Florence and Precious Mhango

Please read this:

Indygal

and send an e-mail to Phil Woolas. We know he can be swayed - Joanna Lumley helped him see sense about the Gurkhas.

You can follow the campaign on Facebook

Swine Flu Jag

I got a letter last week inviting me to attend my GP practice for a swine flu immunization. I have been receiving seasonal flu jags for a few years now because of my diabetes, and the swine flu inoculation offer followed on from that as I am in a risk category.

It was all an interesting experience. I found myself in a packed waiting room, and, as you do, began to eavesdrop a little. I was surprised at the general level of scepticism and fear in the room. People have become very suspicious, if not of science and medicine, certainly of the motives of the politicians and civil servants who set policy. Despite that 300 or so had turned up. I'm a bit more positive. I really don't want the flu, so I went for the jab with a glad heart.

I have to say I've felt pretty ill ever since - But I imagine that the strength of my reaction to the jag is indicative of my need for immunization. It's set off a lot of symptoms that could be either flu-like of ME. I'm tired, achy, can't concentrate,blah, blah, blah.

I'm glad I've had it though. It's still better than the real deal swine flu.

My advice for ME sufferers - get the jab, but clear your diary for 4 or 5 days afterwards.

ME, CFS, XMRV,ESA, MPs, MSP

One of the more irritating by-blows of an illness is a surfeit of acronyms. My ME or CFS is now thought to be caused by the XMRV retro-virus. I'm quite ill, and I can't work - but apparently I'm not ill enough that the UK Government considers me eligible for Employment Support Allowance. The only treatment I have been offered was a brush with Cognitive Behavioural Therapy, not a treatment that is well suited to a retro-viral condition. Whilst it is the UK Government that pay benefit in Scotland, Health is a devolved matter, so it would appear that decisions about research and treatment will be made in Edinburgh.

I'm going to start firing off a few emails to relevant politicians, both in Westminster and Holyrood. A Westminster election is imminent, and a Scottish election is due about a year later, so I hope that the fact that my vote is up for grabs might concentrate minds. I shall post extracts of the replies here, especially those that seem particularly supportive and practical and those that are dismissive, contemptuous or ill-informed.

Pride and Sorrow

On her thought-provoking blog, Subrosa has put up this video.


Please take a moment to watch it.

Mickel Therapy?

I was a little concerned to see a comment added to my last post that appears to be an advertisement for a rather expensive course of psychological treatment for ME. At a time when the evidence for ME having a physical cause - in the form of a virus - is stronger than ever, I find myself very unconvinced by a suggestion of a psychological 'cure'.

In my previous incarnation as a Social Worker, I had plentiful dealings with Cognitive Behavioural therapies, and I know that they have a great deal to offer in appropriate cases. I was offered CBT myself through the ME clinic here in Fife, and benefited from it. The benefit, however, was not that it cured my ME, rather that it helped me to learn to live with it, negotiate with it, manage it, so that I could still achieve goals (albeit limited ones) and avoid despair. What it didn't do was 'cure' my ME, nor did I ever expect it to; psychology isn't about curing chronic physical illness.

Even if I had been tempted to try 'Mickel Therapy', the fact that it was presented to me in a spam post to my blog would have set me against the idea. It's been pushed at me in the same way as those Nigerian 'get rich quick' emails that invite you to give lots of money to someone you've never heard of. Well, I'd never heard of Mickel before today, and just like the Nigerian spammers, he's getting none of my limited funds.

I'd really appreciate comments on this. I am actually quite angry about what I see as an attempt to deceive me into parting with money that I don't really have in the vain hope of being cured of a chronic physical condition by some form of psychotherapy.

Keep Going

You keep going. That is the bodhisattva's way. As long as it benefits even one being you have to, without any sense of discouragement, go on.
~ His Holiness the 16th Gyalwa Karmapa

I pinched this quote from lotusinthemud

It seems a pretty good motto to me.

A bodhisattva is one who compassionately puts helping others to be enlightened ahead of their own enlightenment.

Dazed and Confused

Well, after the great excursion to Edinburgh on Thursday, yesterday was the total wipe-out I'd anticipated. Every part of me ached, the brain fog was a real pea-souper, energy levels were flat and low. And guess what - today's the same.

However, at least I know I can get through a full day if I'm prepared to pay back with interest later.

ME Developments

Here's a link to a great blog post that neatly summarizes the recent discovery of a retrovirus that seems a highly likely cause of ME.

I devoutly hope that this advance eliminates all the lingering and destructive prejudice that attaches to ME - yes, unbelievers, it is a real illness! I also hope it leads to a cure, and that sooner rather than later.

Here is a link to the website of the The Whittemore Peterson Institute for Neuro Immune Disease

It seems I'm probably affected by Xenotropic murine leukemia virus-related virus, otherwise called XAND.

Here's the website of XAND and XMRV.com, which looks like it will be a useful source of information.

A Day in Auld Reekie

I've been surveying the wreckage of my working life recently, after 18 months of not being fit for work, and decided to see what I could do about it.

The idea of a new career as a proof-reader/copy editor had been forming in my mind for a while, and I signed myself up for a day of introductory training provided by Publishing Scotland, held in Edinburgh. Yesterday was the day; I was rather nervous about how I would cope, and spent two days resting up beforehand.

7.50 saw me at Cupar station, and the 7.55 Cross Country train duly turned up on time. However, everything ground to a halt outside Inverkeithing, and the train was 25 minutes late into Edinburgh Haymarket.

I emerged from the station into the unaccustomed hustle and bustle of a city rush hour. There were plenty of signs of the tram works everywhere: Heras fencing, excavators, chaps busily leaning on shovels, and a general air of chaos.

I found my way to the venue - just a 5 minute walk from Haymarket. Publishing Scotland have rooms in the Fountainbridge Library, a handsome Art Deco building on Dundee Street. Despite the railway's best efforts, I was on time, and I was soon plunged into the mysterious world of proofreading, with its strange squiggly marks and much talk of 'n-spaces' and 'm-spaces'.

The course was well presented and very interesting in a geeky pedantic sort of way, so as a pedantic geek (or possibly a geeky pedant) I was perfectly happy, and I coped well with the morning session. In all training, the period after lunch, 'the graveyard shift', is when everybody nods off a bit and can't concentrate, but I survived that well. However, the afternoon coffee break was the start of a bit of a slide for me, and everything started to go rather soft focus and vague as the ME 'brain fog' put in its appearance. I'll be needing to reread the handouts for that session with some care. Luckily for me, the course tutor was a fellow ME sufferer, so she understood my predicament.

We finished up at about 5, and I plodded back to Haymarket rather wearily. I'd taken the precaution of booking a First Class seat home - given the rush hour plus the fact that I knew I'd be shattered. It was a good deal - only two quid more than standard, and I got a free cup of coffee and a muffin, so I was well pleased. Somehow, I managed not to sleep through my stop, and I was retrieved from the station by Mrs Lucas.

There followed a bite for tea and a bath, and I retired to bed at 7.45! I'm still waking up now really, and I have few expectations for today. I ache from head to foot, and my brain won't work properly.

But - it was a good day in the Athens of the North, and I think I've found a way forward. Here's a plug for The Society for Editors and Proofreaders (SfEP).