Hello, Clare here. Action for M.E.'s Chief Executive Sonya Chowdhury has been on annual leave (and is still out of the office) but has asked me to post the following on her behalf, given the keen interest in this topic, and the fact that she received one or two emails over the weekend. She says:
“The
QMUL’s FAQ about the PACE trial says:
Actigraphy was the obvious measure to reject because of its burden in time and effort required by participants. The patient charity advising us agreed that this would be sensible.
“However, as you can see from the minutes of meetings that have been released, there is no detailed record of any discussion about this, and Action for M.E. holds no further notes from these meetings. So I cannot tell you why the charity’s representative at these meetings agreed it would be sensible not to use actigraphs, because I don’t know, have no way of finding out, and I think it’s futile to speculate about decisions that were made by people I don’t know in meetings I didn’t attend.
“If I or any other representative of the charity was asked to offer our view on the use of objective outcome measures such as actigraphs now, I can assure you that we would be unequivocal in our support.
"Speaking as a parent of a 15-year-old who has had M.E. now for nearly four and a half years, recovery for my son means returning to school full-time and being able to engage in all the normal activities his peers are enjoying. Anything short of this is not recovery and we must ensure that we do not sell our children and others with M.E. short. It is my personal view, as well as that of the charity’s, that greater investment in high quality biomedical research is required to achieve this hope of recovery.
"With the exception of involvement with the big data study (MEGA) application, the charity no longer involves itself on trial management or steering groups, and now focuses our research-related activity solely on the promises set out in our
2016-2021 strategy.
"While I understand that trust in the charity remains an issue for some, I strongly refute the statements I have seen about individual researchers having any role, including a decision-making one, in the charity. As CEO, I hold responsibility for what the charity does and doesn’t do, and I work closely with the Board of Trustees who hold overall accountability for setting this strategic direction. I report to them and am accountable to them, to our Supporting Members, donors and recipients of our services.
"There is so much to do to achieve my hope to see treatments and recovery for my son, and for the many other millions of people suffering as a result of this horrid illness. While I am CEO, we will continue to work with as many people as possible to achieve this including the UK CFS/M.E. Research Collaborative (CMRC). I know the CMRC’s
recent announcement about its new purpose, objectives and values has been a hot topic and I am also very excited to see the progress of its proposals to instigate a top-level report, work with the James Lind Alliance and establish a CFS/ME Platform.”
Thanks
Clare Ogden
Head of Communications and Engagement
Action for M.E.
