Monday, 28 February 2011

Fighting fiction with fact

Just curious: have any of the PACE scientists or journalists who parroted their misleading results apologised to the world's ME community yet - they must be aware of the international condemnation being expressed? No, I didn't think so. And here's the pornography itself, the full text of the PACE trial, thanks for link to @forcedout99. Early on, these good scientists inform us: Myalgic encephalomyelitis is thought by some researchers to be the same disorder - as chronic fatigue syndrome - and by others as different with separate diagnostic criteria.1,2. (But we're going to perpetuate the confusion anyway and spend £4.2 million and have our results applied to people with neuroimmune ME by NICE and all the powers that be. And we're going to further confuse GPs on how to treat people with ME. And we're going to recommend therapies that are actually dangerous for PWME.)

And to balance out the nonsense, an excellent letter to Paul Burstow MP who failed spectacularly last month to understand the difference between ME and CFS during a parliamentary debate (see how the obfuscation obfuscates, those psychiatrists are clever!). The letter is from two ME sufferers (one of whom is Andrea Pring of the very informative Dancing with the Sandman blog, in my sidebar) and is linked via the unstoppable Dr Speedy whom we all know and love.

Okay, tomorrow is March, spring seems to be here and I don't want to give these PACE people another minute of my energy or time. I've fought them as much as I can. They are wrong. I'd rather think about crocuses, so cheeky and robust, the way they get here in spite of the snow. End of story (I wish).

* As a little ps, Wessely argues that 'ME is a belief' in 1994. The actual treacherous lecture notes and not a mention of Dr Melvin Ramsay when referring to Royal Free.

** Whittemore Peterson Institute for Neuroimmune Disease on PACE trial.


nmj said...

Our conclusions are supported by secondary outcomes,as both CBT and GET provided greater improvements than did APT and SMC for most outcomes. The objective
walking test favoured GET over CBT, whereas CBT provided the largest reduction in depression. The comparatively greater reduction in postexertional
malaise with both CBT and GET compared with the other two treatments is notable, since the risk of exacerbation of this symptom is commonly given as a
reason to avoid treatments such as GET

Okay, you silly billies, when I overdo it, just going to the supermarket for example, normal daily tasks of living, I am left with burning muscles & exhaustion - especially in my calves - I can't do anymore, I've reached my limit. I am not afraid of GET, I just *know* from 28 years experience of relapsing, it is wrong on every level to force myself to do more. And when I try to - gently - push myself to walk more - as I still do, I am no quitter - I end up in more pain and with more exhaustion (physical and mental) than ever. And no pain killers work. There is a ceiling I cannot get beyond. Why would I want to go back to being bedridden every day for weeks, months of my life? Why? And I don't have depression so your CBT is meaningless to me.

Oh, but later on, you say that these results really only refer to people with 'fatigue' as their main symptom - so you more or less admit you are not doing research on ME. Exhaustion, pain, numbness, nausea, dizziness, clumsiness, cognitive difficulties, and the myriad of neuroimmune symptoms we have...

How dare you publish these results in the name of people with ME. How dare you.

nmj said...

I should say, I don't avoid going to the supermarket (as the PACE people would have it), I go often - when able - otherwise I'd starve. Luckily, I have supermarkets nearby me. But I am always in pain/exhausted when I come back (or even before I go).

I sometimes think of ME 'payback' like physics: For every action there is an opposite and equal reaction.

vw said...

Love it! Fighting fiction with fact! Lets face it Fighting fiction with fiction(ur book vs p**e) was an insult to your book! Don't think there will ever be an apology. Made me shudder reading ur description of going to the supermarket & the symptoms that follow as I know them too well "and no painkillers work".
Trying to think more of spring bulbs myself, the clematis buds are swelling & getting plumper each day!

nmj said...

hey V, How are you, my dear? I pretty much always have pain in my calves and when I overwalk it gets worse, I am so used to it, it really only registers in my mind when it gets worse. And of course the exhaustion from carrying groceries too. The crocuses in the park across the road are divine, I keep meaning to go across and look. There are only snowdrops so far in my communal garden, but lots of shoots are showing! Spring is wonderful. I love that you asterisked PACE I do that with sp***rs cos I hate them so much. (Fighting fiction with fiction - I just meant fighting bigotry with a novel, I liked that idea.) x

nmj said...

Dr Speedy said...

Great post and fantastic compliment NMJ !!
Much appreciated.

"the unstoppable Dr Speedy whom we all know and love"

Blushing, but as I am bedridden, no one can see that any way !!

Susannah said...

Ugh all their spin and pomposity just makes my skin crawl!!!

I really want to put this all behind me and just get on with ignoring them but they make it soooo hard lol.

Silly billys. Yes, a better alternative for all the words I might be using right now... ;) Heh heh.

nmj said...

Sarah Boseley of Guardian wrote above article last year, but I think those commenting recently, including myself, mistakenly thought it was a current article. It seems to be fairly informed, but then she went ahead - like every other health editor - and parroted the bogus PACE trial last month.

And thanks to ME Agenda for also pointing out Sarah Boseley's previous articles on ME.

20 September 2001:

"Storm brews over ‘all in mind’ theory of ME",3604,554693,00.html

27 September 2001:

"A very modern epidemic, Guardian",,559001,00.html

You see, we are fair game, fodder to be thrown to the lions periodically, as the psychs sit back with glee. I guess I feel angriest with Sarah Boseley because the Guardian is the newspaper I read and trust and respect. This portrayal of Wessely as a well-meaning psychiatrist trying to help us is stomach-churning (have a look at his lecture notes in my post, just to remind yourself of the manipulation that has gone on - as if you need reminding!).

'Microbes, mental illness, the media and ME: the construction of disease' 1994

So I guess the consultant neurologist who diagnosed me in 1984 was just suffering from hysteria.

nmj said...

My neurologist refers to the 'enormous trouble' that psychiatrists have brought to PWME.

Nina said...

Thank you nmj for standing up for severe ME sufferers against various proponents of scam recovery programmes (I don't want to name them on your blog and give them any more publicity).

I know you regretted getting involved which I understand, but I and surely many others are extremely grateful for you to stand up for us.

I'm so sick of people claiming to have ME and selling "easy recovery" if you just "want to get better". Remarkably, none of these are even fully recovered and many claim to have recovered several times.

nmj said...

Thanks, Nina. I've had issues with this particular blogger for a long time but have been more restrained in my criticisms. However, she simply can't expect to support life coaching (and this outfit seems especially dubious) as a therapy for ME so blithely and not get flak. She should blog privately if she only wants positive comments. It is good if you leave your comment of support on her blog too, if you haven't already, it is over there that people need to see why we are angry.

Nina said...

I would have done so but she has now closed the comments on her blog. Will drop her a note though.

Amy said...

I'd like to join Nina in thanking you for standing up for those of us who are severely affected by ME, and who are especially insulted by (and in some circumstances vulnerable to) these recovery programme scams.

Desperate ME sufferers represent a huge market, and are offered up to alternative therapists as a potential "income stream" by the people who start these (often pyramid selling) programmes.

It's a disgrace. And the last thing we need are disingenuous/self-deceiving/deluded (I can't decide which) bloggers naively promoting these therapies.

nmj said...

Hey Nina, Amy & Susannah, Thanks again for your words, but I have deleted most of the comments thread here as the blog post on ME which we were referring to has been removed by its author. I can only assume she has realised it was offensive. I do hope she has learned that ME blogging is not a 'hobby'. It is one thing to be upbeat about an illness, positive about possibilities of recovery, quite another to trivialise it. But, of course, ME and 'chronic fatigue' are being conflated here, thanks to Wessely and co. 'Health practitioners' - and I use that term loosely - and bloggers with CFS (ie not ME) are only embracing a situation made possible by horribly flawed science. But our comments are effectively redundant - on this occasion - and I don't wish to perpetuate any kind of blogging battles. I am wiped out.

nmj said...

Susannah, I'm sorry but I accidentally deleted your emoticon hugs - if that is what you call them! I really am very, very tired tonight.