Structures of Misery

For at least the last three years two world class ME clinicians have been willing and ready to step in and offer a biomedical service here ; all that time we have fought , we have demonstrated overwhelming need, by conducting in-depth surveys that show that the severely affected in particular receive no service whatsoever; we have got our local MPs fighting for us we have applied overwhelming pressure.

To no avail.

All we get from the NHS is a continual fudging of the issue. So my wife lies desperately ill day after day, year after year with absolutely nothing being done to investigate her illness or to try and treat her.

We have no confidence , whatsoever, that the NHS has any intention of listening to us.

People with ME , around the world, are subject to massive Institutional Prejudice - the most insidious and difficult to rectify of all prejudices, for it is not just about the NHS. Prejudice against people with ME resides now within the very fabric of society, because of the lies that have been so successfully spread about the disease by the Medical Insurance lobby.

Harrington defines Institutional Prejudice as "Structures of Misery" - how right he is !

Institutional prejudice is the accepted way of doing things -the unthinking prescribing of CBT and GET -the ignoring of the fact that ME is biomedical, serious neurological disease and that these "rehabilitative" interventions will probably kill people with ME or render them bed-bound for decades.

It is the structural arrangements -the locking away, the sending of people with ME either to locked psychiatric wards or to behaviour modification clinics.

It is the prevailing attitudes and expectations - the ignoring of the most severely affected, the leaving them to rot for years with nothing.

Make no mistake, Institutional Prejudice is sheer , naked violence , for it is the slow but steady killing of people with ME by not meeting their needs; this is what we battle.

Our local surveys have revealed horrendous stories of institutional abuse - but I doubt that the NHS has even read them.

Stalling decisions, passing the buck, not including what we say - the tactics of suppression go on and on.

The recent Consultation Process has been a shocking eye-opener into what a cosmetic exercise "consultation" under New Labour really is. It is staggering how the truth of ME, that we patients and carers have conveyed, is being suppressed in favour of the psycho-social agenda that is at the heart of the deathmaking stance towards people with ME.

And now , this week, a deadline looms; we have been issued an ultimatum. Do we continue to co-operate with the NHS or not in the hope that we can make a difference ?

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