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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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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.Frankly, I wouldn't put it past them.
I think this, and the NICE report, clearly shows that support for BPS'ism is slowly but steadily withering.Though still adhering to a BPS model, BACME is asking for a review.
A bit muddy, and still far away from what we would like, but shows that even BPS professionals are now willing to clearly move away from the PACE model.
I'm a bit more amenable to that. What would we actually thank them for - for finally not being the complete aerosols they have been up until now?IMO I would suggest a statement that we welcome it - I'm not sure thanking them is appropriate until we see what they come up with, and maybe, how they come up with it.
Me too. And I agree entirely. When running a race you absolutely must not ease off until over the finish line.@Barry53 I really hope so.
It's a fantastic step in the right direction but there's still a long, long way to go.
Is it the good news you were refering to @Jonathan Edwards ?
Or can we expect more interesting things this week?
Great! Need some good news after SMILE.No, there is something else coming soon.
Don' t forget FITNET and the push for online CBT for this and many more medical conditions. Coupled with the whole MUS picture i would not be celebrating yet.Hope they don't update it to recommend LP...
Great! Need some good news after SMILE.
Don' t forget FITNET and the push for online CBT for this and many more medical conditions. Coupled with the whole MUS picture i would not be celebrating yet.
Exactly.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.
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 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.
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,.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.
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.
Unfortunately, some will also take that as a proof that ME is psychosomatic, "even a quack therapy can cure ME because these people are a bunch of hysterical/hypocondriac/neurotic patients."
I agree, this is, we are told, their reason for being.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.