You may wonder what that picture’s doing here and what that title ‘The Vale of Strange’ is about. It should all become clear as this post progresses. But I think you will agree that ‘The Vale of Strange’ sounds like a fair description of where we find ourselves when we’re trying to argue the case for a better deal for people with M.E. When we’re trying our best to set out the facts as clearly and concisely as possible, yet finding that many of those in positions of power seem to have little regard for the truth, preferring to stick with what their colleagues in command tell them they must believe, rather than study the evidence for themselves.
Writing here back in June about the review of the NICE Guidelines for ME/CFS, I said “it’s anyone’s guess what will happen when the interminable review is finally completed in 2020 – though the smart punters would probably put their money on CBT and GET remaining in favour”.
Unfortunately subsequent events have suggested that those ‘smart punters’ would be right. The choice of personnel for the committee which will review the guidelines, including as it does many who appear to be wedded to the use of CBT and GET, while omitting many of those who hold the opposite view, suggests that I was being unduly optimistic when I spoke of it being ‘anyone’s guess what will happen’. When you see an old, dilapidated truck heading for the edge of a cliff, controlled by a committee of drivers, about half of whom want the vehicle to maintain its present course, you don’t have to think too carefully to predict what happens next.
Of course, there are some excellent people on the committee; there are just not enough of them. There are, as I say, far too many who have supported GET and CBT over the years, who have bought into the unproven, ill-founded biopsychosocial theory of ME. Some people, including at least one voice I usually respect, have tried to excuse the inclusion of these GET apologists on the grounds of the need for ‘balance’. But what kind of balance would this be?
Just to recap what most of you reading this will already be well aware of: CBT and GET, as referred to in PACE, are potentially harmful therapies which emerge from the unproven biopsychosocial theory of M.E., while PACE, the largest trial purporting to support this approach, has been widely debunked and discredited. A series of letters have been sent to The Lancet, the Journal which published the Trial, the latest signed by almost two hundred scientific and medical organisations and prominent individuals, all calling for an independent reanalysis of the trial. It is perhaps an example of the arrogance of those who consider themselves to be part of a clique whose pedigree places it above such matters as truth and falsehood, right and wrong, that they have not felt obliged to respond.
And given our current state of knowledge about M.E., the only reason that a NICE Guideline committee split between those for and against GET can be said to represent ‘balance’ is because those who have lost the argument refuse to accept defeat.
Deep down somewhere, even the PACE team know that the data has been reassessed, the argument is over and they have lost. They know that an independent reassessment will come out against them, which is why they are making sure their friends will not allow it. Not only have they lost the argument, they have – in a metaphorical sense – thrown their toys out of the buggy and are sitting there sulking. But in such a way that isn’t obvious to those in the ruling clique who have never taken the time and trouble to understand about PACE.
The PACE apologists don’t engage with the facts any more. They make statements which appear to do so, yet they are simply repeating the same old tired phrases which lost the argument last time around. Michael Sharpe’s performances on Twitter have been a perfect example of this: making a statement here and there, cherry picking which tweets to engage with and which to ignore; not submitting any kind of joined up, reasoned argument, just giving a studied impression of what he hopes will seem like a reasonable man.
To talk about ‘balance’ in the NICE committee is going along with this charade of pretending the argument isn’t over. It gives the impression of representing both sides of a finely balanced discussion. But this isn’t how things are. To the extent that it is a balance, it is only between right and wrong, between truth and lies, between the proven and the groundless. That, surely, is no kind of balance at all.
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The patient community have made impressive efforts to make known their dissatisfaction with the proposed personnel for the guidelines committee. Among all the other many patient advocates, I was invited to take part and I can only apologise for my total lack of response. The reason for that will become clear very shortly. Obviously, I am coming late to the party on this and a lot of representations have already been made, but it is worth my mentioning a new initiative by M.E. Action, encouraging patients to send a Christmas card to NICE staff telling them why those who have championed the ideas and treatments that have harmed the community should not be writing the guideline that will influence treatment for decades to come. I shall certainly be participating in this and I encourage you to do the same.
So what have I been doing the last few months? I think the best way to answer that is to say ‘something else’.
One of the most wearing things about being an M.E, patient advocate (for want of a better word) is the need for constant repetition, of having to make the same valid points over and over again in the hope that someone will listen. This can get to you after a while, and in recent times I have tried to balance writing this blog with writing other things, just for the sake of my sanity, which is why there have been fewer posts this year than previously.
One of the things I did was to go back to writing some children’s fantasy stories which I had previously put to one side due to the disinclination of British literary agents to have anything to do with them. Now I decided I would try self-publishing them, and so was happily surprised when a few months ago, by a serendipitous turn of events which I won’t go into right now, a small American publisher, Journey Fiction, offered me a contract for the books…
The title of the series, you may now have guessed, is The Vale of Strange and the first volume, The Shop on Peculiar Hill, was published on 1 December. Should you be interested, you can find out more about the books on Amazon or at www.grimlydarkwood.com They’re best described as humorous adventure stories and are aimed at the age range 8 to 12 but I’m doing my best to convince adults that they will like them too. Indeed, I’m happy to say that most of the adults who’ve tried the first book do seem to like it. The Shop on Peculiar Hill is available in both paperback and electronic form at Amazon and other online retailers. Just search for my pseudonym ‘Grimly Darkwood’ or follow these links: Amazon UK Amazon.com US
So that’s why this post is entitled The Vale of Strange and why there’s a rather strange picture up at the head of it. I hope you will forgive me for writing about these books on this occasion – I won’t make a habit of hijacking the blog in this way. In any case, most of my writing and campaigning about M.E., the blog included, is going to have to be put on hold – or at least on go-slow – for the time being. There’s no way I can both do that and write and publish fiction, not and maintain the level of health – or more accurately, ill health – that I have at the moment. Yet fiction is something I’ve wanted to do all my life, so I don’t want to pass up on this new and unexpected opportunity l’ve been given.
I would like to be able to tell you that the book is about M.E., perhaps a metaphorical quest to slay an insidious dragon, but I’m afraid it isn’t, not ostensibly. Nevertheless, it’s a children’s fantasy story so it will never be a million miles away from the antics of those who believe that patients shown to be made demonstrably worse by exercise can exercise their way back to health. The story also involves a population being very misled by the authorities about a matter which could have a serious impact on their health and well being, so some people might reach the conclusion that it *is* about ME after all.
If you would like to take a look at the book to see if you agree, or indeed for any other reason, then of course I shall be be delighted. You can buy the book and read the reviews at the links I gave above. Or if you prefer to ‘try before you buy’, there are free sample chapters here. Do write and tell me what you think, and if you are able to leave a review on Amazon, then so much the better.
As for this blog, I’m hoping to do one final post here to round up my series on ‘medically unexplained symptoms’, one which makes an important connection I feel needs attention. After that, perhaps occasional posts will be possible. We shall see…
I’m pleased to observe that the ME community is more active and organised than ever before so I don’t feel that one more blogger will be missed all that much. Even so, I do feel guilty to leave others to shoulder the yoke of repetition that has started to drive me so crazy. I’m just glad there are those of you who are willing to take it on, including those who were doing it long before I arrived and will be doing it after I ‘m gone. Tom Kindlon is a name which springs to mind but there are many others, typing away day after day, week after week, matching the intransigent determination of those who have lied – and continue to lie – about M.E. with their own intransigent repetition of the truth.
It’s a hard slog, but I’m sure that truth will triumph in the end.