((Please note that I am not involved in organising the OMEGA petition.))
It’s taken me a while to sign up to the OMEGA petition because I’ve really wanted to find a way for the MEGA ‘biomedical research’ study to work.
Steps could be taken to improve the original proposal. As suggested in the previous post, the patient sample could be obtained not from the NHS clinics but from the existing UK Biobank. There are nowhere near enough samples in the Biobank at present but there is already funding for more, and more samples still could be added as further funding is obtained. Using the already established methodology, with patients coming through GPs, this could produce a reliable sample with the focus on PEM. There would be plenty of severe and moderate patients and – if my rudimentary understanding of ‘big data’ is correct – the sample need not be as large as the one from the clinics as patients with other fatigue conditions would not be included.
If Dr Charles Shepherd – or someone appointed by him – could be in charge of this then I am sure that the majority of the patient community would get behind the project. But would such a switch be achievable? That is the problem. The word is that Prof Esther Crawley is in charge of patient selection – and is unlikely to want to change the way it is done.
The involvement of Prof Crawley, of course, has been one of the main reasons why patients have been uneasy about MEGA right from its first announcement. Yesterday’s publicity about FITNET, Crawley’s upcoming online CBT study, has come as a timely reminder of why that is.
Yesterday’s reports were brimming over with misinformation. Crawley cited a study in Holland in which online CBT had been successful over six months but failed to mention that at long term follow-up it had fared no better than ‘standard care’. She also announced that 1 in 50 children were affected by CFS/ME, an inflated figure which comes from her CFS At Age 16 project. The figure is so large because it was based on children and their parents filling out questionnaires about being tired. No account was taken of the presence of other conditions that might have produced fatigue and the children did not see a doctor. There was no mention of PEM. Crawley effectively measured the number of children with generic fatigue – and then called it CFS/ME.
Why should she want to make such an obvious exaggeration, one wonders? Could it be because she doesn’t understand that ME is a distinct condition from other forms of fatigue? Or is it simply because the more people she announces have CFS/ME, the more people she can ‘cure’ with CBT? What worries me most, with MEGA in mind, is that the research is so sloppy and so obviously inexact. Quite apart from her belief in the biopsychosocial model, I wouldn’t trust her to take a leading role in a major piece of research.
So with a heavy heart, I’ve signed the OMEGA petition, a vote of ‘no confidence’ in the MEGA study and I urge you to do the same if you’ve been as slow off the mark as I have. In the unlikely event that MEGA takes a turn for the better, we can always unsign, but unless Prof Crawley departs the scene, I don’t see how I can trust the study – and there doesn’t seem to be much prospect of her losing interest any time soon.
There’s something else that’s on my mind as well. People have talked about MEGA being a waste of precious research funds but is there a greater danger than that? In the future there may be a movement to pool the resources of ME Biobanks internationally. On the face of it, it seems like perfect sense to pool resources like that: a great idea. But what if a future MEGA Biobank is added to the mix? Sonya Chowdhury has been to the ACFSME Conference, banging the drum for MEGA. What if we fail to get the truth about it out there? What if people across the world start getting the idea that this is a good study and want to pool the MEGA Biobank with theirs? We could end up with the global ME Biobank being polluted – or at least diluted – with samples from a lot of people with other fatigue conditions.
To be honest, I don’t understand enough about ‘big data’ to know if this is a genuine danger or not. Can anyone advise me? But we have seen PACE wreak havoc across the world. Perhaps it’s already time to minimise the effects of MEGA by letting the world know what we think about it right away. I’m voting ‘no confidence’. I urge you to do the same.
Update: Steve Hawkins responded with his perspective on what might be the consequences of a Crawley-selected Biobank – see my next post.
Clark Ellis has summarised his own reasons for signing the ‘Opposing MEGA’ petition – well worth reading.
Tanya Marlow has written a great critique of yesterday’s nonsense from Prof Crawley on her Facebook page. Hmm… Now how do you link to Facebook?
And here’s a summary from Utting-Wolff
Well done Scott Jordan Harris for getting a rare sensible article in the media yesterday. And well done The i for publishing it.
4 thoughts on “Why We All Need To Sign The OMEGA Petition”
Still incredulous at the media’s complete lack of fact checking, and can only wonder at the motivation of Crawley and the SMC in deliberately misinforming them.
On the ‘big data’ front, I think that, all genuine physical measurements will be useful if used in the right way. The danger comes from any extraction/filtering that uses diagnosis as the reference field. If they do that–and I’m sure Crawley and co would, because they think they can diagnose without biomarkers–the results would be garbage, as there would be many conditions given the wrong name but appearing together.
On the other hand, filtering on key concrete signs like PEM, POTS, Bedbound, etc. would pull up useful groupings whatever the ostensible diagnosis.
In the wider scheme of things, there are now a number of entrepreneuring projects aiming to collect ALL big medical data, and link all medical databases together. I read a good piece on this recently by one bioinformatician who is setting up a giant server, but I don’t seem to have bookmarked it. Here is a conference on getting all genomic information into ‘the cloud’ for free searching and filtering:
And one from The Lancet, on the astronomical amount of data that is about to flow from mobile phones whose apps have turned into our version of Star Trek’s ‘tricorder’. All this info will go into ‘the cloud’:
So we’re getting to the stage where all data is useful: so long as it is faithfully produced. Sadly, we know from PACE that data will have to be graded by association with researcher, and those who cannot be trusted will have their data discarded. There is nothing they can do about this: if their name is on their shoddy work, it will go nowhere, and all the data they collected will be wasted.
There lies the danger of MEGA: not that it will pollute the big data, but that any good data it contains will be at risk of being discarded by everyone but Crawley and her associates. That is why patients should NOT let their data be associated with MEGA, while Crawley is involved.
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Thanks, Steve. I think you have probably nailed it there. Once again, I think your comment deserves a bigger audience so I trust you’re OK for me to use it in my next post? I’ll take the liberty of assuming your answer is ‘yes’ since you were fine with it last time…
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A disturbing thought: Maybe Crawley *does* appreciate that the wider field will steer clear of *her* data, and give her many more years of exclusive material for producing papers that ‘prove’ anything she likes, with the assured backing of SMC.