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.
Pekka Louhiala argues, "there is no alternative medicine" because "it escapes a meaningful definition, and 'alternative medicine' cannot be clearly differentiated from conventional medicine" [1]. I do not consider that his arguments are valid.
Louhiala does not mention the definitions that have been proposed for "alternative medicine". For example, Eisenberg defined alternative medical therapies as "interventions neither taught widely in medical schools nor generally available in US hospitals" [2]. Cochrane collaboration defined: "Complementary and alternative medicine (CAM) is a broad domain of healing resources that encompasses all health systems, modalities, and practices and their accompanying theories and beliefs, other than those intrinsic to the politically dominant health system of a particular society or culture in a given historical period. CAM includes all such practices and ideas self-defined by their users as preventing or treating illness or promoting health and well-being. Boundaries within CAM and between the CAM domain and that of the dominant system are not always sharp or fixed" [3]. These definitions are not exhaustive, but they capture what I think is the most essential.
These definitions consider that the relevant factor for setting up the boundary around alternative medicine is by the lack of social acceptance within mainstream medicine. Thus, alternative medicine consists of i...
Pekka Louhiala argues, "there is no alternative medicine" because "it escapes a meaningful definition, and 'alternative medicine' cannot be clearly differentiated from conventional medicine" [1]. I do not consider that his arguments are valid.
Louhiala does not mention the definitions that have been proposed for "alternative medicine". For example, Eisenberg defined alternative medical therapies as "interventions neither taught widely in medical schools nor generally available in US hospitals" [2]. Cochrane collaboration defined: "Complementary and alternative medicine (CAM) is a broad domain of healing resources that encompasses all health systems, modalities, and practices and their accompanying theories and beliefs, other than those intrinsic to the politically dominant health system of a particular society or culture in a given historical period. CAM includes all such practices and ideas self-defined by their users as preventing or treating illness or promoting health and well-being. Boundaries within CAM and between the CAM domain and that of the dominant system are not always sharp or fixed" [3]. These definitions are not exhaustive, but they capture what I think is the most essential.
These definitions consider that the relevant factor for setting up the boundary around alternative medicine is by the lack of social acceptance within mainstream medicine. Thus, alternative medicine consists of interventions that are outside of the "conventional" or "medical school" medicine. The definitions above do not consider whether a treatment is effective or not. Effectiveness is located on a different dimension and is not part of a relevant definition for alternative medicine.
Louhiala formulated numerous arguments that do not teach us anything about the usefulness of the concept of "alternative medicine". Although I agree that often "modern medicine is much more varied in its approaches than the propagandists for alternative medicine usually imply", this statement does not imply any conclusions about the concept of "alternative medicine".
I do not agree with Louhiala's statement "alternative medicine means that the other option is rejected". For example, some of my own patients describe that they use forms of alternative therapies, but they do not reject me therefore.
I disagree also with the statement that "if a genuine alternative medicine did exist, it should produce results that are similar to those of ordinary medicine". There is great treatment variation within mainstream medicine, and there is no uniform "treatment result" to which the results of alternative therapists might be compared unambiguously. Furthermore, when we accept the large treatment variation within mainstream medicine, why should we not accept variation between mainstream medicine and alternative medicine. This issue is not relevant to the question whether the concept of "alternative medicine" is useful.
I agree with the statement "alternative medicine cannot be clearly differentiated from conventional medicine". However, there are numerous cases where the border between neighboring concepts is fuzzy. Internal medicine cannot be clearly differentiated from general practice medicine (e.g. both treat hypertension). Children cannot be clearly differentiated from adults (e.g. teenagers are biologically adults but psychologically children). However, the lack of a clear differentiation does not imply that "internal medicine" or "child" are useless concepts.
Louhiala states, "bundling all the so called alternative therapies under one heading is misleading. It is hard to see common features between, say, healing using prayer and healing using megadoses of vitamins." If alternative medicine is defined by the lack of social acceptance as described above, that provides an unambiguous justification to put prayer and megavitamins under the same heading. Furthermore, there is great variation within the mainstream medicine from surgery to pharmacology to psychiatry. If Louhiala's argument is valid, we should not bundle such different methods under the one heading of "medical school medicine".
While Louhiala criticizes the vague definition of "alternative medicine", he does not consider the options to define, for example, "homeopathy". When I was young, I studied biochemistry and got a PhD degree. As a biochemist, I defined homeopathy as "diluting a substance to such an extent that there are no molecules left in a spoonful". Thereafter I studied medicine.
When I started to work as a GP, I realized that there is a fundamentally different second definition for homeopathy: "a person goes to a homeopath and stays there for some time and then leaves". If we ask whether homeopathy is beneficial for a patient, we should first define what we mean by "homeopathy". This was not done by Louhiala.
In catholic countries, sometimes people go to see a priest for a confession. I believe that the confession often decreases the anxiety of a person, and in that respect, it can lead to positive health effects. This health benefit has nothing to do whether we think that there is evidence for God. Similarly, homeopathy as an encounter can be beneficial for a patient because visiting a homeopath is much more than biochemistry.
While working as a GP, I have realized that a large part of the positive health effects that I am generating on my patients are caused by listening and speaking. Why should we assume that a priest or a homeopath is incompetent at such an activity? I have seen many physicians who are poor in their communication with patients. Compared with them, an average priest or homeopath may generate greater improvements in health if the major problems of the patient are anxiety and depression. On average, alternative therapists may have better bedside manners than physicians [4].
The purpose of my commentary is not to increase the social acceptability of alternative medicine. I point out that the lack of social acceptability seems to be a reasonable basis for defining alternative medicine. I do not hope that the use of homeopathy increases; instead, I hope much the contrary. Nevertheless, the question about, for example, homeopathy is much more complex than whether it is absurd from the biochemical point of view. I think that it is much more fruitful to contemplate on the nature of alternative medicine [2-4], instead of trying to argue that such a field does not exist.
In the paper “The art of medicine: arts-based training in observation and mindfulness for fostering the empathic response in medical residents” Dr. Zazulak and colleagues address the role of an arts-based curriculum as an instrument to increase empathy and stimulate mindfulness and well-being in medical residents (1). I would like to extend the discussion and include cinema as a powerful tool able to not only provide a meaningful educational experience but also improve residents’ empathy and decrease exhaustion.
Little has been studied and although reported in a few sporadic papers, there is no clear evidence that the use of arts can improve residents’ awareness and sensitivity (2-4). Regardless, there is a current trend of increased theoretical knowledge and objectivity among doctors suffering from a dogmatic approach that lacks empathy and emotion(5). As clearly defined by the authors in an era of increasing burnout among residents, films can not only educate and increase empathy but also serve as a social gathering as well as a way of having fun and relaxing(6). They not only offer an opportunity to face the meaning of being a doctor but also to arouse emotions yet hidden(5, 7). From a personal perspective I can be transported to a reality not clearly seen behind the desk and white coat and other perspectives now appear more tangible; I can see families suffering at home while taking care of their loved ones (Amour), the relation between nurses and paralyzed pati...
In the paper “The art of medicine: arts-based training in observation and mindfulness for fostering the empathic response in medical residents” Dr. Zazulak and colleagues address the role of an arts-based curriculum as an instrument to increase empathy and stimulate mindfulness and well-being in medical residents (1). I would like to extend the discussion and include cinema as a powerful tool able to not only provide a meaningful educational experience but also improve residents’ empathy and decrease exhaustion.
Little has been studied and although reported in a few sporadic papers, there is no clear evidence that the use of arts can improve residents’ awareness and sensitivity (2-4). Regardless, there is a current trend of increased theoretical knowledge and objectivity among doctors suffering from a dogmatic approach that lacks empathy and emotion(5). As clearly defined by the authors in an era of increasing burnout among residents, films can not only educate and increase empathy but also serve as a social gathering as well as a way of having fun and relaxing(6). They not only offer an opportunity to face the meaning of being a doctor but also to arouse emotions yet hidden(5, 7). From a personal perspective I can be transported to a reality not clearly seen behind the desk and white coat and other perspectives now appear more tangible; I can see families suffering at home while taking care of their loved ones (Amour), the relation between nurses and paralyzed patients (The Intouchables), and sometimes I can even see fixedly through the eyes of a quadriplegic restricted to a wheel chair (The diving Bell and the butterfly).
As a junior neurology resident at the University of Miami/Jackson Memorial Hospital, the third largest neurology residency program in the US, I have plans to organize frequent movie clubs for faculty, residents and medical students. In addition to the classic medical education, a complementary approach focused on humanities and art may improve resident’s empathy and help them unbury subjects hidden by the overuse of technical medical issues.
References:
1. Zazulak J, Sanaee M, Frolic A, Knibb N, Tesluk E, Hughes E, et al. The art of medicine: arts-based training in observation and mindfulness for fostering the empathic response in medical residents. Med Humanit. 2017 Apr 27;
2. Wershof Schwartz A, Abramson JS, Wojnowich I, Accordino R, Ronan EJ, Rifkin MR. Evaluating the impact of the humanities in medical education. Mt Sinai J Med N Y. 2009 Aug;76(4):372–80.
3. Wolters FJ, Wijnen-Meijer M. The role of poetry and prose in medical education: the pen as mighty as the scalpel? Perspect Med Educ. 2012 Mar;1(1):43–50.
4. Skelton JR, Macleod JA, Thomas CP. Teaching literature and medicine to medical students, part II: why literature and medicine? Lancet Lond Engl. 2000 Dec 9;356(9246):2001–3.
5. Gramaglia C, Jona A, Imperatori F, Torre E, Zeppegno P. Cinema in the training of psychiatry residents: focus on helping relationships. BMC Med Educ. 2013 Jun 21;13:90.
6. Hassan A, Wijdicks EFM. The Mayo Clinic experience. Pract Neurol. 2014 Feb;14(1):68–9.
7. Izod J. Active imagination and the analysis of film. J Anal Psychol. 2000 Apr;45(2):267-285-293.
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.
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.
4....
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.
Pekka Louhiala argues, "there is no alternative medicine" because "it escapes a meaningful definition, and 'alternative medicine' cannot be clearly differentiated from conventional medicine" [1]. I do not consider that his arguments are valid.
Louhiala does not mention the definitions that have been proposed for "alternative medicine". For example, Eisenberg defined alternative medical therapies as "interventions neither taught widely in medical schools nor generally available in US hospitals" [2]. Cochrane collaboration defined: "Complementary and alternative medicine (CAM) is a broad domain of healing resources that encompasses all health systems, modalities, and practices and their accompanying theories and beliefs, other than those intrinsic to the politically dominant health system of a particular society or culture in a given historical period. CAM includes all such practices and ideas self-defined by their users as preventing or treating illness or promoting health and well-being. Boundaries within CAM and between the CAM domain and that of the dominant system are not always sharp or fixed" [3]. These definitions are not exhaustive, but they capture what I think is the most essential.
These definitions consider that the relevant factor for setting up the boundary around alternative medicine is by the lack of social acceptance within mainstream medicine. Thus, alternative medicine consists of i...
Show MoreIn the paper “The art of medicine: arts-based training in observation and mindfulness for fostering the empathic response in medical residents” Dr. Zazulak and colleagues address the role of an arts-based curriculum as an instrument to increase empathy and stimulate mindfulness and well-being in medical residents (1). I would like to extend the discussion and include cinema as a powerful tool able to not only provide a meaningful educational experience but also improve residents’ empathy and decrease exhaustion.
Show MoreLittle has been studied and although reported in a few sporadic papers, there is no clear evidence that the use of arts can improve residents’ awareness and sensitivity (2-4). Regardless, there is a current trend of increased theoretical knowledge and objectivity among doctors suffering from a dogmatic approach that lacks empathy and emotion(5). As clearly defined by the authors in an era of increasing burnout among residents, films can not only educate and increase empathy but also serve as a social gathering as well as a way of having fun and relaxing(6). They not only offer an opportunity to face the meaning of being a doctor but also to arouse emotions yet hidden(5, 7). From a personal perspective I can be transported to a reality not clearly seen behind the desk and white coat and other perspectives now appear more tangible; I can see families suffering at home while taking care of their loved ones (Amour), the relation between nurses and paralyzed pati...
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