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.
 
Braganca said:
Tom, do you know what the price tag was on this? How much needs to be raised?
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I’m afraid I don’t know. I think it was going to be dearer than the blood bank. Dr Charles Shepherd commented on it. You might get a response from him on the ME Association Facebook page. He was one of the authors of the 2010 paper looking at the feasibility of it.
 
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.
Click to expand...
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.
 
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