Recent research by prominent biopsychosocial researchers Crawley et al is prompting furious backlash amongst patients arguing for better care and the validity of ME/CFS. Some patients have posted about the ‘lightening process’ saying ”Don’t beckon lightning and invite it in for tea; it will burn your house to the ground with you inside until you’re nothing but ashes.’ It certainly seems true that the expectation to exercise and ‘push through’ is responsible for vast reported harm by patients.
What may be equally as important to patient outcomes is the presence or absence of true support, a feeling of safety and security, emotionally and biologically, at the individual, familial and societal levels. This is rarely the ME/CFS patient experience.
Researcher and author Lissa Rankin talks about support as a crucial element to initiate self-healing, with physical health the most fragile element which is dependant on more than good diet and exercise.
Relationships matter to health. Strong social network reduces heart disease. Married’s are twice as likely to be long-lived. I’ve written at length on the aetiology of relationship dysfunction stemming from the inability to form secure attachments, and theoretically this could be extended to a larger sense of societal and cultural safety, such as (for example) not being expected to work when it causes suffering and worsening, or to not be dismissed, blamed, ridiculed or otherwise abused by the medical establishment.
‘Stephen Porges, Ph.D., a pioneer in the field of neuroscience and one of the world’s leading experts on the autonomic nervous system, confirms that we have an imperative for safety deeply wired into our minds and bodies.
Porges’ Polyvagal Theory describes how our autonomic nervous system mediates safety, trust, and intimacy through a subsystem he calls the social engagement system. Our brain is constantly detecting through our senses whether we are in a situation that is safe, dangerous, or life threatening’
Lissa rankin talks about loneliness, overwork, lack of spirituality or negative attitudes as affecting physical health. All of this is perceived as the brain and communicated via hormones and neurotransmitters as a threat, as something wrong. The amygdala turns on hypothalamus, to both the pituitary and the adrenals for cortisol, norepinephrine & epinephrine for a sympathetic (mal)adaptive stress response. Relaxation from a sense of safety, on the other hand, triggers oxytocin, dopamine, nitric oxide, endorphins—which are natural, healing, self repair mechanisms. Meditation, creativity, massage, yoga, laughter, sex and time with animals can trigger this response.
If LP is working for some ME/CFS patients, this is likely (apart from issues with overdiagnosis) to be due to a placebo affect triggering the parasympathetic system response described above. What is most problematic however, is when this is used in a manipulative fashion, for example, to reduce costs for insurance companies, or is abusive as it is accompanied by denial of the existence of ME/CFS as a biological illness, dismissal of patients realities (gaslighting) or used as a justification for the denial of medical and social support (neglect). In this context, it is not safe.
As with any serious and incurable illness, spontaneous remission is possible, and is proof that nature is better than all of men’s medical knowledge and technology—but this cannot just be expected of patients, especially in a hostile environment where they are unsupported by doctors, policy makers and society at large. It’s one thing to empower and support patients to heal themselves, it’s another entirely to demand and expect it while denying rest, medical care and social security.
‘I believe that just as there are no incurable illnesses, there are no incurable systems. But it’s gonna take all of us, needing to open our hearts and our minds, and bring care back to healthcare.’