Wednesday, 23 February 2011

Holding on to power - how do they do it?

The more I think about the PACE trial, the angrier I get. I am highlighting the excellent comment left by sylvieromy on Sunday's post :

I think this fight needs to be fought differently. Something as transparently skewed as the PACE trial shouldn't be able to turn back progress as easily as it has. It seems to me that there are individuals (eg. Prof Hooper and M Williams, Countess of Mar, Ian Swales) working really hard to question the abuses of the psych lobby at a high level, but they seem to be sole voices in the otherwise silent wilderness. I think these individuals need to be more strongly supported by others with power - the list of MPs who signed the EDM 778 gives a pretty good clue where some of that support might lie. The psych lobby work very effectively as a group and their influence pervades groups like NICE and MRC - groups have a strength that individuals don't. We are supported by individuals who, as magnificent as they are, can be dismissed; instead, they need to be far more vociferously and unswervingly supported by others with power so that the groundswell of concern about how PWME are treated becomes deafening and unavoidable. It also seems to me that questions about the psychs inexplicable involvement in ME have been raised many times in Parliament but to no avail. Why? Why do these questions never lead to change in the psychs' central involvement in ME? I think this is a crucial question - how is their power being maintained, no matter how faulty or disproven their approach? If their hold on power could be diminished, we would have more success. Something is maintaining their power, and those with more power and energy than we do are best placed to unpick that and set the whole arena free of their poisonous influence.

So if you have not already contacted your MP about EDM 778, please, please do so. No guarantee they will sign but it may currently be our only way of toppling these bizarrely powerful self-appointed 'experts' on our illness.

Also, just saw this from the MRC press release - Dr Declan Mulkeen, director of Research Programmes said: There is an urgent need to find ways of improving the healthcare and quality of life for patients with CFS/ME, and the PACE trial is a great example of how MRC-funded research can evaluate treatments and help to bring them to patients as quickly as possible. The MRC’s next step is to support further high quality research proposals in this area and we are committing £1.5m to encourage research that looks at the root causes of the illness.

A shame, Declan, that you hadn't spent almost five million on finding the root cause of the illness, instead of all this psychobabbleGETtwaddle. Really, how long do you all think you can get away with this infantilisation of people with ME???

And we have this little joke: For almost 100 years the Medical Research Council has improved the health of people in the UK and around the world by supporting the highest quality science. The MRC invests in world-class scientists.

Yup, my sides are splitting with laughter .

These 'world-class' scientists claim that pacing is not helpful, yet pacing is how we fucking survive. We pace because we have to, not because we think we have to. If we don't pace, we relapse and go back to being bedridden. I always have post-exertion pain and exhaustion. Always. But these 'world-class' scientists want us to push ourselves to do more and risk catastrophic relapse.


Thank you, MRC, for funding our harm. Well done indeed.

And I am late to these links but have just not been able to absorb them all. ME Association's response, Action for ME's response (I see they have crossed over from the dark side to join us), Invest in ME's (re-linking cos it is so damned good).

And as an antidote to all the lunacy, a quote from Dr Melvin Ramsay, his excellent book, published in 1986, was the first text I owned on ME. From pg 31: 'The prejudice harboured against those of us who hold the view that ME is an organically determined disease defies rational explanation.'


Nina said...

An excellent post. Thank you so much.

Anonymous said...

Yes, excellent post and comment from sylvieromy. I have be unable to blog about all this as am bogged down in DLA (the other prong of the enslaught against us), am so glad to see others are managing it so well, thank you. The £5 million still makes me baulk, especially when they admit themselves the results are not really showing much; but then the MRC say it is a great example of research? Shame on them all...

nmj said...

I love when others write calmly and creatively about the politics of ME, I think perhaps I used up my creativity in my book - now I just get so emotional and have to swear.

vw said...

Been following ur posts & uve captured it all so brilliantly. Couldn't bear to blog about it, like one of your posts said it would be like linking to medical porn, couldn't allow myself to think about it, didn't have an ounce of energy left to waste on it but im glad others are to keep this miscarriage of justice in the spotlight. So spot on about pacing, we have to, to simply survive. Which one of us hasn't tried to not pace or to push through with disastrous consequences? Not just to be left feeling "tired", but to be unable to feed or wash yourself and at worst dependent on others for your care. There is no choice in the matter, we are out of choices other than to keep up the fight.
Brilliant comment from slyvieromy

nmj said...

That's the crux, Vikki, we pace because it is what we have learned to do, it is what our bodies dictate, if we overdo it we pay the price, sometimes disastrously so - this is called common sense, coping, survival but these psych bastards twist our need for pacing into 'a psychological component'. When I think back to struggling at uni, to do one class a week, all my friends gone on to junior Honours, me feeling I would die, I should never have gone back. We pace because we are afraid??? Oh, please fuck of, all of you! If you can't/won't help us just leave us alone. Let the real scientists help us.