Comments on: How do we support our ME sufferers?

By: Leslie

Leslie — Sat, 28 Jun 2008 23:11:23 +0000

My pastor’s wife (& my friend, I should add) has had this for years and as a result, they were not able to have children. She is so intelligent, with an MA in English, but has to be so careful with what she does. She also has food allergies that they feel is part of it. Thanks for bringing this to light – it is a disease that is worldwide.

By: Welshcakes Limoncello

Welshcakes Limoncello — Sat, 28 Jun 2008 16:12:21 +0000

Well done for highlighting this, Ellee. I have 2 close friends who are sufferers so know something of how this disease can devastate a life.

By: jailhouselawyer

jailhouselawyer — Thu, 26 Jun 2008 21:30:30 +0000

I know 3 people who have ME. The Professor of Philosophy was in hospital last week after her partner was concerned that she had had a turn.

This in turn stressed him out. And when he came to see me, to bring me up to scratch and help me out financially, he got upset by what he called my obsession with blogs and the McCann case. I misread the situation and my empathy did not appear to show through, it’s down to my AS, and he ended up storming out.

When I rang him tonight to report this post on ME, he said he was a bit short with me the other night ( the Great Yorkshire Understatement), I said “yes, never mind that now…”.

To answer your title question, we blog about it like you have done. Far more important than the Usmanov campaign. Spread the word. Collate the responses.

By: CherryPie

CherryPie — Thu, 26 Jun 2008 20:57:44 +0000

I very close friend of mine got struck down with this disease, it is an awful thing. I am so glad that over time she was able to recover.

I think the problem is that originally the medics didn’t understand it and therefore thought it wasn’t a medical condition but all in the mind. That thought seems to have lingered on even though it is a recognised physical illness now.

By: Shirl the Girl

Shirl the Girl — Thu, 26 Jun 2008 18:11:51 +0000

This is an interesting case. ME began with bad press that often ignored the reality of the illness. It is even used as a throwaway remark by some Neuros I have met – oh, MS? No, probably ME – as if that is meant to be good news and send you smiling on your way from the consultation. (PS They were both wrong in my case).

By: Ian Lidster

Ian Lidster — Thu, 26 Jun 2008 17:52:25 +0000

A genuinely tragic situation for the sufferer. I know a couple of formerly dynamic people whose lives have been ruined by ME.
And thank you, dear, for your sympathetic comments on my blog. They were much appreciated.

By: james

james — Thu, 26 Jun 2008 08:46:34 +0000

These are the things to one side of most people’s daily reality and they do not get the attantion and support they deserve. Well done, Ellee.

By: Flowerpot

Flowerpot — Thu, 26 Jun 2008 08:09:59 +0000

I know one writer who suffered from it and finally got over it but it took years. What a waste of life while these people suffer without help. Makes me mad….

By: Jennyta

Jennyta — Thu, 26 Jun 2008 07:16:23 +0000

NICE is running true to form, once again. Exercise is the worst thing for ME, I am told. Counselling would possibly be helpful as a support therapy but not CBT. What planet are they living on?

By: Ellee

Ellee — Thu, 26 Jun 2008 06:31:09 +0000

Kevin, I also know of a teenager who was struck down by this debilitating disease.

JMB, you are quite right. In the case of the women I know, I would say it has taken about eight years for them to turn the corner.