Having previously worked in both primary care (general practice) and various specialities in hospital medicine (including psychiatry) I know that chronic fatigue is an extremely common symptom in the general population.
Chronic fatigue can be a key symptom in both existing physical and psychological/psychiatric illnesses as well as resulting from a combination of less well defined physical, psychological and social components.
But in many cases a simple neat cause/explanation for chronic fatigue just cannot be given.
So there are obviously many different causes of chronic fatigue and whilst we can debate, criticise and question the way in which the MEGA study is going to be carried out (which is to be encouraged and should be part of the scientific process), MEGA is not going to be a study that is going to try and sort out clusters involving the huge numbers of patients who have some form of chronic fatigue.
Rightly or wrongly, and this again is being debated, the MEGA study is going to be looking at a much smaller but still very heterogenous group of patients who meet one of the 20+ clinical or research definitions of ME, CFS or ME/CFS - Canadian, Fukuda, IoM, International Consensus, Ramsay ME, London ME, NICE etc - where there is no general agreement as to which is the most accurate or helpful and where we do not have any consistent and robust associations between symptoms and pathological abnormalities.
In other words, a situation which is very messy to say the least.
The prime intention of MEGA (and I am again open to opinions as to whether this is the most effective way of doing this) is to investigate a large group of patients that meet with one of more of these definitions of ME, CFS, ME/CFS to see (as is the case in asthma and a growing number of other conditions) whether there are symptoms and/or abnormalities as identified by the new technologies that will be used (genomics, epigenomics, metabolomics, proteomics etc) that form clusters that could then help with both sub-grouping under the ME/CFS umbrella, as well as helping us to move away from the dreadful 'one size fits all' approach to management with CBT and GET for everyone who comes under the ME/CFS umbrella that is applied by NICE in particular here in the UK.
This is why I am willing to support the AIMS of the MEGA study, am willing to take part in the discussions on how the study will be designed, and at the same time listen to critical and opposing views from both people with ME/CFS and researchers such as Jonathan.
At the conclusion of this process the MEA will again be consulting with its members.
We will then be making a decision as to whether the charity is going to support a research grant proposal for the protocol that has been decided.
The MEGA study is also on the Agenda for a meeting of the ME Biobank Steering Group (which I chair) on Wednesday next week - which will give us an opportunity to discuss this particular aspect of the MEGA study.