"cfs researcher" is a troll whose job it is to spread propaganda and discredit the "opposition".He is not looking for a battle or he would be here debating with us.
I'll just draw y'alls attention to this again.They found that LD hydrocortisone did produce a small effect on lowering CFQ score. They claim it as a success, but right at the end, they say, "we would not recommend the widespread use of hydrocortisone as a treatment strategy." Reason, because they claim that CBT is more effective. Extraordinary.
"We did a lot of biological studies you can see from the paper list on the website. We published on vitamin levels, the autonomic nervous system, HLA antigens and other genetics papers, growth hormone, why you need to test for celiac disease, anti nuclear antibodies, neuro imaging, DHEA and others. No, we didn't find the elusive biomarker, but it was not for want of trying."
So this is his spin against those critical of the emphasis given to psychological research? He hasn't referenced the papers for us to look through them, but I remember looking at the autonomic one specifically because he had mentioned it previously as evidence that he does not just focus on psychological research. Its worth bearing in mind that its a follow up study, after others had already found evidence of this abnormality. This is from the conclusion:
We conclude that some autonomic dysfunction is present
in CFS patients, the most likely explanation being physical
inactivity. Testing patients before and after physical activity
is restored, such as with graded exercise therapy or cognitive
behaviour therapy, could help confirm this suggestion
If that's the conclusion he wants to argue for, that's up to him, but I don’t think he should act like these sorts of papers are not part of his psychological work, or the promotion of the view that CFS is best treated as a cognitive-behavioural problem. Given this conclusion, it's utterly unsurprising that other UK researchers showed little interest in this area prior to Newton's recent work.
"And we did psychological studies as well. We published papers showing differences between CFS and depression, but also in a long series of work spanning many years established that previous depression increases your risk of developing CFS later in life, or after you are exposed to an infection, something confirmed in several studies now. We looked at personality linked to the yuppie flu stereotype was a perception that sufferers tended to be perfectionistic, hard driving people. We found that once you controlled for the effect of chronic illness, there was no such thing as a CFS prone personality. We also showed that our patients were not anti psychiatry, which was in contrast to some of those who were writing about this on the internet."
And we did psychological studies as well? As well as the clearly non-psychological studies above? How much of this is just uncited spin that would be a chore to properly check up on? This is a very strange summary of his psychological work, and would seem to imply that he had moved people away from viewing CFS in psychosocial terms. He's rather ambiguous about the findings on CFS and perfectionist all-or-nothing mentalities, isn't he? It almost sounds like he's saying he debunked any association. Someone reading this without having read Wessely's work would end up with a very strange view of his impact upon the lives of CFS patients.
I also feel uncomfortable with the reference to Hannah Arendt's study of Eichmann when talking about the responsibility of today's scientitsts. The PACE investigators' and defenders' unwillingness to accept their responsibility of the harm they did to so many sufferers is an important topic. We do not need to refer to Eichmann to demonstrate their scientific mistakes and their unethical behaviour [ETA2: or their unwillingness to see their behaviour as unethical].
They found that LD hydrocortisone did produce a small effect on lowering CFQ score. They claim it as a success, but right at the end, they say, "we would not recommend the widespread use of hydrocortisone as a treatment strategy." Reason, because they claim that CBT is more effective. Extraordinary.
Workwell considered this and decided a CBT/GET trial was unethical.I think we can run PACe and GET with the 2 day cpet as a primary outcome measure, it will debunk PACE and give us great data to understand PEM.
I like to distinguish between evil deeds and evil people. Some of the "evil people" in history have been dogooders. They mean well but the result is still evil. I take a pragmatic approach to evil. If something produces substantially more harm than good, as in harms a lot of people or even a single person to a great degree, the act is evil. The person is only evil if they knew the consequences beforehand. It is less clear if they did not know beforehand, and then learned about it, and covered it up. Is this evil or just amoral? Or a bit of both?I thought that there was an interesting philosophical point being made in terms of whether one can do evil without being evil.
i appreciate tremendously people posting the twitter messages. They seem terribly important to me and I don't have the mental capacity to engage with twitter. So thank you!posting for those not on twitter who might be interested
Yep. They have no plausible deniability whatsoever. There is not the remotest possibility they can say they were not warned, repeatedly and going back decades, about the harm they are doing.The main players in this game know exactly what they are doing.
I am in the camp that thinks it is best to avoid them. They are unnecessary and just give your opponents an opportunity to play victim and waste precious debate time.Furthermore, I hope that with Mike Godwin joining the forum, this could in the future prevent Nazi comparisons in forum discussions. IMO, issues that can be reasonably discussed without referring to Nazis, should be discussed without references to Nazis.
Yes, I have the same problem as @Daisybell. To me, malevolent intentions are part of the definition of evil. You can't inadvertantly do evil, while all the time believing what you're serving a wider, worthwhile purpose. Then its acting abhorrently, not evil.For me, the term ‘evil’ assumes malevolence. I think it’s entirely possible to do something that is very harmful without there being malevolent intent. I also think that it is possible to stick to a viewpoint which is harmful without malevolent intent. The interesting question is, for me, at what point does sticking to that viewpoint become unreasonable? How do you persuade someone to come out of the corner into which they are backed? How far does saving-face, or trying to avoid fracturing one’s world go before it breaks? Does it always break?
i presume he had in his head his idea of what ‘normal’ was when he wrote it? Presumably he also has a robust set of evidence ...oh no I just checked the abstract it looks like it’s just a load of unsubstantiated opinion with a lot of waffle around some dodgy low sample non controlled self reported ‘tests’ resultsWonder how they would all score on MADS?
"The Maudsley Assessment of Delusions Scale (MADS; Wessely et al., 1993) is a standardized interview that assesses eight dimensions of delusional experience. The belief maintenance section of the MADS inquires about the evidence for the delusion, and two of its items have been used to measure aspects of belief flexibility (the possibility of being mistaken, PM, and the reaction to hypothetical contradiction, RTHC). The evidence for the delusion cited by participants is sensitively discussed, and they are asked whether it is at all possible for them to be mistaken about their delusional belief. The interviewer then asks how they would react in a hypothetical situation if some new evidence were to be generated which contradicts the delusion. If they report that this would alter in any way their level of belief, this is recorded as belief flexibility, each item dichotomously scored (yes/no). The scale has very good interrater reliability (Wessely et al., 1993), and kappas for these two items are reported as excellent (PM kappa = 0.91 and RTHC kappa = 0.90)."
(No doubt SW thought the acronym hilarious.)
Wonder how they would all score on MADS?
"The Maudsley Assessment of Delusions Scale (MADS; Wessely et al., 1993) is a standardized interview that assesses eight dimensions of delusional experience. The belief maintenance section of the MADS inquires about the evidence for the delusion, and two of its items have been used to measure aspects of belief flexibility (the possibility of being mistaken, PM, and the reaction to hypothetical contradiction, RTHC). The evidence for the delusion cited by participants is sensitively discussed, and they are asked whether it is at all possible for them to be mistaken about their delusional belief. The interviewer then asks how they would react in a hypothetical situation if some new evidence were to be generated which contradicts the delusion. If they report that this would alter in any way their level of belief, this is recorded as belief flexibility, each item dichotomously scored (yes/no). The scale has very good interrater reliability (Wessely et al., 1993), and kappas for these two items are reported as excellent (PM kappa = 0.91 and RTHC kappa = 0.90)."
(No doubt SW thought the acronym hilarious.)
That is so very true. If this were to ever go before a jury one day, I think much of this would be demonstrable "beyond a reasonable doubt".The notion that the PACE authors do not know that their treatment is ineffective is not credible.
One does not accidentally switch outcomes in a way that inflates recovery figures by a factor of four (If I remember right), then tries everything they can to prevent independent scrutiny that would reveal the original recovery figures.
Edit: Included more of Home Office quote.The Home Office said:Circumstantial evidence is not necessarily weaker than direct evidence if there are number of circumstances that together can lead the court or a jury to a guilty verdict. R v Exall (1866) states that:
‘One strand of a cord might be insufficient to sustain the weight, but three stranded together may be quite sufficient of strength. Thus, it may be circumstantial evidence – there may be a combination of circumstances no one of which would raise a reasonable conviction, or more than a mere suspicion; but the whole, taken together, may create a strong conclusion of guilty, that is, with as much certainty as human affairs can require or admit of’.
This means that, even though you may only have circumstantial evidence, if there is enough of it, then altogether, it may be enough to prove guilt.