Discussion in 'General ME/CFS News' started by Andy, May 20, 2019.
I defy anyone not to chuckle when reading that intro. Followed by this gem of a phrase in the next sentence ...
Conjuring up as it does images of promiscuous goings on, a pretender to the throne, and the "b" word.
Splendid writing, just splendid.
David Tuller: Trial By Error: My Follow-Up Follow-Up with Dr Segal about LP Study Citation
5 June 2019
By David Tuller, DrPH
Fans of Bristol University’s team of pediatric ME/CFS researchers could be forgiven if they hoped a recent citation of one of the group’s most high-profile studies would help bolster its wobbling reputation. Yet the suggestion that the Lightning Process is an “effective” treatment for kids–highlighted in the abstract of a pediatric review of “CFS/ME”–has focused renewed attention on the illegitimacy of both the claim and the study on which it is based.
Archives of Disease in Childhood published the study online in September, 2017. In December, 2017, I documented on Virology Blog that the investigators violated multiple ethical and methodological principles in the trial itself and the subsequent paper. Specifically, among other concerns, they recruited more than half the participants before trial registration, swapped primary and secondary outcomes based on the early results, and then failed to disclose these irregularities in the published report. This cannot be considered proper science. The study should never have been published. It should now be retracted and the situation should be reviewed as a possible case of research misconduct. The reported findings, such as they are, should not be used as the basis for clinical guidelines or public policy…
Simple as that. Really shameful behavior from people who really, really should know better, in fact have been trained for and are well-paid precisely because they are expected to know better. I think Segal deserves a hearty passing BOOO here. I'd give one to Crawley as well but she has clearly transcended the ability to feel shame. Lots of people revealing themselves to be completely unworthy of the responsibility of being a medical professional. Brings shame to the entire profession.
I really wonder what the aftermath of this will be in Norway, where it seems the entire medical establishment is promoting this quackery, or at least is fine with its promotion as credible science.
It's not going to be pretty. Bristol and BMJ will look spectacularly foolish and incompetent here but it seems to be on a whole other level over there.
I can't help but picture a raid on a stopped-mid-way orgy, with bright fluorescent lighting on sights that should never have seen anything brighter than passing slight illumination. Lots of floor-gazing, for sure. Hopefully some navel-gazing as well.
I really hope this leads to academic work trying to understand how smart people can delude themselves in what may just be an actual, legitimate, case of mass delusion. How do things even get this bad? A century ago, sure. But now? No excuses here.
This is all becoming very strange. Segal must surely have seen that she had an opportunity to extricate herself without undue damage. All she needed to do was admit to not having noticed the caveat. Dave has made it easy for her by emphasising the degree to which the caveat was obscured. Her part in this would soon have been forgotten. However the window is quickly closing.
Presumably a problem with deploying that defence is that it further weakens thee position of the Journal in which the LP paper appeared-a journal in which she seems to have papers published. It would show the caveat to be worthless. An unfortunate dilemma.
Is there furious activity behind the scenes....or total inertia?
I have tried to give Dr Segal the benefit of the doubt. However, I can also say that I would have thought an expert in the field would have known or heard about the editor's note, given that it's been up for a year. She has not bothered to clarify what happened or what she thinks. the longer she is silent, the more questions it would seem to raise.
Even without having noticed the editor's note, anyone who seriously finds nothing wrong with LP being trialled this way has some serious self-reflection to do. LP is no more credible than scientology. Either Segal knows what it is, and therefore shows horrible judgment, or doesn't and therefore promotes a black box quack treatment, the details of which are a trade secret.
Either way it's shocking incompetence. A minimal ability to exercise judgment is expected here and the failure is inexcusable. Toying with people's lives this way is incompatible with the entire point of medicine.
It may be so, but when trying to achieve an outcome it is sometimes best not to express ones views too forcefully.
from an article in the Mail, something else Crawley said
"But she cautioned that there was no evidence the course would work or that it was not harmful if undertaken on its own, without medical care."
This (ie the fact that it could be harmful) seems to have been completely overlooked.
How EC can continue to persuade herself and others that she is doing it all 'for the children' is beyond me.
The article also says:
So if it's not available on the NHS and is taught by non-medical practitioners, what exactly does Crawley mean by "without medical care"? Surely this isn't Crawley-speak for "withut coughing up your money to an LP practitioner"? She's basically saying the magic only works if someone's getting paid for it, and if you try it without handing over your money to someone you'll be cursed.
It (those statements together) could be taken as a frank admission that LP is dangerous when carried out by a LP practitioner.
PACE. Rousing reassurance. LP. The Secret. It's all the same BS underneath.
Not infrequently those who have benefited from LP suggest that those who have not benefited or do not undertake LP are negative, defeatist etc. This is cruel and hurtful to many ME sufferers and importantly does not stand up to examination, even in the world of ME/CFS "headologies".
LP is reliant on testimonies from its beneficiaries. There are numerous therapies on the market for ME/CFS sufferers, similarly reliant on testimonies. If negativity were the issue, those who claim no benefit from LP would not go on to claim benefit from Gupta, Rowan Bodymind, MT, RT etc., yet some do (and vice versa). I am not advocating or criticizing any of these here, but motivation is unlikely to have been the issue or they would have failed at all such therapies.
LP, Rowan and Gupta share many similarities but since some patients have/claim success with one and not the other, appropriateness of the therapy was probably the central issue. These therapies differ somewhat in concept (not perhaps greatly). They have some differences in delivery/practice and presentation seems to be important to individual outcomes - all according to the type testimonials/reviews on which LP relies. However that may be, "I did well on therapy X, but not on LP" is not the testimony of a demotivated, negative, defeatist person. Thus, even in the world of ME "headologies", LP insinuations/accusations of defeatism etc. do not stack up.
Of course, since belief/commitment to LP is part of the cure, this may rarely if ever be admitted by individuals who have benefited, but they could testify, if they wish, without attacking others.
All insinuations of negativity if you don't do well at LP or do not do it should be condemned and discouraged immediately by LP and particularly by any NHS associated practitioners/researchers.
For my part I believe LP etc may help some with a diagnosis of ME and am glad for them but ME/CFS is not as yet properly sub-grouped and none of these therapies should claim to treat ME per se or promote accusation of failures/refuseniks.
The broad issue of demotivation as a problem among the chronically ill is a legitimate area of concern: the equation "support/do LP or you are demotivated/negative etc." is an entirely illegitimate accretion.
There is a Facebook group called "True stories about the Lightning Process" where accounts of experience of those with ME did not gt better/got worse on it.
Could be a useful reference for those who are thinking of trying it.
War, violence, poverty, illness. None of it is a problem if we choose not to care.
Segal has now had a month to respond, and her editor has had more than three weeks. It can probably now be said that they have lost the benefit of the doubt.
I don’t have a twitter. If someone has the time and energy it would be useful to document on this thread what kind of response has resulted?
Separate names with a comma.