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Crowdfunding: Trial By Error: Reporting on ME, CFS, ME/CFS, "Medically Unexplained Symptoms," and now Long Covid, April 2022
- Thread starter Trish
- Start date
Tom Kindlon
Senior Member (Voting Rights)
The same image can also be shared from my Facebook page
MeSci
Senior Member (Voting Rights)
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MeSci
Senior Member (Voting Rights)
Wonko
Senior Member (Voting Rights)
Assuming the donor wall is accurate yet again I am the only person in my county to donate, and even then, I'm part of the wider county, the wall has a section for my city, which shows no donors.
Given how close this is, my end of the month donations will both be made to the other guy, who despite repeatedly dropping target still isn't close to hitting it.
Sorry, but David is nearly there, and based on previous years will hit or exceed target, but Keith...is not.
It is no reflection on my opinion of Davids important work, just that my second donations would probably have more effect, at least in helping to maintain moral (?) - IMO we don't need anyone getting demoralised, due to what could be perceived as lack of support from the ME community.
Tactical donations - would seem to be a thing.
I will however say it again, everyone trying to get funding from a very limited pot, of people who mainly don't have much money, at the same time - is a bad idea. It;s likely more could be raised per donation call if they weren't all in the same month.
I have a very limited amount I can donate in any one month, this month it's being split between 2 people, rather than one, and another next month - meaning I am effectively only capable of giving half (ETA - to each) of what I otherwise would be able to.
It's just a stupid way of organising things.
Given how close this is, my end of the month donations will both be made to the other guy, who despite repeatedly dropping target still isn't close to hitting it.
Sorry, but David is nearly there, and based on previous years will hit or exceed target, but Keith...is not.
It is no reflection on my opinion of Davids important work, just that my second donations would probably have more effect, at least in helping to maintain moral (?) - IMO we don't need anyone getting demoralised, due to what could be perceived as lack of support from the ME community.
Tactical donations - would seem to be a thing.
I will however say it again, everyone trying to get funding from a very limited pot, of people who mainly don't have much money, at the same time - is a bad idea. It;s likely more could be raised per donation call if they weren't all in the same month.
I have a very limited amount I can donate in any one month, this month it's being split between 2 people, rather than one, and another next month - meaning I am effectively only capable of giving half (ETA - to each) of what I otherwise would be able to.
It's just a stupid way of organising things.
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Andy
Retired committee member
Tom Kindlon
Senior Member (Voting Rights)
David has set dates when he fundraises, set by Berkeley I think but certainly the same now for a number of years. So I think it would be, like you suggest, better if the other guy collected at a different time. I might mention it to him but if others did also it might have more of an effect.
Donated, I wish the amount could have been bigger.
@dave30th, that's quite the photo on your promotional material.
I feel sure that you could secure grants and travel opportunities, now that ME/CFS has the much more news-worthy Long Covid angle, and given that you were working on the topic when few others were interested. The fact that you've had multiple successful crowd-funding events shows you have the backing of the ME/CFS community.
For example, this website has lots of opportunities listed:
https://gijn.org/resources-grants-and-fellowships/
Some might fit in the six months ahead e.g. flights and a stipend to visit Japan, and some might work as something interesting to plan for a bit further down the track. Even if it's just $10,000, it increases your profile and that of ME/CFS, and might just take an afternoon writing the application.
It can be surprisingly easy to secure funding like this, often relatively few qualified people know about the opportunities and make the effort to apply. And you have a very good story to support an application.
@dave30th, that's quite the photo on your promotional material.
I feel sure that you could secure grants and travel opportunities, now that ME/CFS has the much more news-worthy Long Covid angle, and given that you were working on the topic when few others were interested. The fact that you've had multiple successful crowd-funding events shows you have the backing of the ME/CFS community.
For example, this website has lots of opportunities listed:
https://gijn.org/resources-grants-and-fellowships/
Some might fit in the six months ahead e.g. flights and a stipend to visit Japan, and some might work as something interesting to plan for a bit further down the track. Even if it's just $10,000, it increases your profile and that of ME/CFS, and might just take an afternoon writing the application.
It can be surprisingly easy to secure funding like this, often relatively few qualified people know about the opportunities and make the effort to apply. And you have a very good story to support an application.
Done 
I think this is more likely now, with the long Covid connection. the problem is my project falls kind of between the slats--it's journalism and public health academics rolled into one--not clearly one or the other. But certainly probably some aspects might be fund-able. I might try to look into that more.
I have donated to Keith's fund and fully support him. It is unfortunate that we both need to do this.
@dave30th
I know you are not a biomedical researcher per se, but you seem to be lumping “Long Covid” with the symptoms of MECFS as a distinct entity separate from MECFS. Is there a reason for this?
My concern is that “creating” a distinct disease in response to Covid infection will lead to a great deal of duplication of existing research, and therefore it makes more sense to call Long Covid with the symptoms of MECFS, Covid-triggered MECFS.
I know Maureen Hansen and Bergquist are claiming Long Covid might be different/distinct from MECFS, but I haven’t seen any evidence from them to support this claim.
I know you are not a biomedical researcher per se, but you seem to be lumping “Long Covid” with the symptoms of MECFS as a distinct entity separate from MECFS. Is there a reason for this?
My concern is that “creating” a distinct disease in response to Covid infection will lead to a great deal of duplication of existing research, and therefore it makes more sense to call Long Covid with the symptoms of MECFS, Covid-triggered MECFS.
I know Maureen Hansen and Bergquist are claiming Long Covid might be different/distinct from MECFS, but I haven’t seen any evidence from them to support this claim.
Long covid is a large category that includes, it seems, everyone with symptoms months after an acute infection. Some but not all of these patients might be diagnosed with ME or ME/CFS or whatever, if they have the same symptom complex. We don't really know what ME/CFS is, and many people reject that term. And we don't really know what long Covid is. I think at this point the question you raise is largely one of semantics. Sure, we could call those with ME/CFS-like symptoms or who have an ME/CFS diagnosis as having Covid-triggered ME/CFS. But I think there's really a lot to sort out here and I think the research will tell us whether they are, in fact, the same or different.
thanks, Barry--and to all who have donated.
Barry
Senior Member (Voting Rights)
Conversely we don't yet have solid evidence it is the same. Strong indications suggest there is a strong overlap, but it would be very presumptuous to insist at this stage they are exactly the same. We just don't know yet.