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:thumbup: I'd be delighted with just having one of those name-names, like Parkinson's or Crohn's. A name that means nothing is the perfect solution when you don't know what a disease is.

Doctors might, but I don't know that the general public do. I think that's part of the problem - we have different sections of the population thinking different things about both stupid names. It's such a curse.

I think the real objection to 'CFS' has been that it trivialises the condition, no matter what its definition may be. Tell someone that you have 'chronic fatigue syndrome' and they'll think it a tremendous joke and say, with a big grin, 'Well, I'm tired too!' and have no idea why you don't find...

I think the big problem is that people don't know which names cause confusion and antagonism. I was using 'ME' for years and had no idea the name might be putting doctors off me. Doctors have been using 'CFS' or even 'chronic fatigue' for years and don't realise that PwME absoultely hate it...

Thanks - but how do we know that? I don't remember it from the paper.

I don't want to derail the thread but where does this 10% come from? Is the idea that 10% of cases are genetic and the others are stochastic? Is that from DecodeME?

Great job, this is a good initiative! :thumbup:

We've only just come to favour it since a paper that Jo published a year or two ago.

I've got a bit distracted and have lost the plot a bit but is our best plan so far a FAQ sheet (see what I did there?) or do we need something different/addition/more epic? I can't see dodgy doctors being corrected by a FAQ sheet (but they may be irredeemable).

I can imagine FAQs both in the form of a factsheet and in the usual FAQs format (quite often drop-down) on a webpage. We could have it all! :)

Sounds as though having a website front-end is in the pipeline but what Evergreen is suggesting sounds very much like a new factsheet which I would have thought could be knocked out quite quickly (by you, anyway!). What letter? Is there really a ban? What do you have in mind? Once your...

Horrifying about the lack of strategic thinking. But would be possible to change things by getting better reviewers in? If an ME/CFS proposal was positively reviewed and was approved by the panel (I'm getting the impression that the panel isn't the problem), would it be funded? Can reviewers be...

Surely people don't go on review panels just for brownie points, though! I can't believe everyone is quite so self-serving. Could it be just a matter of tapping the right people on the shoulder, like you've started to do? We can't afford to wait for a sea change. We need things like Sequence ME...

Thanks, that's interesting. So if it's all about the MRC using ignorant reviewers, do we know why they're doing so? Dom't we have potential reviewers who aren't ignorant? Do they need to be putting themselves forward? Are there enough of them? Or do we need to cultivate new people like this guy...

What do you think would be more informative, and what should the MRC be doing differently (and/or how should we be trying to influence hte MRC)?

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...