I do think she has lost all perspective her comments on GET not being about increasing activity and some of here theories of how LP/CBT help seem quite bizarre and with no supporting evidence.
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"Got ME? Just SMILE!" - Media coverage of the SMILE trial…..
- Thread starter charles shepherd
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I do think she has lost all perspective her comments on GET not being about increasing activity and some of here theories of how LP/CBT help seem quite bizarre and with no supporting evidence.
Jonathan Edwards
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And remember that she also said that more exercise was good for reducing inflammation (even if there is none). I don't think she would last very long being cross examined by Rumple or Perry Mason, or indeed any real barrister around these parts.
I hope so! I am not criticising people who go to these meetings to challenge the BPS model. I can see a value in that (as it might influence the ignorant in the audience, or the people who are not hardline psycho-social-ists). It is more that I think it is important not to be lulled into thinking that that is where real change will come from, or that the BPS crowd will ever change their minds. They have nailed their colours firmly to the mast and seem unwilling to let go or admit any fault. They will need to be pushed out of this area, or at least not actively supported, as I don't see them going willingly.
Afme, I think, did a lot of damage over the years going along with this idea, that we just need to reason/work with the BPS crowd and we will be fine. Afme's support for the PACE Trial might have been critical for it to get funding (I think it was turned down initially, but got funding after Afme supported it), even though any idiot should have known how that was going to pan-out, and they did not kick-up when fundamental changes were made to the outcome criteria.
There was a lot of shenanigans as well with the MRC years ago which they did not do anything about. This was in the early 00's.
For example, the MRC had a fairly detailed questionnaire for ME/CFS patients asking them what sort of research they would like, but then they "disappeared" the results from their final report. Someone I knew at the time had to do a bit of digging to get the results. From memory, basically patients wanted research into the biomedical side and the cause, but the MRC wanted to fund behavioural nonsense so the results of the questionnaire didn't suit them. Afme just went along with this stuff as far as I can remember (certainly they made no real effort to do anything about it). My memory of it is that the MEA spoke out about a lot of this at the time, but the connivance of Afme did a lot of damage as the MRC could claim patient support for what they were doing.
There was a lot of issues with the new CFS clinics also.
[Slight disclaimer, this is all of memory and my evidence is on another computer. I normally check stuff like this. I was in a group leaders internet forum at the time and you could see how this was going to pan-out at the time, though I would never thought that we would reach the lofty heights of the SMILE Trial
It was pretty much every patient group on one side, wanted the focus on biomedical research and opposed to the BPS model of ME, versus Afme, AYME and one local group who were into collaboration, which turned into essentially promotion of the BPS crowd. They often ended up talking the double-talk just like the BPS crowd (e.g. claiming they don't really think it is all in our heads) because they were so desperate to believe that these researchers were going to produce valuable research. I do think some of these people went down this road in good faith (for some it was just a job so I don't think they cared either way), but no matter what the BPS crowd do these patient groups just kept on the same path. Kept supporting funding going to the BPS model of ME no matter what they said or did. ]Some people get very taken-in at the idea of having a seat at the big boys table, like they are awestruck. This is understandable, but it is important to keep our wits about us. I think this can be difficult to be honest. People have limited energy as well so they need to focus it wherever they think is best.
I do appreciate all the work that you have done for us @Jonathan Edwards and you strike me as someone who would not over-awed by such a scientific wonder-child as Esther Crawley
I think one problem is with people who are either totally new, so don't know the history and might be naive, or even people coming from decades of activism in the ME world, we are so desperate for hope we might be too willing to be over-grateful for any crumbs off the table while we are being stabbed in the back. It does look like there might be some change about, but to be honest I will believe it when I see concrete results on the ground. Apologies for the length of this.
BurnA
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But where do good intentions lead.?
The CMRC has nothing to show for it's existence, ( not even a website) so patients have lost more years while the CMRC allow their Vice Chair to spout on about the lightning process.
According to David Tuller, Stephen Holgate said they can't take a position on anything because they aren't a formed entity of any recognised sort. When pushed, they said EC has the full support of the board.
I don't think even the most sceptical or ardent critic amongst us could have dreamt this nonsense up.
Wonko
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Surely EC having the full support of the board is a position, that they can't take, not being a formed entity.
A.B.
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If the CMRC have good intentions they should publish a position paper which clarifies their intentions, research direction, and focus. This document must not leave any doubt about whether they support BPS oriented research or not because BPS texts are often vague and employ deceitful language. We need clear unambiguous statements from the CMRC that the BPS model has been a scientific failure, disaster for patients, and that the focus needs to be 100% on biomedical research. PACE needs to be condemned as pseudoscience.
The UK is awaiting its own IOM report.
If the CMRC thinks we're unreasonable to make such requests then they should consider that decades of abuse have occurred. People ended up in wheelchairs because of bad science and dishonesty. Failure to condemn this looks a lot like the catholic church taking every opportunity to downplay the sexual abuse problems they had.
The UK is awaiting its own IOM report.
If the CMRC thinks we're unreasonable to make such requests then they should consider that decades of abuse have occurred. People ended up in wheelchairs because of bad science and dishonesty. Failure to condemn this looks a lot like the catholic church taking every opportunity to downplay the sexual abuse problems they had.
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Mrs Sowester
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We judge ourselves on our intentions, others judge us on our actions.
Jonathan Edwards
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I do appreciate all the work that you have done for us @Jonathan Edwards and you strike me as someone who would not over-awed by such a scientific wonder-child as Esther Crawley
The point about newbies is well taken. It took me a while to see the lie of the land.
A point I might make is that I know Esther pretty well because she was our registrar. My guess is that if anyone comes up with some immunology for ME she will say goodbye to BPS overnight and start measuring cytokines - which she is good at. There is something we call a 'fast-follower' in biomedical science.
Invisible Woman
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.....or self serving as I like to call it.
But the public will take it at face value - no journalistic querying of this or what LP actually entails. We live in an increasingly soundbite driven society.
NelliePledge
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I believe I saw a comment from @charles shepherd that Montoya actually paid his own air fare
Jonathan Edwards
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OK, he had a good excuse to meet the Biobank people.
In a few months it will all boil down to "The Lightning Process has been scientifically proven to be an effective treatment for M.E." In the unlikely event of anyone actually being asked for details to back up this claim, the existence of the paper will suffice. No-one will ever actually read it. Esther Crawley knows this.
Jonathan Edwards
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I cannot see NICE underwriting paying for it, which is where the fun starts.
Mrs Sowester
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Desperate parents will pay for it. More children will suffer.
The paper needs retracting.
The paper needs retracting.
No, but a slightly thicker skin might help
. Abusive posts get rightly moderated, but honest fact-seeking discourse (including hard hitting non-abusive variants) is always welcomed. Not confusing the two is a prerequisite . I'm not a moderator by the way.I've seen glimpses of this, but to my unaided eye it seems no more than that. Can you elaborate at all?
Large Donner
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They wont have to pay for it (LP) if its a recommended treatment but nobody bloody uses it. Its a damn site cheaper than doing tests for a whole host of neurological/immunological diseases.
We keep getting this phony narrative that "functional symtoms" account for 50% or more of GPs time.
If the BPS crowd manages to get crap like this into the guidelines its just a step on from fatigue clinics for all via CBT/GET which is where we are already.
There is no doubt the BPS crowd would be happy with that and thats what they have been trying to achieve for years.
I am just a little bit nervy that the NICE decision to review cannot be turned into a much more surreal situation.
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Wonko
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That's incredibly easy to fix, I can offer a solution, for free, which would stop GP's time being used in this manner in one simple step.
Remove the designation "functional syndromes", assume people actually aren't delusional, figure out what's wrong with them, and treat them accordingly.
Result, no (0%) GP time used dealing with functional syndromes.
Increasing the amount of things classified as functional syndromes can only ever increase the amount of time GPs spend treating functional syndromes, the obvious solution is , stop it, now, and reverse the hostile takeover of medicine being attempted by BPS