As I’ve written before (perhaps on this blog), I believe that there is a great deal of evidence, both present & historical, for a gender discrimination case. Consider:
1. This is not women’s first rodeo when it comes to being dismissed & psychologized by doctors. For instance, how many were diagnosed with mental illness when in fact they had an autoimmune disease that wasn’t officially recognized yet, or even after it was? Work with MS, RA, lupus were institutionalized, abused & traumatized by/c doctors refused to believe they couldn’t walk or that they had unbearable pain. How many died after being forced to crawl to find food, or to continue using joints already swollen from arthritis? How many women with exhaustion (it’s time to drop lock the word “fatigue” from discussions of autoimmune & neural immune disorders), neurological deterioration, sleeplessness, extreme pain were ridiculed & demeaned, shrugged off as stupid, weak, whiney women?
Even today, some women with Lupus, especially single mothers of color, are punished for their failure to get their children to school, or hold a job because of their disease. Chronically ill women with serious diseases are depicted as the source of their problems as opposed to the failure of medicine & society in providing them the kind of support and care one would expect in a modern, civilized democracy.
Research has shown that a large proportion of women whose physical complaints were diagnosed as mental illness in fact had a serious illness like auto immune diseases, or even cancer. In fact, in one study by a psychiatrist who followed up on some patients who in the last ten years had complained of physical symptoms but diagnosed with a variety of mental illnesses, including depression, manic depressive &
(Once again, I have lost the mostly completed part two of my comment…I wish I knew where it disappears)
To continue (a brief summary): & other mental health diagnosis (the current DSM volume has actually added a new mental health diagnosis that could be used for just about any patient with medical complaints who is perceived as being too pre-occcupied with getting a medical diagnosis - I followed the debate on the inclusion of this diagnosis, and it’s was quite controversial. It was seen as a new way of labeling medical patients - especially women - as mentally ill - I found it very troubling & frightening)
But of course, you are well versed in this research, as well as that showing that compared to men, it takes a significantly larger number of medical appointments for women to receive an appropriate diagnosis for their medical symptoms. This can be quite serious for those women must see a doctor as many as 9 or 10 times before cancer or cardiac disease is diagnosed.
Frankly, I’m surprised there hasn’t been a sex discrimination cases against health care organizations given the amount of data that clearly shows that despite their good faith effort to be diagnosed and treated for illness, women are doing significantly worse than men in being diagnosed, reviewing timely & effective treatment & just surviving.
2) I think a content analysis of NIH ME naysayers might be interesting. Just in my own causal review of some of this material, I am struck at the negative language used in reference to female patients with ME. In fact, the fact that ME is assumed to be a female condition despite the 20% of ME patients who are male is telling. It could be seen as a contradiction to accusations of gender discrimination, but then again, it could be argued that male ME patients suffer the consequences of ME being associated with negative stereotypes of femininity.
We see this sexist language in Walitt & other ME critics description of patients (needy, attention seeking, complaining, whining, argumentative (like when we resist being told it’s all in our head) or even Wallits past argument that his research on ME showing it’s not physical but rather a over-reaction to pain provides us with the answer to historical claims of female hysteria in patients.
The feminization of ME (which as a lived experience hardly fits my perception of ideal femininity, at the very least, ignoring the enormous strength and perseverance ME patients must have to survive.
3). My favorite evidence is all the research that shows that every other time women which chronic and severe ill was have been psychologized were wrong. We have hundreds of years of abusive treatment of ill women (& men who share their illness), too often left to die horrible deaths from lack of care, all proven to be for to the refusal of medicine to take their reported and visible symptoms seriously.
You’d think after being wrong so many times, medicine would stop doing this. Especially when there are clear patterns of symptoms, or clusters of symptoms, that are observable through tests or in patients behavior.
As I understand it, the general rule is that patients presenting with medical symptoms must be examined and tested to the point that all possible medical conditions have been ruled out before they are sent to mental health professionals. From what are seeing with ME this is not the case. In fact, I would argue this has been the case all along.
Certain groups, those lacking the political or financial reported that could used to protect their interests, seem to be targeted for psychologizing their symptoms, often without a thorough attempt to rule out medical causation or even evidence of biological symptoms.
For ppl with ME, this happens despite the fact that there are numerous published & peer reviewed studies showing that ME is associated with biological markers & csognificant differences between ppl with ME and control groups on biological data.
And as many have noted over the years, many (if not most) legitimate illnesses do not have a single, 100% accurate diagnostic criteria. Just recently, I was listening to doctor in an interview pointing out that die to variations of patients, most diagnosis requires the consideration of multiple types of evidence beyond available diagnostic tests.
The argument that ME is not a real medical illness because it’s lacks a single accurate diagnostic criteria is based on the myth that such ideal criteria always exists or is ever the only way patients are diagnosed with a particular disease. Is there evidence that diseases that men are more likely to have lack the same ideal type of diagnostic criteria that Me is seen as lacking? Is there evidence, as I’ve suggested, that the demand for a single diagnostic criteria for ME before it is taken seriously as a medical condition is in fact an arbitrary expectation applied differently depending on the illness or the gender of those most likely affected by the illness?
I don’t know, but it is something we need to look at.
Conclusion - I’m sure there are many other possible sources of evidence of gender discrimination in medicine. We know that gender discrimination and sexual harassment have long been pervasive in medical schools and medical institutions amongst doctors , nurses & other medical professionals, some of which has resulted in court cases. And there’s too much evidence that gender discrimination is present in medical science and treatment.
We know women (& men with diseases an associated with women) are suffering, dying, evident this discrimination. It’s a matter of collecting the best available evidence, making the strongest argument & filing a complaint against, in this case, the NIH. Again, I wonder how it is we haven’t done this before.
Final thought, I’m not sure of the law when it comes to suing a government agency. But given the corporate lawsuits against various agencies that are upending the governments ability to regulate corporate America, it’s seems that some lawsuits are allowable.
I can’t think a better time to do it. It could be a backlash, against the conservative backlash that’s is taking place today in the US, against women and their bodies. The big had gotten away with its abuse of ME patients for too long. It’s past time to hold them accountable and make visible the highly problematic actions & consequences of their refusal to treat ME as a serious medical condition.
I suspect we will find that the very gendered attack on Me by NIH & other medical institutions of in fact the strategic use of gender discrimination to serve the interests of those who prefer medicine to focus on those whose care & treatment has been made profitable for shareholders. Furthermore the criticisms of a lack of a single diagnostic criteria is merely a convenient excuse for ignoring a disease until such time that patented treatment/pharmaceuticals are developed & made profitable.
At this time, ME, if legitimized as a medical disease, will promptly be a corporate expense for medical & disability Insurance a companies. I have heard some insiders claim that anti-ME narratives have been pushed by these insurance companies.
While I’m not sure it could be proven, I have heard any number of accusations that government agencies & offices have been infiltrated by corporate &/or corporate-friendly ppl who influence decisions. Just rumor but not impossible to believe in the current corporatized society we live in.
And it is not uncommon for special interests to use various “isms” in support of their interests. Sexism, racism, etc are so deeply embedded in our society, that they become very effective tools in assigning meaning & shaping perceptions. They are often taken-for-granted to the point that ppl don’t even see them, even as they shape our perceptions & interpretations.
I think sexism is being used in that way against ppl with ME, to justify psychologizing patients to dismissing ME as a legitimate illness. If one is in doubt, I recommend rereading the argument made by those two psychologist who, fifteen years after the real-time research of the ME breakout at Englands Royal Free Hospital was published, and without any additional research or follow-up of seriously ill patients, wrote a rebuttal to the article denying that ME was a medical illness.
And why were they so certain of their conclusion? Because most of the patients reported to have long-term severe symptoms were women, & bc researchers had yet to find a single diagnostic test, these psychologists were certain that the Royal Free Drs & researchers were all mistaken, confusing a feminine Mass Hysteria for a real medical illness (I’m basing this on my memory of these events; please accept my apologies if I’m remembering any part incorrectly)
So we better hurry up, just in case. So let’s do it. Let’s make it happen. And yes, perhaps this needs to be a intersectionality discrimination lawsuit (Consevatives seem to find the concept of intersectionality vile) bc there is no way to separate sex, gender, race, ethnicity, social class, disability, etc bc they are intersectionalities. I imagine statistically, they would all be significant in explaining variation, perhaps more so collectively (I’m not familiar w/research that has attempted to capture the gestalt of intersectionality (when the outcome is greater than the sum of the parts).
I’m a secluded nobody, did most of work locally. But I’m game. My life provides a number of examples of being traumatized by medical discrimination-based malpractice. And I think if we’re just one time, maybe it could be shrugged off, but when it happens more than once to the same person concerning different medical conditions, we see a clear pattern in the life of one person. I suspect that would be true for many mothers as well.
I am a Sociologist and I did a lot of my community work as a facilitator, organizer and activist -both in an academic community & the larger community. I’ve also co-managed a successful nonpartisan grassroots political campaign. So whatever skills I have, and energy I may have at any given moment, is available.
Any one want to form a steering comm or even just investigative group to explore the possibility of the class action lawsuit for ME Patients? We need enough ppl so that no one has too much of a work load. Some mindful sharing of tasks and responsibilities, lots of communication & collective brainstorming, and just a commitment for those who join in to remain as committed to the process as they are capable (so everyone should engage in a thoroughly honest and self-caring analysis of what are limits & likely abilities are, so we start out with realistic objectives of ourselves & the process.
That’s just what I think. Of anyone else here is interested, or has a different idea of how proceed, this is a great opportunity to do so.
I think the focus would not be discrimination per se, but actual acts of malfeasance (subverting the will of Congress by stealing money earmarked for ME research, lying to Congress during appropriations hearings--a felony if one is under oath--misrepresenting facts about ME and resources invested in it to members of Congress, etc.) In other words, actual incidences of deception and what amounts to malpractice or negligence; failing to follow their agency's federal mandate, which in CDC's case is to control and prevent disease. Lawyers with experience in suing the government would be able to parse the evidence. The goal would be to get past the government's contention that they are the preeminent arbiters of science and prove that they have acted less like scientists and more like white collar criminals.
Abundant evidence exists in medical literature that takes the mystery out of ME. It's the US federal health agencies that have imposed the "mystery" on the disease and perpetuate it. A campaign of disinformation, 40 years duration.
It seems like the doctors go along with that. It's hard to believe that they do so for the same reason. Is it just ignorance and their own lack of ability to fight the insurance company and governments or..?
If this isn't a lawsuit, I don't know what is (please see below):
I refer you to the following patent developed by Professor Robert Garry from Tulane University for the retrovirus HIAP-II back in the 90's. He has linked this virus to idiopathic CD4+ T-lymphocytopenia (ICL), otherwise known as non-hiv aids, of which I believe at least a subset of ME/CFS individuals may have.
Here is the link to the official patent for this disease:
Finally, here is a 2023 article by Dr. Karin Nielsen which states that the ICL condition is mainly found in injection drug users. She is evidently unaware that HIAP-II has been linked to ICL:
Why has no one ever heard of this HIAP-II retrovirus when it actually has a patent??? The individual who discovered this retrovirus, Professor Robert Garry, is still employed at Tulane University. My attempts to reach him have been ignored. I'm making a connection here because, in 2013, I fell ill soon after a brief kiss with a prior injection drug user. It doesn't take much to figure out that this is most likely what I (and my husband) may have as our immune systems continue to decline year after year.
I'm in total shock. How can this aids-like virus be out there and the public is not aware of it? Is the blood supply safe? If I can easily be infected via saliva, then how many individuals may have had or have this virus? How many have died? Is this related to ME/CFS?
I'm not really sure how to go about it or what the cost may be, but my current thinking is to run this by a lawyer to get their opinion. It's worth a try.
That is very interesting. I looked at the patent. Agree that this is something that should be on our radar... especially for those of us who deal with opportunistic infections...
As I’ve written before (perhaps on this blog), I believe that there is a great deal of evidence, both present & historical, for a gender discrimination case. Consider:
1. This is not women’s first rodeo when it comes to being dismissed & psychologized by doctors. For instance, how many were diagnosed with mental illness when in fact they had an autoimmune disease that wasn’t officially recognized yet, or even after it was? Work with MS, RA, lupus were institutionalized, abused & traumatized by/c doctors refused to believe they couldn’t walk or that they had unbearable pain. How many died after being forced to crawl to find food, or to continue using joints already swollen from arthritis? How many women with exhaustion (it’s time to drop lock the word “fatigue” from discussions of autoimmune & neural immune disorders), neurological deterioration, sleeplessness, extreme pain were ridiculed & demeaned, shrugged off as stupid, weak, whiney women?
Even today, some women with Lupus, especially single mothers of color, are punished for their failure to get their children to school, or hold a job because of their disease. Chronically ill women with serious diseases are depicted as the source of their problems as opposed to the failure of medicine & society in providing them the kind of support and care one would expect in a modern, civilized democracy.
Research has shown that a large proportion of women whose physical complaints were diagnosed as mental illness in fact had a serious illness like auto immune diseases, or even cancer. In fact, in one study by a psychiatrist who followed up on some patients who in the last ten years had complained of physical symptoms but diagnosed with a variety of mental illnesses, including depression, manic depressive &
(Once again, I have lost the mostly completed part two of my comment…I wish I knew where it disappears)
To continue (a brief summary): & other mental health diagnosis (the current DSM volume has actually added a new mental health diagnosis that could be used for just about any patient with medical complaints who is perceived as being too pre-occcupied with getting a medical diagnosis - I followed the debate on the inclusion of this diagnosis, and it’s was quite controversial. It was seen as a new way of labeling medical patients - especially women - as mentally ill - I found it very troubling & frightening)
But of course, you are well versed in this research, as well as that showing that compared to men, it takes a significantly larger number of medical appointments for women to receive an appropriate diagnosis for their medical symptoms. This can be quite serious for those women must see a doctor as many as 9 or 10 times before cancer or cardiac disease is diagnosed.
Frankly, I’m surprised there hasn’t been a sex discrimination cases against health care organizations given the amount of data that clearly shows that despite their good faith effort to be diagnosed and treated for illness, women are doing significantly worse than men in being diagnosed, reviewing timely & effective treatment & just surviving.
2) I think a content analysis of NIH ME naysayers might be interesting. Just in my own causal review of some of this material, I am struck at the negative language used in reference to female patients with ME. In fact, the fact that ME is assumed to be a female condition despite the 20% of ME patients who are male is telling. It could be seen as a contradiction to accusations of gender discrimination, but then again, it could be argued that male ME patients suffer the consequences of ME being associated with negative stereotypes of femininity.
We see this sexist language in Walitt & other ME critics description of patients (needy, attention seeking, complaining, whining, argumentative (like when we resist being told it’s all in our head) or even Wallits past argument that his research on ME showing it’s not physical but rather a over-reaction to pain provides us with the answer to historical claims of female hysteria in patients.
The feminization of ME (which as a lived experience hardly fits my perception of ideal femininity, at the very least, ignoring the enormous strength and perseverance ME patients must have to survive.
3). My favorite evidence is all the research that shows that every other time women which chronic and severe ill was have been psychologized were wrong. We have hundreds of years of abusive treatment of ill women (& men who share their illness), too often left to die horrible deaths from lack of care, all proven to be for to the refusal of medicine to take their reported and visible symptoms seriously.
You’d think after being wrong so many times, medicine would stop doing this. Especially when there are clear patterns of symptoms, or clusters of symptoms, that are observable through tests or in patients behavior.
As I understand it, the general rule is that patients presenting with medical symptoms must be examined and tested to the point that all possible medical conditions have been ruled out before they are sent to mental health professionals. From what are seeing with ME this is not the case. In fact, I would argue this has been the case all along.
Certain groups, those lacking the political or financial reported that could used to protect their interests, seem to be targeted for psychologizing their symptoms, often without a thorough attempt to rule out medical causation or even evidence of biological symptoms.
For ppl with ME, this happens despite the fact that there are numerous published & peer reviewed studies showing that ME is associated with biological markers & csognificant differences between ppl with ME and control groups on biological data.
And as many have noted over the years, many (if not most) legitimate illnesses do not have a single, 100% accurate diagnostic criteria. Just recently, I was listening to doctor in an interview pointing out that die to variations of patients, most diagnosis requires the consideration of multiple types of evidence beyond available diagnostic tests.
The argument that ME is not a real medical illness because it’s lacks a single accurate diagnostic criteria is based on the myth that such ideal criteria always exists or is ever the only way patients are diagnosed with a particular disease. Is there evidence that diseases that men are more likely to have lack the same ideal type of diagnostic criteria that Me is seen as lacking? Is there evidence, as I’ve suggested, that the demand for a single diagnostic criteria for ME before it is taken seriously as a medical condition is in fact an arbitrary expectation applied differently depending on the illness or the gender of those most likely affected by the illness?
I don’t know, but it is something we need to look at.
Conclusion - I’m sure there are many other possible sources of evidence of gender discrimination in medicine. We know that gender discrimination and sexual harassment have long been pervasive in medical schools and medical institutions amongst doctors , nurses & other medical professionals, some of which has resulted in court cases. And there’s too much evidence that gender discrimination is present in medical science and treatment.
We know women (& men with diseases an associated with women) are suffering, dying, evident this discrimination. It’s a matter of collecting the best available evidence, making the strongest argument & filing a complaint against, in this case, the NIH. Again, I wonder how it is we haven’t done this before.
Final thought, I’m not sure of the law when it comes to suing a government agency. But given the corporate lawsuits against various agencies that are upending the governments ability to regulate corporate America, it’s seems that some lawsuits are allowable.
I can’t think a better time to do it. It could be a backlash, against the conservative backlash that’s is taking place today in the US, against women and their bodies. The big had gotten away with its abuse of ME patients for too long. It’s past time to hold them accountable and make visible the highly problematic actions & consequences of their refusal to treat ME as a serious medical condition.
I suspect we will find that the very gendered attack on Me by NIH & other medical institutions of in fact the strategic use of gender discrimination to serve the interests of those who prefer medicine to focus on those whose care & treatment has been made profitable for shareholders. Furthermore the criticisms of a lack of a single diagnostic criteria is merely a convenient excuse for ignoring a disease until such time that patented treatment/pharmaceuticals are developed & made profitable.
At this time, ME, if legitimized as a medical disease, will promptly be a corporate expense for medical & disability Insurance a companies. I have heard some insiders claim that anti-ME narratives have been pushed by these insurance companies.
While I’m not sure it could be proven, I have heard any number of accusations that government agencies & offices have been infiltrated by corporate &/or corporate-friendly ppl who influence decisions. Just rumor but not impossible to believe in the current corporatized society we live in.
And it is not uncommon for special interests to use various “isms” in support of their interests. Sexism, racism, etc are so deeply embedded in our society, that they become very effective tools in assigning meaning & shaping perceptions. They are often taken-for-granted to the point that ppl don’t even see them, even as they shape our perceptions & interpretations.
I think sexism is being used in that way against ppl with ME, to justify psychologizing patients to dismissing ME as a legitimate illness. If one is in doubt, I recommend rereading the argument made by those two psychologist who, fifteen years after the real-time research of the ME breakout at Englands Royal Free Hospital was published, and without any additional research or follow-up of seriously ill patients, wrote a rebuttal to the article denying that ME was a medical illness.
And why were they so certain of their conclusion? Because most of the patients reported to have long-term severe symptoms were women, & bc researchers had yet to find a single diagnostic test, these psychologists were certain that the Royal Free Drs & researchers were all mistaken, confusing a feminine Mass Hysteria for a real medical illness (I’m basing this on my memory of these events; please accept my apologies if I’m remembering any part incorrectly)
It has always been possible to sue the government and will continue to be possible in a democratic country.
So we better hurry up, just in case. So let’s do it. Let’s make it happen. And yes, perhaps this needs to be a intersectionality discrimination lawsuit (Consevatives seem to find the concept of intersectionality vile) bc there is no way to separate sex, gender, race, ethnicity, social class, disability, etc bc they are intersectionalities. I imagine statistically, they would all be significant in explaining variation, perhaps more so collectively (I’m not familiar w/research that has attempted to capture the gestalt of intersectionality (when the outcome is greater than the sum of the parts).
I’m a secluded nobody, did most of work locally. But I’m game. My life provides a number of examples of being traumatized by medical discrimination-based malpractice. And I think if we’re just one time, maybe it could be shrugged off, but when it happens more than once to the same person concerning different medical conditions, we see a clear pattern in the life of one person. I suspect that would be true for many mothers as well.
I am a Sociologist and I did a lot of my community work as a facilitator, organizer and activist -both in an academic community & the larger community. I’ve also co-managed a successful nonpartisan grassroots political campaign. So whatever skills I have, and energy I may have at any given moment, is available.
Any one want to form a steering comm or even just investigative group to explore the possibility of the class action lawsuit for ME Patients? We need enough ppl so that no one has too much of a work load. Some mindful sharing of tasks and responsibilities, lots of communication & collective brainstorming, and just a commitment for those who join in to remain as committed to the process as they are capable (so everyone should engage in a thoroughly honest and self-caring analysis of what are limits & likely abilities are, so we start out with realistic objectives of ourselves & the process.
That’s just what I think. Of anyone else here is interested, or has a different idea of how proceed, this is a great opportunity to do so.
I would be interested if we have someone with expertise who can show a clear path.
I have been in discussions on this in the past and at that time there was no clear path to pursue.
I think the focus would not be discrimination per se, but actual acts of malfeasance (subverting the will of Congress by stealing money earmarked for ME research, lying to Congress during appropriations hearings--a felony if one is under oath--misrepresenting facts about ME and resources invested in it to members of Congress, etc.) In other words, actual incidences of deception and what amounts to malpractice or negligence; failing to follow their agency's federal mandate, which in CDC's case is to control and prevent disease. Lawyers with experience in suing the government would be able to parse the evidence. The goal would be to get past the government's contention that they are the preeminent arbiters of science and prove that they have acted less like scientists and more like white collar criminals.
This is all also ableism.
Once I saw the reality of what had been happening since I got sick in 1989, I wondered how we could use the legal system to address the wrongs.
It seems clear that one of the reasons gov & orgs are maintaining status quo is to prevent judicial action.
As long as ME is a "mystery" disease no one can be held accountable.
Abundant evidence exists in medical literature that takes the mystery out of ME. It's the US federal health agencies that have imposed the "mystery" on the disease and perpetuate it. A campaign of disinformation, 40 years duration.
Exactly. In case I wasn't clear in my comment, I agree that ME is not a mystery disease.
It seems like the doctors go along with that. It's hard to believe that they do so for the same reason. Is it just ignorance and their own lack of ability to fight the insurance company and governments or..?
If this isn't a lawsuit, I don't know what is (please see below):
I refer you to the following patent developed by Professor Robert Garry from Tulane University for the retrovirus HIAP-II back in the 90's. He has linked this virus to idiopathic CD4+ T-lymphocytopenia (ICL), otherwise known as non-hiv aids, of which I believe at least a subset of ME/CFS individuals may have.
Here is the link to the official patent for this disease:
https://patents.google.com/patent/WO1995031531A1/en
Below is a link to the company that was supposed to be developing a test for this HIAP-II virus:
https://www.autoimmune.com/Non-HIVAIDSGen.html
Finally, here is a 2023 article by Dr. Karin Nielsen which states that the ICL condition is mainly found in injection drug users. She is evidently unaware that HIAP-II has been linked to ICL:
https://www.uptodate.com/contents/idiopathic-cd4-lymphocytopenia
Why has no one ever heard of this HIAP-II retrovirus when it actually has a patent??? The individual who discovered this retrovirus, Professor Robert Garry, is still employed at Tulane University. My attempts to reach him have been ignored. I'm making a connection here because, in 2013, I fell ill soon after a brief kiss with a prior injection drug user. It doesn't take much to figure out that this is most likely what I (and my husband) may have as our immune systems continue to decline year after year.
I'm in total shock. How can this aids-like virus be out there and the public is not aware of it? Is the blood supply safe? If I can easily be infected via saliva, then how many individuals may have had or have this virus? How many have died? Is this related to ME/CFS?
I'm not really sure how to go about it or what the cost may be, but my current thinking is to run this by a lawyer to get their opinion. It's worth a try.
That is very interesting. I looked at the patent. Agree that this is something that should be on our radar... especially for those of us who deal with opportunistic infections...