Peter T
Senior Member (Voting Rights)
Why this obsession about ‘hope’, which on the basis of our current knowledge is unjustified hope or even false hope?
I remember when medicine had the same obsession about not informing people they had terminal illnesses because it would take away their hope. I remember the mess around my father’s cancer diagnosis some forty plus years ago, when no one in the family knew what the other knew and nobody talked about what was likely to happen. The hospice movement had to struggle for years against this irrational obsession about false hope. I remember when I started work around the same time how patients with MND (ALS) only started to get appropriate and proactive management once the reality of their condition was acknowledged, but there were then still neurologists who believed that their patient should not be told their diagnosis, which meant they had much messier and inefficient care and a much poorer quality of life. The consultants may not have been able to deal with the emotional challenge of admitting there were no curative treatments but this stood in the way of timely and effective management of the condition.
Are there many or indeed any people with ME/CFS who rationally believe that there are currently no curative treatments for their underlying condition who consequently give up on doing anything? My experience is that even the very severe are constantly pushing (gently please) at the upper limits of their activity. Having a fluctuating condition, my lack of hope in an immanent magic cure has not stopped me doing what I can, which in periods of remission included traveling to Tibet, to Antarctica and Japan, and equally included trying to at least step out of my front door most days when the rest of my time was spent horizontal in a darkened room living on cold food straight from the can.
Six weeks in South America or eating in a world class restaurant with views of Mount Fuji, did not inoculate me against subsequent relapse, when these ‘hope’ merchants’ beliefs ought to mean that my ‘false beliefs’ or ‘conditioned illness behaviour’ should have been shattered by such activity.
When will these pedlars of hopium actually address their own false beliefs that inhibit appropriate clinical care which for the very severe is literally killing them? As we have said before this obsession with hope is the equivalent of advising people with debt issues to try to resolve their financial difficulties in a casino or a betting shop.
I remember when medicine had the same obsession about not informing people they had terminal illnesses because it would take away their hope. I remember the mess around my father’s cancer diagnosis some forty plus years ago, when no one in the family knew what the other knew and nobody talked about what was likely to happen. The hospice movement had to struggle for years against this irrational obsession about false hope. I remember when I started work around the same time how patients with MND (ALS) only started to get appropriate and proactive management once the reality of their condition was acknowledged, but there were then still neurologists who believed that their patient should not be told their diagnosis, which meant they had much messier and inefficient care and a much poorer quality of life. The consultants may not have been able to deal with the emotional challenge of admitting there were no curative treatments but this stood in the way of timely and effective management of the condition.
Are there many or indeed any people with ME/CFS who rationally believe that there are currently no curative treatments for their underlying condition who consequently give up on doing anything? My experience is that even the very severe are constantly pushing (gently please) at the upper limits of their activity. Having a fluctuating condition, my lack of hope in an immanent magic cure has not stopped me doing what I can, which in periods of remission included traveling to Tibet, to Antarctica and Japan, and equally included trying to at least step out of my front door most days when the rest of my time was spent horizontal in a darkened room living on cold food straight from the can.
Six weeks in South America or eating in a world class restaurant with views of Mount Fuji, did not inoculate me against subsequent relapse, when these ‘hope’ merchants’ beliefs ought to mean that my ‘false beliefs’ or ‘conditioned illness behaviour’ should have been shattered by such activity.
When will these pedlars of hopium actually address their own false beliefs that inhibit appropriate clinical care which for the very severe is literally killing them? As we have said before this obsession with hope is the equivalent of advising people with debt issues to try to resolve their financial difficulties in a casino or a betting shop.
