Longish post, please bear with me...
I was struck yesterday by this tweet from Jen Brea:
I agree with her. If my health is going to improve before I'm an old woman (and I've been sick for decades) then treatments need to come in the next five years, not the next ten or twenty.
I was delighted to see that Chris has got funding for a PhD studentship to follow up on Mark Davis's work on T-cell clonal expansion. Our Simon McGrath (
@Simon M) wrote a
fascinating blogpost about this work. Basically, T cells get created with random molecular 'locks' by the immune system and wander about the body looking for a molecular 'key' on a pathogen or tumour cell that fits that lock. If the T cell finds one that fits, it creates clones of itself, and the existence of such clones is a marker for immune activation. It shows up in MS, cancer, and acute Lyme infection - and Mark Davis found it in a sample of six ME/CFS patients.
Simon described this as the strongest evidence yet of immune activation in ME/CFS - a field where there seems to have been endless inconclusive and low-level immune findings concerning levels of cytokines, NK cells and so forth. T cell clonal expansion is a completely new way of looking at immune activation and if it's found in ME/CFS it could (as I understand it) show not just a correlate of the disease but its root cause, because it's possible to identify exactly what substance the cloned T cells are locking onto. So if this work pays off, we're looking at cause, diagnostic test, and treatment targets.
Chris's PhD student will be building on Davis's work, and attempting to replicate it. Simon
mentioned that the Wellcome Sanger Institute is involved and will be trying to come up with a cheaper and quicker version of the technology involved, so that more cells can be sampled per patient and more patients can be studied, faster.
So, great stuff, but a PhD student will need to be recruited (typically a new graduate so not until the start of the academic year in Sept/Oct) and a PhD typically takes three or four years to do.
I don't want to wait three or four or five years before this important research is done and published. My question is, what can be done to speed it up? Can a research assistant (or ten!) be hired to help move things along faster [Edit: either at Chris's unit and/or at Sanger]? Can money be raised via funding proposals to our charities, or via a crowdfund? Patients have already crowdfunded successfully to employ David Tuller for two years in a row. Surely we can run to helping fund something like this.
We need to get important research moving fast, as though our lives depended on it, because they do. And this seems like very important research indeed.
Thanks for reading this rather long question (with background info so that other PWME can understand why I ask it).
Edit: Simon has now written a very interesting
blog post about this planned PhD work.
