We read a lot on these forums about some appalling treatment handed out to PWME who attend specialist referrals and hence I always go hoping for the best but prepared for the worst.
Yesterday, I had my third and final appointment with an NHS infectious diseases consultant (I prefer not to say at which hospital for privacy reasons) concerning a possible reactivation of HHV-6. After many tests and much discussion we agreed that the tests neither ruled it in nor ruled it out and that the published literature on Valcyte for HHV-6 in PWME wasn't strong. I'd like to have taken the risk and tried Valcyte but I can understand why they didn't want to prescribe it and respect their reasons for taking that decision.
Throughout these appointments I've been listened to respectfully, the burden of the disease on me has been clearly acknowledged, and I've had proper tests done (including an MRI brain scan). My consultant has in turn consulted with other specialists within the hospital and they've read the (considerable amount of) evidence I've presented. I was impressed with the way in which I was treated.
But the main thing I wanted to pass on was something from yesterday's conversation. The consultant said that he and his colleagues are all convinced that ME is an immune disorder and they wish they had something to offer us. They're keen to do clinical trials. When they're all together in the pub, they talk a lot about ME and what might be going on and how they might be able to help us. They spend a lot of time talking about it, he told me.
I asked whether he'd heard of the Rituximab trial and he hadn't so, not surprisingly, he's not absolutely on top of the literature, which would be pretty hard to do since no-one is producing a regular ME research digest for those outside the field (I think someone should).
But there's clearly much more fertile ground there than I had expected and I was very encouraged that these doctors, despite what has seemed for so long like the iron grip of the BPS model, can clearly see what kind of disease this is and are looking forward to having something in the armoury against it.
I don't know if that's the conversation we'd have had five years ago. I really do think that there's a momentum for change now.
Yesterday, I had my third and final appointment with an NHS infectious diseases consultant (I prefer not to say at which hospital for privacy reasons) concerning a possible reactivation of HHV-6. After many tests and much discussion we agreed that the tests neither ruled it in nor ruled it out and that the published literature on Valcyte for HHV-6 in PWME wasn't strong. I'd like to have taken the risk and tried Valcyte but I can understand why they didn't want to prescribe it and respect their reasons for taking that decision.
Throughout these appointments I've been listened to respectfully, the burden of the disease on me has been clearly acknowledged, and I've had proper tests done (including an MRI brain scan). My consultant has in turn consulted with other specialists within the hospital and they've read the (considerable amount of) evidence I've presented. I was impressed with the way in which I was treated.
But the main thing I wanted to pass on was something from yesterday's conversation. The consultant said that he and his colleagues are all convinced that ME is an immune disorder and they wish they had something to offer us. They're keen to do clinical trials. When they're all together in the pub, they talk a lot about ME and what might be going on and how they might be able to help us. They spend a lot of time talking about it, he told me.
I asked whether he'd heard of the Rituximab trial and he hadn't so, not surprisingly, he's not absolutely on top of the literature, which would be pretty hard to do since no-one is producing a regular ME research digest for those outside the field (I think someone should).
But there's clearly much more fertile ground there than I had expected and I was very encouraged that these doctors, despite what has seemed for so long like the iron grip of the BPS model, can clearly see what kind of disease this is and are looking forward to having something in the armoury against it.
I don't know if that's the conversation we'd have had five years ago. I really do think that there's a momentum for change now.