The Curse of ME Brainfog and Painfog…

I bought my first computer about 1991 (40MB HDD, 4MB RAM!). I currently have 7 (five tablets, a laptop and a desktop), and in the period from 1991 to now, I’ve replaced about a dozen desktops and laptop machines to keep pace with hardware and OS demands. I’ve built a couple too. All things considered, I know about computers.

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Extreme Nausea – and what causes it…

I’m writing this partly to gain some perspective, for my own benefit, and also to share ideas with others whose lives, like mine, are blighted by perpetual and extreme nausea.

During the course of this year, the nausea that’s plagued me since I developed ME in the mid eighties has come to dominate my life to the extent that, some days – like today, which I’ve mostly spent sleeping – normal functioning is utterly beyond me.

My normal remedies – pretty much anything Continue reading

Lynn Gildersdale…

Kay Gilderdale has walked free from court, at the conclusion of her trial for assisting in the suicide of her daughter, ME sufferer Lynn, which saw the Director of Public Prosecutions, Keir Starmer, personally lambasted by High Court Judge Richard Brown for pursuing a case utterly without merit.

And so he should – getting a conviction is the CPS’s primary consideration – the validity of a case, and plain, old-fashioned common sense, come a long way behind.

Note: ME is CFS in the US.

Writing as someone who Continue reading

The ME – WHO snafu continues unabated…

The following letter is from Campaigning for Research into ME (RiME), to the NHS Services Inquiry. As it has been the subject of a bulk mailing, I consider it to be in the public domain, and thus there is no copyright infringement.

What concerns me, deeply, is that this letter refers to the 1969 WHO definition of ME as neurological but Continue reading

ME/CFS & the WHO – what has gone wrong?

I have ME. I’ve had it for 24 years and, for all that time, I’ve trusted the literature on the subject, but today that trust has been shaken to it’s very foundations.

I was in the middle of writing a blog post – not this one – about ME and why it’s not CFS, and citing the World Health Organisation’s definition of ME.

WHO ICD-10 G93.3 Multi-System organic/physical Neurological  Disorder

As you may know, the WHO’s definition, dating from 1969 is cited by everybody involved with ME, it’s in all the literature – I’ve even mentioned it myself in passing, but this time, as it was a main plank of my argument, I did what I always do, Continue reading

Rolling along…

This page was originally posted (in a substantially longer form – see link at the end), on my website, but it’s generated so much interest I thought it might be useful to give it a wider audience.

As regular readers (of my Ron’s Realm website), will know, because of declining health, I’ve become increasingly housebound over the past year, and that really has to change.

Thing is, I can drive, but when I get to my destination, I can’t walk more than a very short distance. Add the kit I need to take along, say, on a birding trip, and that distance becomes mere yards, but I think I’ve found a solution – a Rollator (or Rolator – no idea which is right – I’ll stick with the former unless I find out it’s wrong).

This is the model I bought, £70, delivered, from Aidmobility (it comes in red, too, but blue is more discreet, especially if I’m birding).

It has 7″ wheels, making it ideal for outdoor use, and the flat-profile tyres will help prevent it sinking in soft ground; 6″ wheels are really only suitable for indoor use, as it’s not just the diameter that’s smaller, they’re thinner, too, making them more prone to snagging in pavement cracks, and digging in on soft ground. They’re not unusable outdoors, but need rather more care.

As you can see, it has a basket under the seat, but I may well replace it with a bag, £7.25 here , as there’s no point in advertising the contents. These guys, by the way, have a massive range of disability and mobility equipment, at reasonable prices. Free delivery, too.

A word about prices – as far as I can see, and I’ve looked at a hell of a lot the last few days, decent design and quality of construction seem to have absolutely nothing to do with the price. Take this one, for example. It’s £59 on that website, but I’ve seen it at a variety of prices up to £120! And this at £139.95, or £64.95 from Aidmobility – exactly the same machine! Nothing at all illegal in any of this – but as a customer you’d do well to vote with your wallet.

My advice – pick a style/model you like and keep looking – you’ll find it at a sensible price before long. Trouble is, you can’t search by name, as different vendors apply different names to the same machines.

I’m wary of eBay – any sensible person would be, I think, but Rollators appear there, too. Mostly, it seems, the same model is offered by a variety of vendors at a variety of prices, but watch out for postage charges on eBay – they can add 40% to the price quite easily. I’d recommend buying from an online specialist, or your local one if you’re lucky enough to have one, and give eBay a miss – the prices aren’t that good anyway. And don’t forget to claim your VAT exemption either, wherever you buy.

And one very important point – make sure the handles can be adjusted to fit you (measure your walking stick/crutch, and ensure there is provision for adjustment either side of that figure). An acquaintance of mine has a Rollator that would be too low for me – and he’s about 6′ 4″ – almost a foot taller than I am. I saw him a few days ago, and he has the handles on their lowest setting and the thought occurred to me – does he actually know they’re adjustable? Then, he’s had it for years, so how can he not know – it beats me.

If I had the money, I’d be sorely tempted by one of these. With all the bells and whistles, it’s expensive, at £245 (though I’ve seen the basic machine at £170), but it’s seriously cool. Trouble is, I wouldn’t be able to attach any of my bits and pieces to it, as I plan to. Ah well, sometimes older designs are more practical and, of course, replacement wheels are widely available and affordable – I doubt the wheels on the cool one are either.

Obviously, Rollators are designed to aid walking. The handles take your weight, and you trundle it along – much easier than using crutches or sticks, and it won’t roll away from you as it has brakes. Also, and this is vital for me, four-wheeled models come with a seat, so I can rest when I need to, not just when there’s a bench or other seat available which, of course, there may not be, or it may already be occupied.

I’ve really needed one of these for years, but I put it off because I thought I’d look like a pillock! OK, I still might, but I don’t care any more what others think, it’s what’s best for me that matters.

Another important aspect, for me, is that it can be used to carry my birding and photographic gear. A rucksack has been fitted to the front, to carry waterproofs and maybe a flask and sarnies, my telescope and tripod can be strapped to the seat to move them to wherever I need to be, and my photographic gear can go under the seat. Note: Whatever you load on to it, make sure you don’t exceed the maximum recommended weight or, better still, stay well under it – my machine will take 19 stone, and I can’t envision getting beyond 16 stone with me and my gear. Notice how cunningly I’ve avoided mentioning my weight? That’s talent, that is!

If you just need support while walking, plus a bag to carry stuff, then a three-wheeled machine may suit. They also take up less room when used indoors, and when stored.

These can be either aluminium or steel, but don’t buy a chrome-plated one – you’ll spend half your life polishing it to keep rust at bay!

This is a cut-down version of the original, which you can find here.

Anti-candida diets are rubbish – official…

Those who have mentioned to me, in the past, their adherence to sugar and yeast-free diets to combat candida and thus help their ME, will have seen me explode with exasperation, because it’s complete nonsense – there has never been the slightest medical evidence in support of this.

Now, at last, someone has proved it’s nonsense. The research, which was carried out by experts at St Bartholomew’s Hospital, involved 52 patients who either followed the low-sugar, low-yeast ‘anti-candida’ diet or a normal diet for 24 weeks.

Analysis revealed that there was no apparent difference in levels of fatigue, mood state or quality of life between the two dietary groups.

Lead researcher Rhona Hobday, who is a registered dietician, said that there has been little clinical research into the benefits of a low-sugar, low-yeast diet until now.

‘People with chronic fatigue should adopt a varied and well balanced diet known to optimise and protect health rather than unproven and complicated diets,’ she said, adding that, too often, people are advised to follow diets ‘for which there is no evidence of benefit’.

So to all those parasites who peddle quack diets to the ME community I have only one thing to say – bugger off and get a proper job!

If, though, you do have candida (or think you do – this won’t harm you if you’re wrong), this is my remedy for candidiasis. It works, and I have no axe to grind, I’m not selling anything, nor do I have any interest in the products recommended.

ME e-petition update

We the undersigned petition the Prime Minister to get the Health Service and medical profession to accept the WHO classification of ME/CFS as an organic neurological disorder and not as a psychosocial syndrome.

The above petition is now closed. During its life the closure date appeared to fluctuate, but it finally closed on January 22, with a dismal – and shameful – 8,476 signatures, out of a potential quarter of a million or so.

Speaking as someone with ME, in my opinion, those of you who didn’t sign, or who didn’t get their carers and families to sign, deserve to have your arses kicked. Illness is not an excuse for brain-dead apathy. Even if you were too ill to do it yourself, you could have got someone to do it for you.

Sadly, though, all those of you who were too apathetic to be bothered will now drag down the rest of us, and I’m ashamed to be sharing an illness with such pussies. The government can now see clearly that most people with ME don’t care how it’s designated, so why should they bother doing anything about it? Ever.