed as incompetent or not even mentioned at all.  Any eyewitness who says they've seen objective signs/symptoms is dismissed as "not credible", without the legally-required explanation of why their testimony is not credible.  Any test results that show something wrong are never mentioned. 
I meet all the *legal* criteria for SSDI, but this judge has his own criteria, and those criteria say that no one is ever disabled; there's always some generous employer willing to pay good money for someone to call in sick all the time and accomplish nothing while they're there.  Unfortunately, there's no way to have a Federal judge fired.  (See prior article, about a year ago, quoting the Washington Post on that topic.)  All you can do is appeal and appeal and appeal again until the Court of Appeal decides to overrule him instead of just sending it back for the same judge to try again to reach the right conclusion.


CFS Calculator

Perhaps some polite corrections would be appreciated.  They don't seem
to be denialist, just confused.

And perhaps the Canadian 2003 definition would be implemented, if
requested and a pointer to Carruthers et al. provided.  All you have
to say is that the definition they used is obsolete.

One of the questions is "Feeling tired even after 24 hours of
exercise    ".  Read that one again closely.


Tiredness and feeling full of life are the two extremes that we all go
through in our daily lives. But there are some people who perpetually
feel tired. If you are such a person remember you may be a victim of
'Chronic Fatigue Syndrome'.

This strange disease affects more people than AIDS, tuberculosis or
multiple sclerosis. The disease was originally termed as 'The Yuppie
Flu' - as it was first noticed among the young professional women in
there 20s and 30s. It was at first not treated seriously as not
everyone were fond of the ' young upwardly mobile professional person
(Yuppie)' who had made it big in the stock market boom in the 80's.

It was however wrongly attributed to burnout or depression as a
consequence of the excess pressure. A woman's lifetime risk of
developing this disorder is much greater than that of lung cancer. The
relatively low awareness about this disorder means that it is more
prevalent than what is perceived at the moment. It is now estimated
that w omen are more prone to chronic fatigue syndrome then men and
their risk is two to four times more.


Tuesday, June 23, 2009

Genetics, CFS and Depression

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Genomics. 2009 Jun 17.

An Integrated Approach to Infer Causal
Associations among Gene Expression,
Genotype Variation, and Disease.

Lee E, Cho S, Kim K, Park T.

Interdisciplinary Program in Bioinformatics, Seoul
National University, Seoul, Korea.

Gene expression data and genotype variation data
are now capable of providing genome-wide patterns
across many different clinical conditions.

However, the separate analysis of these data has
limitations in elucidating the complex network of
gene interactions underlying complex traits, such as
common human diseases.

More information about the identity of key driver
genes of common diseases comes from integrating
these two heterogeneous types of data.

We developed a two-step procedure to characterize
complex diseases by integrating genotype variation
data and gene expression data.

The first step elucidates the causal relationship
among genetic variation, gene expression level, and

Based on the causal relationship determined at the
first step, the second step identifies significant gene
expression traits whose effects on disease status or
whose responses to disease status are modified by
the specific genotype variation.

For the selected significant genes, a pathway
enrichment analysis can be performed to identify the
genetic mechanism of a complex disease.

The proposed two-step procedure was shown to be
an effective method for integrating three different
levels of data, i.e., genotype variation, gene
expression and disease status.

By applying the proposed procedure to a chronic
fatigue syndrome (CFS) dataset, we identified a list
of potential causal genes for CFS, and found an
evidence for difference in genetic mechanisms of the
etiology between CFS without 'a major depressive
disorder with melancholic features' (CFS) and CFS
with 'a major depressive disorder with melancholic
features' (CFS-MDD/m).

Especially, the SNPs within NR3C1 gene were shown
to differently influence the susceptibility of
developing CFS and CFS-MDD/m through integrative
action with gene expression levels.

PMID: 19540336 [PubMed - as supplied by publisher]
* * *
I wonder if "CFS with a major depressive disorder" is actually just a case of depression sloppily misdiagnosed as CFS?
Under the original diagnostic criteria, anyone with a history of depression was precluded from receiving a CFS diagnosis.  CDC's repeated revisions of the diagnostic criteria have now blurred the line to the point that their questionnaires are including people with depression and other emotional disorders, and excluding patients with severe CFS.

Protect the Rights of People with Pain

Hi, I signed the petition "Urge FDA to Protect the Rights of People with Pain". I'm asking you to sign this petition to help us reach our goal of 1,000 signatures. I care deeply about this cause, and I hope you will support our efforts.

New Cheney DVDs Available

The DVDs of the seminar Dr. Paul Cheney presented on April 25th in VA
are available. Or at least the version for the US and Canada (NTSC
format) is available.

There are two discs, and the way this company is set up, you must order
both of them - so be sure you order Disc One and Disc Two.

Place orders at:

The cost is $6.00 for each disc; the shipping charge for US orders is
$5.00, bringing the cost of the set to $17.00 for US orders.

I believe all Canadian (and all overseas orders for that matter) will be
$6.00 per disc, $8.00 shipping, for a total of $20 for all overseas orders.

The PAL format is still being processed and won't be available until
later in the week. (I think most DVD players overseas will play the NTSC
format. These discs are not region coded, but we are producing the PAL
format for those who want the certainty that the DVDs will be compatible.)

I'll post more info on the actual contents of the DVDs as soon as I have

Again, place orders at:
All the best,
Carol Sieverling


Monday, June 22, 2009

Iatrogenic Illness

Senator "Byrd developed a staph infection while hospitalized"
There's a sense among many that the only people who get staph infections while hospitalized are those who go to sub-standard hospitals.  Certainly a US Senator, and an elderly one at that, would not be taken to a filthy ghetto hospital.  I'm sure he's at the best hospital in the area.

Like so many things, people convince themselves that iatrogenic infection/illness/death only happens to people who've made some avoidable mistake to bring it on themselves.  Imagine the surprise when they learn that I was misdiagnosed and maltreated at well-respected big-city medical groups, one of them staffed primarily by medical school professors.  These weren't ignorant rural doctors, my doctor didn't get his training in a Third World country, it wasn't the county indigent clinic, it was places that have good reputations ... for other conditions. 
As one outside doctor told me about the second one, he would have no problem sending a member of his family there for some cutting-edge treatment; they have a good reputation for that.  Their cancer surgery is top-notch.  The problem is, there are no headlines to be made for treating chronic illness; it's drudgery and one of those things that the medical group provides because it's expected of them.  If someone has a special interest in a condition (for example, a relative suffers from it), the doctor will keep up on that condition, but no one there was researching CFS/fibro, so the treatments they were offering had been discredited two decades earlier and no one was even aware of that research. 
In both cases, these medical groups are located near the Central Business District of a large city, in a neighborhood of expensive Victorian homes populated by professionals.  They treat lawyers and CPAs and other wealthy people; these are not ghetto areas where the residents are expected to be thankful they have any medical care available to them at all.  In both cases, if you were to ask a judge where he goes for his medical treatment, he's likely to proudly name the place I went.
Senator Byrd's situation proves that iatrogenic and hospital-acquired infections/illnesses aren't limited to the poor.  You can choose the best place in town and still get medical treatment that proves disastrous.
Don't convince yourself "it can't happen to me, I only go to the best places" ... so do I and so does Sen. Byrd.


Sunday, June 21, 2009

Has your illness been misdiagnosed?

"misdiagnoses are more common than you might think: A 2005 study in the Journal of the American Medical Association says autopsy studies show doctors are wrong 10 percent to 15 percent of the time."
"1. You don't get better with treatment

Sometimes doctors stick to a diagnosis even when multiple treatments aren't working.

As vice president for loss prevention and patient safety at Harvard's Risk Management Foundation, Bob Hanscom remembers one particular lawsuit against Harvard doctors. ... "In her deposition, she said nobody was listening to her, so she kind of gave up," Hanscom says.

2. Your symptoms don't match your diagnosis"

My symptoms (fever, swollen glands, etc.) didn't match the diagnosis the doctor wanted to give me (depression), but that didn't bother him.  When confronted later, he said "nothing you said made sense", because I was specifically telling him the symptoms that didn't match up to depression, trying to lead him away from that wrong diagnosis. 

When the anti-depressants simply made me sicker, he should have looked for another diagnosis -- like going back to the one that I initially told him I had, which he arrogantly disregarded.  He didn't.  Like the woman who sued Harvard, "nobody was listening".  I told them from the first what the correct diagnosis was and what the correct treatment was.  But the doctors weren't about to take advice from a patient.

If the AMA would work to bring down this 10-15% misdiagnosis rate, they could eliminate a lot of malpractice suits just by getting it right more often.  In some states, in order to sue for malpractice, you have to submit a statement from a doctor that your problems are attributable to the treatment, and not the disease.  These are not frivolous cases -- these are people whose lives have been forever changed because of an error.  Sometimes it's an innocent accident, and sometimes, as in my case, it's an intentional disregard for an existing diagnosis and/or test results that would contradict the diagnosis the doctor wants to make.

Read "How Doctors Think" by Dr. Jerome Groopman, and you'll learn exactly how and why doctors make the mistakes that lead to malpractice lawsuits.  The problem isn't greedy patients, it's doctors who want to ruin lives and skip away leaving the patient to pay the price for their misconduct.



Medical errors

According to an article in the June 29, 2009 issue of Time magazine, medical errors are the 8th leading cause of death in the US.
And that's just death -- how many patients each year are damaged due to medical errors?  I'll never work again because an arrogant doctor chose to overrule several experts' diagnoses in order to substitute a diagnosis of something I never had and therefore couldn't be cured of.  Had he listened to me at the first appointment, when I told him what should correctly be prescribed, I might've been back to work in a few weeks.
I've had patients who met post-traumatic stress disorder criteria... where their trauma was their interaction with their physician around this illness. They came to a doctor with Chronic Fatigue Syndrome; they left the doctor with PTSD.
         – Nancy Klimas, M.D.
Miami Herald, March 24, 2009
In fact, 77% of CFS patients report negative experiences with health care providers, and 66% believe the treatment they received made them worse.
Where's the outcry over the number of people who are damaged/disabled/dead due to medical errors?  The problem in American health care today isn't just the number of uninsured, it's the number who suffer at the hands of the medical profession, thus requiring additional expensive treatment.

Singing for Research

Making their voices heard

Singers raising funds for chronic fatigue syndrome research

Erin McPhee, North Shore News

Published: Sunday, June 21, 2009

- Dreamscape: An Evening of Song, a benefit concert for the Nightingale
Research Foundation, featuring a number of voices, including soprano
Jacqueline Ko and special guest star Heidi Klassen, Sunday, June 28 at 7
p.m. at West Vancouver United Church. Tickets: $25/$20. Info: 604-266-1166.

Music's unique capacity to heal is something countless individuals have long
remarked on.

Whether you're making it or simply listening to it, there's something about
it that just feels good. Acclaimed international soprano and founder of The
Opera Project, Heidi Klassen definitely shares this opinion.

"I think it's one of the most powerful sounds -- the human voice -- that
extension is one of the most powerful healers. . . . It's a bit like when
the dancer dances to their full extension, that kind of inspiration that
happens for the artist that moves as well as the audience member," she says.

Seeing music's positive impact on her own health -- she's rarely been ill a
day in her 30-year career -- as well as her students, Klassen is happy to
throw her support behind related initiatives.

One example is her featured performance at Dreamscape: An Evening of Song,
being held Sunday, June 28, at 7 p.m. at West Vancouver United Church. More
than just a concert, Dreamscape is a benefit put together by Klassen's
student, 17-year-old Jacqueline Ko.

An accomplished singer in her own right, Ko will be taking the stage along
with a number of other singers who have volunteered their time.

Funds raised from the evening will support the Nightingale Research
Foundation, an Ottawa-based organization established to explore and
understand chronic fatigue syndrome, myalgic encephalomyelitis and
fibromyalgia-type illnesses.

The cause is close to Ko's heart as she has suffered with chronic fatigue
syndrome since the age of six.

According to the foundation, chronic fatigue syndrome is a complex,
multi-system group of afflictions, adversely affecting the brain, heart,
neuro-endocrine, immune and circulatory systems.

Those affected can experience a variety of symptoms including: chronic pain;
neurological problems such as memory loss or difficulty with specific types
of mental tasks like reading, spelling and math; and problems with the
automatic nervous system which can cause irregular heart rate, blood
pressure issues, temperature problems and difficulty breathing, says Ko.

"There have been times when I have been completely bed-ridden; but, there
are times, like now, when I'm capable of certain types of activity for a
limited amount of time," she says, adding that she's had to learn to pace
herself and allot for time to recover.

Despite the challenges she has faced in managing her illness, Ko is
continuing to make tremendous strides with her singing.

"Jacquie is an unusually talented girl for her age," says Klassen, adding
that she often tackles difficult repertoire that she wouldn't normally allow
students her age to attempt.

After initially starting out in piano and being forced to give it up due to
muscle pain, Ko says singing is a perfect fit for her. There is a lot of
flexibility in how she can pursue it, and singing helps to build core

At Dreamscape, Ko will be performing Ophelia's mad scene, an "extraordinary
feat" considering it requires 10 minutes of singing and some very high
notes, which according to Klassen, she has no problem hitting. "She always
puts a huge challenge in front of herself and it takes my breath away and
then we go for it," the instructor says.

Klassen adds that she's looking forward to taking the stage with Ko and the
other accomplished singers next weekend in support of such an important
cause. She'll be performing a selection from Verdi's La Forza del Destino
(The Force of Destiny).

"I am personally very gratified to be able to teach (this talent) and
contribute hopefully to (her) health and to mine," she says.

For more information on chronic fatigue syndrome, visit

C North Shore News 2009