Bob
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I can't see inside White's head, so I can't say, and we need to look at the White letter when it comes out, but it looks like from the quote that he slipped and admitted he wasn't studying ME (aka "CFS/ME"). This single admission will not blow everything up, but it is very helpful in arguing exactly what he said- that Oxford "CFS" is tired people and does not define ME. This is useful in arguing against PACE and against the current NICE guidelines. I do understand what you are saying that NICE embraces the fake "CFS" definitions to the exclusion of the best ones (CCC). There were plenty of flaws in the study other than selection criteria, true. I just feel that we would be best served sticking to the 'fundamentals' and hammering away at that every time we advocate, until they are resolved.
I consider the fundamentals to be that the name of ME was inappropriately changed by CDC to "CFS." CDC, NIH and the UK psychs carry on a campaign for years of straight up lying about "CFS". Then a more subtle strategy is adopted- With Oxford 1991, Sharpe et al. change the definition in the UK of "CFS" to mere Idiopathic CF. Then they do all these studies with this fake definition and write tons of review articles incorporating these fraudulent studies. They claim that CBT/GET are the only evidence-based therapies proven to work, based on these fraudulent studies. Unfortunately, CBT and GET are the worst thing you can do for ME since it tells the patient he does not have a physical disease and ratcheted up exercise is the only proven treatment, so it is forced upon the ME patient, worsening the disease.
CDC saw that the UK psychs had great success with their patently fake definition, so they made up their own- the Reeves criteria, and started doing studies to increase the amount of fake data. They are carrying out this scam of using fake definitions in broad daylight. We need to shine even more light as intensely as we can on this fundamental basis of their scam until it is recognized by a critical mass of the medicine/science community.
I think we need to focus on these fundamentals because it is hard enough to get people to understand and believe that this has been done. If we start adding in a lot of other arguments then these important points can be lost. Of course, if one is doing a complete, detailed critique, one can add in some other arguments, but keep the focus on these main points.
If we persuade medicine and science to fix these problems and throw out the fake studies, we will have accomplished a huge amount and can then move forward with real science. Until then, we will forever have a jumble of real and fake science which is practically useless clinically.
If, instead we make all the arguments without strongly highlighting the 'central' arguments, then I believe the vast majority will not be convinced because they will become confused with all the arguments and data. In their defenses, White et al. focus on the problems other than selection, and reviewers will probably come away with White's idea that the extent of improvement is in contention, but that CBT/GET is the only proven beneficial treatment, so it should be used because it may provide some benefit, even if small.
We need to emphasize that these 'treatments' are like poison to pwME and will worsen the disease. If people are persuaded of this then there will be informal resistance in applying the guidelines and eventually the NICE guidelines will be changed.
I understand and agree with your points Justin.
But this is a discussion forum, where I thought that issues were supposed to be discussed and explored, before arguments and cases were finalised.
I don't believe for a minute that White's comment was casual, and if it was then he will probably withdraw it. What's important is the evidence in the paper, not a single comment of White's which he can withdraw at any time. If he sticks by his comments, and we can use them in our favour, then that will be great news. I look forward to him campaigning for NICE to separate ME from idiopathic fatigue and dodgy CFS definitions.
I do believe that the issue separating ME and Chronic Fatigue is a very fundamental one, and it goes beyond just arguing the case with the Lancet, who aren't interested in what we have to say. It involves taking the case for change to the government and government bodies.
There is a strong case to be made against the study and the authors, that they are endangering the health of ME patients by saying that CBT & GET are safe and effective, and it's a case that definitely needs to be made. I'm very grateful for the work that Hooper is doing, and Angela is doing on this.