Search results

The percentages are numbers of members divided by the numbers of people with the disease. AFAIK, we don't have data on how many members are patients. Does anyone here have that information? Parkinson's UK reported £47m income in its 2023 annual report, 39% of which was from donations and...

Does this below answer your question? It's from my first post in the thread:

It appears from the discussion that we don't have an accurate estimate of actual prevalence, or one of the number of people diagnosed with ME/CFS, and we don't know how many donate - but we do know that even if we assume that real prevalence is even half what we've always assumed, we've still...

That's the summary done - looking forward to hearing ideas for solutions! :)

HAVING SMALL/MANY CHARITIES Problems ME has several charities instead of one big one, unlike MS, Parkinson’s, etc., and so PwME confronted with a confusing choice may give up and support none. Our charities are too small to attract notice and pull in donations. Our charities have less money to...

CHARITIES NOT ATTRACTING PWME – AND DRIVING SOME AWAY Problems A lot of PwME might not trust our charities to spend their donations well. Many PwME might feel that the charities don’t represent their views and interests. Some aren’t confident that research funds will be spent well. Recent...

LACK OF NHS SIGNPOSTING TO CHARITIES Problems The NHS points patients with other diseases to their respective charities. Apparently some NHS ME clinics are doing so, but at least the Newcastle clinic in 2020 refused to do so because our charities didn’t share the clinic’s model of the...

STIGMA/MISPERCEPTION Problems Someone with ME might not want to identify as such because of the stigma and may therefore not donate to our charities or ask friends and family to do so. Only milder cases have the option of dodging the diagnosis, and they’re the ones still able to work who...

PWME’S POVERTY, ISOLATION AND LACK OF ENERGY Problems A lot of PwME depend on benefits and can’t donate. ME hits people early in life before they’ve built up income and savings, unlike many other conditions. Some PwME will have been abandoned by family and friends who would otherwise have...

UNDERDIAGNOSIS Problems (We’re not sure how many PwME there are in the UK: 250,000 might be wrong.) Underdiagnosis may cut the donor pool, caused by ‘obstructive’ GPs, GPs who disapprove of the diagnosis, misdiagnosis with depression, anxiety, FND etc., reluctance to lumber people with milder...

In the following posts I’ve summarised why we think so many PwME and others aren’t donating to our charities, broken into themes, with one post per theme for ease of discussion: Underdiagnosis PwMEs’ poverty, isolation and lack of energy Stigma/misperception Lack of NHS signposting to charities...

So it would maybe be possible to specify that the charity must not promote a BPS view (though this would have to be worded very carefully to avoid the shifting language and weasel words), but that could be overturned on a later occasion? I don't know! Do you think the articles could include a...

I wonder if there is any way a charity can legally prevent its aims being subverted in this way - for example in how its purpose is described in documents that would have legal standing (sorry, I don't know what any of this stuff is called!)?

Also, I'm only used to seeing 'body parts' referenced in relation to serial killers!

There's nothing about it being delayed or getting worse after time before it gets better, and I think it will read as though it's simple fatigue. Also, the phrasing 'ME/CFS may get worse' seems a bit odd - it's not that the disease is worse, it's that symptoms have worsened.

I certainly agree - everyone is welcome to contribute ideas. The reason I've kept a single-country focus is: You might be right, but let's see! I'll post my summary later today, I hope.

I'm in the process of preparing a summary of the thread so far, which has mostly identified problems but not solutions. Then I'll invite everyone to put forward solutions. Because we've been talking about the UK (as per the thread title and my first post, but I realise that people may have...

Don't worry, most of the commentary does anyway apply generally, but as we move into considering solutions, I think it will be important to keep a UK focus. :)

Just an extra point - us producing our own materials that are better than what many of our charities currently produce will help establish our reputation, which will be helpful in all sorts of ways. I hope it will put us in a more influential position in dealing with charities, research funders...

The description of PEM is wrong, surely? I like the fact that it pulls out key points as a starter, that it's reasonably short at 650 words, that it's broken down into short subsections, and that the language is simple and clear with short sentences. All of these things will be helpful for PwME...