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"It's been found immunological abnormalities and 2 biomarkers on CFS" Spanish National news paper

Discussion in 'Latest ME/CFS Research' started by serg1942, Mar 18, 2014.

  1. serg1942

    serg1942 Senior Member

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    This was presented yesterday. No idea when an English summary will appear and/or weather they will publish these findings or rather, they'll wait until the final study is done, within a year.

    Anyway, I am sure an English summary will appear soon . As for now here's the original article written in a very well known national newspaper:

    http://www.lavanguardia.com/vida/20...aggregation&fb_aggregation_id=288381481237582

    And here is the thread in the CFS-investigation-forum I run, where more details on the research are being posted and debated:

    http://www.sfc-em-investigacion.com/viewtopic.php?p=19441#p19441

    Best!
    Sergio
     
    Last edited: Mar 18, 2014
  2. A.B.

    A.B. Senior Member

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    Thanks Sergio. Could you provide a human translation for points 1-9 in the post on the CFS-investigation-forum? It describes the findings but I don't fully trust a machine translation.
     
    Last edited: Mar 18, 2014
  3. Sasha

    Sasha Fine, thank you

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    Google Translate:

    Barcelona, March 17 ( Reuters) - . Sufferers of Myalgic Encephalomyelitis , also known as Chronic Fatigue Syndrome (ME / CFS ) have immunologic abnormalities , which allowed us to identify two potential biomarkers of disease.

    This discovery was made thanks to a study released today by the Association of Health Service of Myalgic Encephalomyelitis ( ASSSEM ) .

    About 200 patients suffering from ME / CFS , and have assumed the cost of their analyzes , participated in the study, which was based on a comparison of biomarkers of the disease, which has corroborated immunological abnormalities marked and two potential biomarkers in a high percentage of people affected by ME / CFS .

    Comparative biomarker was based in part on the results of an initial study led last year by the Institute for AIDS Research IrsiCaixa .

    This study, coordinated by the researcher of the Research Institute Germans Trias i Pujol in IrsiCaixa , Julia White , identified alterations in the immune system molecules August 12 CFS patients , associated with a poorer immune system functioning , which could serve to improve the diagnosis of this disease.

    Following this work , ASSSEM IrsiCaixa proposed include more patients in the study , but the lack of public funding to cover the cost of the project and lack of patients diagnosed in specialized units became unaffordable this extension .

    Fearing that this development did not have clinical impact , ASSSEM decided to bear the costs , with the collaboration of those affected, to make a comparison of biomarkers.As explained ASSSEM president , José Luis Rivas , preliminary results " reaffirm that the investigation of the immune system is the way to know this disease , diagnose and develop a treatment.""

    We need allies in basic research , as IrsiCaixa , to further investigate our disease and its relation to the immune system ," said Rivas.

    Therefore, ASSSEM today launched a campaign on social networking micro-grants to fund the research project " Characterization of regulatory T cells in patients with Myalgic Encefalomilitis / Chronic Fatigue Syndrome " .

    The association needs to raise 29,000 euros, the campaign hopes to collect microfinance has started today and will last 40 days , under the title " Research of new tools for diagnosis of ME / CFS .

    "The researcher Julia White explained that the research project will be carried out if the money collected will continue the last year the same researchers.

    Regulatory T cells are a key element in the immune system, controlling both the response to pathogens and autoimmune responses ."

    Because the control of pathogens and autoimmune disorders are altered in patients with ME / CFS , we believe that the study of these cells may provide relevant data to understand the involvement of the immune system in this disease " , affecting 2% population , said White .

    The researchers' goal is also to define new diagnostic tools, better understand the causes of Chronic Fatigue Syndrome and identify therapeutic targets.

    The study will last for one year and be done with samples already stored in the laboratory IrsiCaixa , so it will not mean any discomfort to those affected.
     
    Iquitos, justy, MeSci and 5 others like this.
  4. Sasha

    Sasha Fine, thank you

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    @serg1942 - is this a crowdfunding project? If so, I think it would be helpful if your thread title could reflect that.

    Is there a link where people can donate?
     
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  5. serg1942

    serg1942 Senior Member

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    A.B: Well, this was just a very short tweet that was sent yesterday. In a couple of days the videos of the conference will be uploaded. Then I will do my best to get an English summary of the main technical points. It seems there were a lot of complicated scientific data that most patients couldn't follow. So I'll have to wait for he videos to do this work. (I couldn't travel to Barcelona)

    SASHA: Wow! ¿Hablas español??;) Thank you very much for the rapid translation! It's very kind of you! I am herxing like hell right now and trying to finish an assignment of the med school, so had no energy left to do it!

    This Thursday it will appear the web-tool for donations, with a full description of the details. Keep in mind that this team, Irsi Caixa, is one of the most international recognized team on HIV research, and was the one who months ago published the paper where 8 immunological abnormalities were found in CFS (some of them new):


    http://www.irsicaixa.es/ca/screenin...n-patients-suffering-chronic-fatigue-syndrome

    I'll let you know of the news,
    Sergio
     
    Last edited: Mar 18, 2014
    mango, Iquitos, justy and 8 others like this.
  6. serg1942

    serg1942 Senior Member

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    Ok Sasha, it was google translation! I didn't read it. I hope to get a more detailed information and then get a reliable English tranlation of it, when more info is available.

    Sergio
     
    Sasha likes this.
  7. serg1942

    serg1942 Senior Member

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    Yes Sasha, it is a crowdfunding project, that will pursue to get the 29.000 euros needed to carry out a follow up study of this first preliminary trial.

    Yes, I will open a new thread to make this clear, when the proper information and tools are available in couple of days. I assume the info will be in English as well, and I am trying to cooperate with this.

    Sergio
     
    justy, MeSci, WillowJ and 4 others like this.
  8. A.B.

    A.B. Senior Member

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    Thanks. So that is why findings were reported, but at the same time the article spoke of a future study.
     
  9. Bob

    Bob

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    They seem to have some preliminary findings and they need more money to do a larger follow-up study.
    I'm not sure if they just want to extend an ongoing study, or if they want to start a new study based on previous findings.
     
  10. Sasha

    Sasha Fine, thank you

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    I was looking GREAT there for a while! :cool:
     
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  11. Bob

    Bob

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    There's more details on the ASSSEM's website here:
    http://www.asssem.org/

    The Google translations of the relevant text from this website are quite impenetrable for my poor brain...

     
    Last edited: Mar 18, 2014
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  12. A.B.

    A.B. Senior Member

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    This Google translation is misleading, as the original clearly says "low NKCD57 and high NKp46" ("NKCD57 bajo y NKp46 alto").
     
    Bob likes this.
  13. serg1942

    serg1942 Senior Member

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    SASHA: yes, you had a few minutes of glory! :p!!! Seriously, the intention is what matters! ;)

    BOB: they want to start a new study based on previous findings, using the blood of the two hundreds patients who paid for this study, and also to add more controls in order for the results to be statistically significant. For this study, it was the patients who paid for their own analysis, and also for the analysis of the healthy controls. In the new study they want to get funds for, they will try to do deeper in to the findings previously found. Anyway, The exact details will be available on Thursday... There seems to be plenty of potential for this project, and the needed money is not much, because they already have the blood samples, so logistics will be much cheaper.

    Sergio
     
    peggy-sue, justy, Sasha and 1 other person like this.
  14. snowathlete

    snowathlete

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    As Sergio says, these guys are top draw researchers, very well respected internationally. Very good at what they do, so their findings get noticed. In my opinion, if you're thinking of donating anything this year toward research, then this work from Spain and Lipkin's gut study are the two standout items most likely to make a difference to us.
    For a recap on their findings from last year: Spanish HIV Experts Give Aid to ME/CFS
     
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  15. Aileen

    Aileen Senior Member

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    Uh, hold on a minute. The Spanish I learned in high school has mostly been forgotten but I was able to understand some of it. Unless I am misreading this, I see a rather large problem.
    According to this quote, 8 markers were identified in 12 patients. There were 200 in the study. How does 12 out of 200 become an exciting find? :confused: I really hope I am missing something here.
     
    serg1942 likes this.
  16. A.B.

    A.B. Senior Member

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    This refers to an initial study, not the one involving 200 patients.

     
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  17. Bob

    Bob

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    That seems to refer to an initial study of 12 patients:
    The 200 person study seems to be a different study:
     
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  18. serg1942

    serg1942 Senior Member

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    Hi Aileen! Yes, you are missing something! ;) The 8 patients were from the first study they published 1 year ago:

    http://www.irsicaixa.es/ca/screenin...n-patients-suffering-chronic-fatigue-syndrome

    That study lead to this second trial, where 200 patients and some healthy controls have been analysed. In the light of the encouraging results found, they want now to go for the final step, that is, a third trial, where they will try to get enough healthy controls in order to get statistically significant results.

    The second trial was paid by the own patients. The 3rd trial is for which they will need to get funds, as they want to make it right, so that they can publish a solid paper, with solid results, with enough patients and controls.

    Best,
    Sergio
     
  19. Aileen

    Aileen Senior Member

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    Whew! Thank you Sergio! I feel so much better knowing this. Very encouraging indeed.
    Huh, those Spanish classes I did lousy in 30 years ago failed me. I wonder how that happened? :lol::redface:
     
    Bob likes this.
  20. Aileen

    Aileen Senior Member

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    The association needs to raise 29,000 euros, the campaign hopes to collect microfinance has started today and will last 40 days , under the title " Research of new tools for diagnosis of ME / CFS .
    This seems like a very small amount to raise for a very serious research study. If some of the larger national patient organizations donated, I would think it could be raised quite easily. We have raised $25,000US in online contests for 1 group in 1 contest more than once.

    Currently, the main Canadian ME/FM organization, the National ME/FM Action Network is in a contest and could win $10,000 if enough Canadians outside Quebec get voting daily until April 8. Maybe they would donate some of this money to this study if enough of their members wanted this?? Of course, we have to win it first!
     

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