Thank you for sharing details about the systemic institutional bias at NIH that has been rampant for decades. A sincere apology from NIH to patients would be a good place to start.
Well said Hillary. This disease has such a sad history thanks to the incompetence of those involved at the NIH/CDC through the years. It is so surreal. I hope they do a 60 Minutes story on ME/CFS some day and I hope you're one of the individuals they interview. The public needs to understand and be made aware of how this serious disease has been neglected for over 40 years. I will try to email 60 Minutes with the idea... you never know! I had never heard of or understood ME/CFS until I read your books (as well as Neenyah Olstrom and Charles Ortleb's books). Dr. Nath also needs to read your books.
Excellent, Hillary, and of course all true. It's shocking and maddening how horribly we've been treated, and we are immensely fortunate as a patient community that you began documenting all of this abuse in the 80s. I agree that a sincere admission of failure and an apology is needed in order to stop this ongoing mess.
I must add that, during my years of "whatever advocacy I can manage", I've been repeatedly astonished at how many people who call themselves advocates are either unaware of, or aware but oblivious to, this history. It is essential information that is needed to inform the actions we take.
Agree, Allison. A difficulty with avoiding historical aspects of the relationship of federal agencies to ME is that advocates may think cozying up to CDC/NIH is the way to go--that administrators will see the light if patients help them to understand the depth of the suffering. After all, they must be human, right? The problem goes so much deeper. There are political, financial, reputational issues on the line for people in these agencies. Here's a bitter reality: they only care to the degree that their esteem among their colleagues, their jobs and pensions remain unaffected. There are hundreds of diseases vying for attention. And then there's the problem of persistent and extreme bias compounding the problem. What's required is political power coming at them from outside their doors. Personally, I feel betrayed when large patient organizations claiming to represent ME patients spend money and energy trying to build relationships with these agencies--which have been the doorstops to scientific progress. It's so unlikely to be to patients' advantage. They do not represent me.
As a Brit I'm reminded by this comment made by Wessely in 1990 :
"“The description given at the Mayo Clinic remains accurate: ‘The average doctor will see they are neurotic and he will often be disgusted with them’ ”
(In: Psychological Disorders in General Medical Settings, ed: Sartorius et al; Hogrefe & Huber, 1990)
Nath's rather hysterical outburst at the recent symposium ignited an immediate link in my consciousness to this 34 year old quote. It's gaslighting. It's pathetic. Two grown men acting like children. It's narcissistic and demeaning. I'm not the sort of person who forgives and forgets and I will never forgive these types of behaviours, ever. Personally I would prefer their 'sorry' to come with an enormous pay check which can fund the research of the few decent and honourable researchers who have made meaningful strides in understanding biomedical aspects of this disease despite paltry funding opportunities.
If NIH *really* wanted to show it was making an effort, losing Wallit and diverting shed loads of money to the likes of VanElzakker, Hanson and Younger might be a start. Imagine what many millions of $$ in the right hands could do? Find treatments, find a cure even? And that's the quickest, and only, way to get rid of us pesky ME patients and advocates. That will really shut us up, won't it? Give us treatment, make our lives better, and we'll stop nagging you and you can stop gaslighting us.
Gaslighting is always the default-setting of a coercive and controlling 'relationship' which is what this is. The perpetrator of a coercive and controlling 'relationship' is often the one inferring themselves as the victim. And that's exactly what Nath sounds like to me.
The NIH need to pull up their big-boy pants and, instead of continued machinations to try to reframe what they have done in a better light, start doing their job properly. Personally I'm less fussed by the word 'sorry' .. I'd like them to say it.. they *ought* to say it, but abusers saying 'sorry' seldom mean it. I like actions. Actions always speak louder. Full atonement for what they, and their predecessors, have done.
Appreciate this insightful comment. Yes, the real issue is what does NIH do next?
Is "sorry" just too easy? And would anyone believe it? They're 100% unlikely to issue an apology--they can't afford to admit the enormity of their mistakes and miscalculations. I guess my "sorry" proposal could come under the heading "thought experiment," especially in relation to Nath's delusional request for gratitude. What would an acceptable "sorry " look like, and how might it improve the fraught relationship? If they could manage "sorry," it might help them out of their bind, and yet most patients are past the tipping point. How can one forgive decades of life stolen when one had just one life? At minimum, reparations are in order, including for the families and descendants of people who have died.
Not sure if Wessely used the word "disgusted" or the Mayo Clinic used it, but of course it could have been either. I interviewed many MDs at the Mayo for Osler's Web in early '90s and they certainly were disgusted, but not so much that they weren't eager to collect enormous sums of money every year. The clinic's well-organized fleecing of ME sufferers lasted for years and years. They accepted dozens of ME patients into the clinic every month, charging each of them thousands of dollars, before routinely sending them to the psych dept to be scolded: take this anti-depressant and quit feeling sorry for yourself.
Yes, you're right.. clearly the word 'disgusted' must have been used by the Mayo but Wessely had fully endorsed it via the quote I copied above.
I have been conscious of how badly The Mayo have treated people with ME but I'm curious about the volte face of recent years. Their language seems to have altered. I'm not well enough to keep tabs on these things in the way I might have done a while ago, but of course I don't assume that I can trust The Mayo now. Is this some cynical 'positioning' or have new personnel authentically changed the flavour of the setting for the better?
Maybe they realized they could make even more money if they quit mistreating ME patients. They may have become more politically correct after the IOM definition of 2015. (US) So, they may sound ME-friendly, but their conceptualization of the disease will be in line with whatever CDC/NIH says it is. They won't be in the forefront of treating, identifying etiology, etc., is my guess.
Excellent. Perhaps what we need is to make a clearer connection of 40 years of sexist neglect of ME to the ways the that Medicine has treated ppl w/autoimmune disorders that disproportionately affect women.
Ive come across a number of references to the psychologizing & abuse of women w/MS and RA. Is anyone familiar with any research on these examples. Apparently, many women w/either of these conditions were institutionalized, & when these women’s symptoms continued, they were written off stubborn, resistant, or difficult, and blamed if they died (which those with untreated MS must have been risk for).
There is a good amount of feminist research of sexism in medicine: my first introduction to this research was a short book by Barbara Ehrenreich & Deirdre English called Complaints and Disorders: the Sexual Politics of Sickness. It is pretty well established that institution of medicine is mired in negative stereotypical assumptions about women, as well as race, social class, ethnicity, sexuality, age and so on. It has also been well documented that medical schools, even medical textbooks, reflect those same stereotypes, with female students & faculty reporting sexual harassment, gender inequality & hostile workplace.
In that context, just the examples raised in Hillary’s article is a continuation of a very ugly pattern, one that has and co times to serve the interests of those in power - particularly majority shareholders of medical, research, pharmaceutical, insurance & medical technology corporations AS WELL AS the politicians & appointees who depend on those shareholders to finance their careers.
Maybe instead of an apology, what we really need is an explanation why, after dismissing serious illnesses that disproportionately affect women so many times, at so high a cost to both female and male patients, that they are still doing the same thing. How much more proof do they need before they see this is just bad medicine? I don’t even want to know how they account for 20% more or less men who have the same illness!
2) intelligent about this approach. What is happening with ME is outrageous, more so when we consider it in context of very similar responses to other “women’s” illnesses. (The government has also done much the same in reaction to military veterans: Agent Orange, PTSD, and Gulf War Syndrome have all been discounted, demeaned and ignored while thousands, tens of thousands, of veterans suffer & die).
Great comment. I don't have much to add to this. Woman-hating, misogyny, whatever one calls it, has been such a constant, obvious and nightmarish aspect of the neglect of ME by practicing doctors, the academic research establishment and the federal health agencies, and for so long, one almost becomes inured to it, as one does to some extent in everyday life from childhood on. As I wrote in Osler's Web, women with MS were often institutionalized as delusional until 1985, when the early MRI brain imaging that became available in that era revealed regions of demyelination in the brain. MS was referred to as "the faker's disease" and its symptoms early on were referred to as hysterical paralysis. Men who acquire ME quickly learn what it's like to be a second-class citizen in their own country, though they nevertheless are treated with somewhat more seriousness than women with ME--even though women are typically more severely afflicted. I have no solutions for this other than repeatedly making the point with members of congress, perhaps women members in particular, who may already have experienced this particular form of prejudice in their own lives. Lastly, I've noticed that the scientists who have made the greatest contributions to ME in contemporary times have tended to be women. Agent Orange vets did finally prevail, but it took them over twenty years of lawsuits to be compensated for their injuries. One thing US government agencies do not do gracefully is admit their mistakes--and, of course, apologize.
Looks like a very strong basis for a sexual discrimination lawsuit. A clear pattern of ignoring/dismissing diseases that predominately affect women., and/or psychologizing female patients who present with these diseases ( I suspect funding & research records would support this claim). Worse, an equally clear pattern of deliberately disseminating results of highly flawed research in which descriptions of female subjects are described, implicitly & explicitly, using archaic stereotypes, hysteria being a favorite ( a fair amount of publically available evidence) These patterns are compounded by hires in the agency that present as holding the same type of negative stereotypical way, (again supported by publicly available written &/or published documents & transcripts). Let’s face it, the discrimination and prejudice against women & illnesses that predominately affect women has been very public, and if a judge or jury were not too sexist themselves, should be provable in court. Or at least embarrassing to the government (perhaps depending on election results?)
I made a comment above, but would like to repeat some of it here in response to your post.
I think misogyny may have played a big role in this government’s dismissal of ME back in the 80s, and perhaps longer.
But based on close observation and insider accounts, I’m convinced that people at the highest level of the NIH and CDC have known for decades now just how severe this disease is, and that it is infectious. But they can’t let that information become public, because it would expose their massive errors over the past 40 years.
Think of it: What if it became known that a very serious, disabling infectious disease spread to millions under their watch, and they didn’t catch it? How would that affect the public perception of scientists like Fauci who have attained almost God-like status?
So for at least the last 15 years, and probably longer, they have been doing everything they can to obstruct progress into this disease. They blocked a consensus on good case definitions for research. They’ve co-opted researchers and advocacy leaders alike. And, in particular, they’ve have made it impossible for any researcher who wants grant funding to even discuss the possibility of an infectious etiology. Even though a cursory look at the epidemiology makes this pretty obvious, as Hillary’s wonderful historical outlines have shown.
I will add: In addition to all the people with ME who have been so severely disabled, and the suicides, NIH and CDC also failed to prevent the deaths of people with ME who went on to develop Non-Hotchkins Lymphoma (NHL).
See this paper published by NIH National Cancer Institute (NCI) researchers in the prestigious journal “Cancer” on May 30, 2012:
Did NIH send out lots of press releases heralding the publication of this study? They did not. In fact, NIH representative Susan Maier did not even mention it in her CFSAC presentation on recent NIH activities shortly afterwards.
Even more interesting is the subsequent career of the lead author of this study, Cindy M. Chang, PhD, who at the time of publication was a post-doc at NCI. Her research up until then had been on the relation of viruses to cancer, especially herpes viruses.
One would think that this post-doc’s career would have gotten a big boost from her paper’s acceptance into this prestigious journal, yes?
Well, according to her Linked In profile, she left NIH within one month of the study’s publication. To go to the FDA. To work on tobacco issues. Where she apparently still is.
And, she would not respond to requests to discuss her study afterwards.
It would be interesting to see if any journalists could get her talking about this experience now, 12 years later. But my guess is she will not talk. She is young and still has a long career ahead of her which she likely wants to preserve.
The story of the relationship between ME and non-Hodgkin's lymphoma goes back to the 1980s and probably long before, and it's not pretty. One of the nation's experts in understanding the relationship between viruses and NHL sought grant support from the NIH in that decade to investigate this relationship and was shot down. He was furious, as he was used to getting multi-million dollar grants from NIH to study cancer and viruses, but apparently, not when it came to ME. He already had done some preliminary study of ME and NHL and had amassed some suggestive pilot data. But with a clear signal that NIH would not support his research, he left the field--after writing a furious letter to the NIH about the way he had been treated. It was probably the closest the ME/NHL link came in the last century to being unraveled. If the NIH continues to take ME seriously, there is no way that institution is going to address the lymphoma link, surely, even if research in this area could result in significant information about the cause of ME and NHL.
I agree that it’s gaslighting. But advocates need to understand that this strategy comes from the very top. Higher ups at NIH and CDC have been deliberating obstructing progress into this disease for decades.
It’s not ignorance or bias - not at the top levels. It’s deliberate obstruction. The powers that be at NIH and the CDC do not want progress made on this disease, because they do not want it known that an epidemic of this severity has been spreading for more than 40 years under their watch.
In other words: I feel certain at this point that high level people in both NIH and CDC know that an infectious pathogen is behind this disease, and have known this for a long time. And they have succeeding in manipulating and bribing the research community into not pursuing any hypotheses related to pathogens.
When Fauci had his moment of short-lived heroism during the Covid Pandemic, we ME patients knew the truth about this tiny, little man. Now that the country is awakening to the damage he inflicted on society during Covid through excessive lockdowns, they may start to understand the destruction he inflicted on the ME community for decades.
Brilliant article, brilliant writing. Hillary is so good on the politics of ME
Thanks, Maryann
Thank you for sharing details about the systemic institutional bias at NIH that has been rampant for decades. A sincere apology from NIH to patients would be a good place to start.
Thank you, Colleen
Well said Hillary. This disease has such a sad history thanks to the incompetence of those involved at the NIH/CDC through the years. It is so surreal. I hope they do a 60 Minutes story on ME/CFS some day and I hope you're one of the individuals they interview. The public needs to understand and be made aware of how this serious disease has been neglected for over 40 years. I will try to email 60 Minutes with the idea... you never know! I had never heard of or understood ME/CFS until I read your books (as well as Neenyah Olstrom and Charles Ortleb's books). Dr. Nath also needs to read your books.
Allison Haynes May
Excellent, Hillary, and of course all true. It's shocking and maddening how horribly we've been treated, and we are immensely fortunate as a patient community that you began documenting all of this abuse in the 80s. I agree that a sincere admission of failure and an apology is needed in order to stop this ongoing mess.
I must add that, during my years of "whatever advocacy I can manage", I've been repeatedly astonished at how many people who call themselves advocates are either unaware of, or aware but oblivious to, this history. It is essential information that is needed to inform the actions we take.
Agree, Allison. A difficulty with avoiding historical aspects of the relationship of federal agencies to ME is that advocates may think cozying up to CDC/NIH is the way to go--that administrators will see the light if patients help them to understand the depth of the suffering. After all, they must be human, right? The problem goes so much deeper. There are political, financial, reputational issues on the line for people in these agencies. Here's a bitter reality: they only care to the degree that their esteem among their colleagues, their jobs and pensions remain unaffected. There are hundreds of diseases vying for attention. And then there's the problem of persistent and extreme bias compounding the problem. What's required is political power coming at them from outside their doors. Personally, I feel betrayed when large patient organizations claiming to represent ME patients spend money and energy trying to build relationships with these agencies--which have been the doorstops to scientific progress. It's so unlikely to be to patients' advantage. They do not represent me.
Hillary: See my reply to Rhonda Ovist below - very relevant to this issue.
Wonderful.
As a Brit I'm reminded by this comment made by Wessely in 1990 :
"“The description given at the Mayo Clinic remains accurate: ‘The average doctor will see they are neurotic and he will often be disgusted with them’ ”
(In: Psychological Disorders in General Medical Settings, ed: Sartorius et al; Hogrefe & Huber, 1990)
Nath's rather hysterical outburst at the recent symposium ignited an immediate link in my consciousness to this 34 year old quote. It's gaslighting. It's pathetic. Two grown men acting like children. It's narcissistic and demeaning. I'm not the sort of person who forgives and forgets and I will never forgive these types of behaviours, ever. Personally I would prefer their 'sorry' to come with an enormous pay check which can fund the research of the few decent and honourable researchers who have made meaningful strides in understanding biomedical aspects of this disease despite paltry funding opportunities.
If NIH *really* wanted to show it was making an effort, losing Wallit and diverting shed loads of money to the likes of VanElzakker, Hanson and Younger might be a start. Imagine what many millions of $$ in the right hands could do? Find treatments, find a cure even? And that's the quickest, and only, way to get rid of us pesky ME patients and advocates. That will really shut us up, won't it? Give us treatment, make our lives better, and we'll stop nagging you and you can stop gaslighting us.
Gaslighting is always the default-setting of a coercive and controlling 'relationship' which is what this is. The perpetrator of a coercive and controlling 'relationship' is often the one inferring themselves as the victim. And that's exactly what Nath sounds like to me.
The NIH need to pull up their big-boy pants and, instead of continued machinations to try to reframe what they have done in a better light, start doing their job properly. Personally I'm less fussed by the word 'sorry' .. I'd like them to say it.. they *ought* to say it, but abusers saying 'sorry' seldom mean it. I like actions. Actions always speak louder. Full atonement for what they, and their predecessors, have done.
Appreciate this insightful comment. Yes, the real issue is what does NIH do next?
Is "sorry" just too easy? And would anyone believe it? They're 100% unlikely to issue an apology--they can't afford to admit the enormity of their mistakes and miscalculations. I guess my "sorry" proposal could come under the heading "thought experiment," especially in relation to Nath's delusional request for gratitude. What would an acceptable "sorry " look like, and how might it improve the fraught relationship? If they could manage "sorry," it might help them out of their bind, and yet most patients are past the tipping point. How can one forgive decades of life stolen when one had just one life? At minimum, reparations are in order, including for the families and descendants of people who have died.
Not sure if Wessely used the word "disgusted" or the Mayo Clinic used it, but of course it could have been either. I interviewed many MDs at the Mayo for Osler's Web in early '90s and they certainly were disgusted, but not so much that they weren't eager to collect enormous sums of money every year. The clinic's well-organized fleecing of ME sufferers lasted for years and years. They accepted dozens of ME patients into the clinic every month, charging each of them thousands of dollars, before routinely sending them to the psych dept to be scolded: take this anti-depressant and quit feeling sorry for yourself.
Yes, you're right.. clearly the word 'disgusted' must have been used by the Mayo but Wessely had fully endorsed it via the quote I copied above.
I have been conscious of how badly The Mayo have treated people with ME but I'm curious about the volte face of recent years. Their language seems to have altered. I'm not well enough to keep tabs on these things in the way I might have done a while ago, but of course I don't assume that I can trust The Mayo now. Is this some cynical 'positioning' or have new personnel authentically changed the flavour of the setting for the better?
Maybe they realized they could make even more money if they quit mistreating ME patients. They may have become more politically correct after the IOM definition of 2015. (US) So, they may sound ME-friendly, but their conceptualization of the disease will be in line with whatever CDC/NIH says it is. They won't be in the forefront of treating, identifying etiology, etc., is my guess.
Understood. Thanks.
Excellent. Perhaps what we need is to make a clearer connection of 40 years of sexist neglect of ME to the ways the that Medicine has treated ppl w/autoimmune disorders that disproportionately affect women.
Ive come across a number of references to the psychologizing & abuse of women w/MS and RA. Is anyone familiar with any research on these examples. Apparently, many women w/either of these conditions were institutionalized, & when these women’s symptoms continued, they were written off stubborn, resistant, or difficult, and blamed if they died (which those with untreated MS must have been risk for).
There is a good amount of feminist research of sexism in medicine: my first introduction to this research was a short book by Barbara Ehrenreich & Deirdre English called Complaints and Disorders: the Sexual Politics of Sickness. It is pretty well established that institution of medicine is mired in negative stereotypical assumptions about women, as well as race, social class, ethnicity, sexuality, age and so on. It has also been well documented that medical schools, even medical textbooks, reflect those same stereotypes, with female students & faculty reporting sexual harassment, gender inequality & hostile workplace.
In that context, just the examples raised in Hillary’s article is a continuation of a very ugly pattern, one that has and co times to serve the interests of those in power - particularly majority shareholders of medical, research, pharmaceutical, insurance & medical technology corporations AS WELL AS the politicians & appointees who depend on those shareholders to finance their careers.
Maybe instead of an apology, what we really need is an explanation why, after dismissing serious illnesses that disproportionately affect women so many times, at so high a cost to both female and male patients, that they are still doing the same thing. How much more proof do they need before they see this is just bad medicine? I don’t even want to know how they account for 20% more or less men who have the same illness!
There is nothing rational, logical or even
2) intelligent about this approach. What is happening with ME is outrageous, more so when we consider it in context of very similar responses to other “women’s” illnesses. (The government has also done much the same in reaction to military veterans: Agent Orange, PTSD, and Gulf War Syndrome have all been discounted, demeaned and ignored while thousands, tens of thousands, of veterans suffer & die).
Great comment. I don't have much to add to this. Woman-hating, misogyny, whatever one calls it, has been such a constant, obvious and nightmarish aspect of the neglect of ME by practicing doctors, the academic research establishment and the federal health agencies, and for so long, one almost becomes inured to it, as one does to some extent in everyday life from childhood on. As I wrote in Osler's Web, women with MS were often institutionalized as delusional until 1985, when the early MRI brain imaging that became available in that era revealed regions of demyelination in the brain. MS was referred to as "the faker's disease" and its symptoms early on were referred to as hysterical paralysis. Men who acquire ME quickly learn what it's like to be a second-class citizen in their own country, though they nevertheless are treated with somewhat more seriousness than women with ME--even though women are typically more severely afflicted. I have no solutions for this other than repeatedly making the point with members of congress, perhaps women members in particular, who may already have experienced this particular form of prejudice in their own lives. Lastly, I've noticed that the scientists who have made the greatest contributions to ME in contemporary times have tended to be women. Agent Orange vets did finally prevail, but it took them over twenty years of lawsuits to be compensated for their injuries. One thing US government agencies do not do gracefully is admit their mistakes--and, of course, apologize.
Looks like a very strong basis for a sexual discrimination lawsuit. A clear pattern of ignoring/dismissing diseases that predominately affect women., and/or psychologizing female patients who present with these diseases ( I suspect funding & research records would support this claim). Worse, an equally clear pattern of deliberately disseminating results of highly flawed research in which descriptions of female subjects are described, implicitly & explicitly, using archaic stereotypes, hysteria being a favorite ( a fair amount of publically available evidence) These patterns are compounded by hires in the agency that present as holding the same type of negative stereotypical way, (again supported by publicly available written &/or published documents & transcripts). Let’s face it, the discrimination and prejudice against women & illnesses that predominately affect women has been very public, and if a judge or jury were not too sexist themselves, should be provable in court. Or at least embarrassing to the government (perhaps depending on election results?)
I made a comment above, but would like to repeat some of it here in response to your post.
I think misogyny may have played a big role in this government’s dismissal of ME back in the 80s, and perhaps longer.
But based on close observation and insider accounts, I’m convinced that people at the highest level of the NIH and CDC have known for decades now just how severe this disease is, and that it is infectious. But they can’t let that information become public, because it would expose their massive errors over the past 40 years.
Think of it: What if it became known that a very serious, disabling infectious disease spread to millions under their watch, and they didn’t catch it? How would that affect the public perception of scientists like Fauci who have attained almost God-like status?
So for at least the last 15 years, and probably longer, they have been doing everything they can to obstruct progress into this disease. They blocked a consensus on good case definitions for research. They’ve co-opted researchers and advocacy leaders alike. And, in particular, they’ve have made it impossible for any researcher who wants grant funding to even discuss the possibility of an infectious etiology. Even though a cursory look at the epidemiology makes this pretty obvious, as Hillary’s wonderful historical outlines have shown.
I will add: In addition to all the people with ME who have been so severely disabled, and the suicides, NIH and CDC also failed to prevent the deaths of people with ME who went on to develop Non-Hotchkins Lymphoma (NHL).
See this paper published by NIH National Cancer Institute (NCI) researchers in the prestigious journal “Cancer” on May 30, 2012:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3434293/
Did NIH send out lots of press releases heralding the publication of this study? They did not. In fact, NIH representative Susan Maier did not even mention it in her CFSAC presentation on recent NIH activities shortly afterwards.
Even more interesting is the subsequent career of the lead author of this study, Cindy M. Chang, PhD, who at the time of publication was a post-doc at NCI. Her research up until then had been on the relation of viruses to cancer, especially herpes viruses.
One would think that this post-doc’s career would have gotten a big boost from her paper’s acceptance into this prestigious journal, yes?
Well, according to her Linked In profile, she left NIH within one month of the study’s publication. To go to the FDA. To work on tobacco issues. Where she apparently still is.
And, she would not respond to requests to discuss her study afterwards.
It would be interesting to see if any journalists could get her talking about this experience now, 12 years later. But my guess is she will not talk. She is young and still has a long career ahead of her which she likely wants to preserve.
The story of the relationship between ME and non-Hodgkin's lymphoma goes back to the 1980s and probably long before, and it's not pretty. One of the nation's experts in understanding the relationship between viruses and NHL sought grant support from the NIH in that decade to investigate this relationship and was shot down. He was furious, as he was used to getting multi-million dollar grants from NIH to study cancer and viruses, but apparently, not when it came to ME. He already had done some preliminary study of ME and NHL and had amassed some suggestive pilot data. But with a clear signal that NIH would not support his research, he left the field--after writing a furious letter to the NIH about the way he had been treated. It was probably the closest the ME/NHL link came in the last century to being unraveled. If the NIH continues to take ME seriously, there is no way that institution is going to address the lymphoma link, surely, even if research in this area could result in significant information about the cause of ME and NHL.
I agree that it’s gaslighting. But advocates need to understand that this strategy comes from the very top. Higher ups at NIH and CDC have been deliberating obstructing progress into this disease for decades.
It’s not ignorance or bias - not at the top levels. It’s deliberate obstruction. The powers that be at NIH and the CDC do not want progress made on this disease, because they do not want it known that an epidemic of this severity has been spreading for more than 40 years under their watch.
In other words: I feel certain at this point that high level people in both NIH and CDC know that an infectious pathogen is behind this disease, and have known this for a long time. And they have succeeding in manipulating and bribing the research community into not pursuing any hypotheses related to pathogens.
When Fauci had his moment of short-lived heroism during the Covid Pandemic, we ME patients knew the truth about this tiny, little man. Now that the country is awakening to the damage he inflicted on society during Covid through excessive lockdowns, they may start to understand the destruction he inflicted on the ME community for decades.
Enraging.