Countrygirl
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http://www.investinme.org/IIME-Newslet-1706-02.shtml
Click on the link for the full document.
Click on the link for the full document.
Failure is an Option.
FAILINGS OF THE ESTABLISHMENT ORGANISATIONS
"Defeat is not the worst of failures.
Not to have tried is the true failure."
It may have escaped the notice of some that the MRC is preparing to be absorbed into the new UK Research and Innovation (UKRI) and the existing CEO, Sir John Savill, will be winding down affairs until the transition is completed. https://www.mrc.ac.uk/news/browse/c...r-of-medical-science-university-of-edinburgh/
We have stated several times before that the MRC performs excellent work and can be a force for change.
Yet that has never been the case with regards to ME.
And, sadly, Sir John’s reign over the MRC, as well as the previous policies of the MRC, has been a failure as far as ME is concerned.
He had the chance, the opportunity, to correct MRC policy toward research into ME and change the lives of ME patients and their families for the better, and quickly.
He failed to do so.
He had the chance to condemn the PACE trial, the conduct of the PACE trial investigators, the way the PACE trial was managed – and he had had the chance to demand that public funding for the PACE trial (awarded by the MRC) should be returned.
He failed to do so.
He had the chance to respond to Invest in ME Research’s letters [1] and engage with us and commit to a change in the policy toward ME research and make it truly a priority.
He failed to do so.
He had the chance to condemn the appalling behaviour of cmrc members in contacting the charity's advisors behind our backs [2] once we had pointed this out to him – and thereby force some semblance of integrity in how others, part of or associated with or connected to the MRC, should conduct themselves.
He failed to do so.
He had the chance of attending or being represented at Invest in ME Research’s Colloquiums and Conferences and really see what could be done if the correct policies towards ME and the will to change things were present.
He again failed to do so.
He is not alone of course. Those charged with more direct influence of MRC policy toward research into ME have been abject failures and have achieved nothing over the last fifteen years since the CMO report.
None of this will matter as Sir John may well go on to his next position without any comment or criticism from others.
The MRC is broad enough and does so much excellent work elsewhere that research into ME is not considered of any importance.
Yet it is a collective, corporate failure to people with ME and their families.
And society is the poorer for this missed opportunity.
Sir John had the possibility to change millions of lives in this one specific area of research and healthcare – simply by working with us and looking for solutions. Indeed, we had been led to believe that Sir John did understand our attempts to change things and would be supportive. We believed that Sir John would help.
We feel let down.
And now the MRC will transition to the new UK Research and Innovation - with little sign of any acknowledgement of these failures towards research into ME for a generation.
An opportunity missed.
Can one leader of a large organisation really affect change?
OF COURSE!
Alas, failure is always an option for the establishment.
AND A MORE PREDICTABLE RESPONSE FROM THE ESTABLISHMENT
After Invest in ME Research organised a meeting with the Chief Medical Officers of UK we held out some glint of an opportunity to discuss treatment of and research into ME with those responsible for influencing policies.
We found a predictable response - with Scottish, Northern Irish and Welsh CMOs, indicating interest but displaying apathy. The English CMO delegated the meeting to the Deputy Chief Medical Officer.
That said, our group of charity, political, scientific and research representatives met in London [3]
The stalemate, the ignorance, the apathy continued -
Dr Gina Radford, Deputy Chief Medical Officer, England, suggested it would be advisable to meet with the head of the NHS as some issues were outside of the CMO’s remit.
We wrote to Sir Simon Stevens [4].
After receiving no reply from Sir Simon we repeated our request.
Apart from inviting Sir Simon to our conference we requested a meeting.
The buck was passed to the National Medical Director, Professor Sir Bruce Keogh - whose secretary wrote back that Sir Bruce had "reviewed this invitation with Sir Bruce and while he was very grateful to receive it we are unable to accommodate the event in his diary."
Not good enough.
Our reply
Thank you for the response from Sir Bruce Keogh, and by delegation from Sir Simon Stevens.
We have to inform you that this response is totally UNACCEPTABLE.
Sir Bruce and Sir Simon have a responsibility to ME patients.
We will not let this matter rest.
After discussion with the CMO’s office it is imperative that Sir Bruce demonstrates some responsibility in this matter, however disagreeable it may be to the status quo.
Please review this decision immediately!
We await your further correspondence and encourage Sir Bruce to take this matter seriously and treat it with the urgency and, frankly, the consideration that it deserves,
Another major reason for requesting a meeting with Sir Simon (and/or Sir Bruce) is due to the constant use of misinformation by your departments and your complete failure to keep up to date with current research on ME/CFS – as is amply demonstrated by the deplorable MUS Commissioning documents.
What the NHS is doing with these documents, and with the totally apathetic approach to ME which has been allowed to occur by DoH and NHS, is risking the lives of patients – something for which the leaders of the NHS will eventually be made accountable, "
Sir Bruce's secretary returned with this response -
"Following my below email, I wondered if you would be able to share your findings or latest research so we can ensure to get the right info for Bruce. "
This we did.
We replied
