Your OMF gift tripled this week!

PWME do of course have cognitive problems - I do, for sure - but this is the first time I've seen someone suggest that we have 'judgement problems'. I don't agree. I can see that cognitive difficulties mean that a PWME might be slowed in their thinking but having the incapacity to make life-decisions for oneself is quite another matter. If a PWME has really in essence developed dementia then they would hopefully have their day-to-day affairs managed under power of attorney by someone else, and that person would not allow a donation to a charity that the PWME couldn't afford. But I'm not aware that such a lack of judgment is at all common or a facet of ME in general.

 

I think that part of the reason for doing a 3-for-1 is to draw new people in who then might become regular donors. You have a much better chance of getting new regular donors if you can get new donors in the first place.

 

You've made some points that some people could find useful so I think they were worth making.

I agree with this.


Personally I'm interested in encouraging research in the UK so I won't be donating to OMF. They're a large charity (in the ME world) and I don't think this fundraiser will suffer for my decision. I'm expecting them to reach the target.

 

I'm still a bit baffled by this idea of 3-for-1 encouraging people to give donations that they can't afford. When I see a BOGOF offer in the supermarket, it might make me more inclined to buy that product than another but it in no way inclines me to blow money I can't afford on it.

 

I think the main thing is that people give what they can afford to good-quality biomed research, whoever is doing it; that we donate regularly if we can and are so inclined, to offer a stable income for research; and that we do what we can to pull in more donors.

 

But they do, that is the point of them, just because it doesn't work on you individually, at a population level they increase shopping spend, and thus profits.

Or did you think they run BOGOFs out of the goodness of their hearts?

 

How can you possibly know that 3-for-1s make people spend money that they can't afford? What is your data source?

I daresay they do increase shopping spend, at least on the item in the offer. But you're saying that this is money that the shopper can't afford. What's your evidence for that?

No, I assume they do it to make a profit.

 

Which they have, see: https://www.omf.ngo/triple-tuesday-18/

ETA: list of stuff to fund from link above

 

Speaking for myself, there is a cut of point where I now know I am not in good shape to make decisions due to cognitive impairment. It is not that I have dementia or anything, it is simply that, on a number of occasions, I realized I hadn't factored in information that I might have considered when not suffering PEM. Whether that would affect my decision to donate is another matter.

I think some patients are very desperate. Especially the newly ill, trying to adjust to being so ill and also trying to get their heads around the lack of understanding, compassion and empathy that an MS or cancer patient might receive. There can be a desperation, an if only we can just do one big push for research, we can sort it. Mistaking a marathon for a sprint - I could easily see someone like this rashly giving more than they can afford, out of desperation. Out of feeling helpless.

Is it possible they might behave like this even without the promotion? Maybe, maybe not.

 

I don't, but they wouldn't do them if 'they' didn't think it would, and they presumably have figures from previous ones that show an increase in revenue.

As to the can't afford part.....human nature suggests it's probably true, people love 'free' stuff, the idea of donating 3 times what you actually donate, is 'free' stuff. More 'free' stuff is better, than no/less 'free stuff. If I bump a payment, buy less food this week then that could be an extra £20, read £60, donation, that's £40 I've 'gained' through doing 'nothing' other than deferring something. The fact that that deferment needs to be met, well that's only £20 and I've given £60 so I'm £40 up, so not a problem.

But the £20 still needs to be spent.......and it isn't available.

Most people are more subject to the whims of game theory than to a future problem, especially if the problems seem small.

It's manipulative marketing, used all over the place to make profit, it works.

A charity should not be using such techniques IMO.

The evidence that it works, most, or enough, of the time, is, the society we live in.

ETA - My point remains, if the 'minted' donors actually want to donate, why play games, why not simply donate what they can afford/choose? Unless of course, I am right, that this is a cynical manipulative attempt to gain more money than people would otherwise give/can afford?

The more I think about this the more irritated it makes me.

OMF would have the figures but there are basically only 3 scenarios I can think of;

1. The amount raised is the same as the normal amount raised (without a multiplier) plus the 'minted' donation, or

2. The amount raised, is higher than the normal amount raised (without a multiplier) plus the 'minted' donation.

3 The amount raised is less.

Option 1 - in which case, what's the point of it.

Option 2 - where is the extra money coming from, it would be easy to see from the record of donations, anonymous or not, if the average donation is larger, as it must necessarily be, as the amount raised is larger, and if so, how are people affording this, is it safe, or morally right, to assume that they are doing so at no cost to their QoL, in all cases? Given that the vast majority of donations will be given by PwME who have previously donated, and family/friends they know, as that's who the publicity hits, that's who knows about the multiplier.

Option 3 - Really, seriously, why, do, it.

So logic dictates that Option 2 is probably correct, and TBH even if there are more donors, are they people who can't actually afford it, are they people who are only giving because of the multiplier increasing the size of the donation - are they in fact, being 'gamed' out of their money.

There's more but I am 'tired' now.

 

Really? Click on the drop down menu on "Disease Focus". Why is Chronic Lyme and Fibromyalgia added to our focus?
I thought the project was "End ME project"?

“In all, about 60 different symptoms can occur with the disease, and each patient’s symptom profile may be different.” ????

 

@Mij

The initial focus of OMF is ME/CFS research https://www.omf.ngo/about-us/

It seems that they are intending in the future to widen the focus to other 'related chronic complex diseases'. If Lyme and Fibro are related I suppose research will one day tell. I can't see anything that suggests that they are using funds for anything that isn't ME/CFS related at present.

 

@Mij I don’t have the capacity to read through myself. Just wanted to point out that they have linked to some info on what the money is for, although at first glance it doesn’t look very detailed.

I don’t have the energy to have an opinion about the pros and cons of OMFs fundraising strategies, or about OMF at all, although like most people I am looking forward to seeing published studies.

 

@Wonko - perhaps the 3-1 tactic reflects a desire to raise a lump sum now - there's been comment that they need money now because they need more people working on the research now. I dunno, I've really not got a view about this fundraiser.

edit - grammar and clarity

 

Indeed, i post articles or research that are related to ME or indirectly related or the exact opposite. If i am responsible for what the articles are saying i'm in big trouble.
If i'm posting time wasting content thats one thing but i have no affiliation with researchers or news organizations.

 

"Any progress in ME/CFS research will help find answers about Lyme disease. Many people who are infected with Borrelia, the Lyme disease bacteria, develop ME/CFS symptoms. So whether it is chronic Lyme disease, a post-Lyme disease syndrome or Lyme disease developing into ME/CFS, understanding ME/CFS and its infectious triggers better will reveal more about the chronic condition many Lyme disease patients develop."

What are "ME/CFS symptoms"? In this case we could include most chronic illness, MS, depression, autoimmune diseases etc They do not experience delayed PEM which is at the core of ME.
https://www.omf.ngo/what-is-mecfs-old/lyme-disease-initiative/

"Progress in ME/CFS research may also help find answers about fibromyalgia because many of the symptoms are the same or very similar. Additionally, many people with a fibromyalgia diagnosis also have ME/CFS and don’t know it."

Pain is the primary symptom of Fibro and exercise improves symptoms. They do not experience PEM.
https://www.omf.ngo/what-is-mecfs-old/fibromyalgia/

The OMF are blurring the definition of ME.

 

ME does have around 60 symptoms unfortunately....the severe patients can vouch for that. The hope is that what is learned from ME research will benefit fibromyalgia, as they seem similar in some ways. Not sure where Lyme fits in. But right now the focus is M.E and that suits me.

 

Well their webpage does say:

I understand the hope the ME/CFS research will lead to better understanding of a whole range of illnesses. It doesn't necessarily mean all those illnesses are connected though. I know someone who developed ME post anorexia, another post cancer. Neither of them recovered from their condition "normally" and went on to be diagnosed with ME.

Whether it's fair or not, this discussion seems to indicate that OMF has a communication problem. This is a shame. I understand that, initially at least, they weren't publishing their research because of the time and resource that takes. ME patients, in the UK at least, are only too well used to their own patient charities biting them in the behind so we're not good on blind trust.

Do OMF have a representative here? @JaimeS is now at MEAction.

Edited - removed a sentence that might be misconstrued

 

I do think that every charity has an obligation to be totally transparent about how money is spent. Most grants specify how the money must be expended and also require detailed accountabilities. Donations don’t attract this level of scrutiny so they are in many ways preferable for organizations. Sometimes projects can get stuck because of lack of admin funds, especially when the day to day admin stuff can be the most difficult to get funding for. So personally I have no problem with my donation being spent on stamps or toilet roll, if that is what is needed to keep the research going! But - I do want to know why they want my money.

As an aside - I really like the communication from the ME BioBank in the UK - I think they are really good at being clear why they have fundraising drives and what the money is going to be spent on...