All the hooey

Lying in bed, late last night, Linda sobbing in too much pain, in far too many parts of her body  to cope with, I reflected upon that MEA Survey, with my blood boiling.

This is  serious suffering going on here, and there is only me and my arms and my not knowing what to say after 17 years of relentless and deteriorating hell. And now   the MEA have put  out a   document,   entitled   "Managing my ME" - a title that immediately made my toes cringe,  a document  which eases itself down, with a contented sigh, so smoothly, so comfortably into the NICE / Psychiatric paradigm, give or take one or two tweaks, don't you know.

You have to wonder, does anyone else inhabit the world of ME that I do ? Inhabitants of ME-land don't mention the "M" word at all, they are far too busy on their lonely quest, turning over rocks in the baking, blinding   heat, trying to unearth some, any kind , of a test or a treatment; anything,  that might help. God knows.

They are far too tired , their backs are whipped,  are  aching,   from writing and writing and writing and meeting and meeting and meeting , with their local Health Authorities. Dealing and dealing and dealing, over and over again,  with all the  hooey;   the kind of hooey, at least that's my opinion,  that the MEA have just put out.

The hardest thing to deal with here in ME-land ? This pretense of doing something for you- be it advocacy, service delivery,  needs assessment, leadership, when in fact your AFME's your MEA's , your PCT's are offering you zero, zilch, zip, zippo, zot...nothing ! 

Nothing because it's not relevant to us in  ME-land, it's not relevant to this disease that I am having to deal,as a carer,  with every second of every year, year on end. It's certainly nothing to do with the price of fish, however it's a lot to do with maintaining  the status quo. 

I can barely bare to sit and type this without recourse to profanities :  the STATUS QUO !!!  The demented, twisted, inhuman, manipulating, hopelessly corrupted, evil that has left my Linda crying in bed last night, suffering without hope of a cure or treatment for 17 long years and has driven me deep into the gut-churning, screamingly awful, maddening desert I find myself stranded  and sinking in.

How the hell am I going to get Linda and myself out of here ? 

It's open and shut . The only way out is through money, power and influence. None of which I have. So, okay, I've written the next Harry Potter (I have - and it's out  with prospective publishers now)... it's back to the wall here and I'm doing what I can; but hey I'm beginning to run out of ideas here.....

The ones who DO  have the money, the power, the influence, the AfME's , the MEA's ; can you possibly imagine a world where they were representing people with ME ?

Me neither .

Comments

  1. Greg, I couldn't agree more with what you are saying. The right questions are never asked. Not by patients orgs, not by doctors, and definitely not by the media and politicians.

    I feel your anger, frustration and desperation because they are mine, too.

    I'm not going to try and end this comment on a positive note like so many do when they talk about M.E.. But I do want to wish the best to you and Linda, I sincerely hope that one day we will be allowed to watch things change. We need help, we need money and we need a cure. What we don't need is "sympathetic listening" and telling us there are already plenty of therapies, because there aren't! We tried all of them and we are still horribly ill.

    Sincerely,
    Nina

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