NICE GUIDELINE ON ME/CFS WILL BE UPDATED! (Sep 20th 2017)
- Thread starter charles shepherd
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I think the whole tone and thrust of this surveillance report shows they know they are very unlikely to get away with much more bullshit. The may try for a bit here and there, but I think they would truly shoot themselves in the foot - and are fully aware of the fact - if they go back on the essence of what they are saying here. NICE seem to have put a solid peg in the ground here with this.
I also like the way the report actually serves as an excellent single-document comparison of those wanting to change versus those not wanting to. Now that it is out there, the anti-change proponents, and their comments, are clearly shown up as stupid. Which is what they need to be - shown up.
I also like the way the report actually serves as an excellent single-document comparison of those wanting to change versus those not wanting to. Now that it is out there, the anti-change proponents, and their comments, are clearly shown up as stupid. Which is what they need to be - shown up.
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@Barry53 I really hope so.
It's a fantastic step in the right direction but there's still a long, long way to go.
It's a fantastic step in the right direction but there's still a long, long way to go.
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No, there is something else coming soon.
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I think the situation is becoming very interesting and maybe SMILE is actually good news. We are now getting to the situation where the BPS crowd are showing that you can prove anything works in ME if you use their methods. Sooner or later the penny will drop, if not with NICE immediately, with people in psychiatry who can see that Lightning is nonsense, and worse, an affront to their psychotherapists. I wonder what Dr Chalder thinks of the Lightning process being better than her treatment. There is even a suggestion in the Guardian article that Dr Crawley realises she has blown her own cover - saying she was surprised it worked.
As far as I can see the objective of the BPS club was always to provide jobs for psychotherapists and maybe with it to make money. If Lightning is just as good then all that might go down the tube. I think you can become a Lightning instructor with no qualifications. Simon Wessely said to me his only worry was that the NHS would provide cheap CBT using people not 'properly qualified'. Lightning looks to me like a nightmare for Wessely. It is all unravelling rather badly as far as I can see.
As far as I can see the objective of the BPS club was always to provide jobs for psychotherapists and maybe with it to make money. If Lightning is just as good then all that might go down the tube. I think you can become a Lightning instructor with no qualifications. Simon Wessely said to me his only worry was that the NHS would provide cheap CBT using people not 'properly qualified'. Lightning looks to me like a nightmare for Wessely. It is all unravelling rather badly as far as I can see.
I think some of this is shown in their confused response where they don't know whether to support the work of one of their group or not. The real problem for them is that the methodology follows their normal methodology - but to be fair to PACE they did have some objective outcomes so PACE was better.
I did think that LP would get a stronger reporting bias because it is more persuasive at a believe your better and you will be better approach which will lead to increased reporting bias.
I did think that LP would get a stronger reporting bias because it is more persuasive at a believe your better and you will be better approach which will lead to increased reporting bias.
My feeling is that the SMILE media blitz is the second misstep by the SMC in recent months (with the first being Fartgate). Sure, they've generated acres of column inches that reinforce the idea that psychological interventions are helpful for ME/CFS - but in the process they've severely damaged their credibility with the scientific community (or at least those members of the scientific community who take the time to understand how the Lightning Process works).
We don't have to go to the effort of pointing out all the arcane flaws with PACE, FINE, GETSET to the scientific community any longer. We can just say "But these people have also "proved" that NLP is an effective treatment - here's the paper - so how can you take the rest of their ME/CFS research seriously?" That's a far easier argument for us to make and open-minded scientists to understand.
We don't have to go to the effort of pointing out all the arcane flaws with PACE, FINE, GETSET to the scientific community any longer. We can just say "But these people have also "proved" that NLP is an effective treatment - here's the paper - so how can you take the rest of their ME/CFS research seriously?" That's a far easier argument for us to make and open-minded scientists to understand.
Phil Parker in a video recently posted in another thread, when talking about the two different groups in SMILE - SMC and SMC+LP - refers to "these two slightly different treatments" (my emphasis). Not sure exactly why he said it that way, but maybe he was trying to downplay the heavy duty neuro-linguistic aspects of it,.
Sure - but that's why I specifically mentioned 'open-minded scientists'. There are some people who'll continue to believe that ME is psychological even when the biological mechanisms have been fully figured out. As Max Planck wrote "A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather its opponents eventually die, and a new generation grows up that is familiar with it."
(For the avoidance of doubt if anyone from the SMC is reading this, I want to make it clear that *isn't* a death threat - it's a quote from 'The Structure of Scientific Revolutions")
(For the avoidance of doubt if anyone from the SMC is reading this, I want to make it clear that *isn't* a death threat - it's a quote from 'The Structure of Scientific Revolutions")
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I'm hopeful NICE will withdraw support for GET. Their whole reason for being is to decide the most effective treatments and their value for money.
Patient groups are screaming GET doesn't work, it's a waste of time and money, we don't want it. Job done for NICE, easy decision for once.
Normally patients are demanding access to expensive drugs and treatments, like life extending cancer drugs. If I was NICE I'd be thinking, wow, no brainer.
Of course Bristol has been collecting NODs from ME clinic outpatients for 6 years so they have the data to prove how effective their therapies are or aren't. It's very telling they haven't published or used that data as evidence to back up their claims.
Patient groups are screaming GET doesn't work, it's a waste of time and money, we don't want it. Job done for NICE, easy decision for once.
Normally patients are demanding access to expensive drugs and treatments, like life extending cancer drugs. If I was NICE I'd be thinking, wow, no brainer.
Of course Bristol has been collecting NODs from ME clinic outpatients for 6 years so they have the data to prove how effective their therapies are or aren't. It's very telling they haven't published or used that data as evidence to back up their claims.
I agree, this is, we are told, their reason for being.
I suspect their actual reason for being is so Government has someone else to point to as "independent experts" when people don't like "medically related" decisions that affect them.
Various governments have been doing this for a long time in area's they don't want to take responsibility for, they create/appoint fall guy organisations. It is doubtful this is in the public interest, it is definitely in Government's interests.
I suspect their actual reason for being is so Government has someone else to point to as "independent experts" when people don't like "medically related" decisions that affect them.
Various governments have been doing this for a long time in area's they don't want to take responsibility for, they create/appoint fall guy organisations. It is doubtful this is in the public interest, it is definitely in Government's interests.