One thing that continues to puzzle me is that, unless I am mistaken, not a single ME physician regularly uses S4ME. I have learnt almost everything about the illness, including the background research, from following the forum. When I was involved in RA and lupus I followed a lupus forum in the same way (there weren't any RA forums at least in those days).
Repeatedly I see physicians making public statements as if they have only a passing knowledge of what has really been going on. If patients are interested enough to have an in depth knowledge of their illness, why don't the medics even try!!
Thanks for sharing.
This lack of curiosity and engagement baffled me for a long time. It infuriated me at times too. I was incensed by the flippant attitude of the Infectious Diseases doctors at Liverpool in dishing out 'advice' about suggesting I try CBT/GET. It was just wot they did. And they were closed to any discussion that this might be in anyway anything other that helpful, useful etc.
Even the consultant psychologist leading the cfs therapy service told them frequently that they did not offer GET since 2005. And cbt/other therapies/pacing where appropriate and only supportive, not aimed at cure. Ironically I was trained in CBT and could see that there was no evidence base. It was something for the ID doctors to refer too and to allow them to discharge. No curiosity or follow up. No support for my GP. Merely a somewhat misleading letter to my GP confirming diagnosis and telling them I'm fat and lazy, and unwilling to engage. No mention that I thought their support suggestions had no credible evidence base.
The lack of curiosity and interest is I think largely a self protective behavioural and psychological avoidance bias/response. If they don't look, they can avoid the scale and horror of the situation. It avoids them approaching psychological discomfort and distress. It also absolves them of the need 'to do something' if they don't know. When they do look, perhaps it is too big, too scary, too overwhelming and they opt out. Flight and freeze responses.
Ironically pwME are hypothesised that they are fear avoidant of activity. Perhaps the medical professional needs to take a wee look in the mirror.
Without interest, curiosity and knowledge nothing much is going to change.
We need curiosity and interest from trained minds to have light bulb moments. The more persistent doctors and researchers are the more likely newer ideas that can be tested will come to light. This is one reason I find it frustrating that, for example, rheumatology is now distancing itself from diagnosis and care of FMS patients. They are now diagnosed in NHS by senior physios. If there is little or no medical interaction or interest, how is anyone going to figure out how to understand and solve a medical problem like FMS? Or ME. Similar diagnosis and medical discharge from NHS for pwME. No follow up, no development, no engagement. How does this change? I suspect with biomarker and/or credible, useful treatment. But how does the medical professional get to this point if it is largely disinterested? How can this change?
