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Already this feels more accurate than other questionnaires.

This is helpful. To upload, there's a button next to 'post reply' that says 'upload a file'. I'm curious to try this out and see how accurate it feels. I was trying to find this when writing the response to the NICE scope.

Their job was to look at and give an overview of the existing knowledge on the illness, create a clinical diagnostic tool, and come up with a new name to end debates around ME or CFS. I suspect if you polled most clinicians involved, though, they'd probably say SEID as a name wasn't really...

Stephen would be good to have on-side. Maybe @JenB has communicated with him before, since he endorsed Unrest? It would require a tremendous amount of tact to broach the issue, however.

It's from this paper: http://www.dsq-sds.org/article/view/938/1113 It might simply be this list of symptoms: Items Limbs feel heavy when not moving them Dead, heavy feeling after exercise Muscle weakness even after resting Next day soreness after everyday activities Mentally tired after the...

Thanks. I'll give up. It's possible it evolved into something else, but I don't think it's the DePaul Questionnaire, which was created earlier than this one. It's called the MFQT, and Jason claims it's the most effective questionnaire (he designed it specifically for ME) in a few papers.

Sadly, I can't find the actual questions in any of these links. It's supposed to be a 22-item questionnaire, if anyone has any more luck than me.

Does anyone have this questionnaire? I'm trying but failing to find it.

Ah, so he was invited to join and declined. That makes sense. I was wrong about that bit. As for his justification...? Hmmm. I'm not sure. Why did he decline to engage at every step if he knew this was going to be a major report with international clout? Why does he still not give us a better...

Hello! They've confirmed receipt, and not noted any problems. We've been a bit flexible with format before and not had any issues. Re: meds for brain fog, I think my feeling on that was that we at least want the questions asked. It's not about coming to conclusions at this point, but looking...

#MEAction UK has its response here: https://www.meaction.net/2018/07/27/meaction-uk-issues-response-to-nices-second-draft-scope-for-me-cfs-guideline/ It's quite long, but there was lots to include!

I did the same thing. Although the point stands for both cases. We don't want clinics claiming false improvement ratings.

It was a somatic symptoms questionnaire or somesuch from a journal on hysteria. There were others too, including the dreaded HADS.

Yes, I've heard that Jason wanted to be on the IOM panel, or wanted his opinion to be considered, but it wasn't, so now he's hostile to SEID. The CCC and ICC issues are also not clear. Again, I think it comes from interpretation of PEM/PENE, as Charles Shepherd wrote in the article I linked to...

I think this is right. The questionnaires used to assess fibro are all about depression, anxiety, somatoform illness, catastrophising, etc. I had to complete some of these recently, and realised very quickly that even though I have pain, none of that stuff applied to me. What also struck me was...

Yes, that's probably wise. Nuts can work, but you'd be cutting out so much I don't think it's possible.

Maybe they don't care? Or maybe we need to look at where they get funded? It's possible there are some vested interests there.

Very opaque.

Not really. Myhill has a handy shopping list for people with restricted energy here: http://www.drmyhill.co.uk/wiki/Ketogenic_diet_-_the_practical_details#Generalised_Ketogenic_Shopping_List_.28no_food_preparation_or_cooking.29_for_the_severely_disabled Some things are very cheap, others not so...

It looks pretty good, actually. Some things appear to have been taken onboard, and they're more anti-GET/CBT than they have been.