Saturday, 27 August 2011

Comment is free, so is exaggeration (by psychiatrists)

I have a wee post up on Comment is Free, one of four on living with chronic illness. I think the thread is open for a couple of more days, you just need to register with the Guardian. Easy peasy.

Simon up to his tricks again - this time in The Spectator,
yesterday. Simon has moved away from the threats theme - he really has milked that one - and is now - incredibly - slagging off ME patients from late 80s, claiming they irritated the neurologists to whom they had been referred. We have to take Simon's word for this - and we know what a reliable witness he is. He claims that these patients were pissing off neurologists by insisting they had an illness called ME. Funnily, enough I didn't tell my neurologist I had ME, he told me! I'd never heard of it (1984). I think that's what's meant by diagnosis, Simon. In fact, my neurologist was so irritated by me, he offered me a plasma exchange and immunosuppression - which I accepted. You see I was so fucking ill I would have done anything to get better.

It truly beggars belief that an individual doctor can seek - with catastrophic results - to overturn the reality of so many patients, and the reality of other doctors and researchers. You really have to wonder what makes him tick. And the journalists who endlessly recycle his beliefs as if he had won the Nobel Prize for Medicine are no better.


joe90 kane said...

Hiya Nasim,
I thought this might be of interest.

An initiative has just been launched by the Scottish Government aimed at changing attitudes towards sexual health and blood borne viruses.
There is no mention of ME, however, despite the fact ME sufferers have a lifetime ban on donating blood, and there is a valid link between a retrovirus and ME, whose significance is as yet resolved, I would have thought would be included in such a government campaign -
The Sexual Health and Blood Borne Virus Framework 2011-2015
The Scottish Government
Riaghaltas na h-Alba
25 Aug 2011

News item here -
Scottish government launches campaign to change attitudes to HIV
Newsnet Scotland
26 Aug 2011

Given the irrational Wessely anti-ME corporate media hate campaign currently in full swing, the thoughts of the Scottish Health Minister quite apt -
We want to live in a society where attitudes towards sexual health and wellbeing, to HIV, hepatitis C and hepatitis B are supportive and non-stigmatising....
The portrayal of issues around sexual health and blood borne viruses in the media should be fair and balanced, so that we can all feel that we are equal and valued members of society in Scotland...
Through working together we can see a healthy and more inclusive Scotland where sexual relationships are based on good communication and are free from harm; where life-affecting infection can be prevented and where people living with blood borne viruses can live healthier, fulfilling lives; and where no one is stigmatised for their health status, their life choices or lifestyle.

Ministerial Foreword
Michael Matheson MSP
Minister for Public Health
The Sexual Health and Blood Borne Virus Framework 2011-2015

Take care.

Cusp said...

The Weasels on a roll !!!

nmj said...

Some really excellent comments on The Spectator thread. I love the one by Iborgia...

And we still have the Telegraph column by @MaxPemberton to look forward to, the most audacious lies yet. It went online last night but was withdrawn - but it seems it will be republished on Monday, I wonder if it will be edited - am sure Telegraph got many complaints. There is a link to the original article on XMRV-GA on Facebook.

I have hard copy, I printed it out, had a feeling it wd disappear.

"ME is now considered to have a significant psychiatric component."

"It wasn't until psychiatrists such as Prof Wessely started treating the condition as a mental illness that real progress was made."

This is of course the OPPOSITE of the truth, but that doesn't stop these dull writers - WITHOUT THE SLIGHTEST CURIOSITY ABOUT TRUTH - recycling same old, same old trash - and embellishing.

frogsquire said...

Hiya Nasim,

Great great blog about all the lies told by Wessely, thank you so much for writing such excellent rebuttals.

Regarding statements such as Daily death threats and knife attacks - one can always complain to the british Press Complaints Commission on grounds of Accuracy. After all, if these people really did get "daily death threats" - a serious criminal offence, where are all the convicted criminals?

Also how did the plasma exchange go, did it help with symptoms? I'd love to know, thanks.

nmj said...

Max Pemberton article, before it was removed, last night:

sylvieromy said...

Yes, I really enjoyed some of the comments in the Spectator. In fact they made me feel proud of the smart sharp brains saying 'No' so eloquently.

Hopefully some readers will encounter information in the comments sections that they couldn't possibly have got from the journal/newspaper itself, what with all the journos snoozing while people with ME are treated so despicably.

nmj said...

@joe @cusp @frogsquire (joe? just you both say 'hiya'...which you don't hear much these days;) @sylv - sorry, am massively wrecked from CIF and keeping up with it all. I am barely even skimming comments, I feel otherworldly, did not sleep well. I know I am repeating myself on idea what I said where anymore. The Pemberton creme de la creme really threw me last night

I am so exhausted with Wesselymania, have bored myself talking about him. I don't even want him featured on my blog anymore, but the media has been unrelenting this last month, I have to respond!

Now, I need a break from it all, the commentary, I have done what I can on here, on Twitter, on FB, and now on CIF. I am fed up being in tears every weekend - is this the 5th one? - because of the way we are being misrepresented. But I have a life - albeit fragile! - outside ME, and I need to pay it some attention. I have been consumed by the injustice of what has bn going on.

Plasma exchange did not help, but I was *extremely* ill at the time. But it was worth trying. Also was 27 yrs ago. ACTH injections helped and intravenous vitamin C (& magnesium). And rest. And time. Overdoing it always makes me worse.

sylvieromy said...

This made me chuckle out loud - from the comments board of the Times Ed Supp:

nmj said...

Hey Sylv, Thanks, I will look later! My mum called tonight to see how I was and I had a wee cry and she said, Just ignore him, he's daft. We then joked and wondered if Simon'll be in the Beano next, he hasn't been there yet, to my knowledge...

sylvieromy said...

Your comments have been great but you must be exhausted with having to articulate so much so often. Hope you get some restorative rest.
Love the sound of your mum. She's right, he's daft.

sylvieromy said...

It's the comment by Myra in the Times link I gave above that tickled me.

frogsquire said...

Hiya Nasim,

Thanks, its a shame the plasma exchange didnt help. I only wondered as the Norwegian researchers that are working with Rituximab mentioned it as a possible alternative given the benefits they have seen with Rituximab.

PS nope Joe Kane and me are different:-)

nmj said...

hey sylv, ah, i had actually seen the myra comment over at dr speedy already, very funny!

hey frogsq, i just saw the hiya yesterday & associated with joe, so out of it, you know how it is...

pls can you post the link to plasma exchange & norway?

i also had immunosupression w. plasma exchange - prednisolone and azathioprine - that actually made me more ill, i think...

but then gradually, maybe a year after, i started to improve, but i would not say it was plasma exchange, but how can we ever know really?

and of course have relapsed often since then...!

nmj said...

Current status for blood/live tissue donation ME/PVFS/CFS