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

Hi @Alvin

Thank you so much for the suggestion. The truth is that all selfless help is very welcome and to appreciate, because in this way, in the end is how one ends up finding solutions.

Unfortunately this is not the case here. In our country there is practically no funding for ME/CFS and the little is going to public entities. Private initiatives generally have to be financed by the patients themselves. I give you the example of the most ambitious study carried out in our country by the team of Jose Luis Rivas et.al, which culminated in the publication of the paper in a good journal with an impact factor Q1 as is Frontiers of Immunology. The study, which you will already know, is as follows:

https://www.frontiersin.org/articles/10.3389/fimmu.2018.01028/full

To give you an idea of how bad things are in our country, recently our Social Security Administration has published a guide in which it groups the ME among somatomorphic disorders, points out the invalidity of tests such as the two-day CPET for help in the diagnosis of the disease alleging a problem of economic cost/benefit or neurocognitive batteries based on WAIIS, continues to recommend using Fukuda criteria to diagnose and, what is more serious, promotes GET and CBT as effective therapies.


I leave you the thread in which it is commented:

https://www.s4me.info/threads/spanish-petition-retiren-la-guía-del-inss-para-fibromyalgia-sfcem-sqm-y-ehs.8967/https://www.s4me.info/threads/spanish-petition-retiren-la-guía-del-inss-para-fibromyalgia-sfcem-sqm-y-ehs.8967/



Given that this is an issue in which we would need support (signatures on Change.org, support from doctors, nurses, psychologists, researchers, etc), as soon as we recover a little from the crash after the 12th (and the 9th that we had all the days of protest against the guide and there was a press conference with patient representatives and a lawyer announcing that if they did not withdraw the guide they would take legal action), I hope to be able to make a summary of everything translated (both the positioning, and the support form for health professionals) and post it so that you can help us.


Thank so much!!!


Best

 

For whatever reason the Frontiers link did not work for me so I'm relinking here in case any one else has a similar problem:

https://www.frontiersin.org/articles/10.3389/fimmu.2018.01028/full

Is this the article?

This is the error message: http://thank you so much for the su...in.org/articles/10.3389/fimmu.2018.01028/full

Anybody have a clue why that might happen? Is it just my machine?

 

@Snowdrop

I have no idea what the problem was (apparently the link was fine), but I went to test it and I had the same problem. I have edited the post and pasted it again and I think now it works well.

Effectively that was the studio. Thank you so much about the warning.

Greetings

 

@Notjustfatigue I'm sorry but not incredibly surprised to hear about how difficult it would be to get medical research funding.
I do hope your crowdfunding works out but as i was getting at we are a pretty tapped out bunch
Finally the impression i get from this thread is that you hope this is the disease mechanism of ME. Chances are it is not. Not to say you should not do his research, as Thomas Edison said "I have not failed, I just found 10,000 ways that won't work" If we don't try we can't succeed and if we don't know what doesn't work we won't know to look elsewhere to get to what does. All that said i hope your onto something here, we all do.

 

@Jonathan Edwards @Trish Thank you so much for the welcome.
Sorry to take so long to answer. I have a lot of work and I'm sick.

The problem with CFS/ME is that many patients with the same symptoms may have different causes. That is to say, the evasion mechanism that I comment on in the hypothesis is carried out by several intracellular pathogens such as cytomegalovirus, ebv, borrelia... All of them could cause CFS/ME to develop, but the cause would be different.

Currently when patients are taken for a study of CFS/ME they are not normally divided into subgroups and this is a problem when analysing the results. The same happens when you take a patient who has been sick for a few years and another patient who has been sick for more than 20 years. The results would also be different.

@Trish Thank you very much for the Link to look for funds.

I would appreciate it if you could help me with dissemination and crowdfunding. No matter how small the amount donated, if we do it together, it would be achieved in a short time.