Which scientists and research groups would you want to bring to the ME/CFS research field

[Hubris]

Once we have figured out who we would like to have research the illness, how do we get them on board? I don't think waiting for them to read this forum will do much good.

 

[Simon M]

The approach of the Edinburgh Genetics Centre of Excellence and aim of DecodeME is the first find genetic clues pointing to the causes of ME. Then go looking for researchers to bring their relevant expertise to pursue those clues. Apart from anything else, actually having evidence that a particular area is involved is likely to encourage good researchers from those fields to focus on ME.

 

[cassava7]

All of the NIH research staff, like Avi Nath and Wallitt involved them in the intramural study (according to Brian Vastag, 79 authors are listed on the submitted article). Unless the pathophysiology of ME/CFS is better understood and, specifically, pinpointed to a certain biological mechanism, it seems to me that there is no choice but to cast a wide net in what is explored — and that means involving researchers from many different specialties.

I am not aware of any other national institute(s) of health in the world that has full-time in-house researchers spanning all subfields of medicine. The Institut Pasteur in France comes to mind but they focus on virology.

Of course, the issue with this approach is that it runs completely against how research agencies fund science (specific, delimited projects).

 

[Trish]

The approach of the Edinburgh Genetics Centre of Excellence and aim of DecodeME is the first find genetic clues pointing to the causes of ME. Then go looking for researchers to bring their relevant expertise to pursue those clues. Apart from anything else, actually having evidence that a particular area is involved is likely to encourage good researchers from those fields to focus on ME.

I'm glad you raised this, Simon. I was going to suggest this, and the UK ME/CFS Biobank as the two most hopeful research centres for ME/CFS I see in the UK for biomedical research.

 

[Robert 1973]

The approach of the Edinburgh Genetics Centre of Excellence and aim of DecodeME is the first find genetic clues pointing to the causes of ME. Then go looking for researchers to bring their relevant expertise to pursue those clues. Apart from anything else, actually having evidence that a particular area is involved is likely to encourage good researchers from those fields to focus on ME.

Yes, I think Chris Ponting is probably as good as anyone we could have hoped to get involved at this stage.

My leftfield answer would be Richard Feynman. I know he’s dead but I mean someone in his mould – a super smart polymath scientist who just enjoys solving very difficult problems and isn’t afraid of failure. Feynman was famously recruited to the Rogers Commission and played a crucial role determining what caused the space shuttle challenger disaster (which I discussed here: https://www.s4me.info/threads/georg...e-bps-and-long-covid.20126/page-6#post-320051). I don’t know who a modern day Feynman would be but without the equivalent of the Rogers Commission and substantial funding they would be unlikely to be persuaded or to get very far.

However, I’m sure DecodeME is our best bet at the moment. It’s just frustrating that it is likely to take so long before it results in any treatments. That’s not a criticism of anyone involved, just my understanding of how long it will take to complete and publish, and then to design, conduct and publish the studies based on the clues it (hopefully) give us.

 

[ME/CFS Skeptic]

I don’t know who a modern day Feynman would be

I think we might have one on our forum here. The bird-watching guy.

 

[FMMM1]

However, I’m sure DecodeME is our best bet at the moment. It’s just frustrating that it is likely to take so long before it results in any treatments. That’s not a criticism of anyone involved, just my understanding of how long it will take to complete and publish, and then to design, conduct and publish the studies based on the clues it (hopefully) give us.

I was struck that if you could identify disrupted pathways, via the GWAS study Chris Ponting is running, and there were drugs available (targeting those pathways) then progress could come relatively quickly.

But yes, the GWAS needs to be completed and it appears that often larger (further) GWAS studies are required i.e. to identify relevant genes/pathways.

 

[duncan]

However, I’m sure DecodeME is our best bet at the moment. It’s just frustrating that it is likely to take so long before it results in any treatments. That’s not a criticism of anyone involved, just my understanding of how long it will take to complete and publish, and then to design, conduct and publish the studies based on the clues it (hopefully) give us.

But yes, the GWAS needs to be completed and it appears that often larger (further) GWAS studies are required i.e. to identify relevant genes/pathways.

Johns Hopkins not too long ago released a Lyme study that identified genes in Lyme patients that evidently were activated by Lyme as immune responses, or something along those lines. So these were genes that are coded to help fight infections, if my understanding is correct, and the effort is ultimately meant to provide a diagnostic. Will those sorts of genes be identified in DecodeME and the GWAS efforts? Does any body know?

https://www.cell.com/cell-reports-medicine/fulltext/S2666-3791(22)00375-5

 

[FMMM1]

I've been hoping for a large Lyme GWAS study [equivalent to Chris Ponting's ME/CFS GWAS study] --- so your post made me think xmas had come early for me! @Simon M maybe better to look for (further - Europe ---) large ME/CFS GWAS studies but I've wondered if a Lyme study would actually give the ME/CFS community more useful genetic information and the Lyme community might be well placed to get the funding. Sow the thought/seed?

This study relates to gene expression which is different to GWAS. Actually it reminds me of Alain Moreau's corresponding work on gene expression in ME/CFS. It's consequence/downstream effect i.e. if you've an infection then:

• any lingering virus will be directly changing your gene expression, to make viral proteins; and
• your immune system will have been ramped up to deal with the virus/bacteria --- and any lingering virus/bacteria;
• EDIT - PTLD changes in gene expression are, I assume, what they're focused on (post acute infection).

GWAS looks at the actual gene's [primary/hardwiring] - what predisposes you/protects you - so if a pathway predisposes you then that may be a common pathway --- with potential drug targets --- some drugs may even be approved for other diseases --- (quickly) repurposed for ME/CFS.

There have been useful GWAS studies in diseases with a diagnostic test e.g. diabetes, (high) blood pressure ---. So, if this produced a post infection diagnostic test, for Lyme - PTLD, then a GWAS study on that population might identify the pathway, potential drug targets/treatments.

I've no training in this stuff --- so don't assume what I've posted is accurate!



"
Summary
Lyme disease (LD) is tick-borne disease whose post-treatment sequelae are not well understood. For this study, we enrolled 152 individuals with symptoms of post-treatment LD (PTLD) to profile their peripheral blood mononuclear cells (PBMCs) with RNA sequencing (RNA-seq). Combined with RNA-seq data from 72 individuals with acute LD and 44 uninfected controls, we investigated differences in differential gene expression. We observe that most individuals with PTLD have an inflammatory signature that is distinguished from the acute LD group. By distilling gene sets from this study with gene sets from other sources, we identify a subset of genes that are highly expressed in the cohorts but are not already established as biomarkers for inflammatory response or other viral or bacterial infections. We further reduce this gene set by feature importance to establish an mRNA biomarker set capable of distinguishing healthy individuals from those with acute LD or PTLD as a candidate for translation into an LD diagnostic.

 

[Yvonne]

I don't have any particular scientist in mind, but (to answer a different question) in my fantasy Institute of ME Research I would have the following research groups:

Cardiovascular physiology
Cell signalling
Drug development and repurposing
Energy Metabolism
Epidemiology
Gastroenterology
Genetics
Imaging
Immunology
Microbiology
Neurology
Nutrition