Daisymay
Senior Member
- Messages
- 754
I take your point
But out in the real world we have a situation where Professor Stephen Holgate (who is a really decent doc who genuinely wants to help people with ME/CFS) has undoubtedly spent a great deal of time and effort bringing together a group of top research scientists in various branches of -omics etc, organised meetings and a workshop etc,and formed a MEGA planning group - where they will discuss and develop a protocol, and will (in theory) then spend further time preparing a research grant application
If Stephen then goes back to these researchers and says -
Sorry, this has all been a complete waste of time over the past year
The ME patient community does not like the MEGA study because it involves Dr X, or the protocol you have developed is not going to work, then I think it's highly likely that they will quickly depart for other diseases and be very reluctant to take any further interest in getting involved with an ME/CFS research study
Charles, the issues being legitimately brought up by patients here are and were are totally predictable. Please don't blame patients for this.