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/chief-exec-appointed-regius-professor-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 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
It is a pity that Sir Bruce, the CMO and DoH do not do this themselves. Although perhaps that illustrates precisely the level of apathy and ignorance that we have mentioned that produces such flawed information such as the recent MUS Commissioning documents.
Perhaps Sir Bruce could begin with this selection of pieces which contain references within –
http://www.tandfonline.com/doi/full/10.1080/21641846.2017.1259724
http://www.nationalacademies.org/hmd/Reports/2015/ME-CFS.aspx
http://www.pnas.org/content/113/37/E5472.full
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5161229/
http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0129898
http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0026358
Finally, the most recent publication by no less than the director of the National Institutes of Health (NIH) – Dr Francis Collins https://directorsblog.nih.gov/2017/03/21/moving-toward-answers-in-mecfs/ detailing what the NIH are doing for this “perplexing disease” – Dr Collins’ words.
It is also illustrative that both the NIH and the CDC are sending representatives to listen and to present at our International Biomedical Research into ME Colloquium and our 12th International ME Public Conference in London in May/June – yet neither the CMO, the MRC and neither, it seems, the NHS can be bothered to attend – and we cannot even get an agreement to meet.
The continued lack of acknowledgement of the charity’s international events by the CMO, DoH, Ministers for Health, the NHS and the MRC is a testimony to negligence
It took two months for Sir Bruce to reply - three months since our first letter [5].
And so we are back to the apathetic, negligent and incompehensibly arrogant response from Sir Bruce Keogh, National medical Director -
"The most recent NICE guidance advises that Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) are the most effective forms of treatment for ME/CFS."
Coming just before our conference this reply illustrates a dysfunctional NHS management hierarchy which has no interest in tackling the issue of ME.
We feel the NHS management has been so severely compromised by the influence of flawed BPS theories over the last decade or more
that it is incapable of
making any impartial decisions on the treatment of people with ME.
Professor Sir Bruce Keogh has announced that he will be stepping down as NHS England’s National Medical Director at the end of the year after 10 years in the role.
Sir Bruce said:
“By the end of this year I will have served as national medical director for a decade. It has been and continues to be a huge privilege. But the time must come to make a change and I now have the opportunity to focus my attention on improving services for women and children in my home city. I am really looking forward to it.”
Simon Stevens, Chief Executive of NHS England said:
“Bruce has given superb medical leadership to the NHS and has been a great source of wisdom and advice to us all”.
We see it somewhat differently.
To be perfectly frank - the NHS is well rid of career civil servants whose job seems to maintain an ignorance about a disease affecting so many lives.
And if Sir Simon Stevens believes Sir Bruce deserves credit for "superb medical leadership" then maybe the list
of people leaving the establishment organisations ought to be increased. Superb medical leadership is exactly what has been missing from the NHS with regard to ME.
We need people in the NHS who will act. We do not need hypocrisy, meaningless platitudes, indifference and apathy or self-serving bureaucrats.
Sir Bruce Keogh, like Sir John Savill, has presided over an appalling episode in the debacle which has been UK health and research policy on ME.
And now they move on to pastures new - whilst people with ME and their families remain without any appropriate services and with only the high-quality
research being funded by Invest in ME Research and like-minded organisations.
Again, failure is always an option for the establishment.
But we will persevere.
Change is now possible. As Henry Ford said -
"Failure is simply the opportunity to begin again, this time more intelligently."
