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.
We need a lawyer or two, some good research by ppl good at finding out who’s influencing NIH decisions & in whose interest, the accumulative knowledge of those of you who have done such an excellent job following/sharing what’s going on in the politics, economics & science of ME, and ppl willing to brainstorm, assess & work together to make a path forward (and be ready to adjust, ‘bob & weave’ as new info/issues come up. The trick is to get started, and work on it as we go (since it probably won’t always go as we think it will).
While this is not exactly the same issue, it reflects a serious source of resistance to funding the kind of medical research we need on ME, Long-COVID: the financial interests in resisting any efforts to eliminate their contested status as real biological illnesses. That financial interest is both corporate & those who do not want government to become financially responsible to millions of additional, officially disabled persons.
In the US today, the interests of our wealthiest citizens has reshaped just about every institution in society, and their impact on our political elections & government continues to grow. I e spent much of the last ten years watching as their power & income has grown & our society has been encouraged to simply accept the declining power & interest’s of the people as the power & interest of the economies “shareholders” & the corporations that have made them exponentially richer increases.
We know the impact it’s had health care- whenever I stop and consider that impact, comparing just one or two decades ago to today, it’s terrifying.
I believe a similar pattern is taking place in England, where ME patients lives are being more horrible than I could imagine. I don’t know if a recent article in The Canary: “A doctor involved in PACE trial has influenced a DWP work programme targeting ME/CFS and long Covid” by Hannah Sharland, 18 September 2024. The planned major cut backs in support for ppl with disability and its implications for ppl with long Covid and ME are terrifying enough. But what really struck me was that the Gov in England had hired for their new program to move people from disability to work is from the insurance industry, the very industry who has an enormous stake in reducing disability roles. There is also a the fact the the Pace Study doctor involved in this new program worked for UNUM Disability & probably still has ties with the company. UNUM sells primarily private disability insurance in England, & expect to see a rise in demand for private disability insurance if this program moves forward. UNUM is a notorious Disability Firm known for the US as well (they cost me all of my ERISA benefits that they approves, then took away, in an amazingly brazen move that involved manipulated case file, lies, and ultimately no real explanation how I could disabled, then not disabled two years later when all my medical records showed I was worse (they simply deleted all the records in my file re: the approval and pretended it never happened).
What does all this mean 1. I have to believe that the NIH is responding to pressures from corporate and political interests, 2. That corporate & investor influence will only increase in the US & elsewhere over the next decade, regardless of how the US Presodental Elections go (it may just happen faster is Republicans win), which means if we are going to do anything, it needs to be done yesterday, and 3) we need to uncover the financial interests that are working against ME, Long Covid and other diseases of this sort, and make them public asap. I admit this is not my area of expertise. I’m a researcher, but not so good at the kind of journalistic investigation we need. It’s got to be pretty damn big, & probably tied to government officials to convince NIH officials to misappropriate funds.
And I wouldn’t count out the gender angle. That is one agency in the government we might get some movement on. It’s clear there is a sex/gender component to the actions & propaganda. And there is a very long history of it.
And there is no reason we couldn’t facilitate/support multiple actions.
Malfeasance is tough one. We would need ppl w/some level of protection & enough authority that is not easily resisted or threatened in government to take on another agency. I’m pretty sure there is plenty of corruption going on, most of it remains hidden & mostly unpunished.
If the ppp congress who approved that money are willing to at least show interest in finding out why that money wasn’t used as instructed, & the press would pick up the story, that would help. It wasn’t that long ago that a president was impeached for messing with congressional appropriations, but we have find someone whose interests are served by following up on the missing money.
A petition with signatures of just half of the 3 million Americans diagnosed with ME might be effective. We need someone with legal lingo and substantiated factual description of the issue, then get the signatories and deliver them with press conference. If we make sore to make relevant to long covid folks as well, it would have the potential for a larger impact.
I’ve done a lot of things that people kept saying couldn’t be done, or too hard to do. I’ve always been a believer that there has to be a way.
As ME patients, I wonder if we wouldn’t have cause to sue the NIH for the missing money, & this research. It has, after all, directly affected us as both tax payers and ppl ill with ME. I know that can be tricky, but compared some of the claims that have been made lately by partisan groups during agencies, depending on facts, we may have a very good case for cause.
Thank-you Hillary. M.E. patients are long past due for justice and/or compensation, but mostly, for access to treatments and a cure. It certainly doesn't seem that this will happen unless the tides totally change, i.e. admission of wrongdoing, which as you explain so well here, has already been proven by you and others. We have lost too many people already, people who are still living with this horrible disease, and those who have died from it. The fact we have to repeatedly, over decades, ask the question "How many more?" is just tragic.
So much appreciation for your meticulous work since the 1980s.
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...
Who paid thinly veiled hogwash "Hystories..." author - English Prof. Elaine Showalter at Yale? Why isn't she also being investigated as to the obvious deliberate malfeasance?
Who paid thinly veiled hogwash "Hystories..." author - English Prof. Elaine Showalter at Yale? Why isn't she also being investigated as to the obvious deliberate nalfeasance?
But it's much, much, much BIGGER in the Systematic Malfeasance..... 1) yes, the 'gain of function' post AIDS is to target women & minorities. 2) C-Vid, even more so, plus the elderly.... But 3) Military Gaslighting is compounding the tragedy. Military Families evidence TWOCE the prevalence of Autism, plus other serious medical issues as the Gen Pop... they DO know! It's been proven Genetically Predisposed... they surely DO know! The military Members can't sue, however their Families can... in fact there was a suit requesting funds for Services to the Autistic children, which I believe was actually won - but where's the FUNDS? Does Genetic engineering need a spotlight as does Genocide?
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.
We need a lawyer or two, some good research by ppl good at finding out who’s influencing NIH decisions & in whose interest, the accumulative knowledge of those of you who have done such an excellent job following/sharing what’s going on in the politics, economics & science of ME, and ppl willing to brainstorm, assess & work together to make a path forward (and be ready to adjust, ‘bob & weave’ as new info/issues come up. The trick is to get started, and work on it as we go (since it probably won’t always go as we think it will).
While this is not exactly the same issue, it reflects a serious source of resistance to funding the kind of medical research we need on ME, Long-COVID: the financial interests in resisting any efforts to eliminate their contested status as real biological illnesses. That financial interest is both corporate & those who do not want government to become financially responsible to millions of additional, officially disabled persons.
In the US today, the interests of our wealthiest citizens has reshaped just about every institution in society, and their impact on our political elections & government continues to grow. I e spent much of the last ten years watching as their power & income has grown & our society has been encouraged to simply accept the declining power & interest’s of the people as the power & interest of the economies “shareholders” & the corporations that have made them exponentially richer increases.
We know the impact it’s had health care- whenever I stop and consider that impact, comparing just one or two decades ago to today, it’s terrifying.
I believe a similar pattern is taking place in England, where ME patients lives are being more horrible than I could imagine. I don’t know if a recent article in The Canary: “A doctor involved in PACE trial has influenced a DWP work programme targeting ME/CFS and long Covid” by Hannah Sharland, 18 September 2024. The planned major cut backs in support for ppl with disability and its implications for ppl with long Covid and ME are terrifying enough. But what really struck me was that the Gov in England had hired for their new program to move people from disability to work is from the insurance industry, the very industry who has an enormous stake in reducing disability roles. There is also a the fact the the Pace Study doctor involved in this new program worked for UNUM Disability & probably still has ties with the company. UNUM sells primarily private disability insurance in England, & expect to see a rise in demand for private disability insurance if this program moves forward. UNUM is a notorious Disability Firm known for the US as well (they cost me all of my ERISA benefits that they approves, then took away, in an amazingly brazen move that involved manipulated case file, lies, and ultimately no real explanation how I could disabled, then not disabled two years later when all my medical records showed I was worse (they simply deleted all the records in my file re: the approval and pretended it never happened).
What does all this mean 1. I have to believe that the NIH is responding to pressures from corporate and political interests, 2. That corporate & investor influence will only increase in the US & elsewhere over the next decade, regardless of how the US Presodental Elections go (it may just happen faster is Republicans win), which means if we are going to do anything, it needs to be done yesterday, and 3) we need to uncover the financial interests that are working against ME, Long Covid and other diseases of this sort, and make them public asap. I admit this is not my area of expertise. I’m a researcher, but not so good at the kind of journalistic investigation we need. It’s got to be pretty damn big, & probably tied to government officials to convince NIH officials to misappropriate funds.
And I wouldn’t count out the gender angle. That is one agency in the government we might get some movement on. It’s clear there is a sex/gender component to the actions & propaganda. And there is a very long history of it.
And there is no reason we couldn’t facilitate/support multiple actions.
Malfeasance is tough one. We would need ppl w/some level of protection & enough authority that is not easily resisted or threatened in government to take on another agency. I’m pretty sure there is plenty of corruption going on, most of it remains hidden & mostly unpunished.
If the ppp congress who approved that money are willing to at least show interest in finding out why that money wasn’t used as instructed, & the press would pick up the story, that would help. It wasn’t that long ago that a president was impeached for messing with congressional appropriations, but we have find someone whose interests are served by following up on the missing money.
A petition with signatures of just half of the 3 million Americans diagnosed with ME might be effective. We need someone with legal lingo and substantiated factual description of the issue, then get the signatories and deliver them with press conference. If we make sore to make relevant to long covid folks as well, it would have the potential for a larger impact.
I’ve done a lot of things that people kept saying couldn’t be done, or too hard to do. I’ve always been a believer that there has to be a way.
As ME patients, I wonder if we wouldn’t have cause to sue the NIH for the missing money, & this research. It has, after all, directly affected us as both tax payers and ppl ill with ME. I know that can be tricky, but compared some of the claims that have been made lately by partisan groups during agencies, depending on facts, we may have a very good case for cause.
This is all also ableism.
Thank-you Hillary. M.E. patients are long past due for justice and/or compensation, but mostly, for access to treatments and a cure. It certainly doesn't seem that this will happen unless the tides totally change, i.e. admission of wrongdoing, which as you explain so well here, has already been proven by you and others. We have lost too many people already, people who are still living with this horrible disease, and those who have died from it. The fact we have to repeatedly, over decades, ask the question "How many more?" is just tragic.
So much appreciation for your meticulous work since the 1980s.
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...
Who paid thinly veiled hogwash "Hystories..." author - English Prof. Elaine Showalter at Yale? Why isn't she also being investigated as to the obvious deliberate malfeasance?
Who paid thinly veiled hogwash "Hystories..." author - English Prof. Elaine Showalter at Yale? Why isn't she also being investigated as to the obvious deliberate nalfeasance?
But it's much, much, much BIGGER in the Systematic Malfeasance..... 1) yes, the 'gain of function' post AIDS is to target women & minorities. 2) C-Vid, even more so, plus the elderly.... But 3) Military Gaslighting is compounding the tragedy. Military Families evidence TWOCE the prevalence of Autism, plus other serious medical issues as the Gen Pop... they DO know! It's been proven Genetically Predisposed... they surely DO know! The military Members can't sue, however their Families can... in fact there was a suit requesting funds for Services to the Autistic children, which I believe was actually won - but where's the FUNDS? Does Genetic engineering need a spotlight as does Genocide?