14. Angry Voices

Thirty years with ME and before now I've never joined any forums, local groups or heard any views one way or the other about any aspect of the illness. I've kept my head down and carried on - I was going to say through the ups and downs of the illness but reality is the downs and the deeper downs - until it wasn't possible to sustain it eight months ago. Since then my reading and viewing on the subject could amount to a degree. That could be an impressive string of letters after my name! MSc MECFS SEID PVFS. I admit I was ignorant before of the range of severity of symptoms and am utterly sad to the core to know now that some people have been bedridden for way too long and that there have been injustices where psychological treatments have been enforced with devastating results and that people are being denied care and benefits that would not add luxury to their lives but just supply their daily essentials. Is it any wonder that angry voices can be heard from the written words of Tweets and FB comments?

I hugely respect advocates who speak up for ME rights, journalists, science writers and psychologists who are all willing to become lone voices in their field because they recognise the injustices in the MECFS world. I've learnt a lot in recent months from them all.

Being new to tweeting, I have found some exchanges of recent days to be shocking. What appears to have started as people giving respected and knowledgable opinion on NIH's unpopular choice of Dr Walitt as research director, has descended into unpleasant, personal insults worthy of a primary 1 classroom, if it wasn't for the colourful language.

We as MECFS sufferers are outrageously, spittingly, venomously angry (I certainly am tho' I'm sure that some feel beaten down and demoralised instead) at the whole MECSF situation. Academics who support ME admit to being angry too and actually it's encouraging to see how very stirred they admit to being: 

While speaking in The Netherlands yesterday, David Tuller was reported to say - I have to be careful when speaking in public because I'm so enraged, I can be defamatory and can be sued.

That we are all angry together should stop us from taking sides - and at one point during the emotionally fired tweeting it was suggested that some UK patients were taking sides against American views. I don't take sides! And there should not be sides! I respect all involved and I undestand that people who want the same endpoint as me might not always share my exact views along the road to that destination.

Twitter and FB are very fast means of communicating and can turn an educated and respectful discussion into an online version of a public brawl. Social media must not take over from personal and private correspondences. I'm not suggesting we go back to Victorian etiquette... My Most Egregious Sir ...but that we maintain decorum in our debate.



Footnote: a special thanks to Maija Havisto who very skilfully and helpfully tweeted from the presentations after the showing of 'The Forgotten Plague' in The Netherlands yesterday. She tweeted:

Tuller (said):: The PACE authors are very aware their answers are inadequate. There's a court hearing in the UK 
in April ... !