It makes me so angry. She died because she received neglectful ‘care’, gaslighting, and malpractice under NHS ‘treatment’. She could have lived. The ME didn’t kill her, the drs who refused to change her tube did. The ones who thought if they starved her she would eventually eat because it’s all in her mind. I don’t believe they COULDN’T treat her, I believe they WOULDN’T. None of them were able to step outside their own little boxes and approach the situation with grace and LEARN what to do, how to treat her, they just stood and watched her die. How that’s part of ‘do no harm’ I don’t know. Grrrrrrrr.
Even someone who had a condition that was caused by a mental illness or they were doing it to themselves should still be fed. Just sit there and let someone die who actually has a neuroimmune disease. Then all of these people claim no one else is at fault, this is the most demented part of the medical field!
So tragic. I understand gaslighting by the mainstream medical community all too well. I just came from another immunologist appointment for both my husband and I as we have identical immune deficiency, fatigue, etc. He proceeded to tell me/us that nothing was wrong and to seek a therapist. In fact he doesn't want to see us again and doesn't want to monitor our immune systems. My PCP referred me to him and it was a total waste of our time. These doctors are clueless and they don't want to be bothered. My blood pressure must have gone up 80 points listening to this guy. I give up on the mainstream doctors because they cannot and will not help. I really hope the death of Mauve is not in vain and that something good for ME/CFS comes as a result.
Imagine the level of arrogance to presume that if one doesn’t know or understand the condition, then it must not actually exist, but rather be a figment of our imaginations - or desperate need for attention (more conceit - these doctors who think we would go though this hell just to get their attention, especially since it’s disproportionately negative, if not outright abusive.
Here’s the worst part. As Colleen has written about, the horrible treatment ME patients receive is nothing new. At least here in the US, & I’m guess it’s been much the same in much of Europe, other immune related diseases that are now considered legitimate were once treated as nothing but a sign of mental illness, with the result of mostly women being institutionalized bc they were in horrible pain & exhaustion from RA, or losing their ability to walk w/MS (along with any number of the horrible symptoms that most autoimmune & other immune-related diseases are accompanied by)?
The point here is that a western Medicine has been largely wrong so many times, at enormous cost to hundreds of thousands of people, mostly women, and yet they keep doing the same thing: assuming the patients symptoms are all in her head until such time that someone gets around to funding medical research that can not be so easily dismissed as evidence for smaller exploratory research can be, mo matter how powerful the positive findings that there is something medical going on.
I’m a scientist (social scientist) and I understand the need for good, unambiguous research findings in determining what’s going on. But to insist that without such findings, the patient’s complaints & visible symptoms should just be shrugged off? That is no only irrational, it’s pretty much the opposite of what the Practice of Medicine is supposed to be about, at least ideally (& no, the primary motive should never be profit, savings, or ego). Many alleged criminal’s are given a greater benefit of doubt than people w/ME are.
And it’s illogical - millions of people around the world can not be having the same type of shared hysteria or mental illness, not even by suggestion , since many of us are quite sick before we even know we have ME. I was sick for six years; how could the power of suggestion cause me to have the symptoms of disease I barely knew existed, ever mind what it does to a person?
For Doctors to “just assume” that our symptoms are all in my head, without any kind of real evidence, is enormously irrational, irresponsible, dangerous & cruel. And when that assumption rests in their head while they decide how to treat a severely ill & starving ME Patient, their prejudice some how justifies their refusal to try alternative means of treating the patient, listening to a ME expert advice on how to give nutrition to a starving young woman, or even take a couple of minutes and do a google search for published, peer-reviewed research about ME. That is one hell of a prejudice - a power mix of professional arrogance, lack of knowledge (& any attempt to become more knowable), misogyny & stigma of even the slightest suggestion that a person might be mentally ill.
But the worse part of this, doctors didn’t need to understand ME so much as they needed to be willing to try anything that may save a starving patients life. I assume to be a doctor is to recognize the signs of a person dying from malnutrition, a person whose record should show a constant effort to find some way to burnish her body, including her mother feeding her a liquid diet with a teaspoon. Doctors may not know much about ME, but they certainly know starvation, & the early signs of a body shutting down as a result of it.
I wonder, is this how they treat patients with anorexia if they show up at the hospital near death? Do they refuse to explore whatever possible alternative means to get nutrition into the patient because it’s their way or rhetorical highway? Do they say “oh well, you won’t eat, so we are going to let you die? How about a cancer patient who isn’t eating bc of the nausea, to the point that they are losing too much weight? Do they have e to die as well, if their body can’t handle the size tube they typically use? I can’t imagine.
We are all being gaslighted. I’d like to know why? Why are we so easily dismissed and left to die? Why aren’t doctors reading the published & peer-reviewed articles on ME - there seems to be plenty of them. Why won’t medicine stop torturing & killing people with immune-related diseases; why doesn’t the institution of medicine acknowledge this pattern and do something about it? Is it money? Power? The fact that the number & percentage of people with immune-related conditions seems to be increasing, even accounting for better diagnosis, a pattern found in the so-called developed West, not the less developed nations in the world - is there a connection between theses diseases & the increasing toxins & pharmaceuticals in our environment (& keep in mind, Veterans w/Gulf war syndrome suffer with similar symptoms as ME patients do, albeit connected to different types cytokines & bodily systems)
Whatever it is, at some point you’d think it would be better to find the cause & treatment for those sick, than allow millions more become sick with ME, Long-Covid, Chronic Lyme Disease, Gulf War Syndrome, and the long list of autoimmune diseases that exist.
I’m not saying all these diseases are the same, but there is a large overlap of symptoms, they have been, or are being, responded to in a similar way by Medical Institutions & doctors, and the people who have these diseases are mistreated, stigmatized, abused, and even left to die without assistance. There are too many of us to shrug off, with ME & Long Covid resulting in the largest patient count.
At the very least, we need to find a way to be far more visible and far more difficult to ignore when we demand more from Medicine & practitioners. I recently suggested to a young ME patient in X that patients form a virtual protest group, so that whenever one of us being abused by family or doctors, or when officials start up with their gaslighting of our illnesses & our treatment, we each “arrive” virtually” (or by phone) for a Demonstration in support of our fellow patients & an end to the stigmatization of our diseases.
It’s already happening , spontaneously: I heard that when the story of Carla broke - also a young woman in England being abused by a Hospital - supporters started calling/emailing the hospital, the doctors, the media (the latter was probably most important). And I say the same for a young person here in the States. Now imagine a million of us doing it. The intention is not to harass anyone, but rather to make ourselves known, to be counted, to show that everyone of us has a million or more people who have our backs. The same non-violent methods I’d use of if I could bet out of the house to protest.
I’m worried if we don’t do something soon, and governments continue to justify &/or rationalize our deaths at the hands of medical professionals will only continue & get worse. It’s works for those that would dismiss us that we can’t jump up and go join a demonstration that would make our existence more visible to the public, & perhaps more worthy of compassion. It’s time to stop letting them get away with it.
I agree 100% Rhonda. Forty years of neglect is horrific, and there were researchers back in the 80's who found evidence of a retrovirus for the Incline Village outbreak. In my case, I know when I was infected and from whom. I then gave this to my husband. There is so much evidence of an infection between the two of us, i.e. identical immune systems, identical symptoms, etc. that it's outrageous. I do believe, at least in my case, that it is some kind of retrovirus. None of the mainstream doctors care in the least and none of them want to test my (frozen, removed) thymus tissue, with the exception of one researcher. It gets me extremely upset. I'm sure you've read the ME/CFS books by Neenyah Ostrom and Hillary Johnson. The history is all documented thanks to these individuals. I wish there was a way to sue these medical establishments like the CDC and NIH. It's truly not fair.
Thank you for sharing Steve Toppel’s column in the inquest. It was the best one I’ve read. All the other frustrated me to distraction by their soft touch, comfortable with showing Maeve as a victim of a cruel disease, but unwilling to ask the tougher questions, which I have shared elsewhere in comments to your posts & on X.
From the beginning of followjng this case, I’ve believed that Maeve was killed by the disinterest in hospital doctors to save her life. The very idea that Doctors wouldn’t consider something so simple as changing the size of tubing they were using when it was obvious that their choice was impossible for Maeve to tolerate is unbelievable. Is this modern medicine today, “our way, or the highway,” if we don’t appreciate what they are doing and how they do it, we can just leave and die? Is this how they treat all go their patients who don’t fit in the narrow confines of their normal operating procedures? Given that very few people actually have bodies that meet the ideal type used in medical research, this refusal to try alternatives seems to be a very counter to the presumed responsibility of medical professions - to do every possible to save a life.
For media to treat so causally the brutal death of this young woman, to blindly accept the assistant coroners report that Drs did everything they cold be expected to do, is as concerning as the fact that Mauve was allowed to die without any kind of effort to try alternative means: apparently Preserving public reputation of the nations medical institutions is more important than outcomes for the patient. But then, I guess that we kind of know that already.
Topple wrote the only critical analysis of this ridiculously superficial review of Maeve’s death. And I appreciate that. Because this whole case, and the growing list of young people with ME trapped in abusive conditions, makes me furious. At least Topple provided one journalistic option for the public that disrupts that sanitary review of Medicine in England that came from the findings of the inquest: at least one look into what was in real life, deliberate malpractice & unthinkable cruelty, for Maeve, her family and the rest of us. Topple is correct: so far, the findings of the Inquest of Maeve’s death serve as a clear warning for all other people in England who suffer from ME that they will find no comfort or relief from English Hospitals, & should incompetent &/or prejudiced Drs fail to use the full extent of their abilities & medical knowable (easily accessible to anyone with a cell phone) to save ME patients, there will be no questions asked, no one called into account. They will only officially list the disease they refuse to believe is real as the cause of death.
Just goes to show - human beings can justify or rationalize just about anything is it serves their interest, no matter how brutally cruel or unthinkable. And here is the rub, if we have allowed this flexibility in morals $ norms to exist for some, it becomes all the more easily to do the same to others. No one is safe.
"My sense is that once the diagnosis of ME happens, all else ceases." Exactly this! I have been at this a LONG time (35 years this month) and the number of people I have seen find out they have something else is far too many. Getting labeled with CFS, ME/CFS or ME has left many needlessly suffering because doctors label and then stop trying to do anything more.
While there is no cure for ME, there are certainly other things that should be considered for treatment, like dysautonomia, MCAS, etc. It is frustrating that quantity of life takes all the attention when quality of life is too often ignored.
It makes me so angry. She died because she received neglectful ‘care’, gaslighting, and malpractice under NHS ‘treatment’. She could have lived. The ME didn’t kill her, the drs who refused to change her tube did. The ones who thought if they starved her she would eventually eat because it’s all in her mind. I don’t believe they COULDN’T treat her, I believe they WOULDN’T. None of them were able to step outside their own little boxes and approach the situation with grace and LEARN what to do, how to treat her, they just stood and watched her die. How that’s part of ‘do no harm’ I don’t know. Grrrrrrrr.
I don't know either. Harm was done... :(
Even someone who had a condition that was caused by a mental illness or they were doing it to themselves should still be fed. Just sit there and let someone die who actually has a neuroimmune disease. Then all of these people claim no one else is at fault, this is the most demented part of the medical field!
So tragic. I understand gaslighting by the mainstream medical community all too well. I just came from another immunologist appointment for both my husband and I as we have identical immune deficiency, fatigue, etc. He proceeded to tell me/us that nothing was wrong and to seek a therapist. In fact he doesn't want to see us again and doesn't want to monitor our immune systems. My PCP referred me to him and it was a total waste of our time. These doctors are clueless and they don't want to be bothered. My blood pressure must have gone up 80 points listening to this guy. I give up on the mainstream doctors because they cannot and will not help. I really hope the death of Mauve is not in vain and that something good for ME/CFS comes as a result.
I am so sorry you had that experience... I wish it was an uncommon one. I truly hope a better day is coming for us all.
Imagine the level of arrogance to presume that if one doesn’t know or understand the condition, then it must not actually exist, but rather be a figment of our imaginations - or desperate need for attention (more conceit - these doctors who think we would go though this hell just to get their attention, especially since it’s disproportionately negative, if not outright abusive.
Here’s the worst part. As Colleen has written about, the horrible treatment ME patients receive is nothing new. At least here in the US, & I’m guess it’s been much the same in much of Europe, other immune related diseases that are now considered legitimate were once treated as nothing but a sign of mental illness, with the result of mostly women being institutionalized bc they were in horrible pain & exhaustion from RA, or losing their ability to walk w/MS (along with any number of the horrible symptoms that most autoimmune & other immune-related diseases are accompanied by)?
The point here is that a western Medicine has been largely wrong so many times, at enormous cost to hundreds of thousands of people, mostly women, and yet they keep doing the same thing: assuming the patients symptoms are all in her head until such time that someone gets around to funding medical research that can not be so easily dismissed as evidence for smaller exploratory research can be, mo matter how powerful the positive findings that there is something medical going on.
I’m a scientist (social scientist) and I understand the need for good, unambiguous research findings in determining what’s going on. But to insist that without such findings, the patient’s complaints & visible symptoms should just be shrugged off? That is no only irrational, it’s pretty much the opposite of what the Practice of Medicine is supposed to be about, at least ideally (& no, the primary motive should never be profit, savings, or ego). Many alleged criminal’s are given a greater benefit of doubt than people w/ME are.
And it’s illogical - millions of people around the world can not be having the same type of shared hysteria or mental illness, not even by suggestion , since many of us are quite sick before we even know we have ME. I was sick for six years; how could the power of suggestion cause me to have the symptoms of disease I barely knew existed, ever mind what it does to a person?
For Doctors to “just assume” that our symptoms are all in my head, without any kind of real evidence, is enormously irrational, irresponsible, dangerous & cruel. And when that assumption rests in their head while they decide how to treat a severely ill & starving ME Patient, their prejudice some how justifies their refusal to try alternative means of treating the patient, listening to a ME expert advice on how to give nutrition to a starving young woman, or even take a couple of minutes and do a google search for published, peer-reviewed research about ME. That is one hell of a prejudice - a power mix of professional arrogance, lack of knowledge (& any attempt to become more knowable), misogyny & stigma of even the slightest suggestion that a person might be mentally ill.
But the worse part of this, doctors didn’t need to understand ME so much as they needed to be willing to try anything that may save a starving patients life. I assume to be a doctor is to recognize the signs of a person dying from malnutrition, a person whose record should show a constant effort to find some way to burnish her body, including her mother feeding her a liquid diet with a teaspoon. Doctors may not know much about ME, but they certainly know starvation, & the early signs of a body shutting down as a result of it.
I wonder, is this how they treat patients with anorexia if they show up at the hospital near death? Do they refuse to explore whatever possible alternative means to get nutrition into the patient because it’s their way or rhetorical highway? Do they say “oh well, you won’t eat, so we are going to let you die? How about a cancer patient who isn’t eating bc of the nausea, to the point that they are losing too much weight? Do they have e to die as well, if their body can’t handle the size tube they typically use? I can’t imagine.
We are all being gaslighted. I’d like to know why? Why are we so easily dismissed and left to die? Why aren’t doctors reading the published & peer-reviewed articles on ME - there seems to be plenty of them. Why won’t medicine stop torturing & killing people with immune-related diseases; why doesn’t the institution of medicine acknowledge this pattern and do something about it? Is it money? Power? The fact that the number & percentage of people with immune-related conditions seems to be increasing, even accounting for better diagnosis, a pattern found in the so-called developed West, not the less developed nations in the world - is there a connection between theses diseases & the increasing toxins & pharmaceuticals in our environment (& keep in mind, Veterans w/Gulf war syndrome suffer with similar symptoms as ME patients do, albeit connected to different types cytokines & bodily systems)
Whatever it is, at some point you’d think it would be better to find the cause & treatment for those sick, than allow millions more become sick with ME, Long-Covid, Chronic Lyme Disease, Gulf War Syndrome, and the long list of autoimmune diseases that exist.
I’m not saying all these diseases are the same, but there is a large overlap of symptoms, they have been, or are being, responded to in a similar way by Medical Institutions & doctors, and the people who have these diseases are mistreated, stigmatized, abused, and even left to die without assistance. There are too many of us to shrug off, with ME & Long Covid resulting in the largest patient count.
At the very least, we need to find a way to be far more visible and far more difficult to ignore when we demand more from Medicine & practitioners. I recently suggested to a young ME patient in X that patients form a virtual protest group, so that whenever one of us being abused by family or doctors, or when officials start up with their gaslighting of our illnesses & our treatment, we each “arrive” virtually” (or by phone) for a Demonstration in support of our fellow patients & an end to the stigmatization of our diseases.
It’s already happening , spontaneously: I heard that when the story of Carla broke - also a young woman in England being abused by a Hospital - supporters started calling/emailing the hospital, the doctors, the media (the latter was probably most important). And I say the same for a young person here in the States. Now imagine a million of us doing it. The intention is not to harass anyone, but rather to make ourselves known, to be counted, to show that everyone of us has a million or more people who have our backs. The same non-violent methods I’d use of if I could bet out of the house to protest.
I’m worried if we don’t do something soon, and governments continue to justify &/or rationalize our deaths at the hands of medical professionals will only continue & get worse. It’s works for those that would dismiss us that we can’t jump up and go join a demonstration that would make our existence more visible to the public, & perhaps more worthy of compassion. It’s time to stop letting them get away with it.
I agree 100% Rhonda. Forty years of neglect is horrific, and there were researchers back in the 80's who found evidence of a retrovirus for the Incline Village outbreak. In my case, I know when I was infected and from whom. I then gave this to my husband. There is so much evidence of an infection between the two of us, i.e. identical immune systems, identical symptoms, etc. that it's outrageous. I do believe, at least in my case, that it is some kind of retrovirus. None of the mainstream doctors care in the least and none of them want to test my (frozen, removed) thymus tissue, with the exception of one researcher. It gets me extremely upset. I'm sure you've read the ME/CFS books by Neenyah Ostrom and Hillary Johnson. The history is all documented thanks to these individuals. I wish there was a way to sue these medical establishments like the CDC and NIH. It's truly not fair.
Indescribably tragic and infuriatingly preventable. Thank-you Colleen.
Thank you for sharing Steve Toppel’s column in the inquest. It was the best one I’ve read. All the other frustrated me to distraction by their soft touch, comfortable with showing Maeve as a victim of a cruel disease, but unwilling to ask the tougher questions, which I have shared elsewhere in comments to your posts & on X.
From the beginning of followjng this case, I’ve believed that Maeve was killed by the disinterest in hospital doctors to save her life. The very idea that Doctors wouldn’t consider something so simple as changing the size of tubing they were using when it was obvious that their choice was impossible for Maeve to tolerate is unbelievable. Is this modern medicine today, “our way, or the highway,” if we don’t appreciate what they are doing and how they do it, we can just leave and die? Is this how they treat all go their patients who don’t fit in the narrow confines of their normal operating procedures? Given that very few people actually have bodies that meet the ideal type used in medical research, this refusal to try alternatives seems to be a very counter to the presumed responsibility of medical professions - to do every possible to save a life.
For media to treat so causally the brutal death of this young woman, to blindly accept the assistant coroners report that Drs did everything they cold be expected to do, is as concerning as the fact that Mauve was allowed to die without any kind of effort to try alternative means: apparently Preserving public reputation of the nations medical institutions is more important than outcomes for the patient. But then, I guess that we kind of know that already.
Topple wrote the only critical analysis of this ridiculously superficial review of Maeve’s death. And I appreciate that. Because this whole case, and the growing list of young people with ME trapped in abusive conditions, makes me furious. At least Topple provided one journalistic option for the public that disrupts that sanitary review of Medicine in England that came from the findings of the inquest: at least one look into what was in real life, deliberate malpractice & unthinkable cruelty, for Maeve, her family and the rest of us. Topple is correct: so far, the findings of the Inquest of Maeve’s death serve as a clear warning for all other people in England who suffer from ME that they will find no comfort or relief from English Hospitals, & should incompetent &/or prejudiced Drs fail to use the full extent of their abilities & medical knowable (easily accessible to anyone with a cell phone) to save ME patients, there will be no questions asked, no one called into account. They will only officially list the disease they refuse to believe is real as the cause of death.
Just goes to show - human beings can justify or rationalize just about anything is it serves their interest, no matter how brutally cruel or unthinkable. And here is the rub, if we have allowed this flexibility in morals $ norms to exist for some, it becomes all the more easily to do the same to others. No one is safe.
Something needs to change.
"My sense is that once the diagnosis of ME happens, all else ceases." Exactly this! I have been at this a LONG time (35 years this month) and the number of people I have seen find out they have something else is far too many. Getting labeled with CFS, ME/CFS or ME has left many needlessly suffering because doctors label and then stop trying to do anything more.
While there is no cure for ME, there are certainly other things that should be considered for treatment, like dysautonomia, MCAS, etc. It is frustrating that quantity of life takes all the attention when quality of life is too often ignored.