Three things

Three things I've learned:

• Balsamic vinegar is a bastard if you spill it, you get an ice rink on your kitchen floor.  

• My new printer (Christmas gift, old one was gubbed for six months, it was printing stripes down the margins) only works if I switch it on before laptop. Otherwise, I get relentless, rage-inducing messages about unsupported ports.

• Voltarol  deep heat treatment is more helpful than diclofenac tablets. I am pleased.

And sorry to be  a book bore, but I just saw this on Amazon.

Imagine

I was speaking on the phone to a friend with ME yesterday and we wondered what it would be like to have this illness without having to deal with the constant assault of ignorance. Imagine just having an illness, without the stress of feeling you are on trial constantly. (Imagine what our poor adrenal glands are dealing with, years and years and years of having to defend ourselves.) Most of the time you try and switch off, rise above it, get on with things, but then one morning you wake up to broadsheet headlines telling you that 'ME can be cured by exercise' - clever scientists say so! This unleashes such feelings of injustice and rage, you can't ignore it. You have to fight it. There is too much at stake. Then a few weeks later, as you are just calming down, back on an even keel, you happen to catch the end of a radio programme, a programme you wouldn't usually listen to, you are not usually awake. You are once again assaulted - by a tiny detail that may have gone unnoticed by many listeners, but not by you. You hear an actress whom you have admired in The Thick of It and Getting On, Joanna Scanlan, referring to her collapse from nervous exhaustion which led to a year's illness in the nineties. She describes how she had to give up her job as a senior lecturer and go back and live with her parents. She describes (51:30 mins in) how she had become disconnected from her passion for acting and how listening to Nirvana's 'Smells Like Teen Spirit' really helped her 'get back in touch with this creative path'. But in the middle of the conversation she slips in something deadly: Eventually the doctor diagnosed my illness to be what is sometimes called ME, probably in the old days used to be called a nervous breakdown... So once again the myth that ME is a mental illness is being perpetuated by a long, slow drip. I'm sure this actress has no idea of the blow she has just delivered, after all her doctor told her she had ME. It's great she recovered from her own particular exhaustion and found Kurt so rousing. Still, I wouldn't be surprised if the next headline is 'ME cured by listening to Nirvana'. It never fucking stops. And that is why we are so angry.

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.

Fabulous.

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.'

We don't need no education...

So gutted by tuition fees vote, although I think we all knew it would go through, in the end. My student days - which spanned the eighties - were severely disrupted by illness but I feel more nostalgic than ever for them now - such precious days. We currently get free tuition in Scotland, but I'm sure every student/lecturer up here is sickened. I feel especially angry towards the Scottish Libdems who voted for or abstained... Violence is never good and having horses/batons or metal fences - depending on your point of view - used as weapons against you must be very scary. I also felt for the poor horse that reared up. But why oh why are the front pages dominated by photo of Charles and Camilla who were UNHURT, their car got shoogled and paintbombed but they were fine? A much bigger tragedy occurred yesterday: a lying Libdem leader showed that his millionaire friends are much more important than the people who voted for him. Access to education is everything. The most poor wishing to go to university (if we can actually believe the government) and the rich won't be affected (not really), but what about all of those in between? A great post on yesterday's demo by Newsnight's Paul Mason.

An old bag

I am patenting a new rage: bag rage. I spend too long, wasting time and energy, rummaging frantically in my bag with too many compartments. It makes me feel old.

To BBC or not to BBC

'Spending money on American imports like Mad Men will be cut.' If they think they are axeing Mad Men as well as 6 Music, they can forget my licence fee. But then this is the man who refused to broadcast DEC appeal for Gaza. You can join Save 6 here.

Kick their asses, Prof Hooper!

Fabulous, fabulous Professor Hooper.

The Wessely construct has to crumble, are we maybe getting there?!

When I think of the jibes, the disrespect we have all had to face over the years. This letter should be on the desk of every single medic who has doubted ME is not a physical illness. Prof. H says it so cleverly and succinctly.

(My anger below is not towards the non-believers, they deserve HUGE, unmeasured anger, bucketfuls of unrepentant anger.)

Measuring out

Is there a way to tell if your level of anger is appropriate? How do you know? I wish there was a machine to help you measure out the correct number of grammes.

Magic: How to Make an Illness Disappear!

Am linking to  Professor Malcolm Hooper's complaint to the MRC: Magical Medicine: How to Make a Disease Disappear. And thanks to Nicky for pointing out the report to me in the first place. Wonder if the boys at BMJ will be reading Professor Hooper's words...

Yawn, yawn...

I tried not to get mad about the nonsensical Daily Mail poll a few weeks ago but when you see an Observer columnist writing crap about ME it is hard not to react. Am so angry with Kathryn Flett. She claims to have had ME from 1988-1992. She writes that while extremely grateful to have recovered she 'strongly believes there is a psychological component to ME - a point of view that will fail entirely to endear me to the soi-disant community of ME sufferers which occasionally seems slightly more interested in trying to persuade the still-largely-uninterested medical profession to take it seriously than in, say, trying to get sufferers to take more responsibility for their own individual recoveries, by any means necessary'. (She covers herself with that carefully placed 'occasionally'.) I am thrilled for anyone who makes a decent recovery from this illness, but having followed KF's columns for many years, I strongly believe that she never had ME (which I recall she self-diagnosed by reading an article in Time Out - I think she says this in her breakdown-of-marriage memoir The Heart-Shaped Bullet, though it's a long time since I read it). No, I believe she may have had a depressive illness (which is what I understand CFS to be) and perhaps a yeast intolerance as she has written before that she felt much better after cutting out bread*. Who needs neuroimmune research when we've got Kathryn telling us to stop eating bagels?

* pls see comment no.1

Broken

I would prefer not to have broken my beautiful Danish plate - once upon a time hanging in the hall - but that's what you get when you walk round the flat with eyes closed after eyedrops... I used to love my eyes, now I see them as tiny machines with many things that can go wrong.

Books I will never read, and one you should read

I will never read Going Rogue, obviously, but I enjoyed this review.

I'm always curious about lists of writers' favourite books but was peeved to see a recommendation for a recent book ('sympathetic, informed, canny') by Elaine Showalter. The book may well deserve such praise from Joyce Carol Oates (they are friends, I believe), but I have not read - and will never read - anything by Showalter for I cannot see her name without feeling huge anger and disrespect. (For those who don't know, in 1997, she wrote Hystories: Hysterical Epidemics and Modern Media in which she irresponsibly and shamefully argued that ME and Gulf War Syndrome - like claims of alien abduction - were manifestations of hysteria, 'psychogenic syndromes of the 1990s'. She was most certainly not sympathetic, informed or canny back then. I doubt she would get away with such assertions now, and one can only wish the aliens had abducted her before she got away with it in 1997.)

I just finished Mark Steel's What's Going On?, I've been dipping into it for a couple of months, it made me laugh out loud, though melancholy at times.

Binned

Observer Woman Magazine, straight in the binny bin bin.

Eye talk

Well, my (anterior) chambers may be deep and quiet, but the pressures are still fucked and I forgot to defrost the mince. I hate using the microwave for defrosting cos you see all the blood. And it doesn't seem like proper defrosting. Unnatural, if you like.

Bad thoughts

I was thinking bad thoughts about someone and dropped my tuna on toast - beautifully sprinkled with paprika - on the carpet, fish-side down. This made me think even worse thoughts. Then I thought maybe this is my punishment for bad thoughts. So I will not think any more bad thoughts.

Not understanding the triangle

Thought this meant DO NOT SPIN, but it means DO NOT USE CHLORINE BLEACH. Could have saved myself the trouble and energy of wringing out my lovely grey dress by hand and almost ruining it. I really must get a maid.

Politics of ME

Hillary Johnson's brilliant speech at Invest in ME conference last month.

I do try not to get angry about my illness these days - or rather the interpretation of my illness, what a waste of fucking energy - but reading about what has gone on in the USA makes me want to kick and scream.

Drama

I've been enjoying the law firm drama Damages on BBC 1, but have no idea what is going on, it's ridiculously convoluted.

Simon Wessely is a very dangerous man. I see he's been up to his old tricks again, in the Independent. Interesting that ME doesn't exist in France - I was living in fucking France when I got ill. I'm not surprised he gets hate mail. Personally, I wouldn't waste the stamp.

* Just to add: Of course I do not think hate mail is ever a good idea, but I can understand why people are driven to it, faced with attitudes such as Wessely's. I couldn't sleep last night and was thinking of Elaine Showalter, American academic and charming author of Hystories (1997) - I believe she also got hate mail and death threats for her views on ME and Gulf War Syndrome. I just read she needed an armed guard at a Barnes & Noble reading.

ME does not just wreck one person's life. It irrevocably changes the lives of their families and partners and children. Do the likes of SW and ES have the remotest idea of the damage their ill conceived ideas cause? I don't know how they sleep at night.

Sheer frustration

ME Association's response to BMJ on NICE judicial review.

BMJ (which advertises its aims as 'providing rigorous accessible information that will help doctors improve their practice') extract is here.

I have just left a comment.

Sleekit

I am beginning to bore myself with posts on ME, but some things just cannot be ignored. Still, NICE Clinical and Public Health director Prof. Peter Littlejohns demonstrates how scarily easy it is to ignore certain truths if you are in a position of power:

"Today's decision means that the NICE guideline is the gold standard for best practice in managing CFS/ME... The judgment acknowledges the robust procedures that NICE follows in ensuring that its guidance is independent, evidence-based and fit for purpose. We're delighted that this issue is now closed and look forward to continuing to produce world-class guidance which benefits everyone who uses the NHS."

It's all so sleekit. If he thinks the case is finally closed, he is sadly mistaken.

In a press release last week, Invest in ME said: Though NICE, with their well-paid lawyers and establishment machine behind them, have won the Judicial Review brought against them by ME patients, this is a pyrrhic victory... The "gold standard for best practice in managing CFS/ME" to which Littlejohns refers is an unworthy document which will fail to treat people with ME but may well satisfy insurance companies, career psychiatrists and government departments who have exhibited disdainful indifference to the plight of people with ME... Work will, in any case, begin soon on replacing these guidelines. Patients up and down the country will refuse the biased and ineffectual therapies forced on doctors to prescribe to patients. Those charities and organisations who are really representing people with ME will not allow this particular issue to be closed.

Thank goodness for voices of sanity like Invest in ME.

Thank goodness that real scientists are practising real science and having conferences like this.

*Update. Greenwords has pointed me to this. My favourite quote is from the Association of British Neurologists: "It almost seems that a select group of psychiatrists with a polarised view of this complex condition is directing the development of the guideline from ‘behind the scene’ ”.

I barely slept last night, so angry am I at the sleekitness of NICE. Throughout 25 years of illness, I have walked as much as I can, when able, the state of my muscles has bugger all to do with deconditioning - in fact my legs look quite toned - I probably walk more than many (healthy) lardy-assed drivers who never get out of their cars - the pain/exhaustion I still have in my calves from walking a mile a week ago is because of cellular fatigue not psychological fatigue. Okay, now I am really boring myself.

** NHS Quality Improvement Scotland is the Scottish equivalent of NICE. Hopefully they can be a bit more progressive in their views.