Apologies that this is rather a long post. It is probably going over old ground.
I am becoming more and more puzzled about the question of what the MEGA study is actually intending to study. Apart from a list of distinguished scientists in various biomedical fields, we have very little clarity.
There are two bits of evidence I'm going on so far
1. The title of the project: MEGA stands for ME/CFS Epidemiology and Genomics Alliance. So no mention there of other -omics, just genomics.
According to a WHO definition:
Epidemiology is the study of the distribution and determinants of health-related states or events (including disease), and the application of this study to the control of diseases and other health problems.
This could, I suggest, mean trawling through masses of questionnaire data to look for associations between such things as socio-economic and psychological factors to look for associations with duration and severity of illness. Given Crawley's propensity for p-hacking her way through data to look for spurious associations that happen to pop up by chance, and attributing cause and effect to support her model of ME, this rings huge alarm bells for me.
All this with not a test tube being shaken, so to speak.
The other part,
genomics, seems to be the driving factor in demanding a huge data set, justified on the grounds that it has been useful in other illnesses such as asthma and diabetes in determining subsets which can respond differently to different treatments.
However these illnesses already had a great deal of scientific knowledge and effective treatments available, so refining these treatments with genetic knowledge could potentially be useful. For ME/CFS this is very different, I would argue, and at this stage, with no effective treatments anyway, refining who should get what treatment seems to me to be pointless.
Some genetics, including family studies, are already happening elsewhere, and if there were a clear single allele site, we would know about it already. Maybe genomics is not the highest priority at the moment for a new biomedical study.
2. The particular fund being applied to at this stage. I have only now found out, by linking the dates given in the detail about the patient advisory group appointments and meetings, to information on the Wellcome website, that the deadline for preliminary application is in January, that it is probably this one:
'Biomedical Resource and Technology Development Grants
These grants are for researchers who want to establish or maintain resources or technology for the benefit of the wider scientific community.'
https://wellcome.ac.uk/funding/biomedical-resource-and-technology-development-grants
I'm guessing this means they are applying purely at this stage for a grant to set up a biobank. This would involve collecting the blood etc samples and questionnaires from thousands of patients and storing them. Storing the questionnaires would probably also involve collating the data from them into a data base.
As far as I can see, this doesn't involve any biomedical research being done, possibly for years. Further applications for money would be needed to enable the genomics etc to happen, and there is no guarantee that any funding will be available.
So what I conclude from both these points is that at the end of this process there will be a huge database of questionnaire data and a biobank full of samples waiting for people to make research grants for funding to do biomedical studies.
Since there is already an ME biobank which can be expanded as funding allows, I can't see how we will be any further forward.
They may claim that the new version of a biobank is needed because to do epidemiological studies, they need a sample representative of the whole population. However, they scupper that from the start by opting to use the skewed subset attending fatigue clinics.
I think I'm going over old ground here, but needed to clarify my understanding of what the project is supposed to be about. Given that whoever is chosen to be on the patient panel will only have, at best, a few days to examine the proposed grant application details, it is indeed odd that, as Jonathan Edwards says, 'We are not even told what it is going to study'.
I'm annoyed that they're just setting up a new biobank as half of the next move when patients have for years scrabbled together to fund the current one unaided, including a recent xmas appeal, My family made a few hundred pounds donation to it several years ago, and biomedical research is still something in the future or eventually.
A NICE based super biobank... OK uk have always insisted on a broader umbrella than elsewhere but ME as a devastatng multi symptom illness (not disorder thanks S Holgate) has been neglected so many years now, they need to just buckle down , throw lots of money at this and use the perfectly adequate stricter ME definitions out there and properly assist in the effort now getting off the ground in Australia, Norway and USA to help alleviate the suffering and disability of sick people. chronic Fatigue well it's another issue AFAIC
