They've already started the work because they're so confident that they'll achieve the amount eventually, so if you want to donate, I wouldn't hesitate. It seems a very achievable goal to me.
Only $6,000 for major double-blind, large-sample immune-abnormality ME/CFS study! Please donate now!
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They've already started the work because they're so confident that they'll achieve the amount eventually, so if you want to donate, I wouldn't hesitate. It seems a very achievable goal to me.
Bob
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Good idea about asking Cort to run a story about their research and fundraising. I'm not sure if Cort's ever mentioned their organisation or their research, so he might not even be aware of them. Anyone like to volunteer to email him?
Good idea about asking Cort to run a story about their research and fundraising. I'm not sure if Cort's ever mentioned their organisation or their research, so he might not even be aware of them. Anyone like to volunteer to email him?
Why not just post a short message in the comments section of his blog right now?
Hi guys! I haven't been able to update the thread till now. Thank you very much for keeping it "alive". Thank you @Sean, @Tuha and @Sasha!
Hi @taniaaust1, well, they have already started the project. They began seeing patients last week. So, if the money needed is not reached, they will go ahead with it anyway, with what the already got. But they won' be able to, for example, reach the 100 healthy controls they wanted to, and maybe they'll have to cut back on some of the new tests they wanted to perform. But they will still try to publish the data they already got from the previous study, by double blinding the process, adding more healthy controls, etc.
To EVERYBODY: I have been asking about the possible reasons for this crowdfunding not having been as "appealing" or successful as I think it should have been (only 12.000€ to get this high evidence based published study, by an internationally recognized researchers, is really very little). While I can guess the reasons in the Spanish community, I would really like to know your opinions on this, as for the "English-speaking" fellows.
I have proposed to ASSSEM to try to extend the deadline and make a video with some of the doctors explaining the project. Not sure this will be possible, as the deadline depends on the agenda of all the team involved in it
Is one of the reasons for some of you that Paypal does nor appear in English?--seems to have happened to someone.
Well, anything would be very welcome. I will pass it on to ASSSEM to see if it is still possible to give the campaign a push...
Thank you!
Sergio
Hi @taniaaust1, well, they have already started the project. They began seeing patients last week. So, if the money needed is not reached, they will go ahead with it anyway, with what the already got. But they won' be able to, for example, reach the 100 healthy controls they wanted to, and maybe they'll have to cut back on some of the new tests they wanted to perform. But they will still try to publish the data they already got from the previous study, by double blinding the process, adding more healthy controls, etc.
To EVERYBODY: I have been asking about the possible reasons for this crowdfunding not having been as "appealing" or successful as I think it should have been (only 12.000€ to get this high evidence based published study, by an internationally recognized researchers, is really very little). While I can guess the reasons in the Spanish community, I would really like to know your opinions on this, as for the "English-speaking" fellows.
I have proposed to ASSSEM to try to extend the deadline and make a video with some of the doctors explaining the project. Not sure this will be possible, as the deadline depends on the agenda of all the team involved in it
Is one of the reasons for some of you that Paypal does nor appear in English?--seems to have happened to someone.
Well, anything would be very welcome. I will pass it on to ASSSEM to see if it is still possible to give the campaign a push...
Thank you!
Sergio
Bob
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@serg1942, I think the project needs a blog/article written about it, bringing together all the info and explaining everything on a single webpage, that can easily be shared on social media, which is why I think it would be good to get Cort involved. A bit more information about the exact nature of the research, the researchers, and the institution would also be welcome, which could all be explained in a blog.
There is probably a language barrier in terms of accessing the ASSEM website, and making donations, but I think that could be overcome, to a degree, with clear instructions about how to make a donation. However, if ASSEM could set up an English language webpage (it just needs to be a single webpage - it doesn't need to be a whole website) that we could link to, and an English language PayPal function then I think that would probably help.
There is probably a language barrier in terms of accessing the ASSEM website, and making donations, but I think that could be overcome, to a degree, with clear instructions about how to make a donation. However, if ASSEM could set up an English language webpage (it just needs to be a single webpage - it doesn't need to be a whole website) that we could link to, and an English language PayPal function then I think that would probably help.
Hi @Bob!
Thank you very much for your inputs. Yes, I undertand what you say, but there is link to a pdf with in depth information about the project, the team involved, the target, and even the estimated needed money broken down into every single area for which they need the funds, with the details of how much is needed for each of this steps of the project. So, although something smaller would have been better, this information is available.
About the payment process, of course, I wish they would have been able to set the instruction in English (The problem is that members of ASSSEM are also sick, etc. and at the end, as usually happens, there is too much work for just few and sick people...). But yes, I totally agree with you, the language barrier is always a huge one, probably the highest of them all... I stumble into it every single day! (if it were for me I would learn speranto to overcome this hurdle!
Anyway, on the bright side, they have gotten enough to start the project, and with a bit of luck, they will get a bit more to achieve the gist of the project, and that's what matters!
I do really appreciate your time and help!
Sergio
PS. Does anyone know Cort Johnoson and if so, could you let him know about the project in case he'd like to help spreading the word?
Thank you very much for your inputs. Yes, I undertand what you say, but there is link to a pdf with in depth information about the project, the team involved, the target, and even the estimated needed money broken down into every single area for which they need the funds, with the details of how much is needed for each of this steps of the project. So, although something smaller would have been better, this information is available.
About the payment process, of course, I wish they would have been able to set the instruction in English (The problem is that members of ASSSEM are also sick, etc. and at the end, as usually happens, there is too much work for just few and sick people...). But yes, I totally agree with you, the language barrier is always a huge one, probably the highest of them all... I stumble into it every single day! (if it were for me I would learn speranto to overcome this hurdle!
Anyway, on the bright side, they have gotten enough to start the project, and with a bit of luck, they will get a bit more to achieve the gist of the project, and that's what matters!
I do really appreciate your time and help!
Sergio
PS. Does anyone know Cort Johnoson and if so, could you let him know about the project in case he'd like to help spreading the word?
I don't know him personally but if you'd like to contact him direct, here's the contact page on his blog:
http://www.cortjohnson.org/contact-us/
Bob
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Sergio, I hope I didn't sound like I was criticising in any way... I was just offering constructive suggestions, as you asked... I know it takes a lot of effort and dedication to run a crowdfund. Thanks for doing what you're doing.
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Hi @Bob!, not at all!!! (this is the language barrier we were talking about!) I was just thinking out-loud about what you said, wondering which other factors might have been preventing a further attention).
BUT, in spite of it all, THEY GOT nearly 9000€! (I will give the details.Probably they are counting with the part the association could donate... No idea at this moment), and will probably get more over time, as patients are donating when they are seeing the project in motion! That is, when they are visiting the doctors, etc.
They will write all this up soon, also in English of course, as the foreign contribution has been very important. But I'll try to update you all on this before. Maybe we are still on time to write up something like an article as some of you have suggested, and help give them a final push!?
Best and thank you again!
Sergio
BUT, in spite of it all, THEY GOT nearly 9000€! (I will give the details.Probably they are counting with the part the association could donate... No idea at this moment), and will probably get more over time, as patients are donating when they are seeing the project in motion! That is, when they are visiting the doctors, etc.
They will write all this up soon, also in English of course, as the foreign contribution has been very important. But I'll try to update you all on this before. Maybe we are still on time to write up something like an article as some of you have suggested, and help give them a final push!?
Best and thank you again!
Sergio
Bob
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I'd love to write a blog/article about it, but it's very bad timing for me at the moment. I'm stuck in bed today and so i can't help with anything this week.Maybe we are still on time to write up something like an article as some of you have suggested, and help give them a final push!?
snowathlete
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I think there has just been a lot going on lately with the IOM stuff and the fallout from that, plus the Lipkin paper and some other stuff in the community and that has taken a lot of the attention as well as a lot of writers and advocates who would normally try to help more, being all knackered at the same time?
Anyway, it is great if we have almost achieved the required money anyway! I know lots of people are very appreciative of the team of researchers that are doing this work.
Anyway, it is great if we have almost achieved the required money anyway! I know lots of people are very appreciative of the team of researchers that are doing this work.
Bob
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@serg1942, your pro-health blog is the sort of thing that I was thinking about when I suggested a blog/article. I know it contains almost the same info as your opening post in this thread but, for some reason, your introductory letter on pro-health make a huge amount of difference; it sets the scene for the reader. Also, the formatting of the text on pro-health seems very much clearer and easier to read, and it seems makes a substantial difference. For example, I didn't notice your link to @snowathlete's blog in your opening post on this thread, and I only noticed it when reading the pro-health page. (I know it's only a difference in formatting, but the pro-health info seems much easier to follow and digest.)
I'm just about to read @snowathlete's 2013 blog - it looks like it explores the background of the researchers that I was suggesting would be helpful.
I think the pro-health article is a much better link to use for social media than this thread. If anyone emails Cort, perhaps send him the pro-health link.
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rebecca1995
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I tried to donate, but got an error message in Spanish and don't know what I did wrong! Is it too late to donate?
Bob
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Sergio, you can ignore my earlier suggestions - All the info was already available, including your letter and snowathlete's blog. I just hadn't seen it all.
I've read half of @snowathlete's blog so far. It's exactly the sort of blog I was thinking about: It's got a lot of background info in it. I don't know how I've managed to miss it.
I've read half of @snowathlete's blog so far. It's exactly the sort of blog I was thinking about: It's got a lot of background info in it. I don't know how I've managed to miss it.
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Bob
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I don't know why we hadn't seen this before... It's an update from June 2015:
http://forums.phoenixrising.me/inde...al-studies-on-cfs-have-been-identified.39034/
http://forums.phoenixrising.me/inde...al-studies-on-cfs-have-been-identified.39034/