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UK CMRC Nov Board meeting - Grand Challenge confirmed, Davey Smith keen

Discussion in 'General ME/CFS News' started by Simon, Dec 8, 2015.

  1. Simon

    Simon

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    CMRC Board meeting: the Grand Challenge | Action for ME

    The big news is that not only is the Grand Challenge going ahead, with support from Wellcome (without yet committing to funding), but also Prof George Davey Smith is keen to be involved.

    Davey Smith is ridiculously talented (he has 150 papers that have each been cited over 150 times), and more laid back than most. Not found a photo of him in a tie yet. More to the point, he's a talented epidemiologist and genomicist, who's very focused on getting the right answer -even if that means telling everyone else they are wrong. Someone you definitely want researching your illness, especially if it's hard to crack.

    [​IMG]

    From the minutes (download from AfME link above)

    Grand Challenge
    SH (Stephen Holgate) launched the challenge formally at the conference and this was followed up by George’s presentation at the end of day two. This is a national study collecting a large sample size (10,000+) of data focused on phenotyping and subtyping data using statistical analysis and bringing in genomics and other areas. George Davey-Smith is very keen to be involved.

    The Wellcome Trust has a new collaborative awards scheme which AW’s colleague has flagged with SH. AW [Allison Wallace, Wellcome Trust observer on CMRC board] outlined that this fund is for a collaboration of this nature up to £4m. There will need to be a PI but each collaborator has to play a proactive part within the project. A meeting will be convened with the Wellcome Trust to explore further.

    Following a meeting, an outline will need to be submitted to be reviewed by a Panel which will then potentially lead to an invite for application submission. There is a detailed process that will need to be considered.

    A Grand Challenge meeting is being convened in April and an outline application could be considered for September 2016. SH will circulate the application process.

    This could be a sole Wellcome Trust activity or a fully collaborative approach. DW highlighted that the MRC are awaiting the Comprehensive Spending Review to know budget. However, there are a number of opportunities that could be considered from the MRC in respect of funding. There is some feedback from previous unsuccessful applications that should be considered in respect of future applications.

    SH highlighted the IOM and the statement that ME/CFS is not a single disease entity and there needs to be new methodology applied to phenotyping alongside the importance of genomics etc. NIH announced last week the setting up of a new panel to tackle ME/CFS.

    SH identified the need to have a broader, more inclusive definition to enable the development of disease clusters will be an important consideration. This will more than likely provide the evidence that ME/CFS is not a single disease entity.

    SH will circulate the IOM and associated reports. SH/EC (Esther Crawley) met this morning to develop an outline plan for a meeting in April in Bristol to bring together the critical scientists to deliver on this agenda. A list of invitees has been developed and SH will write to them. The first principle is that this is a very high-level science-led endeavour.

    There will be one charity representation which the charities on the Board can agree. We also need to agree whether it is an adults/children’s or study of both - need to consider whether there may be different results between the adults and children. There will need to be a decision about collecting the right type of clinical data as well as phenotyping the patients by objective measurements (e.g. physiology – known immunology measures; sleep; cognition; psychological; post-exercise fatigue, pain amongst other components). SH highlighted that with the asthma study, cluster analyses was undertake on 300+ phenotypic data which identified 8 different types of asthma. Another consideration is what data is used (new vs previously collected) – need to ensure standard operating procedures.

    The level of expertise needed will need to be high and across a range of areas to ensure we collect good clinical phenotypes. Therefore we will need good physiological phenotypers, need sleep and pain experts, as well as across all the ‘omics.

    The partnership needs to be set up and then the project will be broken down into phases for implementation. SH has agreed to fund the meeting in April and associated costs
     
  2. Esther12

    Esther12 Senior Member

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    Looks bad to me.

    Anyone know what that was? Was it Ed Syke's talk, but moved to a lunchtime slot, and without there being any other public record of it? If so, that would seem very shifty. Given the harm Sykes and the SMC have done to patients, it seems fair that we should be provided with information on any talk he gave.

    So they're getting rid of EC?

    Mary Jane Willows and Ed Sykes?! A dream team.

    What a complete joke. Why is Ed Sykes involved in any way? What valuable expertise has he ever displayed?

    I didn't know AYME were getting paid by BACME.

    Those minutes leave me thinking "Thank God for Tuller and Coyne popping up in the nick of time - we need outsiders to come in and cause trouble, or we're done for."

    Thanks for copy of full minutes. Edit - kind of funny how Simon and I thought such different parts were interesting.
     
    Last edited: Dec 8, 2015
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  3. Sidereal

    Sidereal Senior Member

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    Crawley?
     
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  4. Esther12

    Esther12 Senior Member

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    Yeah - EC=Crawley.

    Also, the minutes are always frustratingly vague and lacking in information on the discussions had. I'm not confident we get the full picture from them, and suspect that's the point of them.

     
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  5. Sidereal

    Sidereal Senior Member

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    Sorry for a rather cryptic comment. I know it's Crawley, I was just expressing my dismay at this:

     
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  6. JamBob

    JamBob Senior Member

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    Can anyone explain why Ed Sykes and the SMC are involved in this in the first place?

    I don't know the history and I am astonished that he/the organisation is officially involved given the huge conflict of interest SMC has.
     
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  7. Simon

    Simon

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    Seems odd to me, given the Science Media Centre's hopelessly skewed coverage of the PACE trial mediation study (which didn't actually show the claimed causal mediation) and follow-up study (a null result).

    Good for Tuller and Coyne to make the points that patients apparently can't make, I really appreciate what they do...

    ... but think you might be missing important something here: The Grand Challenge.

    They are talking about a 10,000-strong cohort. Nothing like that has been done in mecfs before. A £4.5m grant target from the Wellcome Trust, who basically joined the CMRC because they liked the look of the Grand Challenge. And potentially a whole lot more from other funders inc the MRC -frankly £4.5m will probably barely cover the cohort and sample collection, in my view. And 'omics galore; this is one area where mecfs could be well head of most other diseases. And George Davey Smith, one of the very best researchers out there.

    All of this was put in train long before Tuller and Coyne published: Stephen Holgate in particular has been working on this for years, and deserves credit for his perserverance and achievement (OK, no funds secured just yet!).

    When a much smaller versions of this study (OMF/Ron Davis, and NIH clinical study) were announced, people were rightly delighted. I think this could be much bigger and better, and by a long way the most exciting research study to be considered in the UK.
     
    Last edited: Dec 8, 2015
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  8. Sidereal

    Sidereal Senior Member

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    Yes, sounds great on paper. My concern would be, given the involvement of certain usual suspects, whether these 10,000 patients are actually going to have ME or some kind of ill-defined unexplained fatigue and depression. I actually think small but extremely well characterised patient cohorts are a better starting point which is what Ron Davis is doing.
     
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  9. A.B.

    A.B. Senior Member

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    Sounds good in theory but I don't understand why the psych lobby has to be involved in all this. That's a red flag for me. They have nothing to contribute and stand to lose prestige and influence from advances in biomedical understanding of ME/CFS.

    This whole CBT and GET fiasco demonstrates that the psych lobby is incapable of doing basic science and I wouldn't want any of them near an important research project like this.
     
    Last edited: Dec 8, 2015
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  10. Esther12

    Esther12 Senior Member

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    @Simon

    To me, the bad outweighs the good. The most urgent problems we face are political and moral, and it looks like things are going badly there. Also, these minutes are for a meeting after Tuller's pieces, and Coyne's involvement. Maybe there should be some mention of the possibility that they might have badly screwed up?

    Maybe this study, involving some researchers who have shown that they cannot be trusted, will lead to something useful. Maybe not. The PACE spin is harming patients now, and they want to ignore it. I just think that's shameful, and it does not inspire confidence that they're the sort of human beings who will present results from this new study responsibly either.

    I have lost some respect for Holgate over the last couple of years. In some ways, that he seems to understand the problems with how CFS has been treated by researchers makes some of his actions/inaction all the worse. I don't think that it can be justified as political pragmatism playing the long-game in a difficult sitaution.
     
    Last edited: Dec 8, 2015
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  11. Marco

    Marco Grrrrrrr!

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    Not just involved but in clear positions of influence :

    Does Esther (SMILE) Crawley have the background to identify the 'critical scientists' for this 'high-level science-led endeavour'?
     
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  12. Sidereal

    Sidereal Senior Member

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    I'm sure godfather SW can suggest a 'sprinkling' of names.
     
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  13. A.B.

    A.B. Senior Member

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    Holgate also signed a letter complaining about "false allegations" against Wessely.

    http://www.independent.co.uk/voices...-online-postings-2-december-2012-8373777.html

    Even if we put the political aspect aside for a moment he should at least be able to understand the PACE criticism and speak up against bad science. If he doesn't, then he's either incompetent and cannot recognize bad science, or dependent and not allowed to have his own opinion. Vote of no confidence.

    I fear that the B cell research is our last hope to get anything useful out of the UK.
     
    Last edited: Dec 8, 2015
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  14. Esther12

    Esther12 Senior Member

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    As did...

    What were the 'false allegations' they were complaining about? The rest of the letter makes them sound like dicks anyway, but maybe there was a false allegation?
     
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  15. SOC

    SOC Senior Member

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    I'm inclined to agree. We don't need another huge study of generally fatigued people with flawed conclusions about ME in the evidence base to continue to confuse the picture of what ME is. It could negate a lot of good research with "this large study did not find [choose your biomedical finding] in ME patients, so all those other papers are invalid".

    I do not like this at all. Much to much room for us to get royally screwed and solid biomedical research put back another decade or two.

    Better the money should go to groups that don't feel the need to include biased and hostile psych researchers desperate to preserve their territory at the expense of millions of very sick people.
     
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  16. Gijs

    Gijs Senior Member

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    O my god! Blaming the victim is still going on. Simon W. is the person who is responsible that: 1. There is no money for biomedical research in ME/CFS, 2. mental abuse in many CFS patiënts, insurance problems, detoriated patiënts etc...
     
    Last edited: Dec 8, 2015
  17. Esther12

    Esther12 Senior Member

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    I can see the advantages of using a wide net in a large study intended to identify sub-groups, but there are important political and moral aspects to this and patients have seen how Oxford has been used to promote prejudices about patients. If the researchers involved have been a part of that unpleasant project, then it's hard to be enthusiastic about them being given more money.

    If the same study was being proposed by people with a better record, I'd be more enthusiastic.
     
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  18. Marco

    Marco Grrrrrrr!

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    Prof George Davey-Smith signing that letter along with Professor Sir Mansel Aylward et al doesn't exactly suggest a maverick, anti-establishment free thinker tie or no tie.
     
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  19. Dolphin

    Dolphin Senior Member

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  20. Marco

    Marco Grrrrrrr!

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    I agree. A broad definition may be useful if we are dealing with a heterogenous or spectrum syndrome while tight criteria may help identify particular etiologies/pathophysiologies but I share your concerns over who's promoting it. Maybe Esther wants to slice off the adolescents as a 'sub-group' amenable to the Lightning Process and other 'behavioural' therapies.
     

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