My thoughts from the NICE Judicial Review
on the 11th and 12th February 2009
17th February 2009
I got back home on Saturday after a 9 hour journey to South Ayrshire. I took a train from Kings Cross to Glasgow via Edinburgh that left at 11am.
The train had no air conditioning and the heating was full on and the carriage was loaded with children one of whom kicked my shins roughly every 2 minutes and could only communicate via shouting.
And my personal stereo failed on me for the whole return trip home so things could not have been much worse.
I got home at around 7pm to find Mum had been taken ill with a cold and cough.
So, I am not up to writing much but I just wanted to say thanks to Kev and Doug and to Jamie and Jeremy for what must have been an incredibly difficult two days.
And it was excellent to see so many people come along to support the case over those two days. All those who came dwarfed the representatives from NICE. Mid morning on Day One there were no chairs left and the court was declared full.
I had a serious headache brewing for Day One and a full blown flashing lights migraine for nearly all of Day Two so I spent pretty well all of my time either staring at a grubby carpet or with my eyes closed. So I wasn't able to take notes but I could see others were but then this has always been about teamwork so I knew we'd have reports and reviews coming in here when I got home.
Having said that it was all compelling listening and I am really glad I made the effort to attend.
If the Judicial Review I sat through had been the Grand National then I'd have to say that our side tried very hard but it appeared to myself and others that something was not right especially as the afternoon session of Day One took place. Jeremy the claimants barrister just wasn't firing on all cylinders from what I heard.
It was like a horse you'd seen being specially trained over a period of many months - a horse you knew had won many hard races before yours and a horse that on the day was showing poor form.
But then every time I managed to look at the Judge I was looking at a stuffy member of "The Establishment" who seemed to find it all very distasteful.
And as our side were trying to challenge "The Establishment", it seemed to me that this Judicial Review was not going to be allowed to succeed.
But - at the very least - this Judicial Review was a shot across the bows of "The Establishment" and the result of all the hard work that has been put in over many many months is that there is a whole cupboard full of evidence all set out in black and white and in context.
This is evidence that can be used again elsewhere.
My guess is that if a miracle does not happen then the Judge will simply ask for a statutory review of NICE Guideline 53 which they said was due in six months anyway.
And this of course will change nothing because those that in my view rigged the GDG to force an exclusive CBT/GET outcome will just rearrange the chairs on their own lucrative Titanic.
So as some are mentioning already, perhaps our best course of action would be to somehow approach the European Court of Human Rights.
There is no doubt that in my view it is simply wrong that drugs such as Gabapentin are being denied because the NICE Guideline does not allow this drug to be used when I know that those few being offered it locally are benefiting from it.
I wish I'd heard the assertions about the heterogeneous nature of "CFS/ME" as stated by the GWP Report of 2002 and that this was why the drugs worked for some and not for others.
I wish I'd heard it clearly stated that all the RCT's that were said by the NICE defence to be exemplary were in fact all seriously flawed because they did not include the 25% severely affected. In fact the GDG paid so little attention to those severely affected that from my view it was fatally flawed on that score alone.
When the defence barrister claimed that there was no diagnostic marker for "CFS/ME" there was a really needed break in the silence from the audience at the back. Many of us laughed or coughed and we were warned by the Judge that if it happened again we'd be asked to leave.
But the Judge didn't mind later on when some of us laughed at his own "humorous" quips so I think that showed to me that there was an issue of bias going on up in the high chair.
And there was a slip at the very end when the Judge read a piece of paper regarding the WHO classifications and he stated clearly that the
classification of "CFS/ME" was contentious when none of what we thought he had seen would say this. So - what had he already been told and by whom?
I shall not forget seeing Jamie Beagent on the phone during the lunch break on the second day. He looked really worried - under stress and I had by that time thought something was very wrong.
One last thing, it also struck me that whilst the NICE defence had managed to outclass the claimants legal team, they had not really prepared for "the mouse that roared" during the final Act on the second day.
The barrister for the "interested party BB" had been dealt with as an afterthought by the NICE defence. Their best attack was to try to dismiss his evidence because he had no standing in Court and that he had no sanction to speak and that his client had no viable interest.
But this was all swept away by the barrister for BB with legal argument and a bit of help from Jeremy.
Once BB's barrister was allowed to get to the meat of his argument, his confidence grew and things definitely took a turn for the better - so much so that the whole day over ran by an hour and fifteen minutes from the original 4pm close.
I saw one of the men on the NICE defence table at the back of the room looking red faced and very angry when it was revealed that the cost benefit (QUALY) issues were completely wide open to quite scandalous criticism.
And indeed the barrister working for NICE also dropped an almost constant smile during that final act so at least there was a final punch that will be difficult to ignore. Thanks to how things turned out, the barrister for BB managed to fire a direct shot under the NICE radar which will obviously be an inconvenience for the Judge who now cannot dismiss the stand alone issue of neglecting to fully account for the considerable costs of implementing CBT and GET on a potentially infinite basis.
Mr Bear the NICE (sic) barrister when making all his claims about the "exemplary" Random Control Trials and any other "best available evidence" to support CBT and GET only ever claimed that the benefits of CBT and GET were "short term" which means of course the considerable expense involved in training and employing multidisciplinary teams who will have a never ending job "managing" or even dare I say exploiting the existing patient community also known as "the victims of Guideline 53."
Those "victims" of Guideline 53 being subjected to such interventions as they were described will have to return time and again for these courses of CBT and GET because there was and is no evidence of a long term cure or even a long term remission using the interventions promoted by Guideline 53 as outlined at the Judicial Review Hearing.
What was described in that last 2 hours makes this Guideline 53 look incredibly expensive and totally extravagant as well as inadequate but then this was always about building a mental health CBT based industry and finding a vulnerable patient base to keep all these multidisciplinary pseudo "specialists" in employment - wasn't it?
And whilst patients with "CFS/ME" find themselves in a never-ending loop of CBT and GET - Guideline 53 does not provide any other treatment options to help patients get themselves off the psychosocial gravy train.
The more severely affected patients find themselves the less likely patients are to be able to get out of the psychosocial loop.
As ever - sod the patients and more so those severely affected.
Unless of course patients just turn around and say "No" and write a written complaint to the relevant authorities stating why backed up with some of the useful evidence we heard at the Judicial Review.
Perhaps we could put a pro-forma letter together and put it on the website as a means for patients to protest..
Anyway - it was really excellent meeting people I'd been in touch with for many years but as I was feeling pretty rough I didn't get to meet as many people as I had wanted to.
I hope we will all meet again some day for another battle.
Next time the battle will surely have to be fought through a Court that sits outside of the British judicial system so that at least our case can be heard clearly, objectively and without any back room "doping".
I am absolutely shattered after this past week.
This time last Tuesday I was on a second train heading south from Glasgow and since then I have covered almost a thousand miles.
So I'm going to need a while to recover.