Woe is us

I do not feel good today people. I feel tired and sore and my spirits are low. The continued delays in securing the release from China of nurses Suki and Ling Ling are weighing heavily on my tired mind and body.

I am hearing from China that nurse Suki is refusing food too. Ling Ling will not speak, she only stares forlornly to the west from their lonely apartment balcony and sighs. Suki is surviving by drinking her own tears. Ling Ling has only had a small bowl of soup since Thursday.

However, the beginning of the end of our sorrows is approaching. Our trinity will become one very soon. I fully expect this weekend's football wagers to reap such rewards that Suki and Ling Ling will be with me, both fully fed, and administering my convalescence by Tuesday evening.

Of course with each delay I am having to place more and more optimistic wagers as the returns also have to cover the previous loses! Soon I will have to back Arsenal to keep a clean sheet! This weekend's Yankee will require draws between Newcastle and Blackburn and West Brom and Fulham. We will also need Aston Villa and the Totteringtons to win.

If things continue to spiral out of control I will only be able to afford the services of nurse Gladys Emmanuel. I know kids, I'm scared too.

Champions League

I have spoken briefly to nurses Suki and Ling Ling today. They had occasion to try out a newly developed technique for relieving pain on a gentlemen which I am told involves the patient adopting a seated position in a corner of a small well ventilated room, while the two nurses wrestle in a small paddling pool filled with warm soapy water.

This technique which we here in the west have yet to adopt has produced remarkable results. Anecdotal evidence tells of a man close to death having been suffering from his brain rotting away.

After only a three minute bout he was skipping out of the facility grinning like a Cheshire cat. I am in a great deal of discomfort and although there is a danger this technique will cause me to asphyxiate, I feel at this late stage it is +EV roll of the dice.

So of course as you can see it is vital that this evening's Champions League wager which to be fair I can't even recall placing this morning, return a profit that will finally allow me to register Suki and Ling Ling's exit visa papers with a man called Dong from Shangwang who says he can sort things from there.

The wager is a standard yankee which will require wins for Manchester United, Inter Milan and Lille and a draw between the Villarreals and Bayern Münchens.


I wanted to have a shilling or to on the boys to at least secure a point against Citeh, but I did not want to jinx them. Good luck with all your bets.

Get the fuck out

So today's amusing NHS related anecdote involves a district nurse. She'd been sent over to see me by my GP. To touch base with me. I don't like it that we're touching base with each other in this country now. I was OK touching base with co-workers in the US of States, when in Rome and everything, but we shouldn't be touching base with anyone in this country. We'll be giving each other a heads up next.

Anyway I digress. This woman in her blue tunic looked just like Violet Beauregarde from Willy Wonka and the Chocolate Factory. She was maybe 5ft tall but very fat so was almost perfectly spherical and she perched herself on the side my sofa with her two feet swinging away beneath her. I was immediately appalled by her.

I did not offer her tea and certainly not a biscuit.

I cannot take health care professionals seriously who clearly have no interest in their own health so the plan was to roll this woman out of the house as soon as possible. I told her briefly as possibly the things I'd told my GP, about what I want to occur when it's time and why and she nodded sympathetically.

I told her briefly about my condition and history. She nodded sympathetically. When I was finished there was a few seconds of silence before she responded with, "and do you have any problems with bed sores, do you need a cushion?"

Bed sores? I've just been telling you the end is nigh for me. My lungs are essentially just filling a hole in my chest, they serve no other purpose. I don't want a transplant, I don't want resuscitating, I don't want a funeral etc etc and all you've got for me is "do you have any problems with bed sores."

In my head I told her to get the fuck out of my house. But I'd obviously scared her shitless with all this lung talk and she was desperately attempting to bring the conversation down to something within her level of competency. District nurses know only how to treat bed sores it seems and help people urinate. Everything else is far and beyond their comfort zone.

I explained I was OK on the bed sores front and she seemed quite pleased. Pleased enough to feel like she'd helped and could make her excuses and leave. She gave me her number and shuffled off towards her car where I should think she made for the nearest cake shop.

She remains of course the very last person I will call when I need assistance. The Avon lady will get a call from me before she does. It seems when people train to be nurses those who are competent are assigned to hospitals. Those who are a danger to themselves and their patients become district nurses.

Be careful out there people. Don't trust anyone. It's every man for himself. Good luck everyone.

CF gene therapy: Why it's all bollocks

So today after trying on my hats and making some important parking spaces for my slippers I began researching CF gene therapy. Every now and then my mother will wheel spin her Clio into my street and inform me there's been an article in the Daily Mail about how a cure for Cystic Fibrosis is just round the corner arriving just in the nick of time before I wet myself from being knackered.

I feel bad each time I have to explain how she ought not to be reading the Daily Mail, that gene therapy will almost certainly never been developed by any pharmaceutical company with an interest in continuing as a going concern and that anyone with advanced lung disease (i.e. me) probably won't benefit from this therapy anyway as according to the UK CF gene therapy's own website:

"Patients who have quite advanced lung disease are not suitable because the comparatively advanced lung disease in these patients would make it very difficult to deliver the gene and, therefore, reduce the chance of seeing an improvement in lung disease severity. In addition, we are concerned that the treatment may be less well tolerated in patients with severe lung disease, because gene delivery may cause a transient drop in lung function."

None of this however appears on the homepage of the CF Trust's website alongside their request for donations to fund this programme. Which angers me. This seems very exploitative to me. CF patients themselves are usually fairly cognisant of where the bear sits with these treatments and concoctions from our chats and consultations with our CF clinic boffins and carers.

Parents on the other hand know only what they read in the Daily Mail or the begging letters they receive from charities. And parents buy it because it's obviously very difficult to accept that they have produced defective progeny who will be burdened with a grotty lung disease for ever more and they desperately what to see it cured.

The facts of the matter are if charities worked, which is to say, if they cured the diseases they seek to cure, there'd be no diseases by now. Certainly if campaigns and fun running and wearing coloured ribbons or lying in baths full of beans for a week to raise money were all that were needed to cure diseases we'd all be fighting fit. Obviously it isn't.

Most of the money raised by charities goes towards funding the charity itself or the financing of campaigns to raise money. A circular self-serving process if you will. The CF Trust for example raised £8m in 2010, but it had to invest £2.5m to raise that money. The head cheese at the CF Trust earns over £100,000 a year (total salaries £1,25m).

Charities exist so they can exist. If a charity cured the disease they were set up to cure, they'd cease to be necessary, they can't have that. So they want to be seen to be seeking the holy grail of a cure, while simultaneously knowing full well it's a fantasy.

The UK CF gene therapy consortium boffins will have done their job. Those boffins just care about the science of it all. They just want their names in the medical journals as the dudes who developed the therapy, which is fair enough, but they're indifferent to whether it is actually progressed by a pharmaceutical company and actually reaches patients.

In order for this therapy to actually cure anyone or at least have a therapeutic difference that beats the current treatments a major pharmaceutical company will be required to finance the phase III stage of the trials. Pharmaceutical companies have no incentive whatsoever to develop cures.

There's no money in cures. The money is in the medicine, the maintenance of the condition. They invest their money in treatments that will help you live with your condition via expensive repeat prescriptions. The patents they take out on the treatments afford them a monopoly and they whack a 500% mark up on any medicines that really work.

CF only affects 9,000 in this country. Even if Gene Therapy had to be delivered by the patient routinely it still would not offer enough of a reward on the initial investment to develop it. Also, the ironic thing about patents anyway, is that when a treatment works really well or is needed in an emergency for example like the swine flu vaccine tamiflu - the Government will usually lean on the pharmaceutical company to give up it's patent privileges in order to allow a generic copy of the drug to be manufactured or to significantly lower it's prices.

CF does not effect enough people for a cure in the true sense of the word ever to become a reality. The CF Trust however will continue to insist that it can.

Even if their current £6m target is missed and their "once in a lifetime" opportunity missed to realise their goals, they will continue this line and insist to yet another generation of hopeful CF families that their dreams will become a reality. Even if I could, I wouldn't hold my breath.