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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.

No more – it stops now

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One of the awful things about CFS and ME is the way people treat you at times. And I’m not just talking about medical professionals.
Unfortunately people who are friends and family can treat us quite poorly at times.

I have used up vast amounts of energy over the years trying to cope with this. Trying to make allowances for the way other people behave.

I have exhausted myself trying to :

– To rationalise it.
– To understand it.
– To excuse it.
– Making allowances for it.
– Agonising over it.
– Trying not to upset others by speaking my mind.
– Apologising for myself.
– Avoiding any awkwardness involved in  asking people ” Why ? ” .
– Putting others’ feelings 1st.

Basically accepting treatment/comments from people that would be unacceptable to them.

But no more.

Two nights ago I had a conversation with my husband about this. As something had been making me feel upset.
We have had this type of conversation a  100 times over the years. And it is pointless.
He loves me, but just doesn’t “get” why I feel so upset at this stuff.
And this is despite reading a book I had begged him to read during the time we had to live apart during 2012.

The book was called Shattered by Lynn Michell. 
It covers all the hidden misery of CFS and ME.  The emotionally painful dealings with friends and family (as well as doctors).

Yesterday I turned to Twitter to vent my emotions. And had a bit of a rant. This was very theraputic. And it lifted my spirits no end.

Within a 2 hour period I got lots of lovely messages. All supportive, encouraging, empathatic, understanding.
It restored my faith in human nature no end.
PS.  I’m sorry I didn’t manage to reply to any of the messages. I was just too exhausted.

But it made me realise that the way people behave – is the way they choose to behave.
Regardless of whether they don’t really  understand what CFS or ME is like – it makes no difference.

People still know the difference between being nice, or not.

So I am not going to waste any more of my energy excusing crap behaviour. My energy is too valuable (and too limited just now) for this stuff.

It also occurred to me yesterday that many people have a deep predjudice about CFS and ME.  Maybe not realising it of course.
But it is viewed very negatively.

### From today I will no longer allow this to be my problem ###

Big words . . . .

And of course it will be easier said than done.
But it can’t be any harder than accepting poor treatment.

Nearly every CFS or ME sufferer will know what I mean.
To everyone else – just ask yourself how you would want people to treat you. Or more importantly – not treat you.

#ME Insults on Twitter

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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 – maybe even over a thousand 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 . . .

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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.  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

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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 (positive thinking & housework)

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” She keeps her house immaculate – but then she has such a positive attitude “

This one also merits a post of its own.

A friend visiting me at home told me about a friend (of hers) who was sadly very ill with cancer.

My friend has know me for over 30 years – therefore has known me before CFS and all the time I have had it. And she knows that I regularly struggle with doing some physical things.
Like housework and cleaning for instance.
Which can often defeat me (and cause me to stress over it). Or I actually manage to do some – but often pay the price afterwards with a bad relapse or “crash” and may need a day or so in bed to recover. Or at best a long rest – and waste half a day while energy is restored.

When my energy is very limited I often have to choose between essentials. Therefore things like managing to have food in the house, and make meals just has to take a higher priority. Or laundry. Or even personal cleaning/hygiene.
I mean what is the point of a clean house if I am a mess myself, with no clean clothes to wear ? And hair an unwashed straggly mess.
And food – well it’s an essential for life. We cannot do without it.
Also my work – which can quickly spiral out of control when I fail to keep on top of it. And is a constant challenge for me.

But a dust-free room, clean kitchen floor, hoovered carpets etc – just cannot be as high up the priority list when you have to choose. Everybody would agree with that – surely ?

All these things my friend knows – as I have explained over and over throughout the years.
So although I tried not to – I couldn’t help but feel upset at her comment. As it kind of implied that if only I was to change my attitude in some way then I too could have a lovely clean house !

With regard to her friend who was managing to maintain a spotless house despite her awful health predicament – I had to admit I was curious.
I was imaging some sort of mind over matter positive thinking. You know the sort of thing you read about where a person somehow manages to summon up a huge amount of mental energy and can make themselves do amazing things.  Like walk over red-hot coals in bare feet.

Finally I just had to blurt out “but how does she do it ?”
The answer was not what I expected.
It was : She pays her sister to clean her house for her.

Now there is absolutely nothing at all wrong with this as it was obviously an arrangement that suited both of them.  And if I had the money to spare then I would have a cleaner too for sure. But the way that my friend was quoting it to me as an example of “positive thinking” . . .

I think maybe because of the look on my face my friend went on to explain further that the sister  “hadn’t done very well for herself in life” and that her ill friend was actually helping her out by letting her clean her house and paying her for it.

For once I was left speechless . . . .

Footnote :

I decided to add this incase I have caused any offence or distress to any cancer sufferers out there with this post ? As this was totally not my intention.  The employment of a cleaner is something to be recommended 100% if you have the spare funds to pay for it.  The point of my post was the comment made by my friend – and wasn’t meant to sound critical of the person with the cancer in any way at all.

Things People Say (just don’t do it)

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” If you‘re too tired you just don’t do it – it doesn’t sound like rocket science “

This was a rather impatient comment from a friend.
I was trying to explain to her how difficult it can be to do or complete things with CFS. Not because I wanted to bore her or to get sympathy. I just wanted her to understand why I can’t always manage to do things at times, or need to stop for rests. And crucially why I have often had to cancel arrangements with her after doing too much the day before.

But she couldn’t get this – and I was trying to explain how it is often impossible to tell in advance with CFS what is “too much” until after. Sometimes hours later or more often the next day. Either way too late. And how CFS fluctuates so much therefore can make it very hard (if not impossible) to tell what is going to be “too much” on any particular day.

But I got the impression she was bored and impatient. Hence this comment.
Re the “you just don’t do it . . . “ – gosh, where do I start !

I mean how do you “just not do it” when :

a) In middle of trying to cook dinner : do you just leave it to burn and go to lie down ? Or remove from heat and abandon it half-cooked to just throw out later ? Or are you more likely to push yourself on to try to finish it ? (So you have something to eat !)

b) Driving on a busy road or even motorway – you can’t normally just stop when you feel yourself getting weak . Usually have to keep going on for a bit at least. I mean you want to try to get home.

c) In middle of having a shower : do you just turn off the water and get out to rest maybe half-washed with shampoo still in hair ? Or do you keep under the running water but just stand and rest arms etc for a while ? In which case the water will probably run cold (as not an electric shower).

d) In the middle of a long difficult phone call perhaps with an Indian call-centre : do you just terminate the call mid-conversation and hang up ? Knowing that you will still have to make that call and start all over again. Or do you push on to attempt to complete the issue you have called about ?

e) When an online grocery shopping is delivered : if too tired/weak to put it away – do you just leave it all out in the kitchen ? In which case the frozen stuff will defrost and the fresh stuff may go off if its a hot day. Or do you try to push on to get it all packed away even though energy is poor ?

These are just a tiny amount of examples of day to day difficulties. I can only do my best – but do often end up with that energy “crash” a few hours later or next day. It just isn’t easy – even after all the years I have had CFS.
I just sometimes wish that people would be a bit more patient and try to understand.

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