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I'm hoping you all can see that it would take days to respond to these many comments. I will make two central points, then I have to focus on proofs for publications. Those have much greater power to change practice for patients' benefit, so I put my attention there. 1. It might be helpful to...

I appreciate all the discussion, though I can't possibly answer all these small points. Maybe it's helpful for me to say that I understand why there would be so much mistrust of change in the medical community. At the same time, there's a forest for the trees problem here. Yes it's true that...

1. I am not proposing that any terms get "repurposed". Not going to say that again. I'm just reporting on usage among the med professionals who now demand recognition of ME/CFS as a disease. In philosophy we call this "descriptive rather than prescriptive". 2. I have no contributions to...

Yes, very articulate and clear. And I completely agree. Tons of patients are getting the CFS diagnosis still, and most don't have the energy to keep up with the debate. That works just fine. I'm definitely not saying these people have a psych problem. Geez no. My work is all about making...

Willow, the movement completely agrees with you. That is the point of it. The movement says Wessely and Sharpe were wrong and have done considerable damage. It says people with ME are suffering from a serious disease that needs a cure. There are now major medical organizations across the...

This is exactly the problem, I think - that so many in such a powerful group think the global change in professional attitudes toward ME is invisible and non-existent. IOM reports are powerful instruments of change in medical practice across the globe. For the IOM, the NIH and the CDC to...

I'm still unclear what bearing this has on the movement initiated by the IOM, NIH and AHRQ reports. Nothing about the coding system changes the fact that when these organizations rejected the Sharpe/Wessely construct they called it CFS, and that afterwards all US health orgs, including the CDC...

As always, your knowledge of coding far exceeds mine, Suzy, and I actually don't have any arguments against any of the points you've been making. Coding is a reflection of practice though. It does not dictate practice. So while everything you're saying is true, I'm still not clear what...

Suzie can you clarify the purpose of these efforts? Wouldn't it be good for ME patients if all the clinicians stopped using the term CFS? This change at NIH, IOM, CDC and NICE is profoundly productive for patients. I'm having such a hard time understanding why you would want to fight to keep...

That's a great point, though I haven't actually said it's valid. Nothing in the BMJ letter says or implies that, though I do appreciate that it's jarring and uncomfortable to see that definition right there at the beginning. It just says the construct is researched and managed in psychiatry, as...

Sorry I'm not following your reasoning. Seems like you're saying that because people have been conflating the disease with a psych condition for years, we should all keep doing that? Of course you're right that lots of systems use the terms as if they're synonymous, but that in no way supports...

Ok, I understand your point. And you're right - if the core BSS construct is the same as Fink BDS, then it's a bad idea to accept it. I think it's not the same though. I mean, the last two WHO studies involved separate investigations of the core construct and the "symptom cluster criteria" of...

I don’t think Rosendal’s picture is objective. She has a strong investment in characterizing things in a way that’s favorable to BDS. And there is more recent research on behalf of WHO. In any case, can I ask what it is you’re debating? You want to convince people that it’s not a good idea to...

The core construct of BSS is essentially the same as BDD. Then BDS criteria are considered separately, as an potential addition. WHO studies establish general acceptance of the basic BSS construct, and they show that doctors mostly reject the additional recommendation to use BDS criteria...

Thanks for the clarification. (That Creed lecture by Fink is a monstrosity!) Yes, ICD-11-PHC is basically a primary care mental health manual, but WHO is making efforts to make it mainstream. They might well succeed. There’s a strong trend toward wider use of mental health diagnosis for bodily...

Did you see my proposal to reject BDD? Yes of course I agree that we should advocate against anything that’s unproductive for the chronically ill - and I continue to advocate against BDD. I also continue to believe that the ME community has not fully understood the seriousness of the threat...

I understand, Suzy, though I hope you know I played no role in those actions. I continue to be grateful for your work, which has taught me so much.

Oh I do want to say that your work pointing out White’s errors is just marvelous, Suzy. Thanks for exposing those confusions!

I’m not sure I’m understanding your point Suzy. At the time that info sheet was written, BDD was going to be implemented, so there was little point in campaigning against it. I see BDD as a general threat to all those who suffer from undiagnosed disease. It is not a specific threat for ME...

Here’s a link to my proposal to reject BDD. https://docs.wixstatic.com/ugd/23f4ba_9301dfea693f4df190b656a48886cbcd.pdf