Search results

:thumbup: :thumbup: :thumbup: :thumbup: :thumbup: :thumbup: :thumbup: :thumbup: :thumbup: :thumbup: :thumbup: :thumbup::thumbup: Run out of thumbs. We've needed a paper like this forever.

Let's hope we can help unstitch it!

I'm worried about that too.

I also had a look at studies on transdermal absorption when I was initially looking into this and IIRC there were quite a lot of contradictory ones but in the end I landed on it sounding as though there was reasonable absorption particularly if the concentration of Mg in the water is high, and...

But they tell you they think people who say they have ME are deluded but people who say they have CFS aren't? This is a big surprise to me, but of course no one is ever going to say this kind of stuff to our faces (apart from doctors).

: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)?