Thank you to the authors for writing such an insightful article.
In addition to the comfort offered to friends and family of donors’, the act of writing tributes enables reflection from students about their experiences and relationship with their cadaver, which is alluded to by the authors.
I imagine for first year students this process is both cathartic and valuable in acquiring closure after forming such an intense and unparalleled relationship with their donor. At Norwich Medical School, where I am currently studying, anatomy dissections occur regularly throughout all five years of the course but with particularly focussed study occurring in the first and second years. I remember vividly the confusing emotions I would have after saying goodbye to each year’s donated body. A strange sense of sadness and loss, very similar to those of the Cambridge students but also gratitude towards the donor, I was proud of their decision to donate their body and pleased that one of their last wishes (to donate their body to medical education) had been fulfilled.
The anatomy department at Norwich Medical School, similarly to Cambridge’s, encourages each of their dissection groups to write tributes to be read at a memorial service held each year, to which family and friends of the donors are invited, as well as a selection of students. Other members of my dissection group always took this mantle but I wonder if in hindsight group reflection and write-up would have...
Thank you to the authors for writing such an insightful article.
In addition to the comfort offered to friends and family of donors’, the act of writing tributes enables reflection from students about their experiences and relationship with their cadaver, which is alluded to by the authors.
I imagine for first year students this process is both cathartic and valuable in acquiring closure after forming such an intense and unparalleled relationship with their donor. At Norwich Medical School, where I am currently studying, anatomy dissections occur regularly throughout all five years of the course but with particularly focussed study occurring in the first and second years. I remember vividly the confusing emotions I would have after saying goodbye to each year’s donated body. A strange sense of sadness and loss, very similar to those of the Cambridge students but also gratitude towards the donor, I was proud of their decision to donate their body and pleased that one of their last wishes (to donate their body to medical education) had been fulfilled.
The anatomy department at Norwich Medical School, similarly to Cambridge’s, encourages each of their dissection groups to write tributes to be read at a memorial service held each year, to which family and friends of the donors are invited, as well as a selection of students. Other members of my dissection group always took this mantle but I wonder if in hindsight group reflection and write-up would have been a valuable and therapeutic exercise for all students. This year I am intercalating but upon returning to medicine I will be sure to seize the opportunity to express my thanks to both the donor and their loved ones either on my own or in a session with my peers.
For students in their first year, dissection is a world away from anything most students (most of whom are not even in their 20s yet) have ever encountered. By incorporating this reflective writeup into a compulsory final seminar the gravity of the donation and the relationship students have formed with their cadaver, even if they’re not consciously aware of it, to be highlighted to all students. Opposed to the current system where some students can ignore the difficult concept or are blind to it entirely. With the discourse around the value and appropriateness of cadaveric dissection growing, it could also form the foundations for an ethical debate around the practice. Admittedly, a reflective writing workshop would not be the appropriate time nor place for a potentially contentious and emotive discussion. Such a discussion would however help incorporate dissection into other areas of the curriculum and not just in anatomy teaching. Helping to build an interconnected and transdisciplinary curriculum.
I am sure I am not the only student who, despite the vast amounts of knowledge gained from dissection, found the experience shocking and at times traumatic. I vividly remember seeing the undissected hand of my first year cadaver upsetting as prior to that I had been able to dehumanise the dissection material: the majority of it was covered by sheets and the sections we were working on had had the skin removed by technicians. I was able to view the sections as removed from the human identity and as flesh and tissue rather than an individual’s body. Upon seeing the hand, for the first time in my dissection teaching I acknowledged that the cadaver was a person, with details of their life etched onto their hands as shown by small scars, “liver spots” and with the way they kept their nails. From then on, I would hold the hand when it was exposed and I wasn’t actively dissecting elsewhere. In my head I was comforting the donor; I could have so easily have been holding the hands of my grandfather. In reality, I was comforting myself more than anything. I had been forced to confront the reality that on the table before me was a person who had lived a rich and full life, the details of which I could only imagine.
Discussing and sharing this experience with my peers may have helped myself in processing the humanity of the cadaver and may have also encouraged others to speak about any of their own anxieties and upsets related to dissection. Whilst a mandatory session may feel intrusive to some students and superfluous to others, contribution could be optional, allowing those who prefer silent introspective reflection to do so whilst offering a safe space for sharing amongst other students.
I think for students on courses where cadaveric dissection is taught, creating and writing tributes is an excellent tool for medical students, in their journey from layperson to clinician. Due to the intense emotions and connections formed with cadavers, as well as in respect to the immense gift donating ones body is, writing tributes and active reflection should be a compulsory part of anatomical teaching for all students. Without it medical schools risk allowing students to fail to grasp the gravity of their role as dissector or, as with me, allowing students to deal with complex and difficult emotions on their own before they are old enough and emotionally mature enough to process them alone.
Note to the editor - my apologies if this isn't a suitable or standard response to an article. I am looking to develop my ability to correspond with journals and in research in general, so fully anticipate a steep learning curve ahead of me. Thank you for taking the time to read my response if nothing more.
There is at least one basic mistake in the article by Sharpe and Greco: CBT and GET do not successfully treat ME/CFS for the majority of patients. The research supporting CBT and GET has been discredited by a large number of academics and scientists1. Patient surveys indicate that pacing is the most effective management for ME/CFS2. Therefore, the arguments about paradox and morality become meaningless.
References:
1. Vink M (2016) The PACE Trial Invalidates the Use of Cognitive Behavioral and Graded Exercise Therapy in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: A Review. J Neurol Neurobiol 2(3): doi http://dx.doi.org/10.16966/2379- 7150.124
2. Kirke KD PACE investigators’ response is misleading regarding patient survey results Journal of Health Psychology 2017, Vol. 22(9) 1168–1176
Sharp & Greco state: "This new approach assumes that the reality of illness has a complex and indeterminate character".
If by this they mean that the cause of any given illness cannot in principle be determined - as I suspect they are - then it is clear that they are abandoning the scientific enterprise. We ask Sharp and Greco: do they say illness is an effect? If they do then ipso facto they concede it has a cause or causes, and it is the task of science, in the broadest sense, to elucidate those causes.
And if they say illness is not an effect then they implicitly deny causality anywhere in the universe, which is obviously fatal to science. Furthermore, in so doing they are guilty of the ultimate hubris, that of claiming omniscience, since only an omniscient being could could assert that illness has no cause.
Alternatively, perhaps Sharp and Greco would say that illness is an effect but we cannot know the cause. Yet this is self-contradictory, because in order to know that illness is an effect they would have to know something about its cause - otherwise, how could they know that it is indeed an effect?
The view held by these authors that chronic fatigue syndrome is an illness without disease is at odds with the findings of the National Academy of Science, physiological and bio-medical researchers worldwide.
The authors do not explain how their "illness without disease" model, explains the cardinal symptoms of CFS i.e. post exertional malaise/orthostatic intolerance/sleep disturbances/ cognitive issues, all of which can be objectively monitored and measured.
Nor, do the authors explain how their "illness without disease" model explains physiological abnormalities seen in CFS, such as the reduction in the ability to generate energy on a second CPET test, carried out 24 hours after an initial test. Often called a 2-day CPET, this protocol and publications on other physiological abnormalities seen in people with CFS and can be found in the Workwell Foundation's online resources. The inability to generate energy has not been documented in healthy persons or those with any other diseases, to date and appears to be a finding that is unique to people with CFS.
Further, the article does not clarify that the form of CBT rejected by patients, is the unique form of CBT such as described in the PACE trial manuals. The PACE manuals describe a CBT in which patients with CFS are taught that their physical symptoms, are purely psychological and are to be ignored, despite the lack of objective improvements in persons doing PACE style CBT, a...
The view held by these authors that chronic fatigue syndrome is an illness without disease is at odds with the findings of the National Academy of Science, physiological and bio-medical researchers worldwide.
The authors do not explain how their "illness without disease" model, explains the cardinal symptoms of CFS i.e. post exertional malaise/orthostatic intolerance/sleep disturbances/ cognitive issues, all of which can be objectively monitored and measured.
Nor, do the authors explain how their "illness without disease" model explains physiological abnormalities seen in CFS, such as the reduction in the ability to generate energy on a second CPET test, carried out 24 hours after an initial test. Often called a 2-day CPET, this protocol and publications on other physiological abnormalities seen in people with CFS and can be found in the Workwell Foundation's online resources. The inability to generate energy has not been documented in healthy persons or those with any other diseases, to date and appears to be a finding that is unique to people with CFS.
Further, the article does not clarify that the form of CBT rejected by patients, is the unique form of CBT such as described in the PACE trial manuals. The PACE manuals describe a CBT in which patients with CFS are taught that their physical symptoms, are purely psychological and are to be ignored, despite the lack of objective improvements in persons doing PACE style CBT, and worsening of physiological markers when people with CFS ignore and push through symptoms. Whilst patients reject PACE style CBT, like many other chronically ill persons, people with CFS, often find the normal forms of CBT, such as acceptance and commitment therapy helpful.
Similarly, patients reject the form of GET described in the PACE manuals, which is based on the premise, that all patients are able to gradually increase their activity levels. This premise ignores the poor objective outcomes of the PACE trial, patients lived experience and the findings of exercise physiologists which find people with CFS have abnormally low anaerobic thresholds. Patients do not reject physiologically based activity/exercise management regimes. Note, however, exercise physiologists have carrying out CPET tests to determine safe activity levels often find that the patients are TOO active and need to decrease their activity levels and rest much more in order to stay under their anaerobic thresholds and avoid deterioration. Patients do not reject exercise per se but are well aware of the need to limit their activity to avoid a worsening of their symptoms and disease burden.
In summary the "illness without disease" model of CFS, appears to be based on a desire to hold onto a baseless belief that is at odds with objective scientific findings, physiological abnormalities and the usual notion of what constitutes a disease.
At the heart of Sharpe and Greco’s article lies the complaint that while cancer patients accept CBT/GET treatments for their fatigue, ME/CFS patients reject these treatments. Of course they do! ME/CFS patients have a different disease, the main feature of which makes them unable to increase exertion.
The article contains several omissions and misinterpretations:
a.) Sharpe and Greco argue strenuously that it is acceptable, even beneficial, for ME/CFS to be considered an illness-without-disease, ignoring its recognition as a disease by the WHO in 1969 and by the then Institute of Medicine in 2015 (1). They appear to expect the illness-without-disease state to be inescapable, ignoring or dismissing the serious abnormalities discovered by biomedical research (2). These have been found even before the allocation of research resources which would be commensurate with the burden and complexity the of disease. Would they have said the same about multiple sclerosis which came to be regarded as an illness-with-disease once a diagnostic technique was discovered? (I assume that the authors use the terms ME and CFS interchangeably although they do not clarify this. If this assumption is incorrect I await clarification.)
b.) Fatigue is not the sole or most important symptom of ME/CFS as implied in the paper and so a discussion based purely on this symptom is misleading. The distinguishing feature of ME/CFS is post-exertional malaise, which is not mentio...
At the heart of Sharpe and Greco’s article lies the complaint that while cancer patients accept CBT/GET treatments for their fatigue, ME/CFS patients reject these treatments. Of course they do! ME/CFS patients have a different disease, the main feature of which makes them unable to increase exertion.
The article contains several omissions and misinterpretations:
a.) Sharpe and Greco argue strenuously that it is acceptable, even beneficial, for ME/CFS to be considered an illness-without-disease, ignoring its recognition as a disease by the WHO in 1969 and by the then Institute of Medicine in 2015 (1). They appear to expect the illness-without-disease state to be inescapable, ignoring or dismissing the serious abnormalities discovered by biomedical research (2). These have been found even before the allocation of research resources which would be commensurate with the burden and complexity the of disease. Would they have said the same about multiple sclerosis which came to be regarded as an illness-with-disease once a diagnostic technique was discovered? (I assume that the authors use the terms ME and CFS interchangeably although they do not clarify this. If this assumption is incorrect I await clarification.)
b.) Fatigue is not the sole or most important symptom of ME/CFS as implied in the paper and so a discussion based purely on this symptom is misleading. The distinguishing feature of ME/CFS is post-exertional malaise, which is not mentioned by Sharpe and Greco. The then Institute of Medicine has labelled the condition Systemic Exercise Intolerance Disease in recognition of its predominance among other important symptoms such as cognitive dysfunction, orthostatic intolerance and sleep disorder (1). Post-exertional malaise occurs when exertion exceeds the patients’ energy limits and symptoms, even those not normally associated with exercise, worsen, taking an inordinate amount of time to return to what is normal for the patient. They ignore that for cancer patients CBT/GET follow medical treatment which targets their disease. Unlike for of ME/CFS, CBT/GET are not the sole treatments for cancer.
c.) They ignore the failure of CBT/GET to offer ‘useful improvement’ for ME/CFS patients. The PACE trial, testing the effectiveness of CBT and GET, is the outstanding example of this failure (3,4). Apart from the numerous methodological failures and inflated reporting of results of this widely discredited study, these types of studies have generally failed to show objectively measurable improvements. For example, in the 6 minute walking test, after 52 weeks of GET training in PACE, patients failed to walk as great a distance as patients with heart failure in other studies (5).
The authors argue that ‘the focus on disease alone does not relieve
the patient’s suffering.’ They fail to acknowledge that a focus on illness-without-disease in ME/CFS has also generally failed to relieve suffering. Their approach can cause more suffering when the undiagnosed underlying disease contraindicates the illness-based treatment, as is the case with ME/CFS.
d.) Sharpe and Greco misinterpret patients’ motivation for rejecting CBT/GET, claiming that ‘…some patients with CFS oppose illness-focused treatment for fear that the illness-without-disease paradox may imply that their illness might then be dismissed as ‘all-in-the mind.’ ‘ No. It is not a matter of philosophy for patients. Nor do they wish to become the recalcitrant activists the authors portray them to be. The motive is simple self-preservation. Patients have no choice but to try and avoid what harms them. This is rational. They know their symptoms get worse from any exertion beyond their safe limit (6). CBT/GET or any form of increased exertion not only do not produce ‘useful improvement’ for most patients as the authors repeatedly suggest, they can produce serious and long-lasting deterioration for some patients. These crucial events are not captured by the CBT/GET studies and patients are not believed when they report them.
Patients have a condition which is not well understood by medicine and it happens to be one in which additional exertion results in worsening symptoms. No elaborate psychological or philosophical speculations and distractions are needed – biomedical research is.
The aim of the paper seems to be to cement ME/CFS as an illness-without-disease. The suggested compassionate validation of illness by doctors is welcome. However, the suggestion that doctors persuade patients to re-enter the fold of medical and moral respectability through the emphasis on managing illness-without-disease implies a possible price to be paid by patients: that they accept the missed diagnosis and denial of their disease and the mostly ineffective and potentially harmful treatments of CBT/GET which follow. This can result in greater stress and harm for patients. Even if patients wanted to make this bargain, the limitations of their disease, especially post-exertional malaise, would make it impossible.
The argument provides a rationale for a science-denying approach to ME/CFS and endangers patient welfare. It is a departure from the previous model of more directly trying to correct patients’ ‘dysfunctional thinking’ and consequent ‘deconditioning’. This version of the Emperor’s New Clothes is also unacceptable.
Finally, as a mark of their faith in their proposed ‘social contract of health’ which would be ‘better suited to recognising and validating the many illnesses, for which a focus solely on disease is inadequate’, are the authors planning to recommend to governments that they pay financial benefits to ME/CFS patients on the basis of their illness-without-disease diagnosis?
References:
1. Institute of Medicine (IOM) (2015) Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington, DC: The National Academies. Available at: https:// www.ncbi.nlm.nih.gov/books/NBK274235/ pdf/Bookshelf_NBK274235.pdf
2. Me Research summary 2019 http://www.meaction.net/wp-content/uploads/2019/06/19_MEA_Revised_2019_R...
3. Wilshire C, Kindlon T, Matthees A, et al. (2017) Can patients with chronic fatigue syndrome really recover after graded exercise or cognitive behavioural therapy? A critical commentary and preliminary re-analysis of the PACE trial. Fatigue: Biomedicine, Health & Behavior 5: 43–56.
4. Vink M (2016) The PACE Trial Invalidates the Use of Cognitive Behavioral and Graded Exercise Therapy in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: A Review. J Neurol Neurobiol 2(3): doi http://dx.doi.org/10.16966/2379- 7150.124
5. Agardy S (2013) Letter to the Editor,Comments on ‘Recovery from chronic fatigue syndrome after treatments given in the PACE trial’ Psychological Medicine, 43, 1787–1792. doi:10.1017/S0033291713001256
6. Kirke KD PACE investigators’ response is misleading regarding patient survey results Journal of Health Psychology 2017, Vol. 22(9) 1168–1176
Dear Sir:
I believe that the author of the letter has misread the aim and content of the article. I nowhere implied that the phenomenon of estrangement was limited to disconnections between older parents and their adult children. However, I chose to focus on that segment because of its unique characteristics, namely, the particular suffering of older estranged parents who, in addition to experiencing the expected adversities of aging, must acknowledge that the window of opportunity for reconciliation with their children is narrowing; nor did I state or suggest that loneliness was universally experienced by older people. The article was inspired by my interest in 20th-century British history and by the many examples of estrangement I have seen over the years in my clinical practice, which is concentrated on older patients. Also, I do agree that the term "elderly" has become freighted and rather pejorative, and I no longer use it in articles or other communication. Language always matters, but perceptions of specific words change markedly over time, and I consider it regrettable that such distractions have become overvalued in academic work. These considerations remain within the narrow province of theoretical gerontologists and reside entirely outside the concerns of frontline practitioners, of which I consider myself one.
While this paper gives an eloquent description of discord between a mother and son, it is unfortunate that it attempts to characterize it as relating in particular to later life. There is no evidence in the gerontological literature that this is the case, and discord between adult children and their parent occurs and causes distress across the adult lifespan. In the single paper quoted as a reference, the investigators did not sample discord across the lifespan but only reviewed those dyads where the mother was aged 65-75 (1). This is a common failing of much gerontology, and in particular the literature on loneliness, whereby focusing on later life alone not only misses out on opportunities for considering loneliness across the lifespan but also inappropriately characterizes loneliness as a defining characteristic of later life (2).
In cultural gerontology (3), just as in the medical humanities, it is important that due critical interrogation is given to congruence between the gerontological sciences and the humanistic inquiry, and indeed to appropriate terminology such as avoidance of the term 'elderly'(4).
References
1. Gilligan M, Suitor JJ, Pillemer K. Estrangement between mothers and adult children: The role of norms and values. Journal of Marriage and Family. 2015;77:908-20.
2. O'Neill D. Loneliness. Lancet. 2011;377:812.
3. O'Neill D. Geriatric medicine and cultural gerontology. Age Ageing. 2015;44:353-5.
4....
While this paper gives an eloquent description of discord between a mother and son, it is unfortunate that it attempts to characterize it as relating in particular to later life. There is no evidence in the gerontological literature that this is the case, and discord between adult children and their parent occurs and causes distress across the adult lifespan. In the single paper quoted as a reference, the investigators did not sample discord across the lifespan but only reviewed those dyads where the mother was aged 65-75 (1). This is a common failing of much gerontology, and in particular the literature on loneliness, whereby focusing on later life alone not only misses out on opportunities for considering loneliness across the lifespan but also inappropriately characterizes loneliness as a defining characteristic of later life (2).
In cultural gerontology (3), just as in the medical humanities, it is important that due critical interrogation is given to congruence between the gerontological sciences and the humanistic inquiry, and indeed to appropriate terminology such as avoidance of the term 'elderly'(4).
References
1. Gilligan M, Suitor JJ, Pillemer K. Estrangement between mothers and adult children: The role of norms and values. Journal of Marriage and Family. 2015;77:908-20.
2. O'Neill D. Loneliness. Lancet. 2011;377:812.
3. O'Neill D. Geriatric medicine and cultural gerontology. Age Ageing. 2015;44:353-5.
4. Falconer M, O'Neill D. Personal views: out with “the old,” elderly, and aged. BMJ 2007;334:316.
As a 5th year medical student of Somali origin with a longstanding interest in the intersection of culture and illness, I particularly enjoyed the Editor’s Choice article entitled ‘Adaptive frameworks of chronic pain: daily remakings of pain and care at a Somali refugee women’s health centre’ by Kari Campeau. I was especially impressed by the way in which Campeau captured how one’s distinct racial and religious character can impact the way chronic pain is understood and responded to by one’s self and by others.
Particularly disheartening was Campeau’s analysis of how these women often suffer exclusionary sentiment within medical spaces and are consequently less inclined to seek medical treatment for their pain. Understandably, for the women in question, visiting the doctor confers an emotional and communicative labour on top of a pre-existing medical complaint, and ultimately may not be ‘worth it’. The philosopher Miranda Fricker describes a ‘testimonial injustice’, which is a form of epistemic prejudice whereby for marginalised people, there is a diminished level of credibility applied to their word. From Campeau’s research, it appears this type of prejudice may have been at play when her participants had interacted with clinicians.
As to Campeau’s exploration of the intersection between religion and pain, I would disagree that pain is understood through a wholly fatalistic lens among this cohort. Somalis, who are largely Muslim, believe not only in pre-orda...
As a 5th year medical student of Somali origin with a longstanding interest in the intersection of culture and illness, I particularly enjoyed the Editor’s Choice article entitled ‘Adaptive frameworks of chronic pain: daily remakings of pain and care at a Somali refugee women’s health centre’ by Kari Campeau. I was especially impressed by the way in which Campeau captured how one’s distinct racial and religious character can impact the way chronic pain is understood and responded to by one’s self and by others.
Particularly disheartening was Campeau’s analysis of how these women often suffer exclusionary sentiment within medical spaces and are consequently less inclined to seek medical treatment for their pain. Understandably, for the women in question, visiting the doctor confers an emotional and communicative labour on top of a pre-existing medical complaint, and ultimately may not be ‘worth it’. The philosopher Miranda Fricker describes a ‘testimonial injustice’, which is a form of epistemic prejudice whereby for marginalised people, there is a diminished level of credibility applied to their word. From Campeau’s research, it appears this type of prejudice may have been at play when her participants had interacted with clinicians.
As to Campeau’s exploration of the intersection between religion and pain, I would disagree that pain is understood through a wholly fatalistic lens among this cohort. Somalis, who are largely Muslim, believe not only in pre-ordainment but also that it is necessary to “Treat sickness, for Allah has not created any disease except that He has also created the cure, except for one disease… [old age]” as stated in the Hadith (Islamic scripture). This might serve to elucidate the seeming dichotomy between the women who Campeau refers to as ‘denying [their] individual efficacy in the face of external control, [but who] also actively sought medical resource’.
As is true for all ethnic minorities in a Western context, Somali women inherently diverge from hegemonic norms and inhabit racialisable and orientalisable bodies. I think it would be fascinating to explore whether the racism and prejudice that are endemic to the experiences of racialisable people, can be also implicated in producing chronic pain as well as impeding the efforts made to treat it.
Kristeva and her colleagues argue for a bilateral dialogue between the culture and the scientific Humanities and putatively objective Natural Sciences. As they are strikingly tracing back the Humanities' supplementary character for a dominant biomedical perspective of health and sickness, they establish decisive and inspiring landmarks to realigning the realm of Medical Humanities which needs to be continued. However, it remains unclear which concept of culture is applied and how to equate it to the Humanities as joined opposite of Science. Furthermore, when it comes to criticizing the monopole of evidence-based research in Natural Science, we should consider that it is not this approach that "runs the risk of exalting biology into an ‘essential Being’ and a normative stasis " (p. 3), but as well and in particular the interpretative act of clinicians and medecins which is worth having a deeper look in (as did Zimmermann 2016; Jurecic 2012; Hunter 1991). And, on the opposite, it would be interesting to focus not only on the perspective of the "experts" but as well on the patients' impact on co-creating the array between health and sickness. It would be beneficial to add this experiential dimension of everyday life to the discussion. At last, this well informed polemic offers thorough starting points for further discussion and gives new insights scholars have already been waiting for for so long.
Thank you to the authors for writing such an insightful article.
In addition to the comfort offered to friends and family of donors’, the act of writing tributes enables reflection from students about their experiences and relationship with their cadaver, which is alluded to by the authors.
I imagine for first year students this process is both cathartic and valuable in acquiring closure after forming such an intense and unparalleled relationship with their donor. At Norwich Medical School, where I am currently studying, anatomy dissections occur regularly throughout all five years of the course but with particularly focussed study occurring in the first and second years. I remember vividly the confusing emotions I would have after saying goodbye to each year’s donated body. A strange sense of sadness and loss, very similar to those of the Cambridge students but also gratitude towards the donor, I was proud of their decision to donate their body and pleased that one of their last wishes (to donate their body to medical education) had been fulfilled.
The anatomy department at Norwich Medical School, similarly to Cambridge’s, encourages each of their dissection groups to write tributes to be read at a memorial service held each year, to which family and friends of the donors are invited, as well as a selection of students. Other members of my dissection group always took this mantle but I wonder if in hindsight group reflection and write-up would have...
Show MoreThere is at least one basic mistake in the article by Sharpe and Greco: CBT and GET do not successfully treat ME/CFS for the majority of patients. The research supporting CBT and GET has been discredited by a large number of academics and scientists1. Patient surveys indicate that pacing is the most effective management for ME/CFS2. Therefore, the arguments about paradox and morality become meaningless.
References:
1. Vink M (2016) The PACE Trial Invalidates the Use of Cognitive Behavioral and Graded Exercise Therapy in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: A Review. J Neurol Neurobiol 2(3): doi http://dx.doi.org/10.16966/2379- 7150.124
2. Kirke KD PACE investigators’ response is misleading regarding patient survey results Journal of Health Psychology 2017, Vol. 22(9) 1168–1176
Sharp & Greco state: "This new approach assumes that the reality of illness has a complex and indeterminate character".
If by this they mean that the cause of any given illness cannot in principle be determined - as I suspect they are - then it is clear that they are abandoning the scientific enterprise. We ask Sharp and Greco: do they say illness is an effect? If they do then ipso facto they concede it has a cause or causes, and it is the task of science, in the broadest sense, to elucidate those causes.
And if they say illness is not an effect then they implicitly deny causality anywhere in the universe, which is obviously fatal to science. Furthermore, in so doing they are guilty of the ultimate hubris, that of claiming omniscience, since only an omniscient being could could assert that illness has no cause.
Alternatively, perhaps Sharp and Greco would say that illness is an effect but we cannot know the cause. Yet this is self-contradictory, because in order to know that illness is an effect they would have to know something about its cause - otherwise, how could they know that it is indeed an effect?
The view held by these authors that chronic fatigue syndrome is an illness without disease is at odds with the findings of the National Academy of Science, physiological and bio-medical researchers worldwide.
Show MoreThe authors do not explain how their "illness without disease" model, explains the cardinal symptoms of CFS i.e. post exertional malaise/orthostatic intolerance/sleep disturbances/ cognitive issues, all of which can be objectively monitored and measured.
Nor, do the authors explain how their "illness without disease" model explains physiological abnormalities seen in CFS, such as the reduction in the ability to generate energy on a second CPET test, carried out 24 hours after an initial test. Often called a 2-day CPET, this protocol and publications on other physiological abnormalities seen in people with CFS and can be found in the Workwell Foundation's online resources. The inability to generate energy has not been documented in healthy persons or those with any other diseases, to date and appears to be a finding that is unique to people with CFS.
Further, the article does not clarify that the form of CBT rejected by patients, is the unique form of CBT such as described in the PACE trial manuals. The PACE manuals describe a CBT in which patients with CFS are taught that their physical symptoms, are purely psychological and are to be ignored, despite the lack of objective improvements in persons doing PACE style CBT, a...
At the heart of Sharpe and Greco’s article lies the complaint that while cancer patients accept CBT/GET treatments for their fatigue, ME/CFS patients reject these treatments. Of course they do! ME/CFS patients have a different disease, the main feature of which makes them unable to increase exertion.
The article contains several omissions and misinterpretations:
a.) Sharpe and Greco argue strenuously that it is acceptable, even beneficial, for ME/CFS to be considered an illness-without-disease, ignoring its recognition as a disease by the WHO in 1969 and by the then Institute of Medicine in 2015 (1). They appear to expect the illness-without-disease state to be inescapable, ignoring or dismissing the serious abnormalities discovered by biomedical research (2). These have been found even before the allocation of research resources which would be commensurate with the burden and complexity the of disease. Would they have said the same about multiple sclerosis which came to be regarded as an illness-with-disease once a diagnostic technique was discovered? (I assume that the authors use the terms ME and CFS interchangeably although they do not clarify this. If this assumption is incorrect I await clarification.)
b.) Fatigue is not the sole or most important symptom of ME/CFS as implied in the paper and so a discussion based purely on this symptom is misleading. The distinguishing feature of ME/CFS is post-exertional malaise, which is not mentio...
Show MoreDear Sir:
I believe that the author of the letter has misread the aim and content of the article. I nowhere implied that the phenomenon of estrangement was limited to disconnections between older parents and their adult children. However, I chose to focus on that segment because of its unique characteristics, namely, the particular suffering of older estranged parents who, in addition to experiencing the expected adversities of aging, must acknowledge that the window of opportunity for reconciliation with their children is narrowing; nor did I state or suggest that loneliness was universally experienced by older people. The article was inspired by my interest in 20th-century British history and by the many examples of estrangement I have seen over the years in my clinical practice, which is concentrated on older patients. Also, I do agree that the term "elderly" has become freighted and rather pejorative, and I no longer use it in articles or other communication. Language always matters, but perceptions of specific words change markedly over time, and I consider it regrettable that such distractions have become overvalued in academic work. These considerations remain within the narrow province of theoretical gerontologists and reside entirely outside the concerns of frontline practitioners, of which I consider myself one.
While this paper gives an eloquent description of discord between a mother and son, it is unfortunate that it attempts to characterize it as relating in particular to later life. There is no evidence in the gerontological literature that this is the case, and discord between adult children and their parent occurs and causes distress across the adult lifespan. In the single paper quoted as a reference, the investigators did not sample discord across the lifespan but only reviewed those dyads where the mother was aged 65-75 (1). This is a common failing of much gerontology, and in particular the literature on loneliness, whereby focusing on later life alone not only misses out on opportunities for considering loneliness across the lifespan but also inappropriately characterizes loneliness as a defining characteristic of later life (2).
In cultural gerontology (3), just as in the medical humanities, it is important that due critical interrogation is given to congruence between the gerontological sciences and the humanistic inquiry, and indeed to appropriate terminology such as avoidance of the term 'elderly'(4).
References
Show More1. Gilligan M, Suitor JJ, Pillemer K. Estrangement between mothers and adult children: The role of norms and values. Journal of Marriage and Family. 2015;77:908-20.
2. O'Neill D. Loneliness. Lancet. 2011;377:812.
3. O'Neill D. Geriatric medicine and cultural gerontology. Age Ageing. 2015;44:353-5.
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As a 5th year medical student of Somali origin with a longstanding interest in the intersection of culture and illness, I particularly enjoyed the Editor’s Choice article entitled ‘Adaptive frameworks of chronic pain: daily remakings of pain and care at a Somali refugee women’s health centre’ by Kari Campeau. I was especially impressed by the way in which Campeau captured how one’s distinct racial and religious character can impact the way chronic pain is understood and responded to by one’s self and by others.
Particularly disheartening was Campeau’s analysis of how these women often suffer exclusionary sentiment within medical spaces and are consequently less inclined to seek medical treatment for their pain. Understandably, for the women in question, visiting the doctor confers an emotional and communicative labour on top of a pre-existing medical complaint, and ultimately may not be ‘worth it’. The philosopher Miranda Fricker describes a ‘testimonial injustice’, which is a form of epistemic prejudice whereby for marginalised people, there is a diminished level of credibility applied to their word. From Campeau’s research, it appears this type of prejudice may have been at play when her participants had interacted with clinicians.
As to Campeau’s exploration of the intersection between religion and pain, I would disagree that pain is understood through a wholly fatalistic lens among this cohort. Somalis, who are largely Muslim, believe not only in pre-orda...
Show MoreKristeva and her colleagues argue for a bilateral dialogue between the culture and the scientific Humanities and putatively objective Natural Sciences. As they are strikingly tracing back the Humanities' supplementary character for a dominant biomedical perspective of health and sickness, they establish decisive and inspiring landmarks to realigning the realm of Medical Humanities which needs to be continued. However, it remains unclear which concept of culture is applied and how to equate it to the Humanities as joined opposite of Science. Furthermore, when it comes to criticizing the monopole of evidence-based research in Natural Science, we should consider that it is not this approach that "runs the risk of exalting biology into an ‘essential Being’ and a normative stasis " (p. 3), but as well and in particular the interpretative act of clinicians and medecins which is worth having a deeper look in (as did Zimmermann 2016; Jurecic 2012; Hunter 1991). And, on the opposite, it would be interesting to focus not only on the perspective of the "experts" but as well on the patients' impact on co-creating the array between health and sickness. It would be beneficial to add this experiential dimension of everyday life to the discussion. At last, this well informed polemic offers thorough starting points for further discussion and gives new insights scholars have already been waiting for for so long.