Tissue specific signature of HHV-6 infection in ME/CFS, 2022, Prusty et al

Would it be useful to start an information/advocacy campaign targeted specifically at students in universities/medical schools? To inform about the work that needs to be done, magnitude of the population affected, severity of the disease etc.

It would be playing the long game, but the goal would be to eventually create a cohort of young researchers interested in working with ME tissue samples.
 
ContraindiKate said:
Would it be useful to start an information/advocacy campaign targeted specifically at students in universities/medical schools? To inform about the work that needs to be done, magnitude of the population affected, severity of the disease etc.

It would be playing the long game, but the goal would be to eventually create a cohort of young researchers interested in working with ME tissue samples.
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My class benefitted from having a professor that has been targeted by BPS proponents to lecture us. Talked about working with patients, and how difficult that was because being on the patient's side when it comes to ME meant one could be attacked as a professional from colleagues. Was very clear on what the patient needed, that we don't know everything (but we do know it's not decondition/fear conditioning/illness beliefs).
 
@rvallee

Your comment on H. Pylori sequestered in the body, and sometimes causing disease, really does show medicine has been exceedingly slow to suspect this of other disease causing entities that also lurk in the human body.

I guess the logic of: If this, then this, is lost on most medical science.

For example, extrapolating from what you've said, if H.Pylori seemingly held dormant in the body can cause disease, then EBV seemingly held dormant in the body, may also cause disease.
 
The full paper is now available.

Interesting that the samples were actually from Cambridge Brain Bank.

They say they found evidence of active HH6 infection in two of three patients (though they had fewer brain samples from the third patient and given how many other negative samples they had from the first two, it doesn't seem out of the question that they didn't have the right samples to detect an infection if one was present for that third patient). Also active EBV in all three.

They had three controls with fewer samples, but still a reasonably number, all negative. They also had 21 more controls, but only three samples for most of these (compared to dozens for the patients with only a handful showing up positive for HHV6 or EBV) so it isn't really a valid comparison as there would have been lots of potential to miss positives.

Still, it's pretty interesting, maybe there is something here. I guess the question is always whether we're looking at a cause or an effect.
 
I am new here, so apologies for bumping an old thread, and for not having the forum formatting figured out yet.

Does the success of the Netherlands Brain Bank (NBB) in establishing a source for brain tissue (used in the "Loss of CRH Neurons" study, with apparently more to come) create an opportunity for replicating this HHV6/EBV study? Does anyone have the connections within the research community to facilitate a conversation about that possibility?

From reading the forum I realize that viruses are not en vogue, and that some studies Dr. Prusty has been involved with more recently have come under criticism. However, this particular study seemed fairly well received, other than being limited by a very small sample size, due to difficulty at the time in obtaining brain tissue. Maybe the NBB has helped solve that problem?

I have exchanged emails with one of the other authors on this paper about a different topic in the past, and would be willing to reach out again. But I would need some guidance from those here who are much more knowledgeable about how these types of medical research projects take shape, so that I could approach them with something more specific than "Did you see this other postmortem brain study? Have you thought about collaborating?"

I'm sure there is a better way to approach this that others will know about. As I said, I am new here, but hope to be able to learn and maybe even contribute in some way.
 
Mortal Machinery said:
I have exchanged emails with one of the other authors on this paper about a different topic in the past, and would be willing to reach out again. But I would need some guidance from those here who are much more knowledgeable about how these types of medical research projects take shape, so that I could approach them with something more specific than "Did you see this other postmortem brain study? Have you thought about collaborating?"

I'm sure there is a better way to approach this that others will know about. As I said, I am new here, but hope to be able to learn and maybe even contribute in some way.
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Hi @Mortal Machinery, welcome to the forum. Unfortunately the approach you lay out here is probably the best you can do, unless you specifically have some resources to offer to get the project off the ground. You can reach out to the Netherlands team just to ask if they have any plans to look at viral reactivation, which might prompt them to think about it even if their reply to you is just “no we don’t have plans.” Sorry there isn’t anything more concrete I could suggest—every lab has limited resources, limited personnel-hours, and tends to have a particular scope of interest. Unless you can offer to fund the entirety of a study yourself, there’s not much to be done besides a nudge.
 
Thanks @jnmaciuch. I certainly don't mind sending a nudge email. To be clear though - my previous contact is with one of the authors on the Prusty paper. To the Netherlands team I would just be a random stranger/patient.

I guess that was part of my question, though I didn't state it plainly, is whether that is the best way to seed these types of ideas, or if it is better coming from an individual or advocacy group that is known and trusted within the research community. In my industry, there are certain events, associations, and networking forums where these types of collaborations are discussed and are more likely to gain traction. We tend to say that 90% of the work for any deal is getting the right people around the table and the right person making the ask.
 
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