S OS

There seems to be a very fine line between pointing out the differences between ME and CFS and creating negativity and ill-feeling within a community who are going through quite enough as it is. And the same goes for those discussing other conditions. Below is a perfectly valid point regarding early hysterectomies, which can indeed cause symptoms very similar to ME for some women/afabs. As somebody with ME who also had an early hysterectomy, I know my ME was on the mild side up to the point of the operation and I am now on my knees. Literally. So something hormonally has triggered a worsening and it is only getting worse, with no added hormone doing a thing for me. We might know a lot now, we don't know the whole picture. We will, with luck, discover more over time with research. We can, though, come together and share our experiences - or at least we should be able to. The trouble with the terms is that, certainly in the UK, we are hardly ever offered tests or any referral that would get us a formal diagnosis. We are also met with GPs who refuse to give a ME diagnosis if there is existing mental illness. So 'symptoms of ME' is likely on our records or, more likely, 'symptoms of ME/CFS'. I can tell my surgery until I am blue in the face, it's not changing anything. Aside from that, a whole load of us who believe there is co-existing Fibromyalgia (whilst some in the ME community don't believe that exists). So there are a whole swathe of patients who are in some unknown place. We can't be sure, we can't be tested, we are pretty sure that symptomatically we meet ME criteria (and possibly with Fibro thrown in), but we might know of those with CFS who are in a similar state... We are neither one thing or another. But we are in unbelievable pain, just like Jen. We are exhausted beyond belief, just like Jen. We wonder whether life will ever get better, just like Jen. If you want a film that provides all the up to date information, changes to terminology, explores the language we use, information about tests we mostly can't get even if we beg, this might not be for you. If you want one that quite clearly shows what life is like, what life with this level of pain can do to you, one to show a family member or a friend, something that might help them understand, then this might just do that. Shouting at each other is fruitless. I and many others walk away from what can be a wonderful community simply because I haven't the energy to listen to the bad-mouthing. I understand the frustration, I understand the anger, I understand the passion and dedication to getting the right information out there. I understand the need to at least try to separate conditions against a tide of people who want to club them together. Underneath this are people in pain trying to connect with other people in pain. Some people seem to forget that. That is, surely, what matters the most. Thank you, Jen, for this. It was a brave thing. You got us talking, you got us sharing, and you brought just a little relief to some of us through this film.