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

serg1942

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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
 
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A.B.

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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.
 
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Sasha

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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.
 

serg1942

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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
 
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serg1942

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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
 

serg1942

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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
 

A.B.

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

Bob

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

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...

Google Translation said:
1.-We found two markers, low and high NKp46 NKCD57 approx 50% of the sample (ie, about 100), obviously with variations (you may only have one altered, or both ...)

. 2 - We believe that lowest of NKCD57 and high or very high levels of NKp46 would condition a severe clinical in SFC , in which the patient is bedridden, moves with difficulty even in a wheelchair, with visual and auditory nuisances important and that we wanted to be called "bed-couch."
3.-There is another group of patients, that profile is the reverse, with very high and low NKCD57 NKp46.
4.-have raised the possible involvement of CD57 low values with chronic Lyme, although we have no clear answers.
5 -. Additional statistical correlations values are marked with high CD4 and CD8 cytotoxic low
. 6 - Other subpopulations that do not show statistically significant differences, but groups of outliers could make us think of the distinct features found in elevated CD4/CD8 ratios, low levels of cytotoxic CD8, and high levels of CD8 suppressor and NKbrigh some high values.
7.-remain pte s valuation, low values of Naïve Plasma cells and B cells, very low levels of perforin in NK's and very high levels of perforin in CD8 and outliers in subpopulations expressing CD69 +
8.-From data aureportados by participants find decreased serotonin levels (64%), peroxidase antibodies (80%), growth hormone GH (60%), insulin-like factor (70%), 25-D Vitamin (95%) and mean body ª t for 156 patients (35.95 º C).
9.-therapeutic alternatives pose as Rituximab, affected with severe profile (CD57 low), hormone GH in small doses in FM and have been listed different treatments that patients have been "testing" based on the chaos that accompanies therapeutic the SSC.
10.-We have reported that in a few days, we will open the physical headquarters ASSSEM in Cartellà 178 Street, entlo 2nd esc A, 08031 - Barcelona, telephone 93 564 20 38 (morning) , which will share space with the headquarters ASSSEMBiomedic that hopes to have medical staff and to be able to coordinate with different especialitas (by request, immunologist, endocrinologist, gastroenterologist ...)
11.-I attend and we will help you interpret your analytics in the context of the study and to what we know-really, no values or immunologists with whom we consulted successfully interpreted-and hopefully in the next few months to go away citing try to find similar symptoms in similar analytical.
12.-We only ask a small contribution as partners (5 € per month if you can) that will end either, donating them to the new project IrsiCaixa Treg (ASSSEM Thanks to small contributions and membership fees, we made a move to IrsiCaixa € 3,500).
Google Translation said:
ASSSEM DAY WITH COLLABORATION IrsiCaixaON THE RESEARCH Myalgic Encephalomyelitis / Chronic Fatigue Syndrome
ASSSEM launches campaign to fund research into new diagnostic tools Myalgic Encephalomyelitis / Chronic Fatigue Syndrome


  • In order to further advance scientific research Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS), theAssociation of Health Service of Myalgic Encephalomyelitis(ASSSEM) launches a campaign to boost Verkami micropatronage in draft Research Institute for AIDS Research IrsiCaixa that aims to define new diagnostic tools for this disease.
  • ASSSEM organizes a conference for Monday in Barcelona on research of ME / CFS, in which the results of a comparative biomarker made by patients will be presented.
  • This comparison, made by people with ME / CFS, supports immune dysfunction and two potential biomarkers in patients suffering from the disease.
  • On the day the investigator IGTP in IrsiCaixa Julia White will present the project to be financed campaign Verkami and talk about the current state of research of ME / CFS.


Barcelona, March 14, 2014 -. Around 200 patients suffering from Myalgic Encephalomyelitis (ME), also called Chronic Fatigue Syndrome (CFS), participated in a comparative biomarker in ME / CFS, assuming the cost of the analysis. This comparison has corroborated marked immunological abnormalities and two potential biomarkers in a high percentage of people affected by ME / CFS. The comparison has been promoted by the Association of Health ServiceMyalgic Encephalomyelitis (ASSSEM) , which will release the results this Monday, March 17, in a day in the Casa del Mar de Barcelona (1-13 Albareda street) at 17.00 .
Comparative biomarker that has conducted ASSSEM was based in part on the results of the initial study led by the Research Institute IrsiCaixa AIDS , published in 2013 inMagazine Journalof Translational Medicine , which had a large international echo. The study, coordinated by the researcher in IGTP IrsiCaixa Julia White, identified changes on 8 molecules of the immune system in 12 patients with CFS, associated with poorer immune function, which could be used to improve the diagnosis of this disease.
Following the publication of this work, ASSSEM proposed IrsiCaixainclude more patients in the study, but the lack of public funding to cover the high cost of the project and the lack of patients diagnosed from 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.According to Jose Luis Rivas, president of ASSSEM , preliminary results "reaffirm that the investigation of the immune system is the way to advance the knowledge of this disease, to define a diagnosis and develop a treatment."

Crowdfunding campaign to finance the research project IrsiCaixa

"We need allies in the field of basic research, as IrsiCaixa to continue our research into disease and its relation to the immune system," says Rivas.
Therefore, ASSSEM Verkami has decided to use to start a campaign micro-grants to finance the research project IrsiCaixa " Characterization of regulatory T cells in patients with Myalgic Encefalomilitis / Chronic Fatigue Syndrome . " They need to raise 29,000 euros, which cover the budget of this project. campaign will begin on Monday March 17 at Verkami and last 40 days, entitled "Investigation of new diagnostic tools Myalgic Encephalomyelitis / Chronic Fatigue Syndrome" . ASSSEM calls for solidarity citizens to work with a donation through Verkami or by crediting the account ASSSEM: BBVA 0182 1413 69 0201553881, indicating the concept name, surname and "Donation research."
During the day on Monday in Barcelona, ASSSEM present campaign micro-grants and the various options for collaborating. Meanwhile, investigatorIGTP in IrsiCaixa Julia White will present the research project will be carried out if the campaign is successful, and continues the published last year by 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 can provide relevant for understanding the involvement of the immune system in this disease data," says Julia White. The goal of researchers is in addition to defining new diagnostic tools, better understand the causes of Chronic Fatigue Syndrome and identify potential 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.

The Central Sensitivity Syndromes (SSC)

Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) is part of the so-called Central Sensitivity Syndromes (SSC), along with FibromyalgiaMultiple Chemical Sensitivity and the Electrohipersensibilidad.Arediseases with estimated between 1.5% and 2% of the population incidence , and which can occur simultaneously in some patients.
Some of the scientific literature on the SSC are based on the assumption that share a mechanism biophysiologicalneuroinmunoendocrina dysregulation , Intricate, yet largely unknown, justifying the underlying cause of central sensitization.
Neuroinmunoendocrina Because the nature of these diseases is not being recognized in our country, studies like this in basic research are essential for those affected to be able to get proper medical care, financial assistance and recognition that today still do not have. Currently, those affected, in a high percentage suffer serious and disabling disease extent, take more than five years on average to be diagnosed, partly because of medical ignorance. Then they are "parked" in primary care or in units where they are treated without the proper knowledge, ignoring the true nature of the disease, its severity and medications which may even be harmful. Not being recognized as disabling, many sick, defenseless against doctors and courts of justice, are also at risk of social exclusion, further aggravating their condition.
 
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A.B.

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We found two markers, low and high NKp46 NKCD57
This Google translation is misleading, as the original clearly says "low NKCD57 and high NKp46" ("NKCD57 bajo y NKp46 alto").
 

serg1942

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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
 

snowathlete

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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
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
 

Aileen

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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.
Julià Blanco, identificó alteraciones en 8 moléculas del sistema inmunitario de 12 pacientes con SFC,
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.
 

A.B.

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

La comparativa de biomarcadores se ha basado, en parte, en los resultados de un estudio inicial liderado el año pasado por el Instituto de Investigación del Sida IrsiCaixa.

Este estudio, coordinado por el investigador del Instituto de Investigación Germans Trias i Pujol en IrsiCaixa, Julià Blanco, identificó alteraciones en 8 moléculas del sistema inmunitario de 12 pacientes con SFC, asociadas a un peor funcionamiento del sistema inmunitario, que podrían servir para mejorar el diagnóstico de esta enfermedad.
 

Bob

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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.
Julià Blanco, identificó alteraciones en 8 moléculas del sistema inmunitario de 12 pacientes con SFC,
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.
That seems to refer to an initial study of 12 patients:
ASSSEM said:
Comparative biomarker that has conducted ASSSEM was based in part on the results of the initial study led by theResearch Institute IrsiCaixa AIDS , published in 2013 inMagazine Journalof Translational Medicine , which had a large international echo. The study, coordinated by the researcher in IGTP IrsiCaixa Julia White, identified changes on 8 molecules of the immune system in 12 patients with CFS, associated with poorer immune function, which could be used to improve the diagnosis of this disease.
The 200 person study seems to be a different study:
ASSSEM said:
Around 200 patients suffering from Myalgic Encephalomyelitis (ME), also called Chronic Fatigue Syndrome (CFS), participated in a comparative biomarker in ME / CFS, assuming the cost of the analysis. This comparison has corroborated marked immunological abnormalities and two potential biomarkers in a high percentage of people affected by ME / CFS.
 

serg1942

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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
 

Aileen

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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:
 

Aileen

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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!