Treatment for ME has turned a corner - the UK must not leave patients waiting, 2025, Chowdhury

[John Mac]

Let’s make this the decade we finally develop treatments for this condition, writes Sonya Chowdhury

2025: A breakthrough year for ME, but we must go further


Too many people – including, devastatingly, many medical professionals - have dismissed it as ‘all in the mind’. This characterisation is hurtful and damaging to those who experience the reality of the condition – either living with it themselves or caring for someone who is.

ME is a profoundly debilitating, chronic illness that affects multiple systems within the body. There are an estimated 1.35 million people in the UK with ME or ME-like symptoms, including post-exertional malaise: the hallmark symptom of ME.

Over the past three years, Action for ME partnered with the University of Edinburgh on the DecodeME study – the largest of its kind ever undertaken. It identified eight genetic signals where people with ME differ from those without. Building on that, PrecisionLife – in partnership with Action for ME and the University of Edinburgh – identified over 250 genes that may increase the risk of developing ME. LOCOME, the study in question, also found some overlap with long Covid biology, with 76 genes linked to both conditions.

This could be groundbreaking.

Treatment for chronic fatigue has turned a corner - the UK must not leave patients waiting | LBC

Let’s make this the decade we finally develop treatments for this condition, writes Sonya Chowdhury

www.lbc.co.uk

 

[Kitty]

I hope Sonya gives that sub a sharp-cornered piece of her mind...

 

[Trish]

I hope Sonya gives that sub a sharp-cornered piece of her mind...

Yes, just seeing the heading made me wonder what new horror is being visited on us by the NHS as 'treatment'.

 

[Jonathan Edwards]

It is pretty peculiar, since the article has nothing to do with hurrying up services.

 

[hotblack]

Sonya even gave them the headline in “2025: A breakthrough year for ME, but we must go further”

Good article making the argument for investment in research though.

 

[Yann04]

Literally thought this would be a Paul Garner quote given the headline lol

 

[V.R.T.]

Terrible headline aside, I just can't believe the MRC/NIHR have been so absolutely useless post DecodeME. Not that they weren't useless before. But not to see the opportunity staring them in the face here is just mind boggling levels of institutional incompetence and neglect.

 

[Dolphin]

If you listen to the audio version, you get some rapping at the end

 

[V.R.T.]

If you listen to the audio version, you get some rapping at the end

Underscore underscore underscore underscore underscore underscore....

 

[hotblack]

If you listen to the audio version, you get some rapping at the end

It didn’t load for me so I missed that treat!

 

[Dolphin]

They have changed the title to “Treatment for ME has turned a corner - the UK must not leave patients waiting”‬

 

[V.R.T.]

They have changed the title to “Treatment for ME has turned a corner - the UK must not leave patients waiting”‬

But treatment hasn't turned a corner - wtf are they playing at here? The whole article is about how we need research funding so treatment can turn a corner

 

[hotblack]

To be fair I suppose the subheading does say “Let’s make this the decade we finally develop treatments for this condition, writes Sonya Chowdhury”. It’s pretty clear to anyone reading this.

It’s not a great headline, but how many headlines these days reflect the story?

What Sonya has said is good. So I’m going to try to focus on that.

 

[Hutan]

But we must keep building on this work. If funding for ME research were equitable with other illnesses, £18.5 million of the £5 billion spent annually on health research in the UK would be allocated to the disease. Over the past 10 years, only £8.05 million has been spent on ME research.

By way of comparison, Germany has just announced 500 million euros in research funding for ME and long Covid over 10 years. This announcement recognises the importance of undertaking further research into these conditions.

The UK should be harnessing our world-leading life sciences sector to complement the investments made by our European neighbours and ensure this vital industry remains at the forefront of global research.


It has been a year of unprecedented discovery for ME/CFS, and we want to see more of the same in 2026. That is why Action for ME is calling for the creation of a Strategic Research Hub for ME, to ensure that recent scientific progress translates into meaningful treatments.

2025 is the year we proved that ME is based in biology. Let’s make this the decade we finally develop treatments for this condition, for the sake of all those who live with it.

This is very good.

We have discussed the Strategic Research Hub before. There were some concerns about some of the researchers lining up to be part of the Hub e.g. Tyson and also around the logistics of it. It's hard to know if the potential upside from a coordinated effort outweighs the downside of the involvement of some of these researchers. It's even harder to know if the Strategic Research Hub actually has any realistic hope of becoming a reality. Does anyone know about that?

It identified eight genetic signals where people with ME differ from those without.

We have seen that framing of the outcome of DecodeME before, but my understanding is that it's not quite right. Not all people with ME/CFS will have those genetic signals, possibly quite a low percentage do. Some people with ME/CFS won't have any of those signals. And some people without ME/CFS will have some of the genetic signals.

Perhaps it doesn't matter in an article like this. Perhaps the ambiguity even works in our favour, making it seem deterministic - making it seem as though genetic switches that cause ME/CFS (i.e. if you have the genetic markers, you get ME) have been found. It would be good if there was some standard really good wording that was rolled out in articles like this.

I like the wording '2025 is the year we proved that ME is based in biology'. But, of course, genetic signals could still increase the susceptibility of someone to psychosomatic illness. Psychosomatic illness (if it exists) could be 'based in biology' too. A genetic predisposition doesn't necessarily mean that people can't cure their symptoms by thinking better thoughts.