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Disappointing response from NICE. A bit strange too, because it's all beside the point that our letter made. Our letter wasn't about the partiality of the GDG members and appointments but about how NICE would apply conflicts of interest. We basically asked: "Three members of the GDG conducted...

I find that the quotes by Caroline Struther's ("every exercise is strengthening your body”, “there is no disease” etc.) are not in this document, but in this one: https://web.archive.org/web/20140811161130/http://www.fine-trial.net/downloads/CFS%20patient%20presentation.pdf Can someone give...

Thanks for sharing your perspective @Tom Kindlon . I always learn a lot from what you say. I think it also depends in which country you're at. In places like France or Germany, it might be best to focus on awareness of ME/CFS because there is virtually none. With more awareness perhaps some...

Perhaps it was this one? Flo E, Chalder T. Prevalence and predictors of recovery from chronic fatigue syndrome in a routine clinical practice. Behav Res Ther. 2014 Dec;63:1-8. doi: 10.1016/j.brat.2014.08.013. So participants seemed to be pre-selected by the NICE criteria as the PACE-trial did...

I agree. It would have been good to have a joint statement by the ME/CFS charities. They could have focused on the good work they are doing with the biobank and supporting researchers, but that leaves some of the false claims by Reuters intact. Opponents might still think that psychosocial...

Your critical comments are very much appreciated - well, at least by me. I think it's important that we have voices in our community who dare to take on the skeptic's perspective and watch over the rest to not make any overstatements.

There are so many wonderful sentences in this blog. For example: Thanks to Brian Hughes for writing this. I do however agree with the comments by @fivetowns and @Esther12. Rather than faking their disease, the BPS model assumes patients have a delusion. How much of that is window dressing is...

Really? Haven't read the studies but that would very much surprise me. I always thought that the reason why this intervention was so easily accepted in ME/CFS was that it worked reasonably well in other patients such as those with low back pain...

The most likely explanation is that Medical express put the GET/CBT thing in there.

Didn't know Marcie Zinn also had ME/CFS. Sad that's mostly up to patients and their family members to find the cause of this illness.

I think the tactic of ignoring the bad Reuters article and sharing older, good articles wasn't the right strategy. We are sharing those articles mostly with ourselves, I'm afraid. I think we should use the attention that is given to ME/CFS in news media, to push our own narrative. Our online...

Well, kudos to him then

The following posts have been moved from the Reuters thread. Really? That's quite amazing. Doesn't CS get paid by the charity for all the work that he's doing? When the ME association was looking for a media officer, it was quite clear that the position was paid. I would be surprised if other...

This is very useful, thank you Simone. I think the most important issues are in there. It is difficult to start working on a document though, without knowing which subjects there is agreement on. Would be helpful if others could list some prorities as well, so we can see which ones have the...

I thought her joke about spinal tab was actually quite funny.

Sorry, I might be a bit confused, but could you give more info about this: what showed that patients believed they could overcome their illness in the PACE trial?

ME/CFS is leaving the fatigue spectrum Abstract: Contrary to the conclusion by Flatt et al. [1] research has indicated several differences between patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and patients suffering from idiopathic chronic fatigue (ICF). ME/CFS...

I've submitted the following comment to the publication by Flatt et al., but unfortunately it has not been accepted. I'm posting it here since I have done some study on reported differences between ME/CFS and chronic fatigue. I hope that the references will be useful.

On Ted Kaptchuk:

True, but these articles could remain damaging to ME activism long after the whole controversy on GET/CBT and the PACE-trial.