The architects of the PACE trial appear to be very confused - they cannot tell the difference between neuroimmune illness and psychiatric illness. Or maybe they are just evil. I am not even going to link to the published research, it would be like linking to medical porn, I am so angry and disgusted, but really why should we be surprised at their orgiastic cries of CBT and GET? I am equally disgusted at the Guardian for publishing these results as if they had even a grain of credibility. Okay, we can't educate the psychiatrists - denial of neuroimmune ME is their goal and nothing will shift them. And make no mistake, this is about patient neglect, clinical apartheid, deliberate obfuscation. These psychiatrists have made it their career to deny that ME is neurological, they think they can force us into recovery because CBT and GET are cheap to deliver. I wish we could ignore them, treat them as the mad cartoon professors they are - with their treacherous fingers on the CBT/GET button - but incomprehensibly and shockingly the 'expertise' of these vandals still ladders its way down to NICE, the NHS and the DWP. We have to keep fighting them, we have to. However, I am quite honestly, all out of fight at this time and I can't afford to be this stressed, it was undoubtedly the stress of my book being published that led to my developing uveitis and I try to avoid stress as much as possible now. I dread a recurrence of uveitis and I simply can't allow these PACE bastards to get to me. And we can't stand in our city squares for eighteen days - at least, not without CBT and GET miracle cures!!! - but we can try and educate health editors, make them see the truth behind the PACE trial. So, please tweet @TheLancet, @sarahboseley (The Guardian: Study finds therapy and exercise best for ME) and @martinbeckford (The Telegraph: Exercise and therapy can help ME sufferers, study claims), @bbc, and any other editor who published this nonsense. Try and make them see sense and maybe they will think twice about publishing such harmful research on our illness in future. (I don't see a Twitter account for the Indy health editor Jeremy Laurance (Got ME? Just get out and exercise, say scientists) - if anyone knows, please tell me.) Maybe I'm shooting the messenger here, but all thanks to such irresponsible, sensationalist media, the concept of ME as a psycho-social illness is now lodged in the public consciousness again. So tweet these editors the link to the letters Professor Hooper wrote to the MRC. Or tweet them one of the many articles on the flaws of this farcical, dangerous PACE research that didn't actually fucking use patients with neurological ME (brilliant statement from Invest in ME linked above). Education, education, education!
14 comments:
yep...and it cost £5 million of tax payers money ! Shame on the Guardian and Indie too
Yes, we expect idiocy and wasted research opportunities from the Wesselyites, but I am truly appalled by the ignorance displayed by these health editors, a tiny bit of googling would have revealed the true nature of the PACE trial, but they just could not resist the lure of a sensational headline, & fuck all of us who actually live with M.E. I saw there were, unsurprisingly, over 200 comments in reply to the Guardian article, though I could not face reading any of them - & I doubt any of the powers that be will take them on board. I no longer know how we are supposed to fight this battle, I really don't.
i'm the same with the simply not being able to afford any more stress right now...but ignoring this is far from easy (if not impossible). even made the weekend papers here in australia - along the lines of 'exercise will cure CFS' as i understand it - which is disturbing. are they just waiting until they have destroyed us all and no-one has any fight left? hard to keep on keeping on even without this rubbish (being kind with my wording).
well I read some of the Guardian comments and some were from people who had taken part in the research...mainly saying how badly is was conducted and how their lack of success with the CBT and GET was ignored. In other words if you were in the group of people who were taking part and didnt offer up the desired results you were factored out. Quelle surprise !
Does make you feel so exasperated and helpless really ... like we're all being taken for fools: PWME and ordinary people too, because if someone healthy gets M.E. and has read this guff they will truly believe that all they have to do is exercise and 'push on' and they'll get better.
Never mind...there's always the old LP or then again Esther R now says we've probably all got coeliacs so stop the bread and buns and that'll do the trick.
Bitter ? Moi ? :O)
I know what you mean about stress. I was reading a blog that posted all the headlines from articles about the results, line after line of endless variations on "Exercise is Cure for CFS" and my heart rate just skyrocketed.
I still don't know that much about how the trial was conducted, I've only read the criticism. The biggest one seems to be the exclusion of people from the study who had neurological symptoms. So is it that they can tell the difference and they just don't care?
I like "orgiastic cries of CBT and GET", that sounds about right.
I regard those psychiatrists associated with the PACE trial as evil. Personal greed combined with a lack of care for those who suffer makes them so. I want them to get this disease, to make them understand what it is really like, and thus stop them perpetuating their moral crimes.
I also feel deep rage, and am fighting temporary despair (though am buoyed up by the spirit of the WPI, and of events like the 'COUNT ME IN' on facebook).
However, I have decided that refusing to despair is now a political act in the face of such immorality, and that decision gives me strength. I hope it does for others too.
I think in some ways, the media response had distressed me more than the paper itself. When scrutinised, the paper basically says that a modest proportion of people with Oxford defined CFS experienced some modest benefit from CBT/GET.
I read an article (one of the slightly more measured ones) on the Boots WebMD website, in which Michael Sharpe, one of the study's authors said:
“It’s not making everyone better, so we mustn’t overblow it. This is something which has a useful effect for a substantial number of people, but it’s clearly not the final solution to the illness.”
"Although the cause of ME/CFS isn’t known, viruses have been suspected by some scientists.
“There is a great deal of controversy about the role of viruses, which is still going on.” Sharpe says, “This research doesn’t really speak to that.”"
And then we have the effing Guardian's headline "Study finds therapy and exercise best for ME", and my own personal favourite, the Indy: Got ME? Just get out and exercise, say scientists".
So we have the public's perceptions set back a couple of decades, and I fear for what impression the health professionals I have to deal with will have from this kind of dumb, sensationalist reporting. And like you say, it all trickles down to NICE, the NHS and DWP.
Sorry, I think I've just essentially repeated all the points you've already made!
I was quite dismayed when I read the Guardian report. I'm not sure what to say really, but I'm sorry that PWME have been hit with another utterly counterproductive report like this.
More strength to you, nmj.
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.
Thanks, all, for your comments, I agree entirely with you, Sylvieromy, the psychs keep control as they are are a very well organised corrupt & tight group - like any dictatorship - and apart from our own dissenting voices as patients and ME charities we really have no one in power that can shift the balance for once and for all. I wrote to my own MP, Alistair Darling, a few weeks ago about the EDM, and he asked me if I thought the new MRC £1.5 million initiative was misdirected and was genuinely interested in my feedback - this was before PACE trial actually published - and I wrote him a very long reply trying to fill him in on the background to ME politics. Am waiting for his reply. He has still not signed the EDM, I hope he does in future.
Amy, thanks for your input, but am afraid I have no respect for anything Michael Sharpe says (see end), I saw him speak here once alongside Dr Chaudhuri and others - he waffled and showed slides of university buildings, he was padding out his talk. Unfortunately most people, including NICE, cannot tell the difference between Oxford-defined CFS/fatigue and the illness we all know as neuroimmune ME and, and that is why it is so perilous.
And I still don't actually know what the hell Oxford-defined CFS is, it is so woolly and vague, and shockingly does not exclude those with depression. Perhaps these patients would have recovered anyway? And they changed their criteria halfway through to the diluted London Criteria, is that correct? To further ensure they got the results they wanted.
Why not spend the five million on studying those severely affected by ME, and children affected with ME - would that not make more bloody sense? What has this study actually achieved? How many people are truly going to go from ill health to wellness as a result of this?
And more significantly - how many PWME are going to be harmed?
And imagine if we had responsible reporting of ME, health editors, dissecting the PACE trial, informing readers of the obfuscation that goes on in the world of ME!!! So that when people browse the internet in their lunch hour they don't see 'Shock, horror! ME cured by exercise!' - but 'Shock, horror - ME still being run by psychiatrists!
Sarah Boseley wrote a good article on ME last year or the year before, so why she penned this is beyond me. To say some patient groups 'believe' there is a conspiracy is rather emotive, we damned well know there is a conspiracy. And I do not need the XMRV findings to bolster my belief that my illness was virally triggered, I know it was virally triggered. I was fine before Coxsackie, life irrevocably changed after Coxackie. This is not a belief, Sarah, this is fact. (And none of these editors have acknowledged my tweets, which is pretty rude.)
I am not felled easily but I have felt so battered by this PACE research and the media onslaught, it seems almost personal, I have been fighting ignorance about ME since 1983 and to read all this shit is honestly just heartbreaking. As Amy says, we have been pinged back two decades.
And here are some of Michael Sharpe's 'best bits'
http://www.meactionuk.org.uk/ME_-_What_do_we_Know_-_October_1999_-_310805.htm
My new tactic is scorn. Ceaucescu was brought down by it and it is insidiously effective. Plus it feels good.
My other tactic is to fire off one communication a day to someone with more social power than I, on the subject of M.E. A kind of drip drip constancy. Here's today's, aimed at health editors:
The New York Academy of Sciences has 26 Nobel laureates on its board of governors and president’s council.
They have invited the scientist who discovered the retrovirus xmrv in a high percentage of people with M.E. to speak to them. On the subject of PATHOGENS IN THE BLOOD SUPPLY.
Doesn’t that make you think?
......................
For details see: http://www.nyas.org/Events/Detail.aspx?cid=0918b8d8-9a46-4334-b194-23ade9c2a7aa
The scientist in question is Judy A. Mikovits, PhD from the Whittemore Peterson Institute for Neuro-Immune Disease.
...there, now I feel nicely aerated and am off to throw a pot.
I put your last comment in a post of its own, it is so good - I meant it to autopublish at midnight last night but I see I didn't set it up, it is posted now though! I am sure once the biomedical truth of our illness is proven beyond doubt, which it will be, these same health editors will be jumping on the bandwagon, wanting a slice of the action, just wait and see!
I've come late to this, only having read the newspaper articles. I'm trying to let it wash over me because it makes me angry, and angry makes me ill. However, harnessed anger can be good, and sylvieromy makes valid points. The articles seemed lazy rather than malicious and I've tried to contact the reporters directly, as comments on websites are easily dismissed as the babbling of virus-loving loons. The reason of course why this PACE shit has the ears of those who make policy is because it is cheap to implement (10 sessions of CBT) and means less payouts etc.
I think what is needed is a manifesto, something that is media-friendly, that can be written on one side of A4, and is easily remembered when people are interviewed or asked about it. I've come up with the three 'P's, which I'd like to run by you.
1. Proper definition & diagnosis (It's obviously too broad at the moment. The Canadian one seems most robust)
2. Proper research (using a proper definition as criteria for choosing population)
3. Proper support (both medical & social, although obviously this is very much dependent on 2)
I'd happily flesh this out if there was interest, but it needs to be kept simple. Part of the problem is that there is too much information flying around.
Mischa
Hey Mischa, Good to see you here. I am not sure laziness *is* the reason - and certainly not an excuse - at this point - they all know the background and politics to ME and it was grossly irresponsible to parrot this research globally the way they did. I emailed Sarah Boseley a year or so back when she wrote a good ME article, to thank her & to tell her about my book, she never replied. I have not left any comments on any of the newspaper websites as I feel we are just expressing outrage to those who feel similarly outraged, or those who don't believe us and will never believe us. I doubt the journalists read more than the first few comments anyway. That's why I thought tweeting was a good idea, it is short & sweet, & you can link too much longer statements. But none of them acknowledged my tweets so I can only assume they don't take journalistic responsibility very seriously when it comes to ME, we are simply fodder for this bizarre arena where psychiatrists throw us to the lions periodically. It has gone on too long and I for one cannot take much more. Of course it is all about money! But is this really why this clique of doctors have lost their integrity and duty of care to patients? Is there something else going on? I just don't get it. Yes, three Ps sounds great but I will need to get back to you on wording, I am ME'd out and need time away from the whole shebang. Hope things are going well with Shake Off!
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