Discussion in 'General ME/CFS News' started by Dolphin, Feb 25, 2017.
And any other non-therapeutic confounders they can get their hands on.
Placebo effect = effect seen in a placebo control group = everything that can create the appearance that a treatment is working even when it is not.
At least that's how I think about it.
It is one of the things that if she listened to patient criticisms then she could improve the standard of her work. But then if she can get a chair with the work she has done perhaps there is little motivation to increase quality.
1) Dearly beloved, we are gathered here for me to tell you how wonderful I am.
2) My head is this big at the moment.
Wishful thinking: bursting into song:
If I should stay
I would only be in your way
So I'll go but I know
I'll think of you every step of the way
And I... will always love you, ooh
There is motivation to avoid increasing the quality her work, because that would result in CBT/GET being shown to be ineffective. PACE and FINE demonstrate that these are likely no better than placebo, and the idea that pediatric ME/CFS is a different disease than in adults makes no sense (the sample she works with may be different because her case definition of ME/CFS is different). For this reason I don't want her near any biological studies.
For people like Prof Crawley the quality of work is virtually irrelevant - it's all about empire building. It was clear from her talk, no real science in there and no solid foundation to her claims. Wessely and the rest of the BPS gang are the same, we see it over and over.
But the best empires are build on solid foundations. I don't think Wessely will be respected in the future. They should have paid more attention when they were read the three little pigs as children. Empires build on straw don't survive - so you have to keep running.
As we've seen now so many times with BPS; reason doesn't enter into it. Good science is irrelevant. They can count on success through politics. But their problems are actually bigger than PACE. Since Ioannidis wrote his article on poor science replication (sorry can't find the actual article although google provides lots of articles discussing his views) there has been movement toward a growing and more general concern for quality of science and the ability to replicate results in research. The BPS clique are sensitive to the second concern and not so much to the first.
As various interested parties start to attempt a clean up let's hope PACE becomes the poster child we all hope for and deserve.
"we've made some progress and I can tell you so far that we know that social adversity, lower social economic
class, are strong predictors of developing chronic fatigue syndrome. We found new evidence unlike other
researchers that child abuse or trauma predicts chronic fatigue syndrome."
I apologise in advance for harping on about this but it is bugging me, given that it seems possible that she is to become the MEGA expert on adult ME.
Even if the criteria used be those for Crawley's Fatigue Syndrome (I forget whom we have to thank for that-I expect that @TiredSam was involved) one would reasonably expect there to be more children with CFS who had not suffered abuse or trauma. So not having suffered abuse or trauma is also a strong predictor for CFS. That's a helpful idea then. Who was it described the fallacy of inductive reasoning? David Hume?
As for lower socio economic status I suspect that it is a predictor for CFS in the same way that it is a predictor for membership of an English Conservative cabinet. Only three more years, the next election, until we are reintroduced to X - the son of a coal miner- and Y - the son of a bus driver. Eton will probably not be mentioned.
Such a frightfully English explanation of illness is socio economic class. I expect that the ALSPAC data record the observation of the child's oral cavity after birth to determine the presence, or absence, of a silver spoon.
By sheer coincidence social adversity, lower social economic class, child abuse or trauma are also strong predictors of vulnerability to sociopaths like Crawley and also strong predictors of how likely a career-minded sociopath like her will be able to do what she wants without being held accountable. Funny how she's honed in on such groups like a radio 1 DJ to a bouncy castle.
Well that can't be true because despite her best efforts to traumatise and abuse as many children as possible by wrongly categorising them based on their parents' answers to loaded questions on the phone they still don't have CFS.
http://forums.phoenixrising.me/index.php?posts/782675/ New disease Crawley Fatigue Syndrome although this could be interepreted differently..
Has this been posted? Didn't want to set up a separate thread in case it had.
Children’s experiences of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME)
A systematic review and meta-ethnography of qualitative studies
Parslow, R, Harris, S, Broughton, J, Alattas, A, Crawley, E, Haywood, K & Shaw, ARG, 2017, ‘Children’s experiences of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME): A systematic review and meta-ethnography of qualitative studies’. BMJ Open, vol 7.
Objective:To synthesis the qualitative studies of children’s experiences of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME).
Design:Systematic review and meta-ethnography.
"Unfamiliarity of the condition, problems with diagnosis and felt stigma prevent children from forming a new illness identity. Children adopt coping strategies such as building credible explanations for their illness."
'Meta-ethnography is a method for combining data from qualitative evaluation and research, especially ethnographic data, by translating concepts and metaphors across studies'
So not science then.
One step removed from science... The outcome really depends on the quality of the underlying studies and the quality of the synthesis procedures.
A message to Esther - all criticism of your work isnt illogical or from vexatious militants. You create this narrative of vexatious complainers, never achknowledging good critque of your work - and there has been much. Just as you want to continue doing your work because you think "its right" so too will I and others continue flagging up bad science, poor methods, potential harms, or doggy findings, from your work or by others - as this too is "right" and its healthy in science.
Very interesting that Peter White lead of the PACE trial helped her get her first grant - I think that really speaks for itself.
Esther Crawley doesnt achknowledge that those campaigning against her trials (something I have not personally been involved in) are patients/sufferers too, or family members, and they too deserve respect, not her outright blanket dismissal. She says there are lobby groups opposed to MEGA and SMILE and MEGENTA - these patients should be listened to.
Esther plays the victim well - perhaps influenced by the Science Media Centre circular to promote views int he media of harrassment but she is very much a power broker - she was on the NICE advisory team, she has been involved with the NIHR, she has a senior researcher grant from the NIHR, she has had millions in funding, no1-2 funded researcher in CFS in the UK, she has been involved with the MRC also, she is deputy of the UK CFS/ME research collaborative, so her claims of being the victim must be looked at against how much she's been given , perhaps assisted along the way, also. I know of many other CFS/ME researchers who struggle to get any funding at all.
The majority of her talk was based on emotive sentiment not science - a simple side by side comparison of her talks with those of Montoya or Jason expose her work for what it is.
I have seen a remarkable coincidence of late, in the narratives from the CBT-GET promoters - Esther Crawley gives a talk saying her grandfather, a WW2 pilot inspired her, recently Simon Wessely says his father came on a train from Eastern Europe after fleeing the Nazi invasion - both interesting stories, but they both then link this to the opposition of ME/CFS sufferers to their work - ie they project a claim that they are fighting in a similar way, this I really take exception with - fighting Nazism, or leaving Europe to save a life, is in no way comparable; ME/CFS sufferers are in fact fighting for their rights and UK researchers should take care to get the analogy the right way around - in fact, in my view its the ME/CFS sufferers are called militants who are the real victims and have more in common with your couragous parents and grandparents than the two Oxford educated doctors in question.
Sorry for the bad joke but couldn't resist
Cats are more critical of bad science.
I put a spell on you ...
See! By only using the power of my mind and the correct belief system I can make this giant harmonica appear invisible ...
After CBT, the recovery was THIS big.
You can also try a Google Site Search
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