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” Bullies ” comment and The Lancet

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There was a bit of a row on Twitter yesterday. And reading it (which I could not help) left me feeling angry and upset.
I will probably exhaust myself writing about it here – but it is too important not to.

It involved an editor from The Lancet making some astonishing comments to ME/CFS sufferers. Then actually blocking some people on twitter – so that they could no longer interact with her and The Lancet. Or be able to read anything she was writing about them, or any other health stuff.

The comment which jumped out at me involved an accusation of bullying. Followed up by a 2nd tweet showing she had no knowledge or understanding about ME/CFS at all.
If I have understood things right, her comments were initially in response to an ME sufferer pointing out inaccuracies in a piece that had been published in The Lancet. And commenting that another publication/magazine/journal had apologised for something – I,m assuming similar inaccuracies.

The 2 actual tweets were :

1st )
” What exactly would we be apologising for?? For having a view? Ridiculous.
You,re bullies ! ”

2nd )
” Chronic Fatigue = polarised field ! We,re entitled to our view as anyone else. Its an editorial !!
Write a letter if you,re that aggrieved ! ”

Gosh.
I mean, where do you start  . . . . ?

I could write so much, but simply don,t have enough energy. So I will just need to make my comments in shortish bullet points.

1) This Lancet editor has less than 1000 followers on twitter – but The Lancet itself has 164,000 twitter followers.

2) People with ME/CFS have a very serious, debilitating condition. In some cases people who have Very Severe ME have to be tube-fed as they are too weak  even to swallow.
Even the most mildly affected often struggle with simple daily activities. That the rest of the world take for granted.

3) We are hardly in a position to be bullies, are we ?
I thought bullying was about having power and control. In this situation – who has this ?
I don,t think it is an ME sufferer or the ME community.

4) Another ME sufferer tweeted :

” Jaw dropping response to chronically ill #MEcfs patients. Many cannot write an email ”

And there were many many other upset, outraged comments too.
Not surprisingly.

5) The ” write a letter . . ” comment really upset me too.

I have a multitude of symptoms to struggle with most days – just like thousands of other sufferers. The “brain fog” symptom has been pretty severe over the last few years in particular. Making writing an email or a letter a very difficult, time consuming and energy-draining task for me a lot of the time. It is difficult physically and also mentally.
I know I have written on this blog over the last few years about how much I was struggling with this. How an email that should take maybe 20 mins would take me 4 hours. And I would pay for it by being wiped out sometimes all the rest of that day. And the next day too sometimes.
etc etc etc . . . .
(A letter can be even harder if you don,t have somebody to post if for you.)
This was the reason I had accumulated such a huge backlog of work, and my business was spiralling out of control.
ie. That I couldn,t even manage to do simple admin tasks most of the time.

And the repercussions of this for me have hit me very hard.
Voluntary Bankruptcy, and the loss of almost everything – now in my 50,s.

So I did feel enraged at a health editor from a powerful health publication making such comments.

Over and out for now.

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The Secret Files – more info

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I have reaslised that I must add some info here on how to actually obtain these files – as have had a few requests.

As I mentioned in the main post :
All the work in obtaining these files, and with as much info as possible re-instated into them, is all down to the hard work of Valerie Eliot Smith. Or @SnakeTempleGirl on Twitter.

Her Blog is at : Valerieeliotsmith@wordpress.com

Her post about these files gives the info needed to obtain them online. It is quite easy to do if a bit slow, and is free of charge.
The files aren’t secret as such anymore – but hadn’t exactly been made very public either. Plus a lot of info contained had been removed (or redacted) and it is because of Valerie’s hard work that most of this got re-instated into the files.

Hope this is of help to anyone wanting to view them.

I hope to read them very soon – but realistically will probably not be until the weekend.  I think I will need to be relaxed, calm and collected – well before I start reading anyway . . . !

The Secret CFS/ME Files

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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 even nastiness.
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. Maybe 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 just wanted to have lots of time off work.  Then give it up forever.  Then live on State Benefits. And that my GP somehow stopped me dong this. 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 gifts, 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.

The CFS is not ME row

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Before I joined Twitter I didn’t realise that there was quite a row going on over CFS and ME.

Now that I’ve been on twitter for a while – I have seen so many tweets on this subject.
Eg :
Your CFS isn’t as bad as our ME
We have ME and its more serious than your CFS
If you had ME and got better – then it wasn’t really ME in the first place. And maybe “just” CFS.

Etc Etc etc . . .

And I just want to say here – I am sick to the back teeth of all this.

My diagnosis was CFS.

  • It was what the GP called it on the day – after the other stuff had been ruled out.
  • It took a struggle of more than 12 years to finally get a diagnosis at all.
  • I have a big list of symptoms to deal with – luckily not all at the same time.
    (I listed them in an earlier post today for info.)
  • Frankly I don’t care if it is called CFS or ME. All I know is – it has been a very big problem in my life, for a very long time.
  • I also know I am not anything near as bad as many out there – who have a more severe form of CFS or ME.
  • I have met people with CFS who have been much much worse than me.
  • And I have met people with ME who were less affected and having a fuller life.
  • Some people with CFS have had loads of tests – some just a few.
  • Some with ME have had extensive tests – but also, some just a few.

I don’t think there is any “black & white” with this.

I do understand the reasoning for many people and charities wanting the name CFS scrapped – and I agree it does nothing to convey the seriousness of the condition. As people just hear the word “fatigue” and mentally dismiss it as not very important.

But I do feel that we should all be on the same side.
Whether CFS or ME.
I mean they are both bloody awful at times.

Surely ?

Any thoughts/opinions/comments very welcome.

My CFS Symptoms

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I decided to list my symptoms with CFS.   Not for fun (!) but for various reasons :

I’m sure there people out there who still assume Chronic Fatigue Syndrome just means that we get a bit tired. And get tired more often than average.
And therefore they regard it as not very serious.
But (unfortunately) there is much more to it – as you can see from this list.

It is rather a long list – and I realise that I have some symptoms now that I didn’t have eg. 6 years ago. I feel that the longer you have CFS and/or the longer you had to go before getting diagnosed – the more it may become “entrenched” or “ingrained” in you.
And all the harder to get rid of.
NB. This is just my personal opinion and not based on any medical facts.

But I also know I am very lucky in that my symptoms do fluctuate and I am not hit anything as badly as some who are classed as having severe CFS or very severe CFS. Or severe ME & very severe ME.
Plus in making this list I noticed that some symptoms I had quite badly years ago – I rarely get now, eg. IBS.  (= good)
But on the other side of the coin I have developed other new symptoms in recent years, eg. 21 – 23.  (= bad)

Anyway – here they are :

1) Flu-like exhaustion (no strength or power left)
2) Muscle weakness
3) Muscle pain (esp neck, shoulders, upper & middle back)
4) Stiff neck
5) Sore/stiff right arm and wrist
6) Headaches (more often & severe last year or so)
7) Weakness & lack of grip in right hand
8) Out of breath easy
9) Chest tightness or heaviness
10) Heart pounding/racing
(Pulse Rate always high : eg. lowest usually 80 – if feel well and am very rested. Can be much higher – eg. 141 the other day after having a shower.)
11) Blurred vision
12) Always thirsty
13) Memory bad
14) Often forget point I’m talking about mid-sentence
15) Find it hard to be concise – often go off on tangents
16) Cannot find the right words at times
17) Poor concentration – cannot focus on 1 thing at a time
18) Racing thoughts – all jumbled up/so many things that need doing/
19) Brain Fog – thoughts very slow, as if they cannot get thru,
20) Eyes get tired very easy
21) Cannot tolerate bright light some days (eg. from TV or PC screen)
22) Cannot tolerate noise some days or sudden change in noise levels (eg. different sound levels on diff TV channels)
23) Cannot tolerate moving images some days (eg. on TV)
24) Prone to getting cold easily (especially if overdue food)
25) IBS
26) Excessive sleeping some days

GPs treatment of CFS is . . .

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One of the main reasons I started up this blog was to get out some pent-up anger and emotions that have been blocked in over all the years. One area has been dealing with GPs and other health professionals.

Note :

I have removed this post now.  For a few reasons :

1) Don’t want to get struck of by my GPs surgery !
Although it would be good to find another more “CFS/ME aware” GP – I don’t have the energy or the time to do this. Not right now anyway.

2) I don’t want to cause any offence to the clinical phsycologist I was referred to for the standard CBT treatment years ago. He was very nice and easy to talk to, and certainly made me feel much better about myself at the time.  To that extent CBT did some good. On the emotional front.
But unfortunately was no practical help at all for CFS. (Which we now know is to be expected – as a phsycology-based treatment will not cure a physical condition/illness.)

3) I certainly don’t want to cause any offence to David Mickel in Elgin – who must be the best GP anybody with CFS or ME could wish to have. Having met him and knowing his sense of humour – I am pretty sure he would not be at all upset at my list of rants.  But as he is doing some GP work again now (as well as the Mickel Therapy) I decided to add this anyway.

4) Now that I have had my mini-rant and got it off my chest – I feel much better for it !

Brain Fog & Racing Thoughts

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A Wasted Friday

I am glad its Saturday.

Yesterday was a rubbish unproductive day!
Now I don’t obsessively measure my days in terms of “productiveness” in the way that I remember employers doing. But it was a write-off.
But unfortunately it hasn’t been written off in my mind yet and I’m still fretting about it.

This is why I’m adding it to my blog at this early hour on a Sat morning. An early hour for me at the weekend but my sleep pattern is “gubbed”.
Nb. I have borrowed this marvellously fitting word from a great blog called :
http://www.velo-gubbed-legs.blogspot.co.uk by Nasim Jafry. I hope you don’t mind Nasim?

Anyway the very poor summary of my work yesterday consisted of :

a) One letter which took me a ridiculous 2 hours to type ! Yes – that was it.
(I changed the content and tone of it so many times.)
b) Plus a lot of thinking and mulling over property & tenant problems – but no actual “doing”. About 3 hours spent (wasted?) here.

All the usual CFS or ME problems were present.
But I seem to be finding that the “neuro-type” symptoms have been getting worse and worse for some time now. Certainly a few years at the least. And even more so over last 12 months – really hindering me.

For the benefit of non CFS/ME sufferers : by neuro-type symptoms I mean :

Brain Fog :
Cannot think clearly, if at all. A bit like your thoughts are trying to get thru mud or treacle. And it is all so very very slow . . . Plus trying to find the right words can be hard too. Or to finish the point you are trying to make. (Or even work out what the point is . . ) Forgetting the point of what I was talking about mid-sentence is common. A total nightmare if in a phone call – but not easy either when a letter or email.

Hyper & Racing Brain :
Dozens of thoughts racing about at 100 miles an hour, conflicting thoughts, decisions, changing mind, more frantic thinking, cannot decide what best to do, or what to do 1st, or in what order, etc. Just unable to think straight or focus or concentrate.

Out of these 2 symptoms this 2nd one for me is probably the more exhausting as my brain feels as if it has run a marathon afterwards. If that makes sense?
Often I still have to later change what I have done or decided – as it can seem obvious (when rested) that I have made a bad decision. Or I have just confused everyone – including myself !

The headaches are so bad too. They come often with quite an intensity. Plus I find more and more that I cannot tolerate even looking at a PC screen for long. Or a TV screen. I seem to be getting more and more sensitive to colour, moving images on TV, sound, etc.
Which isn’t helpful at all.

Anyway by 5pm I just had to give in – and took painkillers and went to lie down in my bedroom next door to my office. With the black-out blind pulled fully down. Had planned to get up after a few hours, but ended up getting into bed and staying there for 10 hours – until 3 am.
I was just too exhausted to get up before then and my brain felt burned-out as I was still thinking about so much stuff while in bed.
But hunger finally got me up and went down to kitchen for something to eat.

Not the way I would choose to spend a Friday night.

Just realised this is another long post. (Have no idea how I manage on Twitter . . .)
And it is rather moany again. I admit I was feeling a bit sorry for myself. Although now that I’ve typed it I feel much happier.

Note To Myself :
Some Aims : do shorter posts and more fun ones !

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