An update from the Scientific Team and Patient Advisory Group
I don't see anything that looks like the actual words of anyone on the PAG. There are no quotes or statements that look like actual quotes. There are no clear opinions of anyone on the PAG.
In fact I think the only actual opinions of anyone on the PAG are from those who resigned and even those were hampered by some sort of confidentiality agreement. I would just love to read a freely written report from the PAG without any editing by their masters.
The whole statement newly posted by MEGA is entirely written in closely garbled corporatese. I don't trust statements like that. I don't trust people who prevent me from hearing the opinions that I need to know.
Both the Scientific Team and the Patient Advisory Group agree that it is absolutely essential that we collect data from those most severely affected by M.E., and those affected long term. This will require home visits which are very expensive, and the financial limit of the current application will not cover this. However, it was confirmed at the meeting that we will submit an application to this current funding call with a full commitment that further applications will be made to include home visits. By establishing the MEGA bioresource and proving to funders that we can collect data from patients in clinic, the chances of us successfully accessing further funding are hugely increased.
My bolding; their words; my interpretation, I am sure there is a message trying to get of there somehow. This is what I think it is -
We are going to do another application. It will not include home visits. If we get this we will, perhaps, make a further funding application or maybe more than one application. You can expect one of these follow-on applications to include a request for home visits. However if we get our first tranche of research funds, this study will go ahead without home visits regardless of whether we get any further applications approved. We will go ahead with research which does not include home visits. Home visits are an optional add-on if we get an additional application approved. Don't hold your breath waiting for home visits to be incorporated.
The bit in the last sentence quote above
"... proving to funders that we can collect data from patients in clinic ..." astonished me. Why do they need to prove this to funders? I thought this was supposed to be an experienced team.