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• Philosophy misses the point
  Anne Kennedy
  Published on: 6 December 2019
• Sharp & Greco want us to abandon science
  Michael N Dyson
  Published on: 19 July 2019
• Science, physiology and clarification of misleading terms
  Adi C Wood
  Published on: 19 July 2019
• More science and less philosophy is needed
  Susanna Agardy
  Published on: 9 July 2019

• Published on: 6 December 2019

  Philosophy misses the point

  • Anne Kennedy, Retired No interests to declare

  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

  Conflict of Interest:
  None declared.

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• Published on: 19 July 2019

  Sharp & Greco want us to abandon science

  • Michael N Dyson, Computer Technician None

  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?

  Conflict of Interest:
  None declared.

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• Published on: 19 July 2019

  Science, physiology and clarification of misleading terms

  • Adi C Wood, Scientist ME

  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...

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  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.

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  Conflict of Interest:
  None declared.

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• Published on: 9 July 2019

  More science and less philosophy is needed

  • Susanna Agardy, Retired due to ME/CFS Nil

  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...

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  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

  Susanna Agardy
  Australia

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  Conflict of Interest:
  None declared.

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