Invisible Illness Awareness Week 2016: Our Voices Need to Be Heard
Never heard of Invisible Illness Awareness Week? You're not alone. Jody Smith sheds a little light to make it more visible
Discuss the article on the Forums.

How much will MEGA cost? And an alternative proposal.

Discussion in 'General ME/CFS News' started by trishrhymes, Oct 19, 2016.

  1. trishrhymes

    trishrhymes Senior Member

    Messages:
    2,154
    Likes:
    17,898
    I'm not sure whether this has already been covered, so forgive me if I'm agitating unnecessarily! I have been trying to get my head around how much MEGA is likely to cost, and none of the figures make sense, mainly because I have too little information. Here goes anyway. Please chip in with correct figures, I'm sure mine must be wrong.

    The British ME/CFS biobank set up recently has cost more than £1million (?). It currently has samples and information on 300 ME/CFS patients and 200 controls. Let's call that £2000 per patient to check diagnosis, collect samples and questionnaires, store, maintain, staff, house and pay running costs for the biobank, etc.

    The MEGA study wants to study 12000 people (patients and controls). The first stage is setting up a biobank.
    This might therefore cost more than £24 million.

    The aim is to ask for initial funding to set up the biobank of, say, £6 million, which would be about £500 per patient. Perhaps economies of scale?

    This stage would not involve any testing of the samples, simply provide a resource for future studies.

    The next stage would be genomics, proteomics, metabolomics and lots of other stuff.

    Lets just start with genomics, which seems to be the indicated starting point. A whole genome individual analysis currently costs about £1000 per person. So that's another £12 million just to get the data. Let's assume another £1 million to do the detailed analysis, subgrouping, comparison with phenotype etc., so that's £13 million.

    A wide ranging plasma metabolomic study like Naviaux has done is about £1000 per person, so, including analysis, that's another £13 million.

    If we want to include a much wider range of data, lets look at The Open Medicine foundation in depth study of severely ill patients (Ron Davis), which is costing about $20,000 per patient. Call this £16,000 per person.
    Multiply this by 12000, gives close to £200 million.

    Whichever way I look at it, I can't seem to square the circle.

    My conclusion is that the aim of the project is to spend all the ME research funding for the next decade just setting up the biobank.

    Alternative proposal:

    Given that there is already a good biobank with hundreds of samples, I'd much rather see the proposed MEGA second stage research (all those -omics projects) started on that material now. In my opinion that's where the £6 million I've hypothesised above should be spent. All those great biomed experts listed by MEGA could start as soon as that funding is in place, not wait the years it will take to get the MEGA biobank set up.

    What think you?
     
    Last edited: Oct 19, 2016
    TiredSam, slysaint, flybro and 11 others like this.
  2. A.B.

    A.B. Senior Member

    Messages:
    3,750
    Likes:
    23,211
    Indeed. Studying 12000 patients and performing in depth testing just costs too much. Without in depth testing there is no guarantee that it will be possible to distinguish subgroups. Metabolomics testing by Naviaux cost $1500 per patient just for metabolomics. If we conservatively assume $5000 per patient this will cost $60 million. I find it difficult to believe this amount will be made available.

    So the likely outcome of all this is that they will only be able to afford superficial testing that is unlikely to give a clear picture of what is actually happening, defeating the purpose of the study. Confusion and uncertainty will result. The Wessely school will get nice data on fatigue, depression, anxiety from questionnaires which can fuel their brand of pseudoscience for decades to come.

    I'm getting the impression Davey Smith underestimates the challenge because he is unfamiliar with ME/CFS.

    I await a more detailed study plan that proves me wrong.
     
    Last edited: Oct 20, 2016
    TiredSam, taniaaust1, flybro and 9 others like this.
  3. potbatch

    potbatch

    Messages:
    28
    Likes:
    184
    Leeds, UK
    I think your suggestion makes perfect sense, which MEGA doesn't. And I think AB has hit on the cunning plot behind it:

    People have been asking what's in it for Crawley. But as you say there's plenty enough money for some psycho questionnaires and the bio samples will throw up nothing useful because there won't be a representative sample of patients. They'll have a tendency to be CFS rather than ME (because they come from the clinics) so likely to have much more showing up on the psycho questionnaires and much less on the bio samples, thereby proving the Wessely school right all along.

    I've been suggesting we need a more representative sample of patients instead of just from the clinics but maybe that's not realistic. As Trish suggests, if you try to bring in more patients, the figures don't add up. Crawley is saying it will be nice and cheap because we can get all the patients from the clinics and they'll already have a full medical history taken and full medical examination - all of which is nonsense because hardly anyone in the clinics ever sees a doctor. Crawley knows it's nonsense but she doesn't care. She never did - take a look at her CFS at Age 16 study which 'diagnosed' the children on the grounds of questionnaires and without a doctor. But she'll get plenty of fatigue questionnaires to play with: enough for a decade or more of 'studies'.

    So yes, they should work on the existing biobank instead. But I guess they will argue that 300 patients isn't enough.
     
    TiredSam, taniaaust1, flybro and 2 others like this.
  4. worldbackwards

    worldbackwards Senior Member

    Messages:
    2,051
    Likes:
    10,246
    £6 million buys a lot of cakes. Just saying.
     
    flybro and trishrhymes like this.
  5. trishrhymes

    trishrhymes Senior Member

    Messages:
    2,154
    Likes:
    17,898

    Thanks, @worldbackwards I need to lighten up a bit. I know whatever I say will have no impact. Don't know why I bother really.

    Cakes and ale all round.

    :hug:
     
    flybro, Jan and worldbackwards like this.
  6. worldbackwards

    worldbackwards Senior Member

    Messages:
    2,051
    Likes:
    10,246
    Don't mind me, you can spend your hypothetical £6 million on whatever you want. Just, y'know: there's always cake.
     
    TiredSam, Hutan, flybro and 1 other person like this.
  7. Keith Geraghty

    Keith Geraghty Senior Member

    Messages:
    155
    Likes:
    3,291
    i tweeted that the £5 million could fund soemthing like 5 teams of researchers in 5 Universities in the UK, led by a senior with two fellows and a PhD student to do research for 3 years each on ME CFS --

    thats how Id spend the money - ofcourse its not going to happen as its grant based -- but I think the MRC and Wellcome will be looking a little bit more closely at the MEGA proposal than the MRC did when they got PACE - the model of a mill from here, and a mill from there, wont wash this time around - MEGA will still have White, and funders have memories - so unless Crawley comes up with a watertight case for MEGA, its going to get a rocky road in review; despite her best PR efforts

    the same old model of we have AyME on board, wont make too much difference either --- but who knows they may get this one through also
     
    BurnA, ukxmrv, flybro and 3 others like this.
  8. potbatch

    potbatch

    Messages:
    28
    Likes:
    184
    Leeds, UK
    I tweeted about your idea and lots of people tweeted and liked including the ME Association.
     
    moosie, ukxmrv, flybro and 1 other person like this.
  9. ianorourko

    ianorourko

    Messages:
    4
    Likes:
    31
    Thanks guys, really good points on the financial feasibilities of this study. I think that this line of thought needs to be put out there more because, by itself, it pretty much shows how tainted and unrealistically ambitious MEGA probably is ( or would be if what they are proposing is actually what they wish to achieve ( which it isn't) ). Why on earth did they decide on 12,000 patients...
     
    Last edited: Oct 20, 2016
    moosie, ukxmrv, flybro and 2 others like this.
  10. JoanDublin

    JoanDublin Senior Member

    Messages:
    369
    Likes:
    1,928
    Dublin, Ireland
    Trish (or anyone) is there a link to this cost per patient anywhere? Many thanks
     
  11. AndyPR

    AndyPR Senior Member

    @Ben Howell can you confirm the cost?
     
  12. Ysabelle-S

    Ysabelle-S Highly Vexatious

    Messages:
    524
    Likes:
    4,047
    Someone on Twitter posted some figures, but I can't recall what it was about - I thought it was MEGA - only that the psychs ran off with about 84K while the others barely got four figures. It was a breakdown of spending. But I'm not sure where it came from or whether it was official, or even connected to something else.
     
  13. mango

    mango Senior Member

    Messages:
    905
    Likes:
    4,992
  14. Ysabelle-S

    Ysabelle-S Highly Vexatious

    Messages:
    524
    Likes:
    4,047
    It doesn't look like the funding circle can be squared with decent research into large numbers of patients, and then of course there's the problem of which patients they're studying, and whether it's the usual undefined fatigue cases rather than actual ME sufferers. I still think they should just hand the money over to the likes of Stanford and Columbia, because it would probably be more helpful. The experts there have a better idea what they're doing and have not subscribed to the quack school's influence. They won't do that, of course. But the UK is the heart of the rot, and footing the bill for research elsewhere would be one way of making up for the PACE fiasco they exported to the rest of the world.
     
  15. Ysabelle-S

    Ysabelle-S Highly Vexatious

    Messages:
    524
    Likes:
    4,047
    Just to add, I'm sure there are researchers in the UK who would be useful - it was good to see Julia Newton mentioned - but the presence of the certain individuals/organisations, and the issue of patient recruitment, etc, are huge stumbling blocks.
     
    Maggie21 likes this.
  16. JoanDublin

    JoanDublin Senior Member

    Messages:
    369
    Likes:
    1,928
    Dublin, Ireland

See more popular forum discussions.

Share This Page