There are lots of replies to him which he deftly bounces back, never addressing the issues - no surprise!
It's utterly sad that a psychiatrist seems completely daft/incapable of grasping these basic concepts. People with ME are not exceptional to any other group with chronic illness. He has an opportunity to be on the right side of history, but his narcissism (and I don't lightly throw that around) is in the way.Whilst he knows fine well that there's no proven drug treatment yet for ME, which makes it somewhat difficult to articulate what we want, it's very easy to offer a positive vision for care.
In other words, ask medical professionals to just do their sodding jobs properly.
- Listen to people; having pain, suffering and grief acknowledged is enormously important.
- Provide symptom relief when possible.
- Understand that many patients need social and financial support, and help them get it.
- Work with patients instead of dismissing or gaslighting them; you might learn something.
- Offer psychological therapies to patients who want them, but don't pretend they're curative.
- Help argue for more research funding.
- Offer patients support in challenging bad science and bad public policy.
What was he expecting the answer to be?
I think you're absolutely right. I showed his tweet to my sister (who does not have ME/CFS), and she said it's a red herring and there's no point in answering his questions - they're not done in good faith, and that a response to him (if any) should ignore his questions and instead focus on him and why was he still defending PACE.He wanted to prove we are a bunch of negative bitter people who fail to advocate for what we want and instead only focus on being angry and trashing what we don't want. He also hoped to convince us to turn our focus away from criticizing PACE.
I really don't know why we even waste our time with him.
I have often wished doctors (and others!) could just feel what I do for a day. Though to really get the full ME/CFS experience, more like a month or longer, so that they begin to get a glimpse of its unremitting awfulness.There is an episode of Black Mirror in the newest season where a device is worn by the doctor linking them to the patient, where they feel everything the patient feels. That alone would probably spur more targetted research and understanding and positive treatment outcomes than anything else.