A Look into the Darkside of Life With M.E.

I’ve been trying to decide whether I should publish this all day. I still don’t know if it’s wise, but what the hell.

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Last Friday, I had a very good day, didn’t feel too ill, pain bearable, nausea minimal – I could get to like that.

Saturday I felt appalling, so desperately ill and hideously nauseous that I came within an ace of killing myself – and no, that’s not hyperbole. I just wanted it to stop, I didn’t care how. If it hadn’t begun to let up about then, I wouldn’t be here bitching about it now.

And it was, I’m sure, also the fact that I managed to externalise it (on Twitter), and get some perspective, that hauled me back from the brink, and I apologise to anyone whom I worried/scared at the time.

Looking back at Friday night reminded me that

Important notes about comments and advice…

I have unfixed this post as it’s screwing up my Google page ranking – it will now make its way down the page as normal. Some questions are now being addressed, but just the easy ones! The content of this post is now in a page, above.

Please note that, due to dramatically worsening health, I can no longer respond to requests for help or advice. I can’t say for how long this might continue.

In fact, so that I won’t be tempted, to my detriment, comments are unlikely to be moderated.

While I was always happy to provide help and advice, especially on the subject of COPD, it should be born in mind that

Supplements for ME/CFS…

Revised and updated January 25, 2014.

Many people have their own favourite mix of vitamins and other supplements that help them cope with their ME/CFS, as do I. Over the years, many supplements have come and gone, failing the placebo effect test. Those that remain actually are beneficial.

I always

XMRV has no significance in ME/CFS – for now, at least…

CFS patients in UK show no signs of suspect virus, is the headline to an article in the New Scientist, revealing that new research has shown that the XMRV retrovirus has no significance in ME/CFS.

As someone who has had ME/CFS for 25 years, I commented extensively on my blog about XMRV, advising caution while much of the ME community was

More thoughts on XMRV…

This is an adjunct to my original post on the subject.

Those of you who’ve read my views on the various so-called cures for ME/CFS, will know that I’ve questioned whether the people “cured” actually had ME/CFS in the first place.

It goes like this – there is no diagnostic test for ME/CFS, so diagnosis is based on the patients’ symptoms and history, after ruling out other potential causes. The system isn’t infallible, though, and there must be many

A cure for ME/CFS? Don’t rejoice just yet…

We now know the cause for ME/CFS http://www.dailymail.co.uk/health/article-1219207/Chronic-fatigue-caused-retrovirus-say-scientists.html Well, maybe, but let’s not get carried away.

While this discovery looks promising, a treatment/cure for ME/CFS is probably a long way off – the first step is to review and independently verify the research. If it pans out then – if Big Pharma is willing to invest the time and money – the search for a cure can begin. Maybe.

The trouble is that

Can flu shot trigger ME/CFS?

Another from my search-engine slush-pile – Can flu shot trigger ME/CFS?

In my opinion, no. There is not the slightest evidence that the flu shot can actually cause ME/CFS. You may read that it can in the lunatic-fringe, all-vaccines-are-the-spawn-of-Satan blogs and websites, but it’s just not true.

What the flu shot can do – and in my experience always does – is

Chronically sick and housebound? You may be Vitamin D deficient, then…

Over the past year, due to worsening COPD and increasing pain from a variety of sources, I have become more or less housebound. I bought an up-market powerchair, in the hope that I would be able to get out and about more, but it proved to be a complete crock – see I’ve bought a lemon and I want my money back… .

During the year, my overall health and energy levels have both deteriorated, and it wasn’t until last week that it finally dawned on me that my exposure to sunlight was effectively nil, and that as a result I was probably vitamin D deficient. That I was quite seriously

Making your own bread when you have ME/CFS…

I wrote the full version of this post on July 19, and forgot to post a copy here…

In Loafing around, I mentioned that the pain from the arthritis in my hands and elbows was causing problems. It was, too; the pain after the first loaf was pretty serious, though I played it down so as not to deter anyone else  from trying. A little over a week – and three loaves – later, the pain has abated considerably. Just a bit in my thumbs and wrists now, and I can live with that.

That got me thinking about bread-making and ME/CFS – and I think, for many, that it’s a pretty good idea and, unlike most things that require physical effort, or exercise which you may feel is pointless, you have something to eat at the end of it. Seems like a fair trade-off to me. It does depend on the degree to which the individual is affected, of course, but still…

To read more, go to my bread-making blog, where you’ll find the continuation of this post, plus a lot more on this subject.

Disabled people and Jury Service…

A friend has been summoned for jury service, and it set me thinking. Partly because it’s widely thought to be trial, not by one’s peers, but by 12 people too dumb to get out of jury service, but mainly because my own number may come up at some point.

Looking around the web revealed that some disabled people think they are under-represented on juries – though I’m not sure how they know – and that courts should be modified to ensure access for all disabled people. Well, given