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I wanted this discussion to be specific to a single country because I think that the percentage of PwME in each country contributing to fundraising will be different, the sources of data that we have about numbers will be different, and the causal factors may be different. My reason for...

Totally agree, hugely important, and an ongoing weird absence of activism on the part of the MEA.

What does this mean in practice, regarding the issues that have been discussed on this thread and the efforts of people here to understand them and get them resolved?

I made myself permanently worse by travelling from my parents' home some distance away by train and then finding that the clinic would have let me do the session by phone. I have never been able to travel more than a few miles independently since. It was crucial for me to attend that first...

You make an excellent point there! And the sheer size of a hospital makes it very hard to a PwME to get around it.

Do we have any numbers on how many of the specialist clinics are using this 'pacing up' approach (for example, from their literature)? Have any of the charities challenged it by writing to BACME and/or to individual clinics? If they haven't, should we?

I thought this was great, @Trish! And it came as a helpful clarification of things and as a reminder to myself not to push my activity (a thing that we need constant reminders of). Thanks for all your work and thought on this - I think a lot of people will find this useful. I agree that this...

That could be important. For PwME themselves, I wouldn't expect that to make any difference, and thus no difference in membership (given that I wouldn't expect allies to become members of any medical charity).

I'm a bit confused - the two links in that tweet to YouTube are dead, and the NHS link goes here, where it's unclear to me whether the flag is just intended for people with learning difficulties (though I'm not reading well at the moment and might have missed something). Is it intended for...

But that's presumably the benefits that people might expect at least from the MEA and its research fund - better drugs (that is, some drugs at all!) coming down the pipeline. I'm wondering whether there's something that ME charities are uniquely short of in terms of their offer that other...

What benefits do you see a PwParkinson's or a PwMS getting from their respective charities that ours don't provide?

Any thoughts about a solution if they don't? I really hope they do, but...

Do we have any good papers on the prevalence of ME (with PEM)? Especially in the UK? I'm horrified that more than 40 years since ME/CFS came to prominence, diagnosis is all over the map and patients are being put in such danger as a result. Do you see a solution? Do we have to wait for a...

Do we have an info or data on whether this is still happening? Certainly some years ago some top BPSers were associating being ill with belonging to a support group (correlation being causation, obviously) but has anything changed? Are our charities not managing to get their leaflets and info...

@Andy, do you happen to have a copy of that update? It would be interesting to see it. Just had a quick online search but couldn't find a report - do you have a link handy?

That's quite possible. I wonder if there's a similar situation for other diseases? When we're trying to get more money to fund research, we really want PwME engaged with charities that run research funds.

I was still an MEA member when DecodeME was recruiting and the MEA pushed hard and repeatedly in its magazine for PwME to sign up. IIRC, there was a poster that you could ask to be put up in your GP's surgery (unless I've hallucinated that, but I doubt that posters in surgeries will pull many...

I wonder whether the 'paradox of choice' is also playing a part in preventing PwME from being linked into the community, in that when you get your diagnosis, you're faced with a whole bunch of charities vying for your support, and you're so overwhelmed by the choice that you choose none. I also...

That's a good question. But if that 250,000 prevalence figure is remotely accurate, the fact that only 20,000 PwME took part in DecodeME (which we could do from home and for all except the most severe was very easy to take part in) suggests that over 90% are either not being reached by...

@Jonathan Edwards, do you have any thoughts on this, including why GPs might not be diagnosing patients and what the solution might be? Do you agree that the problem is on this scale?