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I agree, and I've read your blogs on the CFQ. I think it's nice to have NHS data to demonstrate what happens when you try to use a tool that can't measure change to measure change. There are some who only get convinced when they see numbers, no matter how strong or incontrovertible the...

@Lucibee Table 3 in the supplementary material to Collin and Crawley’s 2017 paper demonstrates exactly the effect you suggest, where a decrease of 2 points on the Chalder Fatigue Questionnaire, used in PACE as indicating improvement in fatigue, can occur when the patient has deteriorated. The...

It's a helpful guide, right? I've never tried amitriptyline, but I had bad side effects when put on low dose Effexor and then low dose Cymbalta (not for any psych issue, or for pain, I didn't have any at the time, just inappropriately for ME). New insomnia, wired, anxious and GI horrors, as...

PS When increasing night dose, I'd sometimes get a great night's sleep. Didn't last, though. It is supposed to improve the depth of your sleep. No obvious benefit for me except immediately after increasing the first few times. You mentioned grogginess. I think I could only claim this the...

I have surprised myself by being able to tolerate Neurontin/Gabapentin for no-longer-manageable all-over-body joint pain. I can't take anti-cholinergics so amitryp, Cymbalta and all that lot are completely out for me. I was concerned about side effects especially because I have significant OI...

Excellent! I'll take a paradigm shift, and I agree that that is what is needed. Thanks for being one of those aiming high. :thumbup:

So good to have people who know all of this! Yes, he was an author on the FINE trial paper. I do wonder if the negative trial dented their confidence in the efficacy of CBT/GET-type approaches. Did they have a way of explaining the failure at the time that allowed them to continue undaunted...

I found this really interesting, thanks for posting, @Sly Saint. Richard Bentall, the Clinical Psychologist, made criticisms of the overall psychiatric approach that mirror those we and others make of the psych approach to ME/CFS – poor diagnostic criteria, continuing to use ineffective...

These two quotes from Sharpe and White stood out to me in the huge report by Malcolm Hooper/Margaret Williams linked to above http://www.margaretwilliams.me/2010/magical-medicine_hooper_feb2010.pdf , p.58 White, speaking/writing at a different time: The what now? The conflation of FM with...

I agree. I think that there are many different parties that need convincing and different narratives convince different people. And while ideally you'd hope that scientific arguments would convince all the health professionals, in practice, they're human too, and some will have their minds...

I think it’s important not to get sidetracked by the many points in this piece. The strength of the PACE crew's strategy is that they tell a simple narrative which is easy for media to regurgitate – GET and CBT are effective, patients reject psych, some patients are meanies. We need to tell...

If you look really, really closely at the treatment section of the SMC would-we-say-factsheet, you’ll see that medical care has a teeny tiny role: Yep, that’s it, sandwiched between four meaty, multi-sentence bullet points on CBT and GET and one on how pacing (sic) doesn’t work (sic). It’s...

@Arnie Pye linked to this study https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5745581/ in a recent thread. Here's the abstract (below). It looks like it could be very useful for your friend. With love to your friend and particularly to her/his daughter. Hoping she gets some relief soon and...

How about this one: In case the tweet doesn't show, it's Carolyn Wilshire saying: "Keeping a copy of this awful tweet, which capitalises on a tragedy to criticise CFS patients' 'intense negativity'. [See tweet by Henrik Vogt, to which Carolyn is referring.] I think they may be negative...

Thanks so much for putting this information in such an easy-to-grasp format, @Simon M , really impactful. Gobsmacking stuff. And this is the clincher, really, isn't it:

Thanks for that link, @Esther12 . My FINE folder is filling up. This playing with numbers until they tell the story you want makes me suspicious that the SF36-PF may find itself usurped by a measure that is deemed more sensitive to change, because it often stubbornly suggests little or no...

Thanks for that really clear explanation, @Valentijn . Wow. So that's 88 patients whose bimodal scores indicate abnormal fatigue being counted as recovered under the Likert switch. I'm guessing their bimodal scores hadn't reduced by 50% either. For people like me who need to see these things...

Thanks @dave30th . Hm. I think the fact that Alison Wearden, lead author of the FINE trial, is listed in the PACE trial 2011 paper as being on the PACE trial group (as an “observer”) is noteworthy (p.835). While you would assume that people doing such similar work at the same time in the...

Again, you're right, and I've edited my post to point this out. Thanks! Just had a look at the PACE protocol paper, where they explain using a bimodally scored Chalder Fatigue Questionnaire as a primary efficacy measure, and a Likert scored CFQ as a secondary efficacy measure. In the PACE...

You're absolutely right, a typo, I've edited my post to correct this. Thanks!