I offer the following comments on the ‘health care culture’ surrounding ME and some remarks about my personal experience as to how widely the harms spread, even beyond ME patients. I apologise for the length.
First, it is not for the patient to prove they are ill. It is for them to truthfully describe what they are experiencing and the effects of their symptoms on them to the best of their ability. It is also not the patients responsibility to prove a clinical approach/ therapy or activity may be harmful to them, but it is the Patients responsibility to decide which clinical approach, therapy, activity and researchers/practitioners they choose to engage with.
The Researcher/Clinician/therapist is required by law in the UK with regard to the obtaining of informed consent, to make the Patient aware of all reasonable explanations for their illhealth and the risks and benefits of engaging with any described clinical approach/treatment/activity or therapies. A Researcher, clinician or therapist is required not to pressure the patient to choose any particular clinical or therapeutic course/activity but respect the patients choice. The law also makes it quite clear that only the individual patient can decide the balance of risks/benefits associated with any clinical/therapeutic approach or activity which is acceptable to them.
Any cursory glance at the medical/caring professions approach to caring for ME patients in the last several decades will quickly show that the dominant culture has been to not trust the patients insights to their ill health and to subject the patient to the practitioners own choice of action, which basically can be summarised as asking the patient to ignore their symptoms and carry on as usual. When this proves unsuccessful they stigmatise and blame the patient for not cooperating, although very many have cooperated to their detriment suffering a worsening in the severity of their disability as a result. These harms experienced by the patient are in this ‘culture’ discounted as not being real.
This ‘culture’ ignores the law and also professional ethics, by trying to impose it’s chosen clinical/therapeutic/ activity approach to ME on patients by not explaining all medical views of ME other than their own, denying the patients right to choose and if they reject the clinicians views/ therapies or clinical investigations stigmatise them for that rejection.
An unrecognised harm or at least one not often acknowledged is that of the loss of trust between all the parties to the health care agreement. Kitty’s comment quoted above reflects this loss of trust amongst the vast majority of ME patients who do their best to not engage with health professionals, who consistently fail to respect their rights to choice with regard to the clinical view of ME or with those who do not respect the patients expertise in describing how their illness effects them and importantly what works best and what does not for them.
In my own case I cared for my late wife who developed ME in the mid 1980’s until her death a few years ago. Throughout her life with ME we found engagement with most health professionals as a result of this dominant ‘Clinical Culture’ should be avoided at all costs so as to protect the quality of life painstakingly achieved by learning to live within the confines of the illness, accepting the inevitable downturns frequently experienced through uncontrollable life circumstances.
My wife was first moderately affected, becoming very Severely affected as a result of this dominant health profession ‘culture’ of not believing/trusting the patients experience of their illness. I coped well with caring for her for well over a decade whilst also holding down a very responsible full time job. Eventually however this ‘clinical culture’ of not believing the patient or respecting their rights to choice, impacted my health as my Employer was not sympathetic on advice from their Medical advisers to making adjustments to allow for my caring duties for someone with severe ME. In short, an Independent Medical Opinion concluded that my Employers inability to respect the need for me to make adjustments to my life/work balance as a result of having to care for my wife meant that I could no longer trust my employer with the safety of my own health and could no longer work in any capacity for them. The Report also concluded my health had already been damaged such that my capacity for work with any other employer was also diminished. I received very substantial financial compensation as a result. I do not regard the outcome as a win for me, but a major loss of health to myself with the Employer suffering considerable adverse reputational and financial damage. The harm from this Health Care Professional ‘Culture’ around ME damaged us both (and we were not ME patients).
As to getting an apology for the harms and gaslighting we experienced, neither my late wife or I ever received an apology from those responsible for this ‘culture’ around the health care professions approach to ME. We did find individual medics and therapist’s who did respect her ability to articulate her experience of ME and her right to choose what she could and could not undertake. Those very few took some finding but were our saviours as were other patients and advocates found on Forums such as this one.
First work with those who show respect for your knowledge of ME and its effects on you. Second try and educate those who don’t and if they are badly resistant, move on. Finding the first and doing the second is as difficult as coping with the illness itself, but the best choice for all concerned in the longer term as it will eventually change the balance of that ‘culture’ for the better.
You all do good work in support of a lot of others who do not appear in these threads and even don’t have the illness but, like me, are associated with it in some way by being a carer or a friend/advocate.
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