Yes it was hassle from patients that was quoted.
I think it's awful Hugh Parry at 54 mins in the research funding video puts patient hassle of one of 3 reasons why CFS has low research applications. The establishment approach to Cfs and the widespread narrative of it as a treatable behavioural disorder and the historic bias of UK establishment isnt mentiond at all on the other hand. Just us smeared again and the real issues not even entertained, despite a whole hour devoted to the issue of how to get CFS success with large public funders (only 10 mintutes alas devoted to sonya chowdury' s presentation of the sobering world CFS funding report) . Hugh also tried to present that we are not the only neglected ones (not really born out with comparison to comparable illness the AFME report ) and the other general blame was placed on the poor quality of Cfs Applications. ...
Sue waddle from me research uk refuted that their researchers have experienced harassment at all. It's so evident that Hugh is not a clinicIan but a remote MRC figure who attends conferences but doesn't really encounter the sick but when people like this are in charge ...
Anyway no mention of ring fencing as a solution, but review of MRC highlighting etc , although Sonya choudhury did confuse things by saying that the 2012 MRC allocation was in response to a "highlight" rather than RFA so.... Welcome and MRC rep., along with Hugh parry did lots of waffle about how difficult it is to make successful applicatons and tiny measures which might improve the situation in terms of quality of applications etc. Mrc say the community needs to make an effort and be in it to win it?!
In reality we are talking about neglect. The MRC and other funders made its mind up as about CFS years ago and is only just now changing it but isn't prepared to do what is needed in the deeply stigmatised, misrepresented, not well informed, unfavourable environment that is the current UK CFS situation. This is costing patients and families dearly and the state a fortune. If the reasons why we have not research interest are thought to be limited to
1) cfs researchers submitting poor quality applications
2) patients scaring off researchers
3) needing to get off the ground, success breeds success etc
It doesn't leave me with much optimism things will drastically improve soon.