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That's very interesting! Do we think that it's the reviewers rather than the panelists who are biased? Is their bias a BPS bias? If so, how do we get them shifted?

I'm trying to make sense of what was said about MRC funding at the end. Gareth Wells said that grant acceptance rates for ME/CFS were the same as for other diseases - is that true? Is there public info? And somebody said that bias against ME/CFS is in reviewers, not in panels, I think? I...

I don't really understand where we're at, and what the next steps would be.

In our 'What is ME/CFS?' factsheet, we ended up with: The key feature of ME/CFS is that the illness gets worse after physical or mental activity. People with ME/CFS have limited energy and doing too much makes their symptoms more severe. The worsening can begin hours or days later and take a...

I don't think this takes into account how a sick person's perception of normality shifts. Right now I've been in considerable discomfort for some days, or maybe weeks, with sore muscles for no reason I'm aware of. I say, 'maybe weeks' because I no longer pay much attention when things change. If...

It wasn't that it was subtle - it was subtle as a brick - but I must have either forgotten what was normal or had the mindset that it was 'normal for illness' to feel worse the day after something than on the day and so hadn't bothered to think about it. It wasn't suggested to me - it was...

Even several years after I got sick, I wouldn't have been able to make it clear that I had PEM because I hadn't noticed it. I'd just got used to feeling rubbish for ages after extra activity but hadn't thought about it as a 'thing'. I never mentioned it to my GP because I'd forgotten what...

But isn't that the situation that we are in, in general practice, regarding ME/CFS? GPs don't know enough about it to be able to make a diagnosis. I imagine this 'questionnaire' as consisting of only a couple of questions, that the GP wouldn't necessarily be reading off a cheat-sheet, and not...

I agree, but my concern is for those PwME who are cut off.

Don't we currently have a huge cohort of PwME not getting diagnosed because GPs haven't heard about PEM? And not able to have a stab at diagnosing themselves with ME/CFS and seeking help for it because they haven't heard of it either?

Also fair enough...

Fair enough, but once NICE approves it? Would GPs reach out?

That's interesting! But it would be easy to disabuse everyone of that notion. @Jonathan Edwards, should that be in the factsheet for health professionals?

I hadn't thought about clinicians but I think we'd need people with experience in designing, testing and validating questionnaires. Not necessarily. The critique could simply form the introduction to the paper about the new questionnaire. Or, if they were putting in for grant money, it could...

The Samms and Ponting paper show a ten-fold range of diagnosis across different regions of the UK, so certainly there's a bunch of places under- or over-diagnosing, but they say: Lastly, we considered 6,113 English GP practices with at least 2,500 registered patients which each, given the...

Yes! Who doesn't want to see this?

Do you have a reference for that? Do you have references for this, also?

Protests are relatively small because we're too sick to protest and the protests are basically an endless 'Give us more money for research', rather than 'There's a cure! Bring us back from the dead!' being delivered by now-fit PwME who are back from the dead. It would make no sense at all to...

You're right, I've been assuming a 'daratumumab works' scenario in which there are full responders and non-responders, so you are basically 'back from the dead' or not. I think that's a good scenario to focus on for thinking purposes, though...

The diagnosis does exist. Loads of us have got it. GPs know they have patients who have it and who they are (otherwise, who have they been sending to the ME/CFS clinics?). There aren't specialists to drive the roll-out - hence the question of what happens. I don't see a sane world in which the...