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The problem with Camelford (as an example) is that in situations like this there will be heightened health concern on the part of people in an affected area. This should be seen as normal that some part of the local population (especially those with either no science knowledge or other health...

I see that I am late to the discussion. I'd like to say that I agree with many of the comments made. As a preliminary comment before going further I'd like to also say that there is a great need in our community for a place to assemble a list of upcoming/ongoing research in ME but not for the...

Ah, to be the King and get everyone to sing the praises of his glory in an alternative type story Again we are the 'other' we ungrateful souls, who bother his royalty with unyielding truths that refuse to heal or to soothe a conscience pricked but no remorse he'll lash back and stay the...

While I don't necessarily think that this article will have much traction at this point I find it frightening from another perspective. How easy (so very easy) it is to make a whole group of people, none of whom you've ever met or engaged with in any way -- Other. You see MS on the laptop...

So then it seems to me to be entirely unreasonable for McE & B to immediately have jumped to the conclusion of a conversion disorder. But also to be fair we are talking about their opinion formed from decades ago. It seems that this continues to be the default (psychological) regardless of...

Forgive me for wading in here without any real science background but I have just one brief thought. Is it possible that what happened to the patients being referred to here is that they experienced a messed up electrolyte system (as a result of an acute infection) that manifested in all these...

Yes, I think this is the final hurdle. The really importantly placed people who will continue to support PACE because they get directly from the horses mouth all the details of why it is a good trial without going to the work itself or any of the papers written on it to decide for themselves...

I am always inclined to believe that money has a starring role in most of what goes on (and goes wrong) in the world. Although that statement is perhaps rather vague and overly general. I'm hoping that within and outside this community there will be pressure brought to bear forcing discussions...

I wonder if there is something else going on. That is, some small percentage of claimants must make it through the process successfully in order to justify all those that do not. If no one got through the game would be rather transparent. It could be that the assessment was based less on...

The point to be made regarding this lame defense is that science can in no way progress as he suggests if the way in which science research is conducted is fundamentally flawed. It goes beyond PACE. All research that uses dodgy methodology will yield nothing of any use to anyone until that is...

When I see these various works of fiction I also pause to wonder -- How do they ever get funded? And how do they justify doing so?

BBC's Cabin Pressure (Comedy) with Benedict Cumberbatch and Roger Allam. Hilarious.

I'd wager, despite the lofty reputation of the Mayo (well deserved in some respects) this is not the first time they've embraced woo. Fads come and go. This one I think started with Jon Kabat Zinn and his work studying Matthieu Richard. Their hearts are in the right place but the work that...

I read your post and followed the links. I am very glad this is being addressed (and appreciate the efforts made)but my cognitive functioning is such that everything about this is so unfamiliar to me that it was beyond me to parse what it all means exactly. As an example, the CFQ was...

I am stepping out a little beyond my knowledge base/ability to function here so someone will correct me if I've got even this little bit wrong. So the BPS devotees come to realise that cytokines are of interest in the ME community as a possible avenue of interest. Et voila -- a paper that shows...

I agree with the first two points. My post was perhaps not entirely thorough or precise, it was rather a long post for me in my present condition and there was more to be said. I was trying to be both brief and clear while there is a lot to say on the subject. As for the third point I have no...

On thinking further I believe the problem exists at the communication level between interested parties and the Dr./medical team. There are worse and better ways of approaching any concerns of course but medical professionals should be aware and be sensitive to family members/patients rights to...

I doubt it's about being different. I would think it's more about being uncooperative or prepared to question the conclusions of an 'expert' or seek another opinion. World renown in expertise doesn't always allow for patients or their loved ones involving themselves to the point of not meekly...

Perhaps a look at the Producers credits might be illuminating. https://www.imdb.com/title/tt8792570/fullcredits?ref_=tt_ql_1 https://www.imdb.com/name/nm2086013/?ref_=ttfc_fc_cr2 https://www.imdb.com/name/nm3963599/?ref_=ttfc_fc_cr3 https://www.imdb.com/name/nm0517777/?ref_=ttfc_fc_cr4...

If you have Netflix you can go to Afflicted and give it a 'thumbs down'. That might help to let them know how people are feeling about the series.