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

DownButNotOut_2

Hi all

I've had M.E for 9 years and wasn't diagnosed for the first two years as I was told by doctors it was 'all in my head'.

I've tried lots of things like many of you and none have worked for me so far. I've asked for the vitamin b12 injections as recommended by Dr Myhill but my GP is unhappy to give them to me with the recommended dose and will only agree to a lower dose every fortnight. So I don't hold out much hope for that.

The good thing is my current GP, who is only on secondment so will be leaving this year, has been great at trying to get me more help. I'm awaiting a visit to an M.E specialist - I've never seen one of these throughout my illness so it will be great to finally get some feedback.

Earlier in this thread (and I haven't read all of it as it was a bit full on for my foggy head sorry), it mentioned the Lightening Process. My Mum has always been really keen to put me on this and 'get me sorted'. She read about Esther Rantzen's daughter a year or so ago and has been on at me about it since. I personally don't agree with the way it works - very similar to CBT by the sounds of it and was told it would only work if my mind is open to it. I've never believed this illness is a problem with my mind so I don't see how a couple of days of trying to tell myself to think differently will affect what my body wants to do (or doesn't want to do as is usually the case!). It's refreshing to read others who are also dubious of the LP and it's helpful to make my Mum realise it will be a waste of £700 of her money.

I hope everyone is managing as best they can to cope ok today x

mardatha

First law of mine is if it costs money then forget it. if there was a cure that worked then we would all know about it and we don't. So any "cures" that cost are just a waste of time, in my opinion anyway.
I asked for B12 as well, because myhusband has pernicious anaemia and he feels great after his B12 - but the gp measured my levels and they were fine so she said no. Another slammed door eh ! Plod onwards and upwards..:D

ivyleaf

I have just read on the ME Association that the judge who was doing the judicial review has upheld the NICE guidelines :mad: !

mardatha

Then Let Us Pray Very Hard That He Gets M.E.
And Soon.
Sod !

daska

or that he'll get a huge number of comorbid but totally unrelated disabling symptoms demonstrating that he is psychologically unfit to judge...

Trasthmatic

Nice attitude there. Someone doesnt agree with you, you [STRIKE]hope[/STRIKE] pray they get a disease. I guess having ME dont stop you been mean, vindictive or petty.

mardatha

I have a sense of humour too. You should try it. Sometime.

CJ

I suppose if we were being kind we would hope that none of his children or family get ME that would be much harder for him to watch or live with

Millburn_farm

lets be honest; we all have people; family, close friends who aren't around anymore because they don't "see" the ME

I have a sister who so chooses to believe that my being on benefits (incap and DLA higher rate mobilty) is a "career" choice :rolleyes: ermmmm poor choice 17 yrs and still only 1/3 of the old income


Most people who have no close contact with people with ME; do believe the "party"line; and that isn't just about us; it includes OCDC people and depression and and etc, and we scare the f****ng pants off them; illness with no easy avoidance, no way to be healthly and escape; no "special" not to get it diet


we have to remember; we will get recongnition, and all the crap we give out doesn't help; better ways to expend the energy

ivyleaf

Unfortunately I don't know how to do "links", but on the ME Association website there's a link to an online petition asking that the DOH send a health minister, someone from the MRC, and the Chief Medical Officer, to this year's "Invest in ME" conference on 29th May, where it will be demonstrated that physical biomarkers for ME are already there! Please, please sign up - I know some people say that online petitions are a waste of time, but surely the more people who sign it the better.