The first and last lines of Alice's reply to Holmsey came from a very, very angry place, and I'm in that place quite a bit myself, so I think I can understand. From my own experience, I know that I often direct that pent-up anger at the most inappropriate targets - those few people who do listen to me and help me - when they say things that are politically incorrect or upsetting. I think something similar has happened here, and from past experience on this forum I have every reason to hope that we'll all make up and stay friends. Remember that, for UK PWCs who've been campaigning around this for many years, this thread is targeting the issue that many of us see as being at the heart of our suffering, and it is draining to have to go back to square one and make the same old case all over again.
In fact I had almost this identical argument with my dad just a few days ago, and eventually reacted just as Alice did. Since then he's been reading up and I've sent him some relevant links, and I think he's coming round now. Can I recommend you watch the first couple of videos on this thread, to get an understanding of the history of where that anger comes from?
http://forums.aboutmecfs.org/showthread.php?t=1098
As I said earlier I've only just come to hear about SW, from what he's saying he's moved on, doesn't appear to hold the views he's accused of, at least not as single and sole views.
Both in the large and small scales, the position on the psychiatric nature of CFS/ME has indeed shifted and adapted over recent years to a more nuanced position. Rarely will you hear anyone publicly describing it as a 'purely psychiatric' condition. Instead, when I sit down with my GP, he will carefully try to slip in something about 'mind-body' connections and a holistic approach to healing. The idea that there is no distinction between mind and body really, and that everything is related, has gained a lot of traction in wider society, and it's basically a line of reasoning that you can't argue against any more. The argument goes that all physicall illness is improved by a positive mental attitude, so if you're sick, surely going to see a psychologist can't hurt? It seems so reasonable. But ask this: do they send everybody else with a physical illness to the psychiatrist? Or is it just us that need to think more positively?
The waters are therefore so muddy that it's more difficult to see things as starkly as they were 10-20 years ago. The position of the psychiatric lobby has indeed evolved and adapted in order to survive. But it's all smoke and mirrors, and you'll have to ask the right questions to expose all the spin for what it is. The key thing to realise is that, for us, psychotherapy is the
only treatment available on the NHS, and psychotherapeutic research is the
only research that is funded. Although it will be spun differently, on the basis that counselling is increasingly being offered to cancer patients etc (and they want to expand all of that to offer psych treatment to everyone who's long-term sick, and we are really no more than their foot in the door to that expansion), you need to understand that psychotherapy is offered to us as a
treatment of a condition classed as psychiatric. There's a world of difference.
There are some psychiatrists who accept that there is a physical basis for CFS, and others who don't, so the whole field is more nuanced now. But
the underlying basis remains the same: they simply do not believe, fundamentally, that our illness is physical. They believe (some of them with great confidence) that we are mentally ill. I find that unbelievably insulting, frustrating, closed-minded, it makes me mad as hell, as an intelligent person, to be patronised in the way I have been, and if you've ever had an experience along these lines with a doctor or member of the public, then bear in mind that the whole point is: Wessely wrote the book on all this for the UK, he made it public policy, and he trained the doctors and psychs to take this approach.
I think it's actually a transparent case to make that many of us have suffered psychological trauma at the hands of this policy.
To chastise him for not following what's going on in ME, well, I've had an answer to every mail including my first where I pretty much attacked him for 'doing harm' simply by calling time on XMRV before he 'actually' knew if it was causal. Someone who takes that much time, to write to someone like me, surely, has to be pretty hard working, so if he's not following CFS, but it's also the case that that's no longer his remit, then what do we critisize, perhaps that he's still commenting on it?
I am not really terribly impressed that on the random afternoon in question, when several of us emailed him, he had enough free time to spend that afternoon emailing us back. It's nice that he didn't just ignore the emails, but to me it merely suggests that he's more of a political animal than a scientist.
The important thing though - someone will correct me if I'm wrong - is that he remains THE guy who's in charge of CFS policy. He did say that he's not really following the CFS research closely any more, and it's not really his main focus (he also does a lot of other work for the government, including his MoD funding to 'deal with' Gulf War Syndrome, another mass psychological delusion). That may be the case, but correct me please somone, is he not still
the guy who advises health policy on CFS?
I think we have to take into account what many other people have said on this forum about their past dealings with Wessely, and I think in that context your interpretation of your conversation with him may be a little...well, I want to say naive, I don't want to be insulting, but you should understand that you're dealing with a very powerful political figure, a man at the heart of health policy for CFS/ME, and a psychologist. People with a history with him are very sceptical about his apparently conciliatory tone at the moment, and I'm quite sure there's good reason for that.
This thread started as an attempt to open a dialogue with SW. He shut that dialogue down when he tried to censor the thread by withdrawing his email from publication. (In my view he may even have incriminated himself in that censored email by admitting that he hasn't kept up with the latest research, because last time it looked it was his job to do precisely that). But we mustn't let ourselves be distracted from our goals here.
I hope everyone will continue their conversations with SW and will use this board to clarify any disinformation and spin they may encounter. But what this has highlighted for me is the need to compile evidence and to make our case in a credible and reasonable way. Can someone point us at such information?
Just one more thing for us to be working on while we wait for the confirming studies to bring millions more PWCs out of the woodwork and into the light...when that does happen, please let's be ready for them...
