Crowfunding for a study about etiopathogenesis and try to set potencial biomarkers

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Dear mates,

I want to inform about a crowfunding campaign for a study about etiopathogenesis of ME/CFS that could lead to set potencial biomarkers for the disease.

The following is based in our mate @Manuel work:

https://forums.phoenixrising.me/thr...lease-share-this-informat.62038/#post-1009323

https://forums.phoenixrising.me/thr...-your-doctors-the-cause-of-your-cfs-me.61905/

https://forums.phoenixrising.me/thr...ated-with-epstein-barr-virus-infection.60582/

https://forums.phoenixrising.me/threads/new-possible-diagnostic-method-for-cfs-or-me.61772/


The current objective is of 46.800,00 € and the link for donations is the following:
https://helpify.es/comunidades/todo-por-la-causa-del-sindrome-de-la-fatiga-cronica/


All you have to do is to click on "DONAR" button and then just put an amount in the field "Donación" (this amount would be in € - you can convert it to $ here https://fx-rate.net/calculator), fill your full name in the field "Nombre y apellidos" and your email in the last field. Then you just need to choose a payment method (Credit Card or Paypal) and proceed.


You must also mark the checkbox "Acepto los Términos y condiciones y la Política de privacidad" (i accept the terms and conditions including the privacy policy) and in case you prefer to make an anonymous donation mark the checkbox below "Donar como anónimo" (donate as anonymous")


I translate the message of the campaing and also take this opportunity to ask you for support in all means possible (if you can´t or don´t want to donate, you can just share in your social networks, email this post to contacts, etc).



All for the Chronic Fatigue Syndrome cause


How do you feel when there's no solution to a problem? You may experience sadness, helplessness, disappointment, failure, anger, fear, or even misunderstanding. That's why we're here. We want to find a solution for Chronic Fatigue Syndrome.


The initiative comes thanks to Manuel Ruiz Pablos, a patient suffering from this disease, and his girlfriend Rosario Montero Mateo. Manuel's life was like that of any other university student, student of Medicine, who is enjoying one of the best stages of youth: travel, friends, sport ... And suddenly one day woke up with what seemed a cold. His life changed completely. After spending a lot of time from doctor to doctor and with unexplained chronic fatigue, he was finally diagnosed with Chronic Fatigue Syndrome. He tried to continue the degree but the symptoms made it impossible. Since then, together with Rosario, who is currently preparing the medical internship, both fight and study to find a cure for this disease. They have it clear: "we want the people who suffer it to recover their lives".


Chronic Fatigue Syndrome or Myalgic Encephalomyelitis is a chronic disease that leads to physical fatigue and impaired cognitive capacity. It presents neurological, immunological and endocrine alterations. It lasts for weeks or even months. It is not relieved by rest and may incapacitate the patient. The person suffering from this disease may feel like an old man unable to move because of the pain he suffers.


It is untreated and its cause is unknown. Drug treatments try to alleviate its many symptoms and other co-morbid diseases. This is one of the many reasons why CIMA has decided to undertake research into the cause of this disease in order to treat it effectively.



We have a hypothesis to start with:

Several investigations have demonstrated the presence of potential biomarkers that would indicate inadequate immune function and signs of autoimmunity as well as alterations in NK, cytokine profiles and T-cell response capacity. Therefore, we propose this hypothesis: patients with Chronic Fatigue Syndrome may have an alteration in the activation of T lymphocytes caused by a decrease in the HLA-II antigenic presentation due to intracellular pathogens.


Symptoms

ME/CFS usually begins with an infectious process in a commonly active person, which begins with fever, cough, odynophagia, myalgia... i.e., flu-like symptoms. From this onset, a permanent exhaustion is established that does not improve with rest. It worsens with both physical and mental activity that becomes persistent. When chronic symptoms are established, fatigue, febricula or temperatures of 35ºC predominate when the disease is more advanced. Also arthralgias, myalgias, cervical adenopathies, intestinal symptoms, increase in respiratory allergies, hormonal alterations... etc. It should be noted that all these symptoms are not present in all patients.





Thanks in advance!!!



Best :hug::hug:
 
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Crowfunding for a study about etiopathogenesis and try to set potencial biomarkers
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Do you know what a flu is? That general malaise that doesn't let you get out of bed, that muscular pain that hurts you until you lift an arm, that cognitive disability that obligatorily prevents you from going to work because you only want to sleep because your body screams and most of the time you can't because insomnia prevents it... Imagine having it 365 days a year and you will understand the harshness of this disease. Myalgic encephalomyelitis or chronic fatigue syndrome is a disease that is characterized by extreme fatigue persistent for more than 6 months that prevents you from doing your daily life. Most of the time it appears after an infectious process (especially after an Epstein Barr virus infection). Imagine having a strong flu and never being able to recover. The sick are forced to nip in the bud with everything, with their work, with their friends, with their travels... It is as if suddenly you became a person of 90 years. Millions of stories have gone untold and will go untold if you don't help me. I ask you to read carefully: Without research there is no diagnosis. Without diagnosis there is no treatment and without treatment there is no cure. We need your help to carry out this project and I must explain the reason we have for it. My name is Manuel, I am sick with chronic fatigue syndrome and I had to give up my medical career because of the disease. I have had to leave behind so many things... but not only me, but millions of people who share this disease. That's why this project is essential for me. Because my life is at stake so I know perfectly well what you are going through. This project is made for all of us. We want to show that there is an immunodeficiency behind CFS/ME because if that were the case we would be closer to a possible treatment and if that were the case they would at least be able to diagnose with an analytical biomarker and not by a diagnosis of exclusion as it is done now. If the result was positive they would stop recommending cognitive therapy or sport as a treatment because nobody would think of sending a patient with HIV to the gym or psychologist to improve their illness, would they? I promise you that I will leave my life in this project because I am with you, because I understand you and because I know how hard this disease is. We need more research and if putting my grain of sand helps to change a bit about this disease I am willing to go where it is needed.

"to those who are looking for
even if they don't find

to those who advance
even if they're lost

to those who live
even if they die."

Mario Benedetti

We have a hypothesis to begin with:
Several investigations have demonstrated the presence of potential biomarkers that would indicate inadequate immune function and signs of autoimmunity as well as alterations in NK, cytokine profiles and T-cell responsiveness. Therefore, we propose this hypothesis: patients with chronic fatigue syndrome could have an alteration in the activation of T lymphocytes caused by a decrease in the HLA-II antigenic presentation due to intracellular pathogens.

This study will be carried out at CIMA, which is the research centre of the University of Navarre. From here we would like to thank Dr Bruno Paiva and his team for making it possible. If we manage to collect everything, the blood samples will be collected at the University of Navarra clinic in Madrid (to make it more accessible to everyone).
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Fundraising: everything we raise through this platform goes INTEGRATELY to pay the analytics of the study. Therefore, no patient included will have to pay for the analytics. Only what it costs to travel to Madrid and this is the cause of doing it in Madrid, to facilitate travel from anywhere in Spain. Needless to say, none of the researchers are going to charge for carrying out the study and they will only pay for the analyses. Remember that even if we do not all enter into this study if the answer is positive, it will affect ALL of us, not just those included in the study. Therefore I require your solidarity to try to raise funds because without it is not possible. Everything you can help will be great no matter how little it is. There are many of us who are affected and if we unite I believe that we can achieve it.
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HOW TO DONATE: It's very easy! You get into the link. You click on donate and where by default puts 20 euros click and put the amount you want. You must fill in your name and your mail to verify that you are a person and there are two payment options Card or Paypal. Please note that paypal takes a while to appear. On the other hand you also have the option that your donation is anonymous if you do not want to appear simply by clicking on the option below. Don't forget to accept it.
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Thank you very much in advance and I hope this is good news for everyone.

https://helpify.es/comunidades/todo...BuHOCt0RpJiqqrm6Un6gIyZKFe6k_m7AY1MoHzjhos76M SFC-Articulo.jpg