Monday, 15 February 2010

Gettin' Manifestin' - Commitment 3

Research today, and already I see an addition I'd like to have seen in this particular manifesto commitment. To the first sentence below I would simply like the words 'and acted upon' inserted at the end of the sentence, so that the commitment would read:

See that robust scientific evidence of the biology of this disease is obtained and disseminated across all government departments and acted upon. (my addition in itals)

It seems to me that the problem right now is not that information isn't out there - it is that it is being persistently and systematically ignored because it suits certain agendas for this to be so.

In his witness statement to the NICE guidelines judicial review, Dr Ian Gibson reminded us of one very basic fact:

"We should not forget that ME patients have a legitimate right to aspire to a cure. Far too many doctors appear to have lost sight of that objective."

When being bombarded with information from all sides telling you you are crazy, malingering or simply attention-seeking, it can be easy to lose sight of that aspirational right as a patient too. When we ask for decent research into our condition, we aren't asking for the moon on a stick with sprinkles! Wanting to know why you are sick, and how you might be made better, has never seemed to me an indication of insanity. Isn't it just what any sick person wants?

3: Research

See that robust scientific evidence of the biology of this disease is obtained and disseminated across all government departments.

Key facts:

In 2006 the Gibson Inquiry into the progress of scientific research on M.E. found that the issues outlined in 2002, in a Report to the Chief Medical Officer, had not been addressed. It said:

“Although some interesting biomedical research has been done in the UK precedence has been given to psychological research and definitions. The UK should take this opportunity to lead the way in encouraging biomedical research into the potential causes of CFS/M.E. Further research is the single most important area in this field.”

In 2008 the MRC set up a new Research Expert Group under the leadership of Professor Steven Holgate, Southampton University, to review current research, identify research opportunities and encourage new research to understand the causes of CFS/ME.

Our expectations:

Substantial resources will be committed to identify the cause of this marginalised condition once and for all.

The Medical Research Council will update its highlight notice on M.E., in response to the findings of the Gibson Inquiry which said that more funding should be allocated to “research into potential causes, which might lead to better diagnostic tests...Investigating potential sub-groups must be a strong priority.”

Identify whether advice can be given to those with significant infections in order to prevent them from developing M.E. This should include the possibility of establishing testing and treatment for Xenotropic Murine Leukemia Retrovirus (XMRV), herpes and enteroviruses and other infections which may be found in people with M.E.

Clinical trials of medications which have been found to be helpful to some people with M.E.

M.E. will be designated as a reportable health condition to enable the robust collection of data on the number of children, adults and young people with M.E. in the UK, the degrees of severity experienced by different groups, demographic data, and any family history of the condition.

1 comment:

  1. Hi Janie,

    Thanks for your note. You're welcome to quote me any time!

    Keep up the good work. Take care of yourself.