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Just managed to find its very jaunty YouTube promo video (very lively music, sound off if you're sensitive!). The weblink to the blog is dead, but the blurb explains an aspect that I'd forgotten - that you were only expected to donate part of what you saved to biomedical research, and keep the...

I think you have your priorities right, @Kitty! Extremely ill PwME who are living under such extreme circumstances with very little money shouldn't feel obliged to give. There are others who can give. I think we need to find ways to excite those people about research, and make them feel good...

What sort of work does AfME do in this context?

Is he on the forum? Can we just ask him?

That's an interesting thought, but I posted the quote not because of that aspect (which I hadn't thought about as deeply as you but had assumed wouldn't work in our context) but because of its messaging - 'We're a community! You can be part of it! You can make good things happen! We'll give you...

I think you're right! Providing an enjoyable thing to do is a good way to get healthy people to support us, and it doesn't even have to involve sponsorship. I had a squiz at Parkinson's UK and they've partnered with an organisation that offers adventure trips (cycling through Southeast Asia...

The key issue for me is that, without biomedical research and the effective treatments that would result, PwME are stuck in hell. Poor funding has led to poor research outcomes, and has for decades. Our charities are trying to raise money for research but they're not raising anything like what...

We don't have data, AFAIK, on how many individuals donate but as per my first post on the thread, the money donated to our ME charities divided by the number of patients we believe are in the UK seems well below that of charities for other diseases. I think it's so far below that it's likely to...

I think that spending on unproven treatments is logical and understandable, given that we don't know what does and doesn't work, especially for individuals, that most things will never undergo trials, and that there are no effective treatments being given out by the NHS - and that donating your...

I recently stumbled over what I thought was an absolutely stellar fundraising mechanism by an Berlin-based rewilding organisation called Planet Wild that is building a community of people to support rewilding projects. Every month, it partners with a different organisation that is working on...

We've talked about why we don't fundraise, and although some of the issues are ME/CFS-specific, I don't think they all are. If I had Parkinson's or MS - non-stigmatised diseases - I still wouldn't keep tapping my social circle for money in order to fundraise. This raises the question: what kind...

I just wanted to thank the people who have posted their personal reasons for not fundraising, some of which are painful reasons and not easy to talk about, and many of which I share. Without this information, we're not going to understand the problem, and if we don't understand the problem, we...

That's a very interesting possibility. I wonder what happens at the moment with ME/CFS support groups. ME/CFS is such an outlier in so many ways. Things are so bad, and people so debilitated, that many support groups might have a very limited scope and I wonder if they're far more focused on...

Is that something that people here on the forum would be able to do, given the right instruction? (Because I'm thinking primarily about research funding, it would really be the national ME charities I'd be thinking would be the beneficiaries rather than the local support groups.)

I really like that idea! And this insight!

I really like your thoughts here, @Hutan, in your whole post! I wanted to pull this bit out. I think you make a really good point that a charity with a ton of members looks a lot more worth supporting. When you say it could get grant funding, how would the charity identify suitable...

I don't think anyone is suggesting that feeling ill that would affect the biochemistry. (Actually, I don't think anyone is necessarily suggesting the biochemistry underlying PEM is having a knock-on effect on more biochemistry, though I may be mistaken, and I'm wondering if I implied that myself...

Just tagging @PeterW, in case of interest...

PEM, XIM and WAE sound identical. If the malaise is the subjective experience associated with a particular biochemical event that has been triggered by exertion, couldn't that biochemical event trigger other biochemical events and hence other bits of the illness? I don't see any need to invoke...

My experience has been mostly of chronic fatiguability rather than chronic fatigue - that is, I'm not tired all the time but can easily become exhausted through trivial effort.