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On the POTS thing I officially have a POTS diagnosis, from one of the questionable ‘specialist cfs/me’ services and doctors, although on paper supported by a cardiology department. But I don’t think I have POTS, I don’t tend to say I do. But do have OI and something weird cardiovascular… Maybe...

No Jonathan I don’t believe ai have misunderstood your purpose. I think I share the goal, don’t doubt your intentions and am grateful for what you are trying to do. I have been very clear reading what you have said in this thread and in the past. I’ve also I think been clear in my position and...

Okay, I don’t doubt what you experienced. I do doubt the value of taking it at face value and extrapolating from that experience to the wider context and motivations of doctors in the present day and using it as an argument for action here. Let me put it this way, how likely are people...

And they are quite likely lying to you and themselves. Please read my posts, but I’ll repeat this: Doctors aren’t changing their mind and denying care because of patients spouting woo, it just gives them cover for something they believed anyway. That these patients should be ignored. A lot of...

Doctors have said doctors have neglected patients because of what patients said. And they’ve written that down. Why do the doctors get the benefit of the doubt here? Could they be, even if inadvertently, misguiding themselves and others? Once again, I agree we should combat the woo. I agree...

I don’t disagree with us needing to stop the woo and stop advocates from pushing it. It is unhelpful. Let’s work together to address that. Painting a picture of patients being the reason we are all suffering and denied care is I think unhelpful in many ways including in the goal of combating...

I don’t want to speak for anyone else but I understand the reaction and share it. Some of the earlier posts read to me like victim blaming. Some here have said doctors are not treating patients because of patients attitudes.

My problem with this is I went out of my way (and still do) to not be ‘one of those’ patients. I have spent a decade giving medics every opportunity to give me the basics. And yet… I can see the argument that people who are better than me but shout a lot of woo make it worse for all of us. I...