New Study in CFS-ME Patients: Possible Acquired Immunodeficiency

[Manuel]

Good afternoon,
first of all I totally agree with what @Hip says.
The difference between people who develop a disease associated with EBV and those who don't depends on some genetic factors that we will discuss in the study. But this is not only the case with this virus, but with many more and above all intracellular pathogens. The problem with all the research that has tried to link CFS with EBV or multiple sclerosis with EBV is that they are looking for copies of the virus and in reality the problem is found in the cells with latency of this virus. These latent cells, along with your genetics, are what cause the immune alteration.

Currently when it comes to taking patients for a study on CFS / ME are not divided into subgroups by pathogens hence no conclusive results are found. It also does not take into account the years with the disease, since a person newly ill with CFS / ME is not the same as one who has 20 years with the disease. The results would also be different.
Here is an example of HIV. When a person is infected with HIV, AIDS takes 10 years to appear. And during these years you go through different stages. After the acute infection, there is a latent clinical infection, with persistent swelling of the lymph nodes. Then it passes to the symptomatic stage where latent virus reactivations begin to appear, such as herpesvirus, fungal infections, diarrhea, weight loss, but not yet AIDS. This is the stage that resembles CFS/ME patients.
Then we move on to the AIDS stage, which is when CD4 lymphocytes start falling below 200 (it takes 10 years from when you become infected with HIV until you have AIDS).

That is, if we catch patients newly infected with the HIV virus and those who already have AIDS, the immunological results are different.

This is what we have seen in the analysis provided by the patients. Where patients who had been with the disease for more years had low levels of CD4 and CD8. But the patients who had been for a few years had these normal values and only low activated T lymphocytes. All of this is what we want to verify in the study and I would appreciate your help with fundraising and outreach. Because like you I am also sick and I want this to be verified as soon as possible. If our hypothesis is fulfilled we will have an acquired immunodeficiency diagnosis. This would allow us to seek specific treatment, such as what is currently being done to eliminate HIV.

With a little that each sick person, family or friends donate in a few days, the total could be collected.
Thank you very much in advance,
Greetings,
Manuel

Pd:If our hypothesis is confirmed we have another diagnostic method to confirm the results in another study.

 

[Manuel]

The study will be carried out at the CIMA of the University of Navarra, directed by Dr. Bruno Paiva. It will be done to 100 CFS/MS patients.

What would we achieve if our hypothesis is fulfilled?
1) A diagnosis of immunodeficiency. We would no longer be invisible to healthcare.

2) Access to treatments for this type of immunodeficiency.

3) To begin to develop specific treatments that eliminate cells with latency of intracellular pathogens. (E.g. Epstein barr virus)

For example, if 2,000 patients donated 20 euros, the study could already be done (is an example). I know that many of us cannot work and we have few economic resources. But we can try to collect the 20 euros among family and friends. If you can't for any reason, you can always donate less. The important thing is that we all participate to the extent of our possibilities. Because this study is aimed at all of us and only together we can make a difference.
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Fundraising: everything we raise through this platform goes entirely to pay the analytics of the study. Therefore, no patient included will have to pay for the analytics. It goes without saying that none of the researchers will charge for carrying out the study, they will exclusively pay for the analytics. Remember that even if we all do not enter into this study if the response is positive will affect us all, not just those who are included in the study. That is why I need your solidarity to try to raise funds because without it 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 think we can achieve it.

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HOW TO DONATE: It's very easy! You get into the link. You click on donate (donar) and where by default puts 20 euros click and put the amount you want. You do not need to delete the 20 that is by default, just click and put a new amount is removed the 20. You must fill in your name and your email 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 the privacy terms!


Can I donate by bank transfer? Of course. If you wish, you can make a donation by bank transfer to this account number: IBAN-ES42 3008 0001 1924 3327 8724. In the subject of the transfer must put "All for the cause of Chronic Fatigue Syndrome" to go entirely to this study.
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Thank you very much in advance. I would appreciate it if you could share it with all the sick people, relatives and friends that you know.
A hug,
Manuel Ruiz Pablos

Link to donate: https://helpify.es/comunidades/todo-por-la-causa-del-sindrome-de-la-fatiga-cronica/

 

[Mel9]

I tried to donate but I don’t read Spanish, sorry, and cannot understand how to donate 20 E

 

[shoponl]

Have you thought of using a crowdfunding site like Experiment.com to raise funds for your research? https://experiment.com/

 

[Manuel]

Good afternoon, @Mel9
with this link you can see the more or less translated page: https://translate.google.es/transla...-del-sindrome-de-la-fatiga-cronica/&sandbox=1
But in this link you will not be able to make a donation because it does not allow you to select the "Donate now" box. I have put it so that you can see it translated.
The donation must be made in the Spanish link: https://helpify.es/comunidades/todo-por-la-causa-del-sindrome-de-la-fatiga-cronica/

In the photo (Photo 1) that I enclose you will see 5 boxes:
1.Amount you wish to donate. You will see that 20 euros appears by default as an example. You click with the mouse on the 20 without erasing it and you put the amount that you want to donate (without putting the symbol of the euro). If the amount you want to donate is 20 euros you must also click on 20 and put it back.
2. Box 2 reads "Rare childhood diseases" (Enfermedades raras infantiles).
3. Box 3 reads "All because of chronic fatigue syndrome" (Todo por la causa del Sindrome de Fatiga Crónica) .
Box 2 and 3 should leave them as they are and not change them. These indicate which project the donation is intended for.
4. In "First name and surname " (Nombre y Apellidos), you must put your first name and surname.
5. Under "Email", you must enter your email address to receive a donation verification email.

Then the payment methods appear:
-You can choose by credit card: you must click on the symbol where it says credit card if you want this option.
Other boxes will be opened (Picture 2):

1. Credit card number.
Month (Mes) and year (Año) of expiry.
3. CVV (Card Verification Value) are 3 numbers found behind your credit card.
4. Name and surname of the owner of the credit card (Nombre del propietario).

(Photo 3)

You must check the box "I accept the Terms and Conditions and the Privacy Policy" (Acepto los Términos y condiciones y la Política de privacidad).
The last box can be checked if you want to donate as anonymous (Donar como anónimo). That is to say, the donation will appear as anonymous.
And finally you must select DONATE NOW (DONAR AHORA). The donation has already been made.

-Payal: If you choose this option you must select PayPal, Accept the Terms and Conditions and the Privacy Policy. Donate as anonymous if you want. And click on DONATE NOW (Photo 4).

You will be redirected to PayPal where you must select Donate with PayPal (Photo 5).

Afterwards, you will see two boxes where you must put your PayPal account (Photo 6). The donation has already been made.

Finally, once the donation has been made, you will receive an email verifying your donation.

Thank you very much for your help. This research will benefit all patients.

 

[Manuel]

@shoponl
The problem of many crowdfunding platforms are two:
1. Some have commissions for each donation.
2. There is always a time limit of a few months that if you can not raise all the funds you can not do the study.
These two things do not happen in the Helpify platform, since this platform belongs to the University of Navarra where the study is going to be done. In other words, every euro donated goes entirely to the study. It will not go either to the researchers' salaries or to Helpify platform. And the study will be done even if it takes longer to raise funds. The idea is that if all those affected donate a small amount it will be possible to raise funds in a short time.

 

[heapsreal]

Yes, I shared this hypothesis with Dr. Montoya and Dr. Ron Davis. They both found the hypothesis interesting. An immunologist from Dr. Ron Davis's team told me that they would take a long time to analyze the immunological markers that I proposed because they had several lines of research open. That's why I contacted CIMA in Spain to do the study as soon as possible. The problem is that we need funds for the study, since in Spain not much is invested in research.

For this reason, I ask for your help. No matter how small the amount you donate, if we do it together, it is achieved in a short time. And I would appreciate it if you could share it.

You research seems to be inlinexwith australian researchers in Australia at griffith university. Their finds on low nk function and CD function may be of interest.

 

[Mel9]

I tried to donate but I don’t read Spanish, sorry, and cannot understand how to donate 20 E

Thanks @Manuel , it was easy to donate after all.

My CD8 was low when tested in 2017 but my CD4 was normal. Any ideas why?

 

[Manuel]

Rosario Montero and I would like to thank Solve ME/CFS Initiative for trusting our project and funding it. Also to Dr. Bruno Paiva and his CIMA team for carrying it out. And what to say about all those patients and relatives who have donated to the study. Without them this would not be possible!
Link to studies funded by the Solve ME/CFS Initiative: https://solvecfs.org/smci-ramsay-grant-program/

Ramsay grant funds go entirely to immunological markers. But we want to go further and take the opportunity to include genetic markers. We need to raise 9.744 euros. That's why we will continue to try to raise funds through the crowdfunding helpify platform to be able to do them:
https://helpify.es/comunidades/todo-por-la-causa-del-sindrome-de-la-fatiga-cronica/

I want to remember that nobody is charging anything to do this study (not even the CIMA researchers) everything goes to analysis, genetic testing and costs derived from the transport of samples and publication.

Everything you can donate, no matter how little you donate, will make a difference for people with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis and bring us closer to a possible treatment/cure!

Please share this post with friends and family.
Again thank you all so much!

Best regards,
Rosario and Manuel.

 

[perrier]

Rosario Montero and I would like to thank Solve ME/CFS Initiative for trusting our project and funding it. Also to Dr. Bruno Paiva and his CIMA team for carrying it out. And what to say about all those patients and relatives who have donated to the study. Without them this would not be possible!
Link to studies funded by the Solve ME/CFS Initiative: https://solvecfs.org/smci-ramsay-grant-program/

Ramsay grant funds go entirely to immunological markers. But we want to go further and take the opportunity to include genetic markers. We need to raise 9.744 euros. That's why we will continue to try to raise funds through the crowdfunding helpify platform to be able to do them:
https://helpify.es/comunidades/todo-por-la-causa-del-sindrome-de-la-fatiga-cronica/

I want to remember that nobody is charging anything to do this study (not even the CIMA researchers) everything goes to analysis, genetic testing and costs derived from the transport of samples and publication.

Everything you can donate, no matter how little you donate, will make a difference for people with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis and bring us closer to a possible treatment/cure!

Please share this post with friends and family.
Again thank you all so much!

Best regards,
Rosario and Manuel.

Have you contacted Dr Maureen Hanson at Cornell university; she is interested in the immune system; and she also works with Dr Davis, and she has a lab called Hanson Laboratory at Cornell. It is so very important to work together; this illness is progressive.

 

[bread.]

What is the status of this study?

 

[bread.]

Could you explain me your hypitheses in 5 sentences? Maybe I will fund it.