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Our line of defence is simple: "NAM, NICE and the CDC disagree with you. There is evidence of harms spanning two decades and 15,000 people across continents. The evidence of benefits was always very low quality, and so doesn't justify the cost or the risk of harm. At this stage, all your...

I'm not convinced by these words. "Tired but wired" is just a small part of unrefreshing sleep and the "woozy"/"swimmy" bits sound too vague for OI -- they sound like they could equally be blood sugar issues to me.

So PEM was optional?

Trish is right that it requires common sense. Most criteria are supposed to have a little bit of leeway involved for clinical judgement, but this should also apply to exclusionary criteria. There would be times arthritis may not be an exclusionary diagnosis for a bit of research and times when...

This is the risk with any research, sadly. There will always be some patients who are wrongly included in some trials, and some who get wrongly excluded. We don't know what we don't know, right? I see why there is a list of exclusions, though. Whether or not we agree with it is another matter...

So I believe this paper has been accepted for publication now, and there should be more info forthcoming. We made changes based on the feedback here, so thanks for that! We were still very limited by wordcount and scope, but I think it's got some relevant additions in it now.

I think it's also possible that different races and ethnic groups are reported as having different symptoms for different reasons, and that might skew outcomes or diagnosis. E.g., when looking at the qualitative data for NICE, there was some low quality evidence looking at ethnicity and race...

The longer the list of exclusions is, the more chance people with comorbidities will be left out, that's true. But this is for research (although that only becomes clear with the conclusion: "It is important for ME/CFS researchers to select uniform medical conditions..."). For research, you...

Thanks everyone for your excellent comments and input into the process! It looks like IQWiG faces some robust responses. Also, they're showing their hand. They claim we don't want an "all in the mind" hypothesis, but don't they understand what their own words mean? "All in the mind" doesn't...

I'm paying attention. Please tag me if you spot any others.

Unfortunately, "useless" isn't one of the options for rating evidence. If it shows any meagre sign of benefit, it's considered useful by the protocol, and all you can do then is lower the rating. Even then, you can't go lower than very low quality, so continued protestations about...

I read it as saying that you shouldn't have the choice between brain fog OR OI as a symptom, as OI doesn't add much that brain fog doesn't cover. So you'd have brain fog as the required symptom. But that may just be me misreading it?

Agreed. It is pleasant. It can help you feel a little more in control. It can make you feel more relaxed, certainly. But it's not a medical treatment, and most serious practitioners of meditation would agree.

Oh yes, I am aware of this. It's woefully outdated. But thanks for reminding me.

The bit that says "18 ME/CFS patients who met International Consent Criteria (ICC) (ME/CFSICC) only" suggests they didn't also fulfil Fukuda, though? So did some of the Fukuda group fulfil ICC criteria, whereas the second group only fulfilled ICC and not Fukuda? Maybe it's poor wording.

Brilliant. That's helpful. So this seems to be a general policy that they applied, rather than something they specifically devised for this review. That makes it more acceptable, though I still can't shake the feeling that you can't cherry pick parts of one review to replace doing your own...

Do you have a link I can check? It seems to me they would've known what our guideline said, and how we did it, since they used our evidence review as the basis for their own. They must've also known an 80% threshold would favour the trials we downgraded? Or do you mean they always intended to...

Honestly, I think that if people are lazy, adding more detail won't actually help. :laugh: I'll see if we can use your wording, though, because it's certainly clearer and removes the need to look elsewhere.

The EMEC response is strong. @Pustekuchen's notes on PEM are great and worth submitting (perhaps with @petrichor's tweak for tone). I hope our German friends can see this made right! Hopefully it's not too late. The whole methodology seems dodgy to me, though -- they chose the 80% PEM threshold...

All I can say is: people are aware and watching. I can't say more right now.