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ME/CFS Grand Challenge (MEGA)

Scarecrow

Revolting Peasant
Messages
1,904
Location
Scotland
New details about the Grand Challenge (now named MEGA for all you lovers of acronyms).

This info was received by e-mail but will shortly be available here:
https://www.actionforme.org.uk/research/uk-cfsme-collaborative/


MEGA: ME/CFS Epidemiology and Genomics Alliance

On the 13th and 14th of April, experts from the following fields came together for a ‘grand challenge’ workshop to discuss how to advance research in understanding CFS/ME:


 Genomics - Prof George Davey-Smith (Bristol), Prof Chris Ponting (Edinburgh), Prof Chris Smith (Brighton)
 Epigenetics - Prof Caroline Relton (Bristol)
 Proteomics (Mr Tony Bartlett, Somalogic)
 Metabolomics (Dr Rick Dunn, Birmingham)
 Routinely collected data - Prof Andrew Morris (Edinburgh) and Prof David Ford (Swansea)
 Infection - Prof Paul Moss (Birmingham)
 Sleep - Prof Jim Horne (Loughborough)
 Pain - Prof Maria Fitzgerald (UCL)
 Primary care - Prof Paul Little (Southampton)

Joining them at the workshop was Sonya Chowdhury (Action for M.E., representing the patient charity members of the UK CFS/ME Research Collaborative Board) and CFS/ME researchers:

 Prof Julia Newton (Newcastle)
 Prof Peter White (QMUL)
 Dr Esther Crawley (Bristol)
 Dr Simon Collin (Bristol).

The workshop included presentations from each expert about how their field could help advance research in CFS/ME. Although CFS/ME is common and disabling, little is understood about the causes or underlying biology. CFS/ME is probably not just one illness and so far, definitions have been based on symptoms which may not be related to the underlying biology. Everybody agreed there was considerable benefit from such a strong collaboration bringing together differing scientific perspectives, skills and techniques.

It was agreed that very large numbers of people would need to be involved in a study to enable us to conduct the necessary genomic studies. This is likely to need at least 10,000 adults and 2,000 children and young people plus many more others who would act as controls. The patients would need to be well described (phenotyped) with more detail than has previously been collected on characteristics such as pain and sleep patterns.

In this big data study, the first of its kind in the UK, each patient will be asked to provide blood and urine samples which would then allow researchers to investigate, in terms of DNA, RNA and other molecules, what distinguishes individuals with CFS/ME from controls. In other words, what are the distinctive genetics, epigenetics, proteomics and metabolomics of CFS/ME? Doing this will allow us to understand more about the causes and underlying biology of CFS/ME but also about the different types (sub-phenotypes) which may be caused by different underlying mechanisms. This may eventually enable us to develop new diagnostic tests and new treatments for each sub-phenotype.

The researchers involved in MEGA will actively engage with researchers world-wide to further replicate and investigate findings. This very large collection of samples and data will be of interest to researchers from a wide range of disciplines.

We anticipate applying for funding at the end of 2016. If successful, data and sample collection will start late in 2017. Work is now being undertaken to further develop the collaboration and application. A study of this scale will require considerable funding and may need a two-phase approach.

The group discussed how engagement of people with ME/CFS and participation during development of the study will be essential. This will include establishing advisory groups, for adults as well as for children and young people with CFS/ME. The group also considered the importance of maintaining good two-way communication with the wider community and providing updates on the progress being made.

Each of the workshop participants agreed to contribute blog posts about the roles of their respective field and the benefit this could bring to the CFS/ME research. These are being prepared and will be published over the next few months.
 

Simon

Senior Member
Messages
3,789
Location
Monmouth, UK
There's not a whole load of detail, but we know we are talking about huge cohorts: 10k adult and 2k child cohorts, plus controls (which are likely to exist already for most of the omics, as we are late to this party). There's nothing like this anywhere in the world.

Plus a lot of new researchers are coming to play. Profs Paul Moss (infection), Maria Fitzgerald (pain), Jim Horne (sleep) and Paul Little have certainly shown an interest before but I'm not sure they've done any mecfs-specific research. Profs Chris Ponting, Colin Smith and George Davey Smith (Genomics, which increasingly includes transcriptomics (RNA) and a load of other stuff); Dr Rick Dunn (metabolomics), Prof Caroline Relton (Epigenetics), Somalogic (proteomics/serologics) are all new AFAIK.
[SomaLogic | Unlocking protein biomarkers to transform healthcare]

My main take out from this is that a whole load of talent from other areas is taking a keen interest in mecfs for the first time, ready to apply some smart technology - widely used in other, less-neglected illnesses - to our illness. And doing so on a huge sample. Finally, some serious, large-scale biomedical research in the UK (though this would also be the biggest cohort by far anywhere in the world).

It's not going to be fast though, sadly. Big science isn't quick.

And this
The group discussed how engagement of people with ME/CFS and participation during development of the study will be essential. This will include establishing advisory groups, for adults as well as for children and young people with CFS/ME. The group also considered the importance of maintaining good two-way communication with the wider community and providing updates on the progress being made.
Good! The NIH showed how essential it is that this is done well. Apart from better relations, proper patient involvement makes for better science, in my view.
 
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user9876

Senior Member
Messages
4,556
I don't think I'd feel comfortable supporting anything involving White, Crawley and Collin. Certainly not until they've apologised.

I worry about them being seen as the 'ME Experts' if they are used to define inclusion criteria. I do think given the numbers inclusion criteria should be wide but it is also important to document the patients symptoms and severity so that proper subgroup analysis can be done. I get concerned as I things like the CFQ that this group like have no place in any research context. Also I would worry that the language they use is inappropriate in collecting symptoms from patients.

The rest of the group look good.

My biggest concern is it is very slow moving and is it an all or nothing project for funding?
 
Messages
25
I think the really scary people aren't going to get a look in, to be honest. The big hitters are going to be the proper scientists - you know, the ones who rely on actual evidence ;) I suspect they would be polite to anything a psychiatrist says but not give it much credence (I'm talking with regards to M.E).

I can imagine results coming up on the screen, 'we have x, y, z abnormalities here, fascinating.' A certain psychiatrist might interject, 'but we should still consider false illness beliefs.' It would be met with a withering stare. I think they were paying lip service to the psychs and letting them feel they had a say and nothing more. But I'm no expert.

I get why people would be alarmed, but I think this is going to be incredibly positive.
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
I worry about them being seen as the 'ME Experts' if they are used to define inclusion criteria. I do think given the numbers inclusion criteria should be wide but it is also important to document the patients symptoms and severity so that proper subgroup analysis can be done.

I had the exact same thought, @user9876 -- I hope the data they collect is quite thorough.
 

user9876

Senior Member
Messages
4,556
I had the exact same thought, @user9876 -- I hope the data they collect is quite thorough.
I do think this is one of the areas where patients can really contribute in terms of ensuring that a range of symptoms and severitys are represented. I think it would also be good to capture something of the progression of symptoms over time how things like PEM manifest.

A different concern is that I think activity prior to sample collection should be recorded. As time goes on this gets easier but is still a cost. I worry that ME is by its nature a disruption of a dynamic system caused be exertion and that the medical profession don't think about sample rates and measuring events that might shock the dynamic system (such as going to the hospital to get blood taken)
 

Simon

Senior Member
Messages
3,789
Location
Monmouth, UK
My biggest concern is it is very slow moving and is it an all or nothing project for funding?
I assume half a grant for 5k patients wouldn't cut it - if they don't get the grant they are trying from with Wellcome (according to CMRC minutes), I guess they could then apply elsewhere.

I do think this is one of the areas where patients can really contribute in terms of ensuring that a range of symptoms and severitys are represented.
Yup, sure patients have a much better understanding of symptoms, esp PEM, than many physicians

A different concern is that I think activity prior to sample collection should be recorded.
One very cheap option would be to ask patients how they feel when the samples are taken eg good day/bad day, or some sliding scale - that might help reveal any effects of PEM on eg metabolomics.

it's so important that nothing is done which allows them to secure their positions as CFS 'experts'
I think all of those people already have established reputations as 'experts'. Though in this field, I always think 'specialist' is a better term - I'm not sure there are any 'experts' on mecfs; the science isn't yet at that stage (which, of course, is the problem).
 
Messages
13,774
I think all of those people already have established reputations as 'experts'. Though in this field, I always think 'specialist' is a better term - I'm not sure there are any 'experts' on mecfs; the science isn't yet at that stage (which, of course, is the problem).

If PACE falls, or is just badly wounded, they'll all be in a very precarious positions. I am worried that their involvement in this project could help lead to another decade+ of people like this controlling the direction of ME/CFS research in the UK.
 

user9876

Senior Member
Messages
4,556
One very cheap option would be to ask patients how they feel when the samples are taken eg good day/bad day, or some sliding scale - that might help reveal any effects of PEM on eg metabolomics.

Thats a good approach. Also asking about the complexity/difficulties of getting to the collection center. If someone has a difficult bus journey or a long walk from a car park then this could be reflected in blood results and cause PEM the next day. Although they could be asked the next couple of days as well.
 

user9876

Senior Member
Messages
4,556
If PACE falls, or is just badly wounded, they'll all be in a very precarious positions. I am worried that their involvement in this project could help lead to another decade+ of people like this controlling the direction of ME/CFS research in the UK.

One positive is the inclusion of experts in medical data who have also worked on sharing and privacy. This would prevent the type of thing happening with PACE where they claim any data that may not back their theory as personal and sensitive.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
I don't think I'd feel comfortable supporting anything involving White, Crawley and Collin. Certainly not until they've apologised.

I don't think it makes any sense to withhold support from the likes of George Davey Smith just because there are some BPS hangers-on. The BPS crowd are going to be so far out of their depth in this study that they'll need a submarine. They're going to be completely and utterly irrelevant, IMO.