Saturday, 8 August 2015

What is ENOUGH?

Today is Severe ME remembrance day when we think of those too ill to leave their darkened, and eerily quietened, rooms.

Today once more, patients, families, carers and friends will try to alert the world and the medical establishment to the travesty of the "living dead" - those who are most severely ill and largely forgotten.

Last year I wrote a blog post called "Living Death Disease" to try to highlight this incredibly mis-represented and misunderstood situation.

A quick look on social media today under the tag #SevereME will bring up scores of blogs, videos, tweets, links, and messages. (Please look, like and share as much as you feel able.)

Yet advocates have been campaigning for change for decades.  The history of how some ME patients have been treated by the establishment makes for harrowing reading.

A short quote from MAGICAL MEDICINE:HOW TO MAKE A DISEASE DISAPPEAR (Hooper 2010) illustrates a pervasive attitude:

"In 1992, the Wessely School gave directions that in ME/CFS, the first duty of the doctor is to avoid legitimisation of symptoms; in 1994, ME was described as merely “a belief”; in 1996 recommendations were made that no investigations should be performed to confirm the diagnosis and in 1999 patients with ME/CFS were referred to as “the undeserving sick”. "

So how can we do ENOUGH to tip the balance in our direction? 

What do we need to do, so that the rest of the world will look on in horror and shout "ENOUGH!" on our behalf?

How can we persuade ordinary doctors, who receive inadequate training on how to cope with ME, to champion our cause?

I don't have ready answers.  

Physically, I may not be up for placard waving or protest marching but I can blog, I can use social media, and I can work with others to push for change in my own area.

I am proud to be a trustee for Hope 4 ME & Fibro Northern Ireland  and I will continue to campaign for change in whatever way I can.

Please join me and others, in highlighting this situation - because surely, by now, we've all HAD ENOUGH!!

It's time for change!

Severe ME must be validated as the devastating physiological illness that it is.  Substantial research funding must be secured to investigate its etiology, and the psychiatric premise for ME treatment must be fully discredited and discarded.

What the medical authorities currently regard as enough, is simply NOT enough!


PS Yesterday a fellow blogger asked me if I was going to publish something today.  I replied that I was in a bit of a dip, and wasn't sure that I would.  Yet last night when I read what he had written, I knew I had to say something!

Please read this piece by Henry Anderson:
A blog about my cousin for Severe M.E Day – 8th August 2015

Edit to add:
Two more powerful stories illustrating exactly why we need change:
Limited Capability: Severe ME Day 2015
Living with Severe ME and Random Things: Severe ME Awareness #SevereME


  1. When some wears a plaster cast or uses a crutch people have sympathy. When the illness is not visible, people refuse to see it or understand. CFS is soul destroying.

    1. Yes agreed. It is easy for those who don't see the aftermath of a small exertion, to confuse sensible pacing with laziness! And those who can't leave the house are simply out of sight, out of mind. :(

  2. I cannot get ANY site on the web to let me download the magical medicine article - possibly because it is too big?

    It's driving me nuts - I'd like to read where your excerpt came from.

    Do you know of a place to read it online? Or a place to get it as an email attachment?

    Thanks. Alicia

    PS The few words you quoted were chilling.

    1. Found it - all 12 copies! My stupid Firefox had set the preferences to download to a place I used once months ago.

      I kept downloading, the system kept putting the pdf where it though I wanted it. Sigh. Computers. Can't live with them, can't live without them.