BBC Radio 4: Inside Health:“Is the tide turning on ME research”? (28 minutes)

Programme description below. They’re speaking to Chris Ponting about DecodeME so that’ll be excellent, they’re also covering the Rosetta Stone study with Professor Rosemary Boyton who I’m not familiar with but is a colleague of Danny Altmann.
ME – also known as Chronic Fatigue Syndrome – has long been one of medicine’s most perplexing conditions. With no definitive diagnostic test and a legacy of scepticism in parts of the medical community, patients have often struggled to be believed. But a surge of new research may finally be shifting the landscape.

The emergence of Long COVID – a condition with striking similarities to ME – has accelerated scientific interest and opened new lines of inquiry into the underlying biology of both illnesses.

In this episode, James Gallagher speaks to Dr Chris Ponting about the latest DecodeME results, which point to a strong genetic component to ME. And Professor Rosemary Boyton outlines the ambition behind the new Rosetta Stone study, designed to build a detailed evidence base of shared biomarkers across ME and Long COVID.

James also hears from Catherine and Jo, who have lived with ME for many years. They describe their diagnostic journeys and how they manage their symptoms in their daily lives.
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In this episode, James Gallagher speaks to Dr Chris Ponting about the latest DecodeME results, which point to a strong genetic component to ME. And Professor Rosemary Boyton outlines the ambition behind the new Rosetta Stone study, designed to build a detailed evidence base of shared biomarkers across ME and Long COVID.

James also hears from Catherine and Jo, who have lived with ME for many years. They describe their diagnostic journeys and how they manage their symptoms in their daily lives.
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This is encouraging. From memory James Gallagher's reporting has not always been helpful to people with ME/CFS so hopefully this signals another shift in the right direction. Let's hope it isn't "balanced" with BPS interviewees.
 
I think it’s a really positive piece of broadcasting on ME/CFS. I didn’t take any notes, which I now regret as I don’t remember clearly. I can say it’s really worth listening to.

Prof Chris Ponting was heavily featured and spoke well. The two patients who gave accounts of their experiences of diagnosis and living with ME/CFS and issues around it were interspersed through the programme - I think they did a really good job.
 
Skycloud said:
I think it’s a really positive piece of broadcasting on ME/CFS. I didn’t take any notes, which I now regret as I don’t remember clearly. I can say it’s really worth listening to.

Prof Chris Ponting was heavily featured and spoke well. The two patients who gave accounts of their experiences of diagnosis and living with ME/CFS and issues around it were interspersed through the programme - I think they did a really good job.
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Repeated tomorrow on BBC Radio 4 at 21.30
 
Skycloud said:
Prof Chris Ponting was heavily featured and spoke well.
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There was a short section on DecodeME with Chris, but it was Prof. Stephen Holgate who was most featured. He did a good(ish) job, but I still don't think he quite 'gets it', and does not readily communicate the seriousness of the illness, although he did mention the 25% stat and that people are bedbound.
 
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hotblack said:
All programmes are also available (at least in the UK) to listen again to on Sounds

www.bbc.co.uk

Inside Health - Is the tide turning on ME research? - BBC Sounds

The new wave of ME research that could bring clarity to this perplexing condition.
www.bbc.co.uk www.bbc.co.uk
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Not working for me (outside the UK) unfortunately. They blocked people outside the UK using the Sounds app last July. Frustrating as some people including me said on social media we would have been willing to pay a subscription.
 
The 4th February episode of Inside Health is also interesting. It begins with 10 minutes on EBV, glandular fever, MS, and the pros and cons of EBV vaccines.

One researcher says that giving EBV vaccines to young children might result in more teenagers and adults getting glandular fever (and thus, I imagine, more people getting ME/CFS.)
 
InitialConditions said:
There was a short section on DecodeME with Chris, but it was Prof. Stephen Holgate who was most featured. He did a good(ish) job, but I still don't think he quite 'gets it', and does not readily communicate the seriousness of the illness, although he did mention the 25% stat and that people are bedbound.
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My bad, brain must’ve been performing more poorly than I thought. Thank you for pointing this out.
 
A very well presented session with a lot of good material. Chris was excellent. Stephen Holgate seemed to me to muddle things up a bit but probably to no great harm. The woman from Imperial seemed quite sensible although I didn't get much impression of focus. We have had Norwich looking at microbiome for ten years now and I don't see a lot of hope that will tell us much.
 
Ferry said:
One researcher says that giving EBV vaccines to young children might result in more teenagers and adults getting glandular fever (and thus, I imagine, more people getting ME/CFS.)
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That's an interesting point. I had assumed that the vaccine was intended to stop EBV ever infecting; if it merely delays it, it would lead to more mono, so presumably more ME/CFS. And still people would get MS, just delayed. That big EBV/military study showed that EBV was a necessary step for MS develop, so delaying EBV infection would be of limited value (mono is a risk factor for MS, so maybe delayed EBV infection would increase MS cases).
 
Simon M said:
That's an interesting point. I had assumed that the vaccine was intended to stop EBV ever infecting; if it merely delays it, it would lead to more mono, so presumably more ME/CFS.
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It has been an argument against EBV vaccination for as long as the virus has been known about. EBV is a very peculiar virus in the way it parasitises the immune system. It might be possible to prevent it getting hold but the logistics and ethics of any study are daunting.
 
Just heard some of the repeat of the Inside Health programme, and Stephen Holgate was answering a follow up question after Chris Ponting had been talking about his DecodeME study, Holgate said something that I didn't think rang true. He said that the DecodeME study was a big advance because we now had biomarkers for ME, but surely that's not the case? I don't think I misheard him. Surely a biomarker is something you can use to establish whether someone suffers from a disease or not, which is still not yet known for ME/CFS. Isn't it the case that DecodeME gives clues to tentative genetic predispositions for getting ME/CFS, but nothing like a test that can confirm whether you have it or not?
 
Barry said:
Surely a biomarker is something you can use to establish whether someone suffers from a disease or not, which is still not yet known for ME/CFS.
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Biomarker can mean pretty much whatever you like - a statistical population marker or an individual marker. I would never bother to use the term and I think Holgate might do well not to, since it obviously causes confusion.
 
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