Due to success of MS-Selfie I am going to experiment with a subscription model for MS-Selfie Newsletters pertaining to specific case studies, i.e. non-themed newsletters.
I have MS and could probably afford to drop $99 per year. Am I going to pay for the subscription, though? No. It's a lot of money just to read case studies when the majority won't be relevant to me. I could buy 2-4 decent books for that. Or 4 NYT subscriptions.
I am very grateful for all the free information you put out there. I love reading it and it has been extremely helpful. But somehow, this is making me angry. I realize it's unreasonable since you're under no obligation to publish anything in the first place, but it just rubs me the wrong way. I'm guessing most of the people that will benefit will be the crowd that doesn't need to think about spending $99 and already has much better health outcomes due to being affluent, even in a country with good public healthcare.
Subscriptions are for case studies; the Newsletters are free. Resources are for an administrator to curate & transfer the contents of the Newsletter onto the MS-Selfie microsite. The site needs to become self-sustaining. https://buff.ly/3iz8WMr
Do you think the case studies should be free? Many pwMS are prepared to pay £360 or more for a private consultation but want a written opinion for free. Maybe it is because they think they are not really paying for the private consultation because it is covered by their insurance company?
It's unreasonable to expect private consultations for free. The case studies aren't private consultations, though - you're just gaining access to the questions other people asked.
If you can't provide the case studies for free (yes, in my ideal world healthcare information is free - rich people already have vastly better health outcomes), the pricing reflect what the average reader gets from the case studies. I don't think that's the case right now.
But like I said, my anger here is probably unreasonable since you're not getting paid and are already providing a lot of free resources.
The administrator I will be working with on the accompanying MS-Selfie microsite happens to be a very talented medical writer, and her services are not free. The output will be a living, continuously evolving, self-help guide for people with MS in a format that is easy to navigate and understand. I hope this justifies the subscription some people are prepared to pay.
My only concern about this is that people with MS who are already disadvantaged and most in need of your expertise will find it difficult to afford and/or access the case studies and more individually targeted advice. I completely acknowledge that there is an option for free access for those who can't afford it but sometimes access to the information which helps people is most difficult for those it would help the most. I appreciate everything you do for people with MS. I just wish we had a system that was completely fair and prefer not to encourage anything that might make it even less so.
If they want to receive the case studies and they can't afford the subscription they just need to drop me an email and I will sign them up for a complimentary subscription. The subscription is not for me personally but to hire a pair of professional hands to improve and maintain the MS-Selfie microsite. The other option is for me not to respond to readers/pwMS requests to comment about their MS and drop the case studies.
Thanks Gavin, & good to see how successful this has been! Just shows you the lack of (or in my case overwhelming need for someone who cares honestly & wanting help!) honest, up to date & want to jump right into the disease, shake it up & support the complete package, that goes with MS! I'm in but might have to be careful with costs, as I'm now officially retired!
More than happy to pay for a subscription. Your newsletter has given me more useful information and ultimately hope than my own neuro has ever given me. I wish my neuro would subscribe as well then maybe he could look further than the number of (or lack of) new lesions!
Thanks for the offer of a free subscription if you have MS, I was concerned that the subscription route could exclude these of us on very limited incomes. Another option may be to set it up as a charity and recruit a volunteer to do the admin. I'm sure there are some people with MS who could help. I'm a trustee for an MS charity and find the work both stimulating and rewarding.
I have tried with MS volunteers in the past; it is very time-consuming and didn't work. The problem is me; not enough bandwidth for training and supervision. Similarly, running a charity is hard work and raising money, even donations is almost a full-time job. I will let you know if the subscription model works. This is a trial.
I want to point out that if you have MS and can't afford the case study subscription drop me an email and I can give you a complimentary subscription.
Yes I’m happy to pay a subscription.
Thanks. If I can raise enough money to hire a part-time medical writer/administrator the microsite will fly.
I have MS and could probably afford to drop $99 per year. Am I going to pay for the subscription, though? No. It's a lot of money just to read case studies when the majority won't be relevant to me. I could buy 2-4 decent books for that. Or 4 NYT subscriptions.
I am very grateful for all the free information you put out there. I love reading it and it has been extremely helpful. But somehow, this is making me angry. I realize it's unreasonable since you're under no obligation to publish anything in the first place, but it just rubs me the wrong way. I'm guessing most of the people that will benefit will be the crowd that doesn't need to think about spending $99 and already has much better health outcomes due to being affluent, even in a country with good public healthcare.
Subscriptions are for case studies; the Newsletters are free. Resources are for an administrator to curate & transfer the contents of the Newsletter onto the MS-Selfie microsite. The site needs to become self-sustaining. https://buff.ly/3iz8WMr
Do you think the case studies should be free? Many pwMS are prepared to pay £360 or more for a private consultation but want a written opinion for free. Maybe it is because they think they are not really paying for the private consultation because it is covered by their insurance company?
It's unreasonable to expect private consultations for free. The case studies aren't private consultations, though - you're just gaining access to the questions other people asked.
If you can't provide the case studies for free (yes, in my ideal world healthcare information is free - rich people already have vastly better health outcomes), the pricing reflect what the average reader gets from the case studies. I don't think that's the case right now.
But like I said, my anger here is probably unreasonable since you're not getting paid and are already providing a lot of free resources.
The administrator I will be working with on the accompanying MS-Selfie microsite happens to be a very talented medical writer, and her services are not free. The output will be a living, continuously evolving, self-help guide for people with MS in a format that is easy to navigate and understand. I hope this justifies the subscription some people are prepared to pay.
Happy to pay a subscription
Thank you.
My only concern about this is that people with MS who are already disadvantaged and most in need of your expertise will find it difficult to afford and/or access the case studies and more individually targeted advice. I completely acknowledge that there is an option for free access for those who can't afford it but sometimes access to the information which helps people is most difficult for those it would help the most. I appreciate everything you do for people with MS. I just wish we had a system that was completely fair and prefer not to encourage anything that might make it even less so.
If they want to receive the case studies and they can't afford the subscription they just need to drop me an email and I will sign them up for a complimentary subscription. The subscription is not for me personally but to hire a pair of professional hands to improve and maintain the MS-Selfie microsite. The other option is for me not to respond to readers/pwMS requests to comment about their MS and drop the case studies.
Totally understand and anything that helps people with MS is great. Just looking for utopia! :)
Just because something is a good idea, it doesn't mean you have to do it :) Don't burn yourself out!
Thanks Gavin, & good to see how successful this has been! Just shows you the lack of (or in my case overwhelming need for someone who cares honestly & wanting help!) honest, up to date & want to jump right into the disease, shake it up & support the complete package, that goes with MS! I'm in but might have to be careful with costs, as I'm now officially retired!
More than happy to pay for a subscription. Your newsletter has given me more useful information and ultimately hope than my own neuro has ever given me. I wish my neuro would subscribe as well then maybe he could look further than the number of (or lack of) new lesions!
Been waiting for this.
Now if only we could have per substack nicknames...
I think you can.
Thanks for the offer of a free subscription if you have MS, I was concerned that the subscription route could exclude these of us on very limited incomes. Another option may be to set it up as a charity and recruit a volunteer to do the admin. I'm sure there are some people with MS who could help. I'm a trustee for an MS charity and find the work both stimulating and rewarding.
I have tried with MS volunteers in the past; it is very time-consuming and didn't work. The problem is me; not enough bandwidth for training and supervision. Similarly, running a charity is hard work and raising money, even donations is almost a full-time job. I will let you know if the subscription model works. This is a trial.
Not against paying. I'm finding your newsletter very educational and supportive. How much would the new subscription cost and how do I subscribe?
Karen you don't have to subscribe. All the themed newsletters will be sent to you as usual.