Campaigning Advice I've received (UK)
This may not be exactly on topic with the thread, but it's on topic with what people were talking about earlier, at least...If you think the following content, and everybody else's contributions on this subject, are worth collating and putting into a dedicated thread of - something like - 'UK campaigning tips and advice' - then please suggest a thread title by PM to me, or just go ahead and create one and I'm happy to move this there.
Over the last month or so I've contacted pretty much everyone I can think of that I know who has some advice to offer me regarding campaigning around these matters (specifically: XMRV, and CFS health policy) in the UK, and asked their advice, and earlier discussion on this thread prompts me to report on what came back. The main reason for posting here is to underline and support the excellent posts a little earlier on this thread by Martlet and Thefreeprisoner in particular - what they're saying is sound campaigning advice and absolutely consistent with what I've been told.
Unfortunately I can't give the credentials of these people without being personally identifying, all I'll say is they are all
very smart,
very well-read and
very qualified to comment on the areas I asked them about - most work in health, one in law, and one works in the houses of parliament. I asked them what one might do that might have some influence...
Since there's been some talk about influencing government, I'll start there. I asked my contact in the House what works when communicating with MPs, and who to write to about this subject. They said that your own MP is the place to start -
www.theyworkforyou.com - and that when writing, the important thing is to be cool, calm, rational, clear, reasonable, etc...and clear about what you want. In this area in particular, they said to be aware that many of the people you want to deal with have secretaries, and that everybody in these jobs who has a bit of experience tends to be somewhat wary of someone who, as they put it, "looks like they might be about to show you the contents of their matchbox"...put bluntly, they get their fair share of nutters and those people waste a lot of time, so you
don't want to come over like one of those! Beyond MPs, there are maybe a handful of people in the relevant health select committees worth writing to, and all the way up to the health secretary from there may be worthwhile - if it's very well written. Obviously, keep it short enough to read, clear in what you are asking them for, ideally having one or a few specific requests, and get it proof-read unless your english is excellent. With your own MP, arrange an appointment and go and talk to them if you can, or if not, perhaps suggest a phone call?
You can of course get questions asked in the house, but bear in mind those asked previously, and how they were wriggled out of - you need somebody on the ball to follow these things up properly:
http://www.theyworkforyou.com/search/?s=cfs
One person who understands how the NHS and UK Health Policy works as well as anyone I know, advised me that specifically in terms of changing the policy regarding any health matter, actually campaigning through politicians is less relevant. He said that government policy is always going to be - and should be - driven by expert advice, so when talking to them about any kind of health detail, they will simply refer the matter to the head scientists, doctors and academics. He said something along the lines (a fairly obvious point) that it will always be in practice pretty much impossible to make headway on any matter of health policy without scientific consensus in your favour. He said that in terms of getting changes in health policy, even with strong science behind you, it is always a slow process because essentially an entire community of thousands or tens of thousands of key professionals has to absorb the scientific information, deal with all their questions and scepticisms, come round to accepting the reality, and then reach sufficient numbers to form a consensus. He said that when GPs (in particular, but also consultants in relevant disciplines and other key practicing professionals and leading academics) have all come round to an idea, there's then basically a momentum for changing the clinical guidelines. Not that it's a democracy, of course, but that in terms of changing policy, this is the community whose influence matters. It's very difficult to get the time of these people, by definition, because their time is incredibly full, of course, and they have vast amounts of literature in front of them demanding their attention. But on the other hand, clinical guidelines are constantly shifting, it is their job to keep up with it, and they are doing so - the better ones, of course, do so more proactively than the not-so-good.
Regarding GPs specifically, I was told by one person that the situation is this: the average GP may typically have, say, 2-5 people who may have ME/CFS in their practice and they really don't know what to do with them. They have so many other matters to deal with, they don't have time to deal properly with these chronic patients, and they know it, but have nowhere to refer them except for CBT. They now by and large feel that there is almost certainly some physical explanation, but until that cause has been identified and a reliable diagnostic tool and treatment is available, they don't know what they can offer. btw, I've got no sense at any time that GPs disagree with this assessment that there are no reliable treatments and diagnostic tests, and persuading them that the guidelines they receive on this are wrong will be next to impossible; they seem to leave that question to the scientists almost as a matter of principle and I'm guessing they would say that if there were anything definitive available, it would have been proven. Regarding CBT they would tend to think it might be helpful for any condition, and since there's nothing else they can offer, they would tend to consider it, but on the basis that it was helping deal with the consequences of a physical illness. (All this seemed rather interesting, because of course that's not everyone's experience although it is consistent with mine, and I think there's a great deal of variability. My overall sense was that the consensus is that ME, CFS, and other things besides, clearly have a physical explanation that we just don't know yet. Whether XMRV is that explanation...they will of course wait until it's conclusively proven. But it felt striking that this quite favourable position is so at odds with what we perceive as the reality behind the CBT-driven approach, born as it is out of the somatised history of ME and CFS, and I would suggest, very much at odds with what Wessely and Co actually believe, regardless of what they may now be saying. And what kind of scientist is this, whose findings and theories can change so seamlessly and effortlessly with the political fashion of the day? A most convenient flexibility.
Although my friends didn't mention it, the Medical Research Council (MRC) is the other key body of significance to us, but I'll have to leave that to someone more qualified to describe their role and how to contact them...they are the linchpin really, and there's a strong case to be made that the (control of the) direction of research funding is the key issue to be thinking about and targeting.
There was one big theme that came out: everyone I spoke to said from the outside that it was now well known that ME/CFS was a physical condition, that this had all been thrashed out, and policy changed, based on new scientific evidence, and they were shocked at any suggestion that this is not now accepted - to continue to claim, or behave as if, ME/CFS is a psychological condition, would be outrageous to them. I found that very positive, and it does suggest a sensible and achievable campaign goal (and indeed something that XMRV will hopefully make inevitable): to have Wessely's centre replaced by a new research centre (like the ones CFSAC are talking about, or...like the WPI...). Incidentally, this would be a more attractive campaign - and this is so important to us - by virtue of the fact that one is suggesting something definite, positive, practical, achievable, tangible, positive, and above all, positive. People like positive.
One last thought. The only relevance of "heroes" (which I understand to mean celebs with ME/CFS) is for public campaigning. There probably is also a place for campaigning aimed towards the general public - and really that means somehow influencing the mass media (hopefully positively) and anything else is a waste of time - and I think the general public out there - right now at least - have a high awareness that ME/CFS is (a) real, (b) physical, (c) devastating. What they may realise less are the following key points:
There are almost 3 times as many people with ME/CFS in the UK as there are people with MS.
There has been no publicly funded biomedical research whatsoever into ME/CFS in the US or UK since 1991. (indeed, has there ever been? Total historical spend anyone?)
The entirety of the meagre 800,000 annual research budget for ME/CFS (3 per sufferer per year) is still spent on psychological research (based at the (controversial? hated?) King's College Chronic Fatigue Research and Treatment Centre, provisioned by Prof. Simon Wessely, and offering only CBT and GET.*
Psychotherapy - CBT - and Graded Exercise Therapy - GET are still the only treatments approved for ME/CFS under the NHS, even though a range of medical diagnostic tests and treatments are now available, both privately and in the US.
* - CBT: Cognitive Behavioural Therapy - psychotherapy used here to persuade patients to change their beliefs about their illness. King's College will even offer psychotherapy to CFS patients over the phone. **
GET: Graded Exercise Therapy. Proven harmful and even dangerous to many people with ME/CFS by numerous international studies. In studies, UK subjects are only asked whether the treatment was (a) helpful or (b) had no effect.
I think most people would be shocked by the first three of these simple facts, at least.
** - PS: Sorry for letting you know you can get CBT over the phone from King's College folks, please don't have nightmares...
. But seriously...I mean, these are some guys, no? Mystery illness, nobody has a clue, devastating, hundreds of thousands of people...and this one guy is so good, you just give him the entire 1m-a-year research budget and a call centre (for those too sick to move), and it turns out that (his) rigorous studies prove his to be the very most effective treatment available, bar none. Yup, this must be some guy all right - and besides all this brilliant, brilliant work, he even finds time to be a prolific researcher on other people's work too. Sadly, everybody else's work isn't nearly as good as his and almost all of it turns out to be rubbish - he's obliged to publish hundreds of research papers explaining a wide range of imaginary phenomena other people thought they saw. But what a guy! It's like he just says the magic words, and all those scary ideas just disappear...
