ME Research UK withdraw from UK CFS/ME Research Collaborative

Cheshire

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The trouble is most people making comment about this disease without actually having first hand experience of it talk crap. Working out whether it's patriarchal crap or just the regular crap is a bit tricky......it's still crap.

I am a man with a beard btw (I only grew it though so I don't have to waste energy shaving every day)
Example of that shameless and proud ignorance (GPs interrogated about MUS)
Richard: I often use a diagnosis called neurasthenia. It is, that is, I do not know what the criteria actually are for it, but I think it is such an incredibly good diagnosis
http://onlinelibrary.wiley.com/doi/10.1111/1467-9566.12581/full
 

boombachi

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"Richard: I often use a diagnosis called neurasthenia. It is, that is, I do not know what the criteria actually are for it, but I think it is such an incredibly good diagnosis"


Example of that shameless and proud ignorance (GPs interrogated about MUS)


http://onlinelibrary.wiley.com/doi/10.1111/1467-9566.12581/full
Our health system has an obsession with labels. We like to put things in neat boxes then decide what to do with people dependant on the label on the box they are in. Secondary care can exclude people if they don't fit their box perfectly. Primary care providers like GPs don't have this luxury. They have a lot of patients cluttering the place up who don't fit the boxes and make the place look untidy.

This habit of boxing up is exemplified by psychiatry. Just look at the number of different anxiety disorders there are. The problem is always anxiety. It just has a different trigger. Why all the different labels? Is anxiety experienced in social situations different from anxiety experienced when alone? It is the equivalent of having 'oak tree asthma' and 'cigarette smoke asrhma' to my mind.

I have no problem with there being a recognition that some people experience anxiety as physical symptoms or worry excessively about their health, but it is still anxiety and there is already a treatment pathway for that. It does not need another label or to be confused with physical symptoms for which medical science is not yet able to explain but the need to put something in a box is so compelling, it seems we keep trying to find a label that fits on the box.
 

Anne

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Not fully read the thread yet, but there are beginning to be visitor posts on MEA and AfME fb pages.

Another good chance to push a point of view that may be read by other than PR members. Likes and comments useful.
I only found two visitors posts on the MEA FB page, and very few comments. Are there more?

I think it would be a great idea if everyone here who is a member of the MEA and agrees, would comment on the posts.