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Good science for ME CFS in Spain, please support it!

bambi

Guest
Messages
56
I have taken it on to help out raising awareness for the immune study in Spain because I believe it is an important study. They are not doing to well with donations the past few days and time is running out. Also my time and energy is very limited, so if some of you could help and repost the links and information on social media it might help.

I compiled all information, which I think is important, to forward.



New Immune Marker Study in Spain

“Characterization of the T regulating cells in patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome” is the name of the project we are seeking funds for. The objective of the study is to establish new tools for diagnosing, as well as understanding better the causes of ME/CFS and possible therapeutic directions. This project gives continuity to the study published last year by the same researchers which proves that there are 8 molecular alterations in people with ME/CFS which seem to be related to a faulty functioning of the immune system.

To donate:

http://www.verkami.com/locale/en/projects/8246#


For information from Dr. Blanco directly

Dr. Blanco: "We also believe that exploring the function of Tregs will help us to understand the origin and to explain the consequences of immunological abnormalities in CFS."

And you talked in your last study about the heterogeneous patient population. Will you be narrowing down this heterogeneity with using a stricter criteria - ME ICC ?

We will analyze the same patients that we characterize in our JTM paper. This approach will allow for a full characterization of these patients (all previously collected data are available)

You also talked about the difficulties with co-infections or opportunistic infections and immune marker testing. Did you, or are you planning to test your patient cohort for opportunistic infections or Lyme ( low CD57 ?). If yes, will you maybe subgroup patients accordingly in concordance with immune marker testing ?

This is one of the reasons to use the same samples. All the data on CD57 and on co-infections will be available and will help us to delineate an almost whole picture of the immune status.

All the best!

And thanks again!

Julia

http://www.mecfsforums.com/index.php/topic,19366.15.html


For the science interested on the topic "T regulatory cells" and immune markers
All three studies found an increased level of Tregs in patients diagnosed with ME/CFS. Regulatory T cells play an important role in maintaining immune homeostasis. Increased levels of Tregs have been found in many cancers and various viral contexts. Tregs are known to cause immune suppression and could explain the other immune abnormalities found in ME patients.

http://www.mecfsforums.com/index.php?topic=16077.0
 
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Sasha

Fine, thank you
Messages
17,863
Location
UK
@bambi - couldn't PM you for some reason - sorry!

How about renaming your thread something like:

IrsiCaixa study halfway there! Crowdfund needs only 13,000 euros/$18,000 in last 11 days

People like to donate to a winning project and this one is doing well.

If you want to change your title, you can hit the 'report' button on your own post and request it, or send a private message to Kina.

I hope this is helpful - I'd like to see this project succeed.
 

bambi

Guest
Messages
56
Thanks @Sasha for your reply.

I also like this project to go ahead - as soon as possible!

The thing is, the fundraising was doing well initially, but the past few days all donations have stopped. I am watching the count. It is Easter and lots of other stuff is happening; only 10 days left and we need to keep it going if we want to get the remaining 13 000 euros in. Not dollars !

This thread was not directed at people to donate here (I think all of us who wanted to donate have already done so), but what i meant is that patients help with the effort and forward the information I have provided (just copy the entire thing from "New Immmune Marker Study……"onwards. Send it to friends or family.

But I can change the title to a more positive one if you like.

Bambi
 

peggy-sue

Senior Member
Messages
2,623
Location
Scotland
All the donating page takes me to is something where I "pledge" something. I can't see a way of just making a payment. I have paypal, so I could make a payment now, if they take paypal.
I don't like these "pledge-y" things. If I do that, then can't find a way of paying, I'll just mess things up.
 

bambi

Guest
Messages
56
Hi @Peggy, the thing " pledge" means you donate but it is on hold until the whole amount has been collect by end of this crowed funding date. You can choose how much you want to pledge, there are different amounts on the site to the right, it will lead you to your paypal account and it will be deducted from your pay pal account once the fundraising is concluded.

Hope that helps.
 

peggy-sue

Senior Member
Messages
2,623
Location
Scotland
I'd far rather they took the money now. :(

Can I do that?

I don't like things disappearing at later dates when I'm not expecting it. The funds might not be there. I keep the account empty and only put money in when I know I have to use paypal.

Would it be in 11 days time? If I know when it would be, I can make sure it's there.
 
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bambi

Guest
Messages
56
@Paggy darling, I also rather would like it they take it now and start with this study already now. But it will be charged and it is only a few days to go!

Thnx for your donation ! It will changes lives; first for those who will get their complete immune profile done in this study and will have something to show for. Validation is already half way there. Than I hope we all get there and clinical trials with all kinds of meds can be accompanied by markers.

Hugs B.
 

bambi

Guest
Messages
56
@knackers323 ,

I am not sure how in detail the crowd funding stuff works, but as I was told: they initially set the goal of collecting a minimum of 5000 euro to start the study at all. If they collect more the better and they can go ahead with no further ado. If they do not manage to get the funds through this crowd funding project, the patient organization in Spain has to somehow find a way to collect the rest. What Clara told me is that they have in general problems raising money because of the severe economic difficulties in Spain. (Half of the young be people in Spain are unemployed.)

Bambi
 

bambi

Guest
Messages
56
I got some reports that people have problems trying to donate and it does not show up in their pay pal account.
If more people have problems, let me know.

Thanks Bambi
 

bambi

Guest
Messages
56
I have had no further complains and donations are coming in. They have reached nearly 17 000 EU , which is great! :thumbsup::thumbsup::thumbsup:

Just keep reposting it in FB and other social media !

Thanks all

Anushka
 

peggy-sue

Senior Member
Messages
2,623
Location
Scotland
I have just checked my account, to see if the pre-payment thingy is active.

It's not. I did eventually manage to find it, but paypal have deactivated it behind my back, without telling me.
They did send me emails to tell me I had done it.

I may have to organise resending it. (I hate payapl. I really, really hate them.)
 

bambi

Guest
Messages
56
@peggy-sue,

Thanks for reporting back. I had the same problems and did not find it in my account.

I passed on the complains to Clara Velverde, but she is apparently out of wifi coverage area.

Also the old link was suddenly not working and I sassed out two others which work.

A new link is now working

http://www.verkami.com/projects/824...de-diagnostico-del-sindrome-de-fatiga-cronica

And this one lands you direct onto the donations page

http://www.verkami.com/projects/824...-cronica/contribute/select/52459#reward_52459


Anyway, we are near to 18 000 Euro. Another week to go !

Keep circulating the right links please !
 

bambi

Guest
Messages
56
19 000 are in ! If we could make another effort and circulate it in the next 24 hours to make it over 20 000 that would be so cool :cool:;)
 

peggy-sue

Senior Member
Messages
2,623
Location
Scotland
I've had notification of the payment being made, despite the email I had telling me it had been disabled.
I'll keep an eye on things to make absolutely sure it has gone through.:thumbsup:

It's brilliant that it did reach enough for the payments to be made.:angel::balloons::thumbsup::balloons::angel:

(I just wish it wasn't so confusing for folk who are old enough to prefer doing everything in hard, real cash.)
 

bambi

Guest
Messages
56
@peggy-sue and everyone

I've had notification of the payment being made, despite the email I had telling me it had been disabled.
I'll keep an eye on things to make absolutely sure it has gone through.:thumbsup:

It's brilliant that it did reach enough for the payments to be made.:angel::balloons::thumbsup::balloons::angel:

(I just wish it wasn't so confusing for folk who are old enough to prefer doing everything in hard, real cash.)


Yes, I am also glad the payments went through and the study is funded to go ahead. Even more, they going to continue to work with IrsiCaixa on more projects.