Monday, 7 March 2011

The art of lying

I refuse to waste any more energy or words getting angry or upset but this is how health editors were able to report so irresponsibly on PACE. The Science Media Centre, centre of obfuscation and confusion, as far as ME is concerned.


Susannah said...

I saw that last night and felt like screaming. Not for the first time over the last few weeks (read years lol)!!

Sigh. I'm so tired of all this. I don't often let it get the better of me but I admit, the last few weeks have really got me down. I go from furious raging to emotional mess 20x a day!

nmj said...

Scroll down this link to see background on SMC.

We live in a police state - or should that be PACE state - for PWME.

Susannah said...

Yes, a police state sums up our situation pretty well. I was just thinking actually about the grip these people have on the media and the science/medical communities - it's not unlike a dictatorship.

Gawd, how these people can so idly dismiss research that is in any way contrary to their own, and make everyone else in the medical community pay attention to them and only them ... it's bizarre and frightening!

In the UK, the XMRV debate is basically over, simply because these people say it is. Ridiculous! That's not science.

sylvieromy said...

I feel the same - inside I feel such deep fear and rage.
But that's because I think we're being bullied. The socially powerful are telling the injured what to do; they are threatening to make us do things that are damaging, and they are overpowering our knowledgeable voices.

I am very keen on exploring the legal route if this happens, as a group, particularly with lawyers/barristers with a strong track record on Human Rights issues.

I also think we need to really think about how we can make the most of the support shown to us by the signatories of the EDM 778.
Bombarding them with endless info won't work, it might make them sigh and regret showing their support - but a clear, brief summary of where we're at and what we're up against and what we need and don't have, and what they can do would be a good thing to do, I think. No more than a single page (with references and incisive quotes from acknowledged and indisputable boffins included). I'm happy to work on this with anyone who wants to.

Feeling that I can't do anything effective to change or stop such heavy and unfeeling bullying is what's making me feel down, I don't know if this is the same for anyone else.

nmj said...

sylvieromy, another writer with ME is in fact in the process of drawing up such a document, a manifesto for ME, i will link as soon as it is available.

it is the scariest time for people with ME, it really is.

atrocious what these doctors are getting away with.

nmj said...

susannah, there were helicopters over edin earlier - i wondered if it was michael sharpe come to get me and force me into a CFS clinic! kidnap me, send me down to england!

Susannah said...

*Giggles* I think you're safe for a little while at least - they have patients over here whose lives they haven't quite completely destroyed yet! ;)

nmj said...

Excellent letter from MEA to SMC.

I thought of emailing them but am truly exhausted emotionally and physically from all PACE saga - and what good would an email from me do, they would just delete it. Bravo! to MEA for supporting us through this.