ME

ME

Sunday, August 30, 2009

Time Consumption

It's just so amazing how time-consuming doing nothing can be! Actually, when one takes account, it's remarkable how much one actually gets done whilst they think they're doing nothing; cooking a few meals, pottering around the garden, creating a new website and modifying the old, writing a couple of poems, feeding the fish. Quite frankly, I'm surprised that I found the time to do all that in the midst of doing nowt!

Geocities having given up their free hosting service, Webring very kindly transferred my original Geocities site to their free hosting space. Bravenet have now decided to go the same way - in their case limiting the amount of webspace to 5MB. As I have several free sites on Bravenet, (Mal's Paintings, HelMals Garden, HelMals Bravehost, Mals Poetry etc.), it seemed easier to pay up and keep them all online, as well as setting up a revamped version of our Luv4Sinners site on my very own domain (that's something I've never bothered with before). New Luv4Sinners.

Due to my usual impatience, I can't promise that everything's done right and, having prepared the new site on my laptop I (at last moment) discovered that the display was hopeless on Internet Explorer even though it displayed correctly on Firefox so, adjustments were called for and, I suddenly found the situation had reversed. Minor irregularities apart, I decided it was time to upload the site, utilizing my very own domain, as it was. I'm quite fond of its home-made appeal anyway, I'm too busy to await perfection. You can tell that it was done on the hoof as one or two individual pages would have been better placed in the relevant section but, I had to hurry back to my busy doing nothing phase; just as well it's not a commercial venture!

As I've been so busy doing nothing this posting may appear on another blog as well (different readerships you know, but this site is the most select!).

Friday, August 28, 2009

WoT anomalies?

No doubt the WoT (Web of Trust) is a useful(?) browser plug-in, giving ratings and warnings for various websites but, it certainly proves perplexing at times. I receive a daily e-mail from The Guardian and, I'm always surprised to find that all the links are accompanied by a red circle (of danger). When I click the link to read an article of interest, I'm invariably greeted by a WoT warning page, "This is a bad site .... are you sure you want to continue" (or words to that effect). On reaching the page the browser is always marked with a green circle (safe, trustworthy etc.) I've tried to give my rating to the Guardian pages, via their warning page, to be greeted with a message "oops, something seems to have gone wrong". I'm puzzled; how does a 'dangerous' site suddenly become a 'safe' one by the simple expedient of visiting it?

This example makes me wonder about the safety of the sites that they declare to be safe; is it worth using this application at all?

Another little anomaly I've found, this time with IE8, my surfing being done using either / both Firefox and IE, is that when I close IE8 it's not unusual to be greeted with the message that IE has stopped working and they'll try to find a solution to the problem. Surely, in these instances, the real problem would be if it didn't shut down!

Wednesday, August 26, 2009

Creepy Apologists


Don't you just hate it when, each time violence erupts at or after a football match, the apologists creep out of the woodwork to state that "these (hooligans) are not football fans!"

I'm definitely not a football fan and, I deplore the accusation that it's people like me that cause the violence.

Tuesday, August 25, 2009

DOWN TIME

I'm greatly surprised; "the system's actually working" (he says touching wood, and holding a lucky rabbit's foot - well maybe the rabbit wasn't so lucky!).

Over the past couple of days I've been experiencing as much downtime, so far as internet connectivity is concerned, as full connectivity yet, my ISPs (Virgin Media) status report suggests there are no problems. I've run checks on both laptops and PCs using both wireless and ethernet connections, even bypassing the router with the latter but, the problems keep recurring. [Strangely the ISP does report intermittent e-mail outages but, not any broadband downtime!]

Perhaps the problem is extremely localized; whatever is the case, the high proportion of downtime tends to bring me down with it.

Monday, August 24, 2009

The Hummingbirds Foundation for M.E. (HFME)

Just wanted to share this exciting news:



*Please repost widely* *Please repost widely* *Please repost widely* *Please
repost widely* *Please repost widely*

This month A Hummingbirds' Guide to M.E. makes way for a new organisation:
The Hummingbirds' Foundation for M.E.

See below for details!

-------

A new international, uncompromising Myalgic Encephalomyelitis charity has
been created!

The Hummingbirds' Foundation for M.E. (HFME) is a new international M.E.
charity (founded by Jodi Bassett).

The HFME's mission statement:

"The HFME is dedicated to fighting for the recognition of Myalgic
Encephalomyelitis based on the available scientific evidence, and for
patients worldwide to be treated appropriately and accorded the same basic
human rights as those with similar disabling and potentially fatal
neurological diseases such as Multiple Sclerosis."

As many of you know all too well, the situation facing M.E. patients
continues to worsen.

It is so rare to read information purely about M.E. any more, that doesn't
mix in a large amount of 'CFS' misinformation. Flawed concepts such as
'ME/CFS' and 'subgroups of CFS or ME/CFS' are also unfortunately gaining
popularity.

No matter how you look at it, it seems that it will be impossible for us to
make any progress with M.E. advocacy without some more uncompromising
advocacy groups.

The HFME is not only a genuine and uncompromising voice for M.E. patients
but also speaks up on behalf of all those patients misdiagnosed with 'CFS'
who have other diseases, and who also deserve a chance at correct diagnosis
and appropriate treatment finally.

M.E. patients and patients misdiagnosed with 'CFS' who have non-M.E.
diseases need to, and can, work together to achieve common goals. Fighting
for the bogus disease category of 'CFS' to be abandoned benefits all patient
groups.

The HFME acts in response to facts, logic and ethics. There is no other
agenda than helping all the patient groups involved to finally be treated
justly and in a scientific and ethical manner, and accorded the same basic
human rights those with many other diseases take for granted.

I hope you will want to be a part of this new initiative. Most involved are
very ill and disabled, and so we need a large amount of people to become
involved and to each contribute the small amount of time and effort that
they can spare, for this to work.

Even though many of us are very ill, we can move mountains if we each
contribute what little we can and work together with integrity and
intelligence. (Friends and family members of patients etc. are also of
course welcome to participate too.)

Please email me (Jodi Bassett) for details.

Paid membership in HFME is not yet available, but will be available soon.
The organisation of the foundation is still in the early stages, although
the HFME website is now complete.

To view the new Hummingbirds' Foundation for M.E. website, or to learn more
about the HFME, please go to: www.hfme.org



------

What are the aims of the HFME?

*To disseminate scientifically accurate information on Myalgic
Encephalomyelitis (M.E.) to M.E. patients; to their carers, family and
friends; to the medical profession and other professions which deal with
M.E. patients; to policy makers; to M.E. advocates and activists and to the
general public as per the paper What is Myalgic Encephalomyelitis? and as
further discussed in HFME.

*To oppose false and meaningless disease categories such as 'CFS,' 'CFIDS,'
'ME/CFS,' 'CFS/ME,' 'ME-CFS' and Myalgic 'Encephalopathy' as per the papers
What is Myalgic Encephalomyelitis? and Myalgic Encephalomyelitis is not
fatigue, or 'CFS' and as further discussed in HFME.

*To defend the M.E. community (and those with non-M.E. diseases misdiagnosed
with 'CFS') from counter-productive 'activism' strategies such as renaming
'CFS' with some variation of the term M.E.

*To promote appropriate research based on proper understanding of M.E., and
to oppose flawed concepts such as the 'subgroups' of 'CFS' or 'ME/CFS'
concept.

*To be a voice for those suffering from M.E. who are facing mistreatment and
abuse due to the false notion that M.E. is the same thing as 'CFS' and is a
trivial illness or a mental illness characterised by 'fatigue.'

*To be a voice for all those patients misdiagnosed with 'CFS' who do not
have M.E., but other illnesses including: cancer, fibromyalgia, various
post-viral fatigue syndromes, athlete's over-training syndrome, Lyme
disease, Behcet's disease, PTSD, depression and other mental illnesses,
burnout, thyroid or adrenal diseases, various vitamin-deficiency diseases,
and so on. To encourage each of these patients to reject their 'CFS'
misdiagnosis and seek a correct diagnosis and appropriate treatment,
finally.

*To enlist the help of human rights groups, medical professionals and the
quality media to help to achieve the above stated goals as is their
obligation and duty. (A duty that has unfortunately been almost completely
ignored for the last 20 years, with a few notable exceptions).

This is a summary of the full text. To see the full list of aims, and a
discussion of the reason for each aim, please see:
www.hfme.org/abouthfme.htm



------

HFME shirts and badges etc. are now available at Cafepress

Lots of different items are available featuring the HFME logo, to help
spread the word.

Check out:

www.hfme.org/hfmeproducts.htm



-------

What will happen to the old HGME website?

The www.ahummingbirdsguide.com

website will be maintained for some years to
come.

It is no longer appropriate that the main website (the HFME site) also serve
as my personal site and feature and sell my artwork and so on, so this site
will become my personal website. A small number of minor pages of the HFME
website will continue to be hosted on this site however due to the huge
amount of work required to transfer over every single page (this applies
almost wholly to research and article pages by featured authors). The site
will also host redirection notices for one year. The site will also feature
a small amount of information about M.E. taken directly from the HFME site,
in order to educate anyone who comes to the site about M.E. and the HFME,
and to direct them to the HFME website and the work of the HFME.

Please update all links and bookmarks accordingly. Webmasters please note
that redirection notices will only be left up on the HGME website for one
year (until July 2010). Apologies for the inconvenience.

-------

I hope you are as excited about this new venture as I am and I hope you will
want to play a part in the HFME and the setting up of the HFME.

I hope you will help to spread the word about the HFME as much as you can.

Best wishes everyone,
Jodi Bassett
--
The Hummingbirds' Foundation
for Myalgic Encephalomyelitis:
www.hfme.org

Saturday, August 22, 2009

Theme & Variations


Yesterday the Café, today the Bistro, hope you enjoy reading about how the other half lives! The day, for me, started rather agonizingly slowly; customary pains and spasms in the lower limbs had found themselves some co-operative companions in the form of aching upper limbs and congested head and torso. Sleep had been so badly needed that it proved hard to come by; relaxation was required but stress was all that was available, stress not of a psychological-emotional variety but rather an uncooperative body.


Exhaustion proved such that I forgot to take the pain-killers yet, without these mind and body were unwilling to function in any manner that one would like to consider normal. Eventually, after 13 hours of bed restlessness, it required a great deal of effort to greet the early post-meridian sun. Only when pain cancelling medication had been taken was any degree of wakefulness apparent. An early afternoon bowl of cereal set me up for a little venture out into the garden, a place where I really feel at home and fully alive.


Contrary to the popular saying about the devil finding work for idle hands, in my experience it’s a garden that performs this task. (Of course, some would see that as the abode of the serpent hence proving the folk sayings credentials). There’s always a little task to perform in terms of pruning, re-arranging or general tidying up and, today was no exception. Strangely, the requisite effort seemed to re-vitalize me, even to the extent of venturing, loppers in hand, into next doors garden where several branches of our wayward shrubs and trees had seen fit to trespass. A few mugs of Earl Grey proved an invaluable aid to the performance of these duties.


By late afternoon, appetite aroused, I led my beloved by the hand to our local Crepes & Crocs Bistro at ‘The Milepost’, in time to take advantage of their Early Bird Menu. We both enjoyed a fishcake starter, served on a bed of green salad with a sweet lightly spiced sauce. For the main course I settled for the Toulouse Sausage and Mash, whilst my OH had the Fish Pie, sharing a side dish of garlic beans between us. To add to the sense of occasion we enjoyed a bottle of Loire Sauvignon to whet the palate.


On our return home, culinary chores beckoned as I prepared my own variant Country French chicken casserole dish in readiness for our Sunday lunch. Currently we’ve settled down to watch the 1944 film, “Farewell My Lovely” the overture to BBC4’s weekend of film noir. Adorable company and a decent movie, what more can anyone wish for? Perhaps a glass of Chardonnay!


Friday, August 21, 2009

Westgate - Customer Dis-service

A few weeks ago we ordered a new double bed for our spare room from Westgate Department Store in Harrogate. As this store is a part of the Anglian Co-op, we were happy to be supporting the co-operative movement.

Early last week we were informed that the bed was available for delivery and, that they would deliver it today, no hint could be proffered as to AM or PM delivery. The charge for delivery was an exorbitant £30+ and, full payment for both the bed and delivery was already charged to the credit card at the time of ordering.

Come the big day and, the component parts of the bed were delivered, or should I say dumped, in full packaging in the bedroom. Evidently unpacking and assembly is not part of their job, although a local shop from which we brought a bed a couple of years back assembled the unit for us and, all for a much smaller “delivery” fee.

We started to unpack the base components only to find it virtually impossible to open the drawer, in one of the base units, in which the castors for that unit are packed. After some twenty minutes of struggle, simply trying to open the drawer, we gave up our efforts and decided to contact the local store. Currently we’re still waiting to hear when they will send someone out to help us with this predicament.

As suggested earlier, we were supporters of the co-operative ideal (overlooking the capitalist warts of the institution). Next time we’ll choose a store that looks after its customers rather than go with a misguided whim of principle. Westgate Department Store, Harrogate, is unlikely to be honoured with our presence in future unless they get their finger out!

***********

P.S. The man arrived within a couple of hours to release the drawer. Contrary to the information given by the person in the Beds & Bedding Dept., given to my beloved, that our problem was "most unusual, I've never come across that before" , his colleague who released the jammed drawer commented that it was a "quite regular occurrence" when they were assembling beds for display purposes in the showroom.

There seems, to me, a slight discrepancy between "most unusual ... never ... before" and a "quite regular occurrence". One can only wonder aboutt the frequency of the never before information being given to a slightly disgruntled customer. This kind of disinformation would seem to me rather like applying flame at an oil refinery rather than pouring oil on troubled waters.

*PPS A much calmer post, THE VISITOR, can be found on my 'Mals Murmurings' blog.*

Wednesday, August 12, 2009

New Poem

I've just posted a freshly minted poem, SPIKE, on my "Archive Mined & Freshly Spun" poetry weblog.

If blogger will allow me in, as it seems to be working once more, I may post it on 'Mal's Factory' too.

Recently Unearthed & Newly Created


I just recently unearthed this oil painting of mine, BEAT POET & FLOWERS, when sorting through a few neglected portfolio cases. It was painted in 1967.





This is an image of my most recent watercolour painting, MARKING TIME, which I completed a couple of days ago!

Tuesday, August 04, 2009

LISTENING

It’s more difficult than you’d imagine to listen to one’s body. When things are going well, as has been the case for the past few months, with a paucity of trigger alarm signals, one becomes blissfully unaware of their own limitations. Managing a bit more here, and a bit more there, the extra effort seemed as if there were no toll to pay; the boundaries of my physical and mental effort have extended dramatically, way beyond what would have been my wildest dream during most hours, days, weeks and months from late 2003 to early 2009.



One takes the occasional trivial setback in their stride so, it came as something of a shock, this morning, when my head, torso and limbs were all suffering from several of the symptoms and sensations that so frequently blighted my being during that earlier period. Thankfully, they were only present as a pale reflection of their former intensity; even that was sufficient to prevent me continuing a leisurely stroll, on which I’d embarked mid-morning, to ‘Open Church’. That’s when I realized that I’d been losing the knack of ‘listening’ to my body, overdoing things a bit in my complacency. It’s almost as if I’d become too positive in my outlook; mind you, if positive thoughts had been a “cure” for ME-CFS I wouldn’t have ever succumbed in the first place.



So, it has been a lazy day for me, enhanced by listening to a new CD, ‘Tortured Soul’ by Danelle Harvey; the lady in turn rocks, grooves and tenderly coaxes her own words into life in these songs. Although the title of the album, and indeed the subject matter of some of the songs, could lead one to expect a ‘downer’, it’s the artist’s vitality and resilience that shines through.



Not only have I been taking stock, renewing my vigilance, when it comes to listening to my own body, I’ve also had the pleasure of listening to an inspiring singer / songwriter.


The Garden Blooms on 'Mal's Picturebox'

Three new close-up photos, 'THE GARDEN BLOOMS', can be found on 'Mal's Picturebox'.

Sunday, August 02, 2009

Garden Matters

Yesterday evening I prepared a couple of web albums with pictures of our garden but, unfortunately, encountered a few problems when I attempted to upload them to add to our Luv4Sinners website (paintings, poetry, personal), recently transferred by Webring from our soon to be defunct Geocities website.

Having spent several hours pottering about in the garden, both this morning and afternoon, with frequent intervals simply idling on one of the garden seats. I thought it was time to do something with these albums. This evening I prepared a welcome page, to accompany the albums, and uploaded them to a new free site on Bravenet. "HELMAL's GARDEN" can be visted at http://helmalsgarden.bravehost.com/main.html. If you omit the main.html, you'll quite simply land on one of the albums rather than the welcome page (I was too lazy to modify the individual html pages of the second album I created, thus leaving that album as the "index").

You're welcome to visit HELMAL's GARDEN.