ME Association Petition

ME Association Petition

The ME Association is calling on NICE to remove all references to M.E./CFS from the new guideline on suspected neurological conditions, and to claims that M.E./CFS is a 'functional' disorder.

In the new guidelines NICE it is claimed that M.E./CFS is a functional disorder and that functional disorders are likely driven by emotion, 'which may mimic physical disease'. Once again, everything is put down to being in the mind of patients and not a physical disease.

The petition closes on Wednesday 11th October so if you want to make your views known, please sign the petition.

To sign the petition please go here: change.org/p/sir-andrew-dil...

change.org/p/sir-andrew-dil...

2 Replies

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  • Signed and shared.

  • I despair.

    After all of the evidence that ME/CFS is a physical disease first and foremost (with underlying pathologies relating to mitochondrial dysfunction, sub-optimal thyroid, unexplained low nutritional status, etc) I really think that for NICE to retreat by regarding it as what can only be described as modern-day hysteria is appalling.

    I have had a diagnosis of ME since 1989. Almost overnight I went from being an energetic, life-loving young woman with loads of drive (I was about to sign up to jazz dance classes, I was loving my MA studies and I'd just fallen in love) to someone who couldn't function for 16 hours a day.

    Does that sound like someone who was depressed or driven by emotion 'mimic[ing] physical disease'?

    No.

    For months I could hardly do anything. To merely put water into a kettle hurt the muscles in my upper arms and if I as much as vacuumed the postage-size carpet in the living room I had to lie down for at least an hour to recover. I woke up every morning feeling worse than when I went to bed and the searing pain in my arms and thighs felt as though I'd been running a marathon overnight.

    What *does* cause depression is having your life taken away from underneath you and the indignity of having to claim incapacity benefit. With no prospect for the foreseeable future of being able to work/engage in previously enjoyable activities/exercise/read/have proper conversations because all of these things put too much strain on energy levels has a massive emotional impact. Especially on someone like me squeezed the last ounce out of life.

    What *does* cause depression is the fact that those who you thought were your friends abandon you and those you hardly know give you the best support.

    What *does* cause depression is people with no knowledge of the illness whatsoever (and some with no personal knowledge of you either) telling you that its your lifestyle/that its psychological/that its psychosomatic/that you're attention-seeking - believe me I'm the last person who draws attention to herself.

    What *does* cause depression is medics dismissing you because you don't fit into their neat boxes that they so like to tick.

    Have I ever been asked by a doctor about what I was like before the illness struck, how my illness began and what its impact was?

    No.

    Has any doctor talked with those who knew me 'before' and 'after'.

    No.

    They just seem to hide behind their so-called worked-out theories and put people into convenient categories, put all the blame on them and forget about them. That way that they don't have to put any effort or money into really finding out what's going on.

    Sorry for the rant - I'm so livid by this.

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