What can we do to help right now?

[Verity]

There seem to be a lot of good ideas swirling around on S4ME these days with all the discussion about DecodeME, the CRH neuron finding, the buspirone challenge tests, and the overall clinical picture of ME all pointing toward certain regions of the brain. It seems like the field could really get somewhere if everything plays out right.

These leads need to be followed up. What can those of us who aren’t clinicians or scientists do right now to help move things in the right direction? Can we do some brainstorming about what would be useful?

 

[OrganicChilli]

Also Lemtrada. I don't know what T cells have to do with the hypothalamus, but I'd rather see a trial for a serious drug than cryo chambers or LDN trials.

 

[Ravn]

What can those of us who aren’t clinicians or scientists do right now to help move things in the right direction?

A good question! I often think about that, too, and can't come up with anything better than to keep doing what we're doing or, capacity permitting, do some more of what we're doing

Outside of S4ME, at the individual level and according to individual resources and ability, that means keep donating, keep raising funds, keep connecting with anyone or any organisation that might be able to help with funding, keep poking politicians and nagging patient organisations to do the right thing, keep shoulder tapping suitable researchers and try to pique their interest, and use any personal connections we might have, however vague, for all of the above

As a forum that means keep digging up and dissecting and reassembling lines of research enquiry, free and public and for all to read, keep supporting good faith researchers by answering their questions, keep being open to collaborations like the one with WE&ME

One thing I'm wondering: could we better highlight things like the summaries of the sort recently produced by e.g. Forestglip, Jonathan Edwards and ME/CFS Science Blog? Similar to the fact sheets maybe, with a section on the landing page called 'selected research gaps' or something in that vein. Our thread about research we'd like to see could be linked from there, too

That would help reduce one barrier to getting more new researchers engaging with S4ME and the ideas discussed here, which is the overwhelming nature of a sprawling forum. I'm talking about researchers from outside the field with the skills and expertise we need but who haven't realised (yet) what an interesting area of research they're missing out on and who only landed on the forum because their partner's second cousin kept emailing the link and there's a family gathering coming up that could turn awkward if they haven't at least had a quick look. Someone like that is more likely to be drawn in to look further if there's an easy entry point via a convenient summary

 

[ChronicallyOverIt]

Join local patient organizations! I joined a local one and we only meet once a month, it’s not a big load. I’m slowly bridging the gap of decodeME and the importance of genetic findings being the next thing to explore. It’s very hard explaining this when the biobabble is so prevalent but slowly it’s working.

I’m starting to understand why anecdotal stuff is getting promoted to these charities. The patients inside are driving all the research interests and initiatives. I admire the hard work they put in. I think we can also be part of that hard work and slowly drive research towards better science through this grass roots approach.

Arguing on twitter over results only gets so far. Having a human conversation and working with people that WANT to help but don’t have the energy, time, or expertise to stay up to date with these new results can help. Even if your point isn’t coming across your a voice in the room.

These organizations also have connections to the bigger charities and sometimes government. Ask them how you can help, and who you can contact.

Everyone I’ve worked with fully understands ME and no one pushes past my limits.

 

[ChronicallyOverIt]

Another thing I have found, with pretty poor but some results, but not 100% zero. Is have Claude look locally if anyone has research a pathway, gene, or result before.

Claude compiles a list of researchers that are local to me. I then have emailed them personally, not using Claude, stressing that I am in their community and they with even just an opinion on this topic can help. I feel as having a local connection is better than just out of the blue emailing. Btw when emailing them I ALWAYS include the decodeME GWAS results as I think it helps show there is a real research happening here and they can see it in a GWAS.

This is just another two cents idea

 

[Verity]

For people who contact researchers (like @ChronicallyOverIt ), what do you say to them?

 

[ChronicallyOverIt]

Examples I have used (@forestglip helped share me some examples so loosely based off this):

"I have a condition called ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome). I have had this condition for many years, but I am still far less severe than many who suffer horrible symptoms due to ME/CFS and cannot even leave a dark, silent bedroom. I volunteer with the XXXXXXXXXXX on the Scientific Committee and follow the ME/CFS genetics literature closely. There is no treatment for this condition, and until recently, there was very little insight into the pathophysiology. However, The DecodeME GWAS (15,579 cases, 259,909 controls) reported eight loci last August 2025; one locus sits near BTN2A2, and the risk allele tracks with lower BTN2A2 expression. I believe in tapping into your local network and am writing because of your γδ T cell work with XXXX group in XXX. You are possibly the most relevant researcher here in XX in relation to BTN genes."

"I am reaching out to you as a local XXXXXXX resident, a person with ME/CFS, and a member of the research committee at the XXXXXX regarding some very intriguing work you did in the 1990s. This may be a bit out of the blue, but your XXXXXX on the buspirone prolactin challenge, and your 1995 paper,XXXXXXXXX, bear on a question that has been making quite a stir in the ME/CFS research world, as new GWAS data from DecodeME and tissue-level analyses have shown that risk loci are enriched for genes expressed in the brain. Just over 30 years later, the increased prolactin response to the buspirone challenge still seems to be the most consistently replicated neuroendocrine finding in ME/CFS/"

I then ask if they have any insight into this "question in relation to their work". A wise person once told me researchers love talking about their work. If they are super receptive I thank them and ask if they know anyone in their field who would be interested.