ME/CFS LINKS & INFO (*NICE Guideline Judicial Review High Court11/12th Feb 2009*)

Mojisola

mardatha wrote: »

No use wasting what energy & strength you've got left in fretting - cos then things round and round the mulberry bush inside your head.

You've got it exactly there!

daska - would it help to think how you'd feel about it if you knew someone else felt as ill as you do - would you expect them to do the tasks you're feeling guilty about?

daska

hmm... I know where you're coming from but... by not pushing I no longer feel as ill... so I feel guilty that I'm not doing enough :-(

conversely, I know that if I give in to the feeling guilty and push myself I will feel ill...

anyone else get their head saying "come on now, just put a bit more effort in, you can walk normally if you really want to" and actually trying????? is a b*****r, I think I'm going gently doolally, or maybe I already am and I'm just beginning to recognise my true nature :-)

maytaurus

CJ re;
'He says it must be your ME if I go with anything new'
I've got this same problem

CJ

An elderly neighbour was telling me that I have to keep on walking the dog, when I explained I had nearly collapsed in the field she said were you walking too fast or too slow. How do you explain to someone in their 80's that it was the fact I was walking at all that is the problem when she is striding out for her second walk of the day

nicenotnice4ME

Well, I'm sure you'll come back with some witty remarks but..........

Kizzy_S wrote: »

Ah, a conspiracy theorist I see!

Ah, you would say that wouldn't you!

I'm just an individual patient - not associated with any group or anything like that. I heard about the judicial review and googled it, because I'm worred that the treatment I'm getting - which is working for me - will be withdrawn if the NICE guideline gets withdrawn. This forum post was one of the things that came up in the google search. It's as simple as that.


Hmmm, sorry, not convinced. Your words come out like they've come straight from the book of useless psyches pushing their dodgy psyche based theories at the expense of the well-being of thousands of physically ill people. Nice try though.

And Tomk - this is the NICE definition of GET. It seemed pretty clear to me when I first read it that it's not about pushing yourself as far as you can go etc.

Have you not considered that what they say isn't truely what they believe. Let's face facts here, they BELIEVE that ME patients have a mental illness, a somatic condition, an hysterical illness. It's called SPIN! Luckily some of us aren't so dum and can see through what is going on.

I don't believe that anyone who has classic ME can support CBT and GET as effective and appropriate treatments for ME.

It also says:

christabell

Good morning everybody. I started to read this thread with great interest. Halfway down page 1 I had to give up.

1. I just do not have the energy to read it
2. It has just made my brain fog worse......

GET is recommended with persons suffering from Chronic Fatigue....NOT Chronic Fatigue Syndrome.

Sorry, I just can't cope with the arguing.

mardatha

what is the difference between cfs and me ? isnt it all the same thing ?
and anyway if we spend all our time in-fighing and arguing, what a monumental waste of bloody time & energy that would be eh !
The way to feel better is to focus, not on yourself or your illness, whatever hell its called LOL, but to help somebody else ! Even if its only talking and laughing to them, online or in person. Switch attention away from YOU towards THEM. It works.

daska

christabell wrote: »

Good morning everybody. I started to read this thread with great interest. Halfway down page 1 I had to give up.

1. I just do not have the energy to read it
2. It has just made my brain fog worse......

GET is recommended with persons suffering from Chronic Fatigue....NOT Chronic Fatigue Syndrome.

Sorry, I just can't cope with the arguing.

You know that, I know that, the GPs either don't know or don't want to know the difference. My employer defined me as 'distraught'.

silkkat50

maytaurus wrote: »

20 January 2009
PRESS RELEASE

A TEST FOR CHRONIC FATIGUE SYNDROME /
MYALGIC ENCEPHALOMYELITIS (CFS/ME)

Dr Myhill, one of the authors of the paper, says

Using cognitive behaviour therapy or graded
exercise to treat a patient with CFS/ME is akin to beating up the driver of the car when actually the car needs a re- conditioned engine, suitable fuel in the tank, resetting of the accelerator pedal, a new gear box or whatever.

This test invalidates the psychological model of CFS/ME and clearly establishes this illness as having a physical basis.
Sufferers of CFS/ME have known this for many years but now we have the biochemical basis to prove this.

http://www.theoneclickgroup.co.uk/documents/ME-CFS_docs/A%20TEST%20FOR%20CFS%20ME.pdf

Original Article
Chronic fatigue syndrome and mitochondrial dysfunction
available online January 15, 2009

http://www.theoneclickgroup.co.uk/documents/ME-CFS_docs/Chronic%20fatigue%20syndrome%20and%20mitochondrial%20dysfunction.pdf

I have just started reading this article and am overjoyed to read that there is now a test for M.E. I have had this for about 8 years now and am going to print this out and take it to my doctor to ask him about it. Im betting he wont have heard of it but theres always a chance... Kat xxx

mardatha

I took a report from dr myhill to my gp a few years ago.She said "oh well thats from the INTERNET isnt it " --- as if it was from the dark ages or planet zog. I hope you've got a better doctor Kat !