Chronic viral infections in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), 2018, Scheibenbogen et al (EUROMENE)

https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-018-1644-y

Authors:

• Santa Rasa,

• Zaiga Nora-Krukle,

• Nina Henning,

• Eva Eliassen

• Evelina Shikova,

• Thomas Harrer,

• Carmen Scheibenbogen,

• Modra Murovska,

• Bhupesh K. Prusty

• and the European Network on ME/CFS (EUROMENE)

 

Five Germans from three German universities were involved, but as always not a Cent German research funding.

 

1. Abstract
2. Background
3. Human herpesviruses
4. Enteroviruses
5. Human parvovirus B19
6. Retroviruses
7. Ross River virus
8. Molecular mechanisms behind viral pathogenesis in ME/CFS
9. Conclusions
10. Future strategies for development of infection biomarkers in ME/CFS
11. Declarations
12. References

 

Yep. But the research has to find answers to ME, says the government. Fuuunny.

 

This may merit a whole thread of its own, but let's see how far we get here:

Why is that, actually?

I may be wrong here but as far as I know research grants are not necessarily given out for specific diseases - or at least not exclusively - and I would imagine that there must be some people involved who decide on whether or not to fund a project like this one. I can see rejections based on technicalities in the broadest sense, i.e. no type of grant being available that this type of project falls under so they just cannot fund it or rejections based on 'this is not a test of a hypothesis that will lead to treatment in our opinion', but at this point even a project like PACE was useful in a sense - it told us that CBT is mostly useless (or it would have been in a position to answer that question hadn't the involved people been utterly disingenous/incompetent, but I digress) so it is hard to see why you would not want a thorough writeup on all the common viral triggers that have been discussed over the years.

This leads me to suspect that the people deciding over funding may be biased against research on this topic in general. It is all fine and dandy if research projects are rejected on the grounds that the applications would suggest them not being worth funded, which I cannot realistically judge one way or the other, but as we have seen from the RKI report and other encounters with people involved in policies I do not think it is unreasonable to assume that Scheibenbogen et al may have to deal with people who are simply (to be blunt) pants-on-head retarded.

Does anybody know how much transparency/insight we have on any grant committees that may be involved here, especially regarding CoIs ('hard' stuff like insurance company shills as well as 'soft' stuff like unprofessional anti-science psychobabblers)?
Are there any laws that would make someone liable for flat out ignoring a major health crisis that affects in excess of 100k people in a major way (apart from our GG - while we can always argue with a general notion of human dignity it is almost impossible to translate this into judicial victories, at least from my perception of past issues)?
It is one thing to not have an entire nation do research on a topic because no one has any clue where to look, but it is hard to understand from an outside perspective why establishing a framework like the one from the OP would not be worth allocating at least some resources.

 

I asked the Ministry for Health, but they never replied.
They told me research has to find answers to ME, and that they cannot help. I asked which research projects they or other state institutions funded, and they didn't reply. Still, it's a clear answer.

Do you mean the Grundgesetz ("constitution")?
The Grundgesetz does not contain - and it cannot be conferred - the right to get health treatment; says the German Bundestag.

The WHO is stricter and grants every human being the right of health (from which follows the right to get treatment). That's another issue in itself, but it's not totally wrong.

 

Looks like a review paper. My impression is this is generally not the sort of thing biomedical researchers would apply for grants for from national research entities. You might mention people who are funding your other work.

 

I don't understand this?

 

Like Solve ME/CFS Initiative here. I'm pretty sure you won't find that they gave them money to do this paper review. They gave the money to do specific biomedical studies. This is what I have found on a quick search:

Actually, although the Solve ME/CFS Initiative gave money to Carmen Scheibenbogen, in this case reference is specifically made to Dr. Bhupesh Prusty

Anyway, my general point still stands that I don't think biomedical researchers would generally apply for funding to the national taxpayer-funded medical research entity to write review papers. Generally it seems to me you apply for funding for specific projects where new biomedical data is collected.

 

This is a review written as part of the EU COST Action grant. It includes people from various European countries. This really has nothing to do with funding actual research projects. It is a networking and communications exercise.

As to whether German grant giving bodies give enough attention to ME I suspect not, as for other countries. However, it is always worth remembering that government organisations have been pretty little help for lots of medical conditions. In the UK at least the mainstay of support has tended to be charities. Where there are flourishing charities the original science gets done. Government agencies tend just to fund established lines of enquiry.

 

The opening to this paper is a shambles, with a lot of misunderstandings or miscommunications about the basic facts. Maybe it's a translation issue?