You can think what I wrote was stupid – fine – but I just want to be clear about what I was/was not saying. My intent is exactly what Seven describes. I was never making the argument that these treatments should be included in any guidelines – NICE, CDC or otherwise. There simply isn't the evidence for it and for some of these treatments, there may never be. This community is too heterogeneous (yes, even with the strictest of criteria).
Hi, Jennifer, Thanks for coming to comment. Not a case of thinking you are stupid, you are clearly not stupid, but in this instance showed great lack of judgement in including Michael Sharpe in your thread. I understand that having a large amount of Twitter followers makes using the medium more fraught but I can't honestly see how this has anything to do with your impulse to include Sharpe - and less harmfully, perhaps, Dr Hammond, in the manner in which you did. It is anathema to me and many UK patients that you would reach out to Sharpe like this, all things considered.
I do get your passion - and your knowledge about these other treatable conditions, which may or may not be related to ME, is very useful. I get you don't want them missed. But the fact is it is the *removal of behavioural treatments for ME* which is at the forefront of NICE. The damage of GET/CBT is so all consuming, it is hard I guess to be prioritising other treatments/tests like the ones you describe. It seems like you almost have the priorities back to front. If all else was equal, sure, demand these other things, but sadly the situation is that we are still fighting hard for respect and dignity and decent care for ME *alone*.
Of course, the confusion of criteria for ME has a lot to do with misdiagnoses, other missed conditions, but I won't get into that.
Yes, of course, conditions like POTS should be tested for if symptoms demand it. I have orthostatic intolerance but not full blown POTS, though I have never been tested. I am not honestly sure I could endure a tilt table test. I use a walking stick when able to go outdoors though it doesn't help me stand longer, just means I don't need to find a fence or lamppost or wall immediately to lean/sit on if I ever have to stand for more than five minutes.
I have never had a brain MRI, maybe I should have one, I get the horrible pressure in my head often, but just put it down to ME and something I have to bear. It feels like part of PEM to me, the pressure in my skull. Often postexertional.
It is really hard to know in depth the ME politics of another country, I don't fully understand what has gone on in the USA though I try to educate myself by reading Osler's Web - and more recent literature. I do understand that you won't have the same grasp of the profundity of harm caused by the Wesselys and Sharpes and Whites as we do. But the harm is so profound, it is sometimes hard to bear and articulate.
I am as you know unusual in having had the neurology diagnosis of ME in 1984, with muscle biopsy & EMG & immune profiling, so I have seen my own personal narrative of illness disappeared and rewritten by the bps scoundrels in the 1990s. I have not suffered harm from GET as I would/could simply never engage in it and thankfully have never been offered GET/CBT for ME, but many pwME have been harmed and also children with ME. You will have heard accounts of harm at the recent Scottish Parliament event. One woman actually spoke briefly of the problems Sharpe had caused the patient population (he used to be based in Edinburgh).
Michael Sharpe accompanied Richard Horton (Lancet) on an Australian radio broadcast in 2011 and Horton spun the whole militant patient narrative, it was distressing to listen to the pair of them. Sharpe said in defence of CBT and GET: '... you can actually make some changes in your illness, you don't just have to lie back and wait for time, it's worth a try'.
'You don't just have to lie back and wait for time' is simply contemptible.
And let's not get into QMUL not releasing the PACE data. And I don't need to remind you of Australian patient Alem Mathees sterling and gruelling work in this respect (I understand he is still extremely ill from the exertion). Or of the many other UK patients/advocates - and also in Ireland, Tom Kindlon, for example - who have worked their socks off to challenge PACE and NICE, at great expense to their health.
Your tweeting Sharpe seemed to make you unaware of all of above. None of us is infallible, and the world will not stop turning because you tweeted him, but please do learn from this. Also, don't flatter him by making him think he could ever be part of the future vision of ME, no one on with ME in UK can or will ever trust any of these PACE doctors again.
Thank you. Sorry comment is lengthy but was hard to be concise.
