Your Jaw Never Gets Tired

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.