The Power and Pitfalls of Omics: George Davey Smith’s storming talk at ME/CFS conference
Read about the talk that stole the show at a recent ME/CFS conference in Simon McGrath's two-part blog.
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Only $6,000 for major double-blind, large-sample immune-abnormality ME/CFS study! Please donate now!

Discussion in 'Fundraising' started by serg1942, Mar 6, 2015.

  1. serg1942

    serg1942 Senior Member

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    PROJECT: Characterization of immunological biomarkers in ME/CFS

    --Link here to plain-format version of the text below (in case the underlining, italics, or all-capitals make it hard for you to read).

    (Read the entire project); (Original in Spanish) --Please excuse the grammar mistakes in the translation. A better one will be uploaded soon--

    SUMMARY:

    1- IrsiCaixa, an internationally-recognized institute for AIDS research, published in 2013 a study in wich they found alterations in subsets of both T and NK cells. Specifically they identified eight molecules associated to poor immune system function, that could be used for diagnosis (source).
    --For further information, read the article: "Spanish HIV Experts Give Aid to ME/CFS" (by Joel (Snowathlete on PR), April 20013)

    2- They expanded this preliminary study, with the project called "Comparison of biomarkers in EM/SFC", for which a crowdfunding of 29.000 € was launched and achieved last year. (Link to the thread)

    The preliminary results obtained from this second comparative study (from 193 participants and 20 healthy controls), showed specific immunological abnormalities in EM/CFS patients, and identified two subgroups of patients, according to different combinations of NKCD57 and NK NKP46 cells. These subsets could be explained by reactivation of herpes viruses (page 4), according to the authors. They also found other interesting abnormalities worth studying further.

    3- NEXT STEP: To get this published! HOW? The researcher team wants to A) Double blind the study, B) Increase the number of the sample (1 healthy control per each 2 patients), C) Use the more accurate Canadian Consensus Criteria for diagnosis and D) Add new markers to be measured in the study, such as the % of Perforin in NK and CD8 T cells ,and a much more in depth study of the B lymphocytes family, among others.

    HOW MUCH DO THEY NEED?: Just 12.000 €! ($13,000 or £8,700) (broken down in the official brochure of the project).

    WHO HAS MADE THIS PROJECT POSSIBLE?: The patients, who else!: Both the own patients (who paid for their own tests to make possible the project "Comparison of biomarkers in EM/SFC"), and ASSSEM (A National Spanish non-profit NGO, composed mainly by health professionals, dedicated to ME/CFS, FM and MQS)-- ASSSEM was and is the promoter of the previous and the current campaign-- they are the ones who got IrsiCaixa interested in us, and involved in this promising project, in the first place!


    HOW TO COLLABORATE?

    1. SHARE on social network, POST on other on-line ME/CFS platforms, PUBLISH the campaign on you blog, etc, etc. HELP TO SPREAD THE WORD!!!!

    2. DONATE:

    (Examples of currency conversions: $5=€4.6; $10=€9.2; $50 = €46.1, $100 =€92.2)
    --as of 3-7-2015

    2.1- PAYPAL or Credit card:

    Go to the website of ASSSEM, and click the yellow "Donar" button on the right, which appears about half way down the page when it first loads


    2.2 -Wire transference:

    IBAN: ES0901828732100201553888
    SWIFT/BIC: BBVAESMMXXX
    Bank: BBVA;
    Beneficiary: ASSSEM,
    Concept: “Objetivo 12.000”


    CAMPAING DEADLINE: March the 27th, 2015

    More information on: www.asssem.org

    - PERSONAL INPUT: As some of you know, I am an ME/CFS Spanish patient, administrator and owner of the national Spanish ME/CFS research forum, and also a 3rd year medical student. I have no relationship with ASSSEM or IrsiCaixa, other than individual supporter as a patient. I do believe WE ALL, the ME/CFS community, deserve that the data this team has found, sees the light. We got the attention of one of the most internationally known and recognized research team on AIDS, and they did perform a preliminary study which shed very useful results, that could be used as possible biomarkers, might as well open the field to further exploration of the immune aberrations in ME/CFS, and perhaps, lead to new therapies.

    If these preliminary results are confirmed in the new study they are willing to carry out, we will have a PUBLISHED DOUBLE BLIND CROSS-SECTIONAL STUDY, with a BIG SAMPLE, probably in an important international journal.

    AND WE ARE JUST LESS THAN 9.000 € AWAY at this moment from making this real! So...

    HELP in anyway you can! :)

    Best wishes to you all!
    Sergio
     
    Last edited by a moderator: Mar 17, 2015
  2. snowathlete

    snowathlete

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    These guys really are top-notch researchers and are well worth supporting.

    If you want to recap on their initial findings from a couple of years ago then there is a Phoenix Rising article/interview here: Spanish HIV Experts Give Aid to ME/CFS

    Hopefully that'll whet your appetite for more, and what Sergio describes above - this second study - under points 2 and 3, really sounds very promising to me. And a very achievable funding target. I'll be donating and sharing and hope others do too.
     
    leela, WillowJ, NK17 and 17 others like this.
  3. Tuha

    Tuha Senior Member

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    I dont understand research but it somehow seems interesting to me so I will donate and share on ME facebook pages.
    What is sad for me that our researchers are even not able to get a very small amount of money - 12 000 EUR from their research institutes, universities or other public sourcess. We really need much more public/ privat money for our researchers.
     
    WillowJ, zzz, Esther12 and 9 others like this.
  4. Sasha

    Sasha Fine, thank you

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    Thanks for posting about this @serg1942 - I've made a donation (quick and easy via Paypal).

    When you put up the new translation, can I make a plea for simpler formatting, without the underlining and the italics? They made it a bit hard to read for me! People read partly by recognising the shapes of words, so anything that disguises the shape (underlining, italics, all capitals) makes it a bit harder.
     
  5. cigana

    cigana Senior Member

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    You have to click the yellow "Donar" button on the right, which appears about half way down the page when it first loads.
    p.s. Thanks Serg well worth donating!
     
  6. Battery Muncher

    Battery Muncher Senior Member

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    Thanks for this Sergio. It looks like something that is worth supporting.

    I can't donate anything right now, but I will add it to my signature.
     
    Sushi, snowathlete, serg1942 and 2 others like this.
  7. Sasha

    Sasha Fine, thank you

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    @serg1942 - I'm wondering if you want to put the 12,000 euros in your title so that it looks achievable? Some of these crowdfunds are for very large amounts and yours has the advantage of a target that could be achieved very quickly. I think that could get you more donations.

    So maybe a title like 'Characterization of immunological biomarkers in ME/CFS: GIVE TO THE CROWDFUND, target only 12,000 euros/$13,000!

    It might also be worth pointing out in your text that 12,000 euros is US$13,000 or £8,700 (British people will be familiar with the euro conversion rate so I wouldn't bother putting that in your title.

    If you want to change your title, just tag Kina or report my post or yours so the moderators see it, and tell them what title you want.
     
    Sushi, snowathlete, serg1942 and 4 others like this.
  8. Scarecrow

    Scarecrow Annie Gsampel

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    You can change the title, using 'Thread Tools'. Choose the 'Edit title' drop down option.
     
    Sushi, snowathlete, serg1942 and 3 others like this.
  9. beaker

    beaker ME/cfs 1986

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    Can you put down some $ donation amounts and translate to Euros ? ( i.e. $5,10,25,50,100 amounts ) ?
    And will paypal and/or my cc charge for the euros conversion ?
     
  10. Sasha

    Sasha Fine, thank you

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    1 euro = $1.08 so they're roughly equivalent.

    I don't know if Paypal will charge you a currency transaction fee. I see from my account that I haven't been charged by Paypal to pay in Euros but I was charged (1%) to pay something in US$ the other week (I'm British and my account is in pounds sterling).

    When I use my credit card for foreign currency transactions, I think there's always a small fee.
     
  11. Battery Muncher

    Battery Muncher Senior Member

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    Good suggestions re: the thread title Sasha. This is very achievable, so that should attract people.

    Also, remember we already have 3000 euros already, so we need only 9000 (approx ~ $9,750/ £6,500) more!
    That should be achievable by 27 March.
     
    Sushi, snowathlete and serg1942 like this.
  12. Sasha

    Sasha Fine, thank you

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    I didn't notice the deadline! That should go in the title too, I think.
     
    Sushi, snowathlete, serg1942 and 2 others like this.
  13. Battery Muncher

    Battery Muncher Senior Member

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    Also, sorry for double posting, but I wrote a little signature. Please feel free to copy it!

    If there's any mistakes in it, or anything I should do differently, please let me know.

     
    Never Give Up, DanME, Sushi and 2 others like this.
  14. beaker

    beaker ME/cfs 1986

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    Thanks !

    To note : When I put a decimal point after my amount it said invalid amount.
    Or maybe I did something else wrong . I couldn't translate the error box, but when I took that out it worked !
     
    Sasha likes this.
  15. serg1942

    serg1942 Senior Member

    Messages:
    383
    Likes:
    641
    Spain
    PROJECT: Characterization of immunological biomarkers in ME/CFS

    (plain-format version)

    (Read the entire project); (Original in Spanish) --Please excuse the grammar mistakes in the translation. A better one will be uploaded soon--

    SUMMARY:

    1- IrsiCaixa, an internationally-recognized institute for AIDS research, published in 2013 a study in wich they foundalterations in subsets of both T and NK cells. Specifically they identified eight molecules associated to poor immune systemfunction, that could be used for diagnosis (source).
    --For further information, read the article: "Spanish HIV Experts Give Aid to ME/CFS" (by Joel (Snowathlete on PR), April 20013)

    2- They expanded this preliminary study, with the project called "Comparison of biomarkers in EM/SFC", for which a crowdfunding of 29.000 € was launched and achieved last year. (Link to the thread)

    The preliminary results obtained from this second comparative study (from 193 participants and 20 healthy controls), showed specific immunological abnormalities in EM/CFS patients, and identified two subgroups of patients, according to different combinations of NKCD57 and NK NKP46 cells. These subsets could be explained by reactivation of herpes viruses (page 4), according to the authors. They also found other interesting abnormalities worth studying further.

    3- NEXT STEP: To get this published! HOW? The researcher team wants to A) Double blind the study, B) Increase the number of the sample (1 healthy control per each 2 patients), C) Use the more accurate Canadian Consensus Criteria for diagnosis and D) Add new markers to be measured in the study, such as the % of Perforin in NK and CD8 T cells ,and a much more in depth study of the B lymphocytes family, among others.

    HOW MUCH DO THEY NEED?: Just 12.000 €! ($13,000 or £8,700) (broken down in the official brochure of the project).

    WHO HAS MADE THIS PROJECT POSSIBLE?:The patients, who else!: Both the own patients(who paid for their own tests to make possible the project "Comparison of biomarkers in EM/SFC"), and ASSSEM(A National Spanish non-profit NGO, composed mainly by health professionals, dedicated to ME/CFS, FM and MQS)-- ASSSEM was and is the promoter of the previous and the current campaign-- they are the ones who got IrsiCaixa interested in us, and involved in this promising project, in the first place!


    HOW TO COLLABORATE?

    1. Share on social network, post on other on-line ME/CFS platforms, publish the campaign on you blog, etc, etc.

    Help to spread the word!!!!

    2. DONATE:

    (Examples of currency conversions: $5=€4.6; $10=€9.2; $50 = €46.1, $100 =€92.2)
    --as of 3-7-2015

    2.1- PAYPAL or Credit card:

    Go to the website of ASSSEM, and click the yellow "Donar" button on the right, which appears about half way down the page when it first loads.


    2.2 -Wire transference:

    IBAN: ES0901828732100201553888
    SWIFT/BIC: BBVAESMMXXX
    Bank: BBVA;
    Beneficiary: ASSSEM,
    Concept: “Objetivo 12.000”


    CAMPAING DEADLINE: March the 27th, 2015

    More information on: www.asssem.org

    - PERSONAL INPUT: As some of you know, I am an ME/CFS Spanish patient, administrator and owner of the national Spanish ME/CFS research forum, and also a 3rd year medical student. I have no relationship with ASSSEM or IrsiCaixa, other than individual supporter as a patient. I do believe WE ALL, the ME/CFS community, deserve that the data this team has found, sees the light. We got the attention of one of the most internationally known and recognized research team on AIDS, and they did perform a preliminary study which shed very useful results, that could be used as possible biomarkers, might as well open the field to further exploration of the immune aberrations in ME/CFS, and perhaps, lead to new therapies.

    If these preliminary results are confirmed in the new study they are willing to carry out, we will have a published doble-blind cross-sectional study, with a big sample, probably in an important international journal.

    And we are just less than 10.000 $ away at this moment from making this real! So...

    HELP in anyway you can! :)

    Best wishes to you all!
    Sergio
     
    Last edited: Mar 7, 2015
    lycaena, adreno, Sushi and 4 others like this.
  16. Sasha

    Sasha Fine, thank you

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    Thanks, @serg1942 - that's much easier to read! You could cut and paste that version into your first post to replace the original, if you wanted, for people who are new to the thread.
     
    snowathlete likes this.
  17. serg1942

    serg1942 Senior Member

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    Hi @snowathlete! Thank you very much for your help in spreading the word! I did not remember last night your fabulous article. I have added it to my first massage for it to be handier!

    Hi @Tuha, thank you! It is sad actually. The worst (and what says a lot about patients in general), is that the biggest part of the needed budget to get this study published was already paid by the own patients (almost 200). Each one had to pay around 200 € for the analysis, logistics, time and infrastructures of the researchers, and for the further statistical analysis, etc.. And they gave this almost blinded, just trusting that these team could find abnormalities in their immune system --obviously, based on the fact that this has been probed many times, but normally in small studies, etc, which eventually have little impact out of the ME/CFS "world". If you read the 12.000 € they need now, broken down for each of the necessary steps, it is just nothing compared with what patients has already given. And the most important thing here is that they have found important things --some of which they have shared--, that they cannot make public until they can do it in a scientifically way that allows them to publish, as it couldn't be otherwise... so yes, a shame, but we have a great opportunity here!

    Hi @Sasha! Thank you so much for your collaboration and for letting me know that Paypal works fine! As for your "plea", I have written on the top of my message, a link to the same text, in just a simple format. Thing is that there are other patients who just cannot read a long text, so they do need to highlight the important things so that they can "read between lines"... Do you think this way is fine to address the two opposite needs of different fellows?-- I just read your last post. If I substitute one format for the other, there will be patients who will still have problems as well...

    And, as for your 3 proposals, I have bought all of them! ;) (Any kind of help in this way is extremely useful of course, given I am not a native...So really, thank you for the tips!).

    Hi @cigana! I have stolen your explanation about where the donation button is located on the website, hope you don't mind me plagiarizing you! ;)

    Hi @Battery Muncher!, that'll be perfect, thank you!!! That's a great idea for others to contribute as well!!!

    Hi @beaker, yes, of course, good idea! I added it to the text!!! As for your question about Paypal, not that I know. I have paid overseas many times, and it automatically converts the currency according to the difference at the moment--but I am not 100% sure. Maybe anyone else can confirm this? And about the "dot" for decimals, normally you need to write a "comma", but you made it work somehow! ;)

    Ok, THANK YOU to everybody for your help, contribution, tips, etc. Yes, I do hope we will reach the required amount!

    PS- Please excuse me if it takes me a little to reply to any of you. I am inundated with an assignment that I need to continue right now!!! I'll do my best to keep an eye on whatever problem may arise, or even better, on other good ideas you might come out with!

    Best!
    Sergio
     
    Helen, Never Give Up, maryb and 6 others like this.
  18. Sasha

    Sasha Fine, thank you

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    Thanks, Sergio - that's a good solution to have that line at the top. I'd change the wording slightly:

    Link here to plain-format version of the text below (in case the underlining, italics, or all-capitals make it hard for you to read).
     
  19. snowathlete

    snowathlete

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    Thanks @Sergio for your hard work too!

    I just donated via my phone using PayPal. If you are on your phone and follow the link you may not see the yellow donate button as the page gets optimised for your mobile display (and optimised in this case means the button is not displayed :lol:) - in this case, just scroll to the bottom of the page and in the middle, click the link to display the full desktop version of the website. The page will reload and you will see the yellow button and can click it!
     
  20. serg1942

    serg1942 Senior Member

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    Thanks @Sasha! 4th plagiarism! :angel:
     
    Sasha likes this.

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