Hi. My son is an academic and now lives in the Netherlands. (Our family is from the UK.) He is involved in Human Rights Law. He often gets involved in heated conversations regarding research ethics. Well, he currently has some time on his hands. He has asked me if I know of any Dutch studies in ME/CFS similar to the Pace Trial, with methodological flaws etc. Any information you are able to provide will need to be accompanied by rebuttals and explanations of why the 'science' is so bad. In that respect, summaries written by other academics/journalists would be better. I've been looking through David Tuller's work. Boy there's a lot! I might send my son some links from there. But if any of you could point me to the most appropriate ones from David's work, that would help too. I hope you will be able to help me provide him with some ammunition!
Oh boy there's a lot. Apart from the newer work done by some groups with a Long Covid focus and the older work by van Campen/Visser all dutch studies are essentially flawed. I'm sure @Grigor has a great historical knowledge of the abundance of crap. I'm also tagging @Lou Corsius and @dave30th . A very recent study that stands out is the following "Efficacy of Cognitive-Behavioral Therapy Targeting Severe Fatigue Following Coronavirus Disease 2019: Results of a Randomized Controlled Trial" which has been discussed here https://www.s4me.info/threads/effic...rial-2023-kuut-knoop-et-al.33229/#post-474071 in quite some detail. I think it's a good starting point, because It's one of "those" studies and it's very recent. Other researchers have written a response to this study, critising it. David Tuller has extensively written on it (starting in 2020 https://virology.ws/2020/08/08/trial-by-error-and-now-no-surprise-cbt-for-post-covid-fatigue/ and more recently here https://virology.ws/2022/02/04/tria...544.471782429.1698948308-852297018.1698948308 and here https://virology.ws/2022/01/07/tria...544.471782429.1698948308-852297018.1698948308). The well known Hans Knoop has recently even been criticised at conferences by FND colleagues when presenting these results. Knoop has also invented statements in his presentation that were never part of the study (mentioned here https://www.s4me.info/threads/news-from-the-netherlands.15014/page-6). Thank you to your son. I'm sure we can provide him with so much ammunition that it will even be "too much too handle".
Thank you so much for your prompt response. I think I will wait for more of your contributions and then send him a link to this thread. ... so please keep it coming!!
I can't remember where it was from but there was a GET study that showed no objective improvement using actigraphy, it was the trial that put the PACE researchers off from using objective outcomes.
Thanks David. I'll let him know! You and I met once in Sheffield where you were doing a talk, I don't know if you remember. (Carol Binks and Peter Trewitt were both there.) It's a few years back, now. Then you met my youngest son Jonathan, in Leiden ... or was it the Hague??? ... where you were also doing a presentation during Millions Missing. (He was at Uni at the time.) But it's not that son that's asking for info! The one that is asking these questions is my eldest, Benjamin (age 34). He has links with Tillburg and Utrecht Universities. Some of his friends are now poorly. (Long Covid?) Also academics. They are getting no help from the medical system. One is particularly poorly and is getting absolutely nowhere. (I think she is quite shocked at the level of dismissal she has experienced. She was just not expecting this.) They all are digging for information. And they are smart. So, I just want to provide them all with a short list of the most salient information.
I've written a lot about the Dutch studies. Starting with the 2011 comment from Knoop and Bleijenberg that accompanied the PACE trial report in the Lancet. They were doing awful work before that and then more afterwards. As were their colleagues. I'll try to look through and pick out the ones involving Dutch studies. The Dutch Q-fever study is also bad--also Knoop. In three studies of CBT in early 2000s, the teams all hid their null actigraphy findings and then published them only years later, concluding that actigraphy is a bad measure for "fatigue" because patients report less "fatigue" but don't move anymore. they're arguing backwards.
Wiborg, et al. 2010. They are indeed arguing backwards. Their claim is that because subjective self-report fatigue was not correlated to objective actigraph measurements, therefore it must be the objective measure that is wrong or irrelevant, not the subjective measure. But if anything that finding falsifies the claim that subjective self-report of fatigue is a reliable and relevant measure. It shows the contrary case, that it is neither reliable nor relevant, and is in fact highly misleading.
Effectiveness of psychosomatic therapy for patients with persistent somatic symptoms: Results from the CORPUS... 2023 Wortman et al This recent one is flawed in many ways. Ethical issues include issues with free prior informed consent, considerable bias in the data that are reported and claiming a treatment works when there is no evidence that it does. I'd love to see someone dig into that trial, including by digging into what participants were told about the nature and efficacy of the treatment prior to them agreeing to be part of the study.
Got nothing to add at the moment, just that it's great that your son is showing an interest @Lidia Thompson. The more people that are well informed and able to challenge these narratives, the better.
It feels a life time ago. I had a great sense of achievement getting there, it was the first such event I had been able to get to for a number of years. @dave30th ‘s clear setting out of the flaws in the PACE methodology gave a sense of optimism, though sadly PACE itself still stands and other researchers continue to churn out a seemingly endless stream of equally flawed studies designed only to confirm the researchers’ beliefs as illustrated by the papers cited in this thread. At least we have the new NICE guidelines here in the UK, but I guess none of us then anticipated the pandemic and Long Covid.
I already see 2 papers published here. One about the Qure study and one CORPUS. There's also FITNET that even the PACE-trial authors themselves criticized. https://www.mdpi.com/2076-328X/7/3/52
