Monday, 29 October 2012

Collapse of Scottish Cross Party Group on ME

Very disappointed to see that the Scottish Cross Party Group on ME is no more.  I attended an event in May at the Scottish Parliament.

It is so, so, so vexing to see that thirty years on from my own diagnosis that the conflation with 'fatiguing illnesses' goes on, undermining patients with this catastrophic neuro-immune illness. I blame those medics who enabled the conflation to occur in the first place. I strongly believe that if Simon Wessely had not involved himself in ME, the landscape today would be much less divisive, though we may still not have all the answers.

Politicians are, sadly, not being adequately educated. It would seem that unless you actually suffer from neurological ME, or care for someone, you simply CANNOT understand why it is so damaging to mix ME with CFS and shove it under the disastrous umbrella of fatiguing illnesses. I am so sick of it all. These 'CFS' scientists have offered me, and countless others, NOTHING to alleviate our symptoms  - or cure us - and  have only squandered precious resources on psychosocial therapies (that are entirely useless and harmful if you have ME).

I'd also like to quote from a source I respect very much:  "The issue at the heart of this impasse is one of definition and compromise, and the very great harm that can result, and - as can be seen in England – that has resulted from bargaining away classic ME as a distinct organic neurological disease, in favour of the umbrella term ME-CFS..."

'Bargaining away classic ME' is a perfect description of what has gone on.

And I know, know, know that people with ME are often mislabelled with CFS and vice versa.  I am not criticising those with a CFS diagnosis (often PWME are accused of such), that would be ridiculous. I am criticising a status quo that has enabled the diagnoses to be fudged, perpetuating obfuscation and chaos, and watering down of a neuroimmune illness.

And people are often misdiagnosed full stop!

I often ask myself, why is it that ME patients don't - understandably - want to be conflated with CFS patients, but CFS patients don't seem to mind at all being lumped in with ME patients? I would be delighted if graded exercise and CBT could make me better (as Simon claims), and I would  definitely not want to have a more difficult illness to treat. The ME-CFS partnership benefits no one.

I'm closing off comments here - I really have no energy or desire for further commentary, I just wanted to highlight the sad SCPG situation -  and encourage people instead to comment on the ME Association thread if they wish (I have a couple comments up). I am just glad that people with ME in Scotland have, perhaps, been saved from the mirroring of chronic fatigue centres that exist in England.

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