Invest in ME Research UK blog post, June 2018: Status of Research, Treatment and Perception of Myalgic Encephalomyelitis 2018
Accountability and Action
“None of the recommendations from the CMO Working Group report have been fulfilled
– a testament to the failure of governments, UK Chief Medical Officers, NHS and Department of Health
– and the Medical Research Council and those from the MRC charged with changing things for the better.
In all of the ways that ME has been handled over the past decades one inexorable fact remains – people with ME have continued to suffer and have continued to be let down.
Little more needs to be stated in order for parliament to take action.”
The charity reviewed the status of research, treatment and perception of ME in light of possible debates which might occur in UK.
We do not know if the parliamentary debate on 21st June 2018 is part of a pre-determined set of actions that leads to an agenda that has already been prepared in meetings over the past months.
Whatever the background this status document has been produced to suggest actions that need to be taken based on the lack of any real intent to make progress in the past.
This is part of the status of research, treatment and perception of ME – in 2018.
The continual failure of those who have been responsible for the policies for ME – policies that should have improved the lives of patients and their families – must bring some accountability.
This continual merry-go-round which sees patients fooled by excuses and dead-end initiatives every few years must stop.
What Needs To Be Done
A number of actions which would enable a new beginning to be made
- A Public Inquiry into ME
- Implement the CMO Report Recommendations
- Removal of Existing NICE Guidelines for ME
- Annual Report to Parliament
- Transparency of Meetings Concerning ME
- Removal of Those Responsible for Current Situation from Positions of influence
- Investment in ME Research
Things cannot go on as they have done before. Real change needs to occur – and not with the false change that is witnessed every few years with disingenuous attempts made by organisations and individuals who act as gatekeepers for meaningful change; – and not with continued apathy from establishment officials.
A five-year, ring-fenced budget of £20 million per year for biomedical research into ME should be allocated.
Funding for the Centre of Excellence for ME that the charity has been facilitating the development of for the last eight years.