Home

” Bullies ” comment and The Lancet

2 Comments

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.

#ME Insults on Twitter

15 Comments

ME Insults

In my post of 6th Oct I mentioned that the poor treatment of people with CFS or ME was a scandal. And I had mentioned the ME Insults timeline on Twitter. A bit more about this now.
Twitter is marvellous for connecting with people worldwide on endless topics of interest.
Recently someone posted (tweeted) a message suggesting that people share any insults they had received since having ME or CFS. This then quickly expanded to include any comments which were – ignorant, hurtful, nasty, silly or just plain stupid. It was suggested that any replies included  #MEinsults in them – so they would be recorded in a separate timeline in Twitter.
And it just took off.
Hundreds of people posted messages in just a day or two. What started off as a way of sharing and venting frustrations about how folk had been treated became more serious as all the posts (tweets) came thru.  And were read.  Seeing so many examples in black and white of how many people had been treated poorly (by GPs and/or friends, family, relatives) was incredibly shocking. None of it will be news to many people who have had CFS or ME – especially if over a long period of time.  But seeing so many examples in writing somehow made it really hit home.
Some random examples from the #MEinsults timeline as follows :

“You have been unwell for far too long now. Its time my son found himself a new wife.”
(Has got to be one of the most cruel ones.)

“That shooter had something wrong with his head – and you have too.”
(Incredibly from a GP to his patient and referring to a gunman who had shot and killed several people in the city earlier that week.)

There is something wrong with your head.
(A variation of above but from a GP’s receptionist this time. Yes – the receptionist.)

“It doesn’t matter how bad it makes you feel – you must keep doing it.”
(My 1st GP’s view on keeping on exercising on top of working full-time while my health and symptoms got worse and worse.)

Do you not get bored in the house all day ?

We all get tired but we just have to push on.

Maybe you should try to be a bit more positive.

If you bring her back to school tomorrow then we will say no more about it.
(From a head-teacher to the mother of a severely affected pupil.)

I couldn’t be bothered with that.

I’m not the sort of person who would get that.

I don’t really believe in all that.

I don’t think he is really trying to get well.

You really shouldn’t keep him indoors so much – its not good for him.
(From a GP to the mother of a severely affected sufferer who had deteriorated to the extent he was almost bedridden.)

We don’t do home visits for fatigue here.
(A GP surgery refusing to visit a severely affected housebound sufferer.)

This is just a very brief selection.

Some thoughts :
Why is this still tolerated today ? And why do people feel it is ok to speak to sufferers like that ? And would these sort of comments would be made to people with cancer or multiple sclerosis ?

You Look Fine . . .

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.

More of those comments

Leave a comment

Oh God, the comments from people . . .

Have you no hobbies to fill your day ?

What – on top of being a Landlady and trying to keep a property portfolio (albeit a small one) afloat thru the credit crunch & recession ? And the daily struggle with household tasks? I‘m just grateful if I have any energy left over to eat my dinner or watch TV some days.

Your lucky you don’t have children – as you would just have to get on with it.

How would that work then?
Have you tried just getting on with it when you don’t have enough strength left to even stir a cup of tea ? But even more seriously – the whole issue of people with CFS or ME not managing with their children can cause much guilt or heartbreak. Just read the book Shattered by Lynn Michell – there is a heart-rending section about this in it.

Nobody can be that tired (that they can’t make a phone call)

Want to bet ?
I rely on email a lot because of my CFS – as you can take as long as you need (to think) plus stop for many breaks. You can’t do that during a phone call – the person would just hang up on you.

I know you have your issues

OMG – my “issues” – what are these then ?
From a friend I hadn’t seen for abbout 18 months. Did you maybe mean to say how are you and how are you getting on . . . ? No ? Oh well .

You must keep exercising – no matter how bad it makes you feel.

Unbelievably this was from the GP I kept going back to for years and years before I got diagnosed. She was very abrupt. In fact I’m not sure she was actually a GP – just somebody doing a very bad impersonation of one . . .

Let me know when you will be ok to go out

How will I know ? Understand this one if from people who don’t really know me – or anything about CFS. But from other people . . . A bit frustrating.

She gets a bit tired at times.

This from my husband trying to explain it to people for me – and failing dismally . . . ! A major cause of much stress and rows over the years – but that’s another story.

Just let me know in advance if you cannot make it

Again – how will I know ?

Things People Say (no legs comment)

Leave a comment

“In my day you didn’t stay off your work unless you had no legs ”.

This was a comment made by a close relative of my husband’s. It was made loudly in front me, but to another person – a neighbour if I remember right. But I tend to think it was for my benefit . . . as I was the only person in the room who was off work.
Actually the exact comment was something like : “unless you had both legs amputated” , or “unless you had broken both legs” – but you get the gist of it.
At the time I was working with Ntl but was off sick. Just to add – I only got paid “sick pay” for 2 months (full pay) and 2 months (half pay). If I had managed to hold on for 1 more month before caving in and having to go off sick, my entitlement would have been better as it improved with each year employed with the company. But “holding on” anymore just wasn‘t possible. I had got to the stage where I couldn’t hold on any more.
No choice.

This type of comment makes me upset for many reasons :

a) All the years I had spent working full-time (approx 21yrs)
b) All the studying over the years while working full time. (approx 6yrs) To get professional qualifications in insurance and financial advice & compliance work. I had been keen to learn and get on.
c) All the years I had worked in various 2nd jobs (pub jobs) at night to save up. (maybe 3 or 4 yrs)  For 3 or even 4 nights a week on top of my full-time job.

This comment implied that I was some sort of sciver and work-shy. And maybe happy to be at home while being paid ? (even though I either wasn’t paid much – or nothing at all if sick pay had ceased at the time).

It funny but this must be from around 2002/2003 – and I’m still trying to defend myself after all these years. After 10 years. It just shows how this sort of thing really takes root in your memory.

Rosa Rainbows

Rosa Rainbows ~ life with severe chronic illness 🌸☘️

Utting-Wolff Spouts

Encompassing the natural and social sciences, politics and social justice issues

A Prescription for M.E.

Insights from the intersection of patient & pharmacist

Ordinary Miracles

This blog is my story about a life forever changed by chronic illness. I hope you'll laugh and cry with me as I try to make sense of it all. Oh, and nothing I say should ever be construed as offering medical or legal advice.

Lesism

The greatest dreams are achieved with open eyes and a conscious mind...

ANNE DEAN : My journey with ME - a long one and still ongoing. But I will get there. Comments, thoughts & general rants.

Two Rooms plus Utilities

ANNE DEAN : My journey with ME - a long one and still ongoing. But I will get there. Comments, thoughts & general rants.

Dead Men Don't Snore

Learning to Live with Chronic Illness

valerieeliotsmith

Law and Health: due process and civil society