And if they can't get a result using Oxford, the weakest of all criteria, then they won't do any better with more stringent criteria....or the objective data clearly show that CBT is ineffective.
And if they can't get a result using Oxford, the weakest of all criteria, then they won't do any better with more stringent criteria....or the objective data clearly show that CBT is ineffective.
I think this is the strongest argument - it's basic logic, and there's no traps to fall into from using it. It's not "anti-psych," it doesn't risk undermining any other arguments, and literally anyone can understand it. Frankly it's shocking that NICE would define any disease in one manner, and then apply evidence based on research using a very different criteria to it.... I would start by saying that the Oxford criteria is very different from the criteria on the NICE guidelines....
I think this is a poor argument to make. It implies that biomedical research done by BPS quacks using Oxford can be applied to ME when it shows a negative result. The more relevant and persuasive point is that we don't know what stringent criteria show if the criteria are never used.And if they can't get a result using Oxford, the weakest of all criteria, then they won't do any better with more stringent criteria.
Agreed.The more relevant and persuasive point is that we don't know what stringent criteria show if the criteria are never used.
the Oxford criteria is very different from the criteria on the NICE guidelines
I fully agree with this, having just had another skim through CG53 and MEpedia's Oxford info. Even if the current NICE criteria are not ideal, they are much nearer the mark than Oxford; like a window versus a barn door in terms of who gets past. And second time around NICE will surely score a serious own goal if they base CG869 on evidence from trials using entry criteria much weaker than current NICE guidelines.I think this is the strongest argument - it's basic logic, and there's no traps to fall into from using it.
I agree that your first paragraph should render the second not applicable.I think what I am trying to say is that if I sat in front of the committee, I would start by saying that the Oxford criteria is very different from the criteria on the NICE guidelines: in fact it has very little in common with any of the sets of criteria for ME/CFS which mostly demand PEM. For that reason, the USA have decided that any studies using that criteria produce results that are inappropriate to patients with ME, and no longer take heed of them. That covers pretty much all the research carried out by British psychs, and all of the research supporting CBT.
But if you don't agree with that conclusion, and feel that data produced from patients selected by the Oxford criteria can be valid, then you have to look thoroughly at the data provided by the PACE control, and not take their conclusions at face value. If you deem the Oxford criteria to be acceptable, then the objective data from this and similar trials consistently and unequivocally show that CBT is ineffective. The subjective data is utterly irrelevant: the trial was non-blinded and the therapies were designed to change the way patients rated their symptoms.
Yes.We know this is true.
Why do NICE cling to it? It can't be the doctors who feel awkward if they have nothing to offer. It weren't the doctors in the first place. It isn't for the patients. It were DWP issues and goals, and still are.This is why the PACE trial was funded by the DWP - to achieve a goal.
Hopefully it will become too clear to the broader public that NICE offers bad advices, which will probably make NICE adjust their guidelines due to increasing pressure.
Graham said:... I would start by saying that the Oxford criteria is very different from the criteria on the NICE guidelines....
I think this is the strongest argument
Which is why we, along with others, must help NICE see very clearly that it surely will be a problem.There's no problem for NICE to use Oxford criteria instead and keep CBT/GET.
Sorry Inara, but I disagree. If they accept Oxford, then they have to accept that the studies using it are unable to show any objective improvements.There's no problem for NICE to use Oxford criteria instead and keep CBT/GET.
Spot on @Barry as I was reading through I was thinking just what I would have done at work when going into a meeting with senior managers what are the 3 key points to get over - spend all available time pressing those points to make them hit home.It does also depend on who the target audience is, and what the objective is, which can vary according to the audience. For NICE, more than two or three issues would be pointless. But when trying to make clear all that is wrong with PACE, that is different - but not for NICE.
I think a key objective has to be to get NICE to truly understand that real physical function is the only sane primary measure of recovery or improvement. Even if they still seem hooked on mental issues, that does not change the fact that real physical function is what has to be measured. i.e. Objectively, what is actually achieved. Not what people say on the day they think they are capable of.
If NICE do not take on board the importance of real physical function being what underpins the issues with PwME, then any other arguments will fall on stony ground I think, because they will still be founded on this premise I imagine.
I would, however, have to counter your suggestion that no harm would be done by withdrawing the guideline in full. Despite its unpopularity with patients, which we clearly now empathise with, the majority view has always been that it has done some good, not least by legitimising the diagnosis and ensuring that patients had access to services. We have repeatedly been told that the entire support structure (from service) for patients would disappear if the guideline were withdrawn a s commissioners are seeking every opportunity to disinvest at present.
As I said before, the guidance is very carefully worded to protect patients and we are deeply concerned at the actions of some service agencies (health care commissioners, children’s services, schools and benefits agency amongst others) which clearly do not represent the wording and intentions of the guidance. However, this is not something which NICE has direct influence over and I can only suggest that you direct your ire on those responsible for irrational decisions and the misquoting of our guidance.