The Secret ME/CFS Files
File No : FD/23/4553 from the Medical Research Council (MRC)
This week or weekend I am planning to settle down and read this file. Probably with a cup of tea – although given the contents a large gin & tonic might be better.
To explain – this will be no pleasant read and have no doubt it will make me very angry. But there is no question at all that I am going to read it.
All 158 pages of it.
This is a file from the Medical Research Council (MRC) on CFS/ME. It had been filed away in the UK National Archives in 1997. And wasn’t due to be released until 2071.
The contents seemingly go back as far as 20 years.
NB. The lady who has obviously done a massive amount of work bringing this to the public attention is :
Valerie Eliot Smith ( @SnakeTempleGirl on Twitter )
She is a long-term sufferer of ME/CFS and describes herself in her twitter profile as an “angry bird”. And how well I understand that anger. It is the Number 1 reason I started this Blog.
Why am I angry ?
1) Because of the poor treatment I have had from GPs since maybe the late 1980s. So far back it is hard to be sure now. Not angry at the fact that I wasn’t cured – but more the way I have been treated all these years. With contempt, bullying, disbelief (obvious but unspoken), no respect, disinterest, irritation, silence, blank looks, etc etc etc.
Left to rot would basically sum it up.
Take anti-depressants and get on with it.
NB. I should add here that 2 of the 3 GPs I have seen over the years I’m sure are nice people & good GPs when it comes to other problems/conditions – ie. not CFS or ME related. (In fact they have been quite nice with a few other things over the years.) The contempt and bullying I mention was from the 1st one and goes back a long time now.
2) Secondly because of the way people with CFS or ME are often treated by the general public.
This can include employers, work colleagues, acquaintances, relatives – and unfortunately sometimes even friends and family. We are desperate to talk about it to people important to us – not because we want sympathy or attention. But because we want them to understand how bad this condition/illness can be and how much it limits us at times. All we want is understanding and hopefully some allowances made for us – so that the friendship can continue even when we are limited.
But sadly, sufferers sometimes experience boredom, impatience, no empathy or understanding at all, intolerance, disbelief and unpleasantness.
Plus many marriages have broken down, with partners leaving. I read somewhere it was estimated 50% of marriages break down when one partner has CFS or ME. I wasn’t shocked – only surprised it wasn’t more. The stress and strain can be terrible, intolerable even, on both people. Especially over the long term.
My own marriage almost didn’t survive and came very close to breaking down in January this year. After being together since 1991. Many reasons. But I would say most caused by me having CFS such a long time. Directly and indirectly.
The sheer stress of everything over so many years, without any help (for either of us) almost finished us off. We are still struggling. Not so much with our marriage but with almost everything else in our life ! It has been very hard indeed the last few years. But, after a 9 month spell apart, we are now living together again.
NB. How does this relate to these medical files you may be wondering ?
Well although there is really no excuse for people treating us poorly – I am sure the attitude of the medical profession ( ie. the experts) has not helped things one bit.
3) The sheer injustice of it all.
Being made to feel I was lazy or work-shy by the medical profession. And sometimes others. Always indirectly of course. Never stated outright – therefore denying me the opportunity to challenge it and put the record straight.
I worked full-time from 1977 until 1999, then part-time 1999 – 2003. And studied hard to get professional qualifications in Insurance and in Financial Services : A.C.I.I and M.L.I.A (Dip) and FPC (Financial Planning Certificate).
In the early 1980’s I worked in numerous 2nd jobs in pubs 3 or 4 nights a week – on top of my full-time job. This was to save up the deposit to buy my 1st flat (and cover all the costs, furniture, fees, etc). I was in my early 20s at the time and most of my friends were enjoying going out, socialising, etc. But I wanted to do this and just focussed on it. It wasn’t easy and I did it over a period of a few years. Until around 1986.
Then to be treated as lazy, or basically “worthless” by the medical profession – how could I fail to be angry ?
The lack of almost any medical help, or any type of help. No “Care Pathways” or “Management Guidance” offered to me at all. And being told that I wouldn’t get any financial help from the State as I would not qualify with CFS. My GP did not help me at all. In fact I think the only time my previous GP agreed to sign me off work (for 3 or 4 weeks) was when both my Mum and Dad were seriously ill in hospital at the same time. My Dad was in hospital for a month and had a lot of health problems. Then my Mum had a heart attack at the same time – and ended in in the same hospital (Glasgow Royal Infirmary) for 2 weeks.
So I maybe shouldn’t complain too much . . . Allowed time off work for 4 weeks. This was maybe 1987.
In late 2002/03 my GP then did sign me off work, and eventually diagnosed my CFS. My Mum was terminally ill at that time, and I was struggling very much even before that.
But in order to get this (signed off work I mean for a few weeks ) – my husband actually had to come to the Doctors Surgery with me. To help me talk to her.
NB. I want to make 2 important points here :
a) I am not angry because I wanted to have lots of time off work. Then give it up forever and live on State Benefits! But it would have helped me so much if I had been treated seriously and shown some respect by GPs. Because I am certain that if people are forced into struggling on for a long period of years (as I was) then the illness/condition becomes more ingrained. And so much more difficult to get rid of.
b) With regard to state financial help – I wouldn’t have wanted, asked or chosen to live on benefits. But I fully understand that many have to do so because they have no choice, and are own their own. But to have received some financial help would have been good. I mean people get child benefit (previously totally un-means tested). And having children is a choice – having CFS or ME isn’t.
4) Now a Landlady – since 2004.
This is hard too and is eating up most of my life just now. Because my CFS has got worse over the last few years. So makes it harder than it should be.
I “got into Property” in 2004 as was no longer employable. It had to be something where I wasn’t answerable to anyone and could do my own hours.
I took a big risk (financially) to start this up. I didn’t have any money other than some savings. Never had any inheritances, or lottery wins.
I just borrowed and kept on borrowing . . . ! Including re-mortgaging the house – with my husband’s agreement of course.
It was designed to be long-term – and will be very long-term now. Keeping it all afloat throughout the last few years (since the credit crunch and recession started in 2008) must be one of the hardest things I have ever done.
Unlike GPs and other medical people I have no guaranteed salary at the end of each month. Sometimes a loss. And I just have to work the hours it takes.
NB. My point here is not meant to be “Oh woe is me” or “I never knew it would be this hard” . . . etc etc. It is simply that I am working very hard – but am still treated dismissively at my GP surgery. It seems that no matter what you do, or say, if you have CFS or ME noted on your files – you are deemed not worth bothering with.
But : why do I want to read this file, if it is going to make me even more angry ?
Because I have to.
I have to see the contents in black and white for myself.
I feel it will confirm I have not been over-sensitive all these years. In feeling I have been badly treated by people who are highly paid professionals. Who I had turned to and had relied upon to help me.
And it will prove that I have not been alone. And have a very justifiable right to be angry.
Your Jaw Never Gets Tired 
You Look Fine . . .
September 22, 2012
Anne Uncategorized brain fog, comments, disbelief, ignorance, invisible illness, kindness, things People Say 1 Comment
You look fine or You look well or You Don’t Look Ill
Thought I would give this one a post of its own.
We have all had this comment.
In fact – not just us with CFS or ME, but many others who have what’s termed an invisible illness.
There are 3 different ways this comment is made in my experience :
1) As a genuine compliment.
Made from somebody who really means well or cares.
And in this case it is very welcome. As it is usually obvious that the person is saying it with genuine affection and all good intentions.
And it is a nice thing.
2) It is said in a doubtful manner.
This can be a difficult one – as its not always very clear how it is meant. It usually doesn’t “feel” like a compliment. Or as though it was said in encouragement.
You are left with the feeling that the person is questioning the validity of your condition – CFS or ME.
But impossible to respond to – because of the way it is said.
3) This one is said more aggressively.
And you are left in no doubt that the person either thinks there is nothing wrong with you. Or that you are exaggerating things for some reason.
In my experience this has always been impossible for me to respond too also. Usually because of being taken aback by the manner of the person making the comment. But also some of the typical CFS or ME symptoms seem to kick in – like not being able to find the right words when needed (brain fog. ) And I have always been left unable to make any sensible and non-angry response.
Several hours later – I will think “Oh I wish I had said . . . . “ .
But the moment has passed.