Invest in ME: Status of Research, Treatment and Perception of Myalgic Encephalomyelitis 2018

[Andy]

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.

http://investinme.org/IIMER-Newslet-1806-01.shtml

Direct link to their status document (25 page PDF document) is http://investinme.org/Documents/Fac...ception of Myalgic Encephalomyelitis 2018.pdf

 

[Joan]

A very comprehensive submission indeed. It revisits the Chief Medical Officers report of 2002 and goes through each recommendation and provides a current update on that recommendation.

It outlines unequivocally the failings of the UK establishment when it comes to people with ME. It pulls no punches and tells it like it is. Well done to Invest in ME.

 

[Skycloud]

There are a few places where I might nitpick but overall I think it's very good. I very much like the focus on the wide ranging institutional failure. I think instituitional failure is one of our biggest problems in that without it all our problems would have been addressed far far better long ago. I hope attention is paid to it.

 

[Trish]

I've only read the first page so far which focuses on the WHO definition of ME as a neurological disorder and the UK government agreement with this, then goes on to point out that most pwME don't see a neurologist, and most neurologists don't think it's a neurological condition.

Placing us as patients firmly under the neurological specialism may seem better than psychiatry, BUT, neurology has their convenient 'Functional Neurological Disorders' dustbin to dump us in. They already do.

We don't have enough research evidence yet to know what kind of biomedical condition ME/CFS is. Multisystem seems a more accurate description at the moment.

Glancing through the rest of the document, the use of the CMO report to highlight what was promised, and hasn't been done and to say what should be done looks very good.

 

[ScottTriGuy]

... I think institutional failure is one of our biggest problems in that without it all our problems would have been addressed far far better long ago. ....

I could not agree more.

A close second is the lack of spine from political and health care leaders to change the institutional failure / error / bias.