International M.E. Awareness Day 2020

I have not been well enough at this time of the year since 2017, so this is my first blog-post to mark the international Myalgic Encephalomyelitis awareness day in three years. (Underneath this blog-post is a list of words and terms, click on any of the ones referring to M.E. to find some of my previous outpourings.)

Under the UK’s current N.I.C.E. Guidelines and by my NHS hospital specialist, I am classified as having the severe form of M.E. There are three official categories: mild, moderate, & severe. However, the severe category itself covers a range of folk from those who are mostly bed-bound, like myself, to those who cannot ingest food or water and have to be kept alive via feeds.

In my previous blog-post I wrote:

“M.E. is not about being tired all the time. It is not a psychiatric illness as the UK’s psycho-cabal (along with their colleagues in Holland & Denmark) would have us believe. It is a multi-systemic, neurological disease (recognised for decades as such by the WHO, currently under ICD-10 G93.3). There are 106 conditions on my health spreadsheet; 104 are connected with Myalgic Encephalomyelitis. Only three are related to sleep. Under the WHO’s ICD-10 I have conditions under sections I, IV, V, VI, VII, VIII, IX, X, XI, XII, XIII, XVIII & XIX.”

I have mulled over the possible threat to my privacy and so forth, but have decided to publish the full list of my conditions. Obviously I have had to hide certain personal details to prevent identity-theft. I am not publishing this list to garner sympathy. My hope is that the reader will come to realise just how ghastly this disease is in its depth and breadth of conditions and symptoms. Many of these are covered in the broad and all-enveloping rubric of the term Myalgic Encephalomyelitis, many are classed as co-morbidities; but which is which is very much still debated.

The list below has not been updated since 2016. However, since that time my medications have altered. I have left the original medicines listed so one has a sense of what is or, in most instances, is not available.

The European Parliament recently unanimously voted for more funding for research into the biological causes of M.E., because despite millions suffering across Europe (and indeed the World), very little is invested into medical research. Individuals with the worst form of M.E. have worse quality of life scores than any other measured illness, including cancers and AIDs. Because we are hidden in our homes, we are ignored or dismissed. Please consider donating time or money to a Myalgic Encephalomyelitis charity or research proposal.

My Myalgic Encephalomyelitis - My M.E.

Whilst my arthritides have been better this year, due to the unusual warmer, drier weather we have experienced, the Myalgic Encephalomyelitis has been its typical pain-in-the-derrière.

Apparently, for the first time I attended the annual choral Saint Nicholas concert on my own two pins rather than in my wheelchair. And I even managed to send Christmas-cards too - and prior to the actual holidays!

But all too often I have been trapped abed, unable to experience Life. I have it fortunate, for although my condition is considered “severe”, I am not in the most severe category.

The worst 25% of severe are: trapped abed always; eyes covered in blind-folds; ears covered in noise-cancelling head-phones; drip-fed; and, unable to be touched.

M.E. is not about being tired all the time. It is not a psychiatric illness as the UK’s psycho-cabal (along with their colleagues in Holland & Denmark) would have us believe. It is a multi-systemic, neurological disease (recognised for decades as such by the WHO, currently under ICD-10 G93.3). There are 106 conditions on my health spreadsheet; 104 are connected with Myalgic Encephalomyelitis. Only three are related to sleep. Under the WHO’s ICD-10 I have conditions under sections I, IV, V, VI, VII, VIII, IX, X, XI, XII, XIII, XVIII & XIX.

[Image description: woman in black, sitting on a park-bench, looking out at a frozen landscape. It reads:

HAVING M.E. IS LIKE SITTING ALONE ON A BENCH WATCHING AS YOUR LIFE PASSES YOU BY & WAITING TO BE ASKED TO PARTICIPATE AGAIN. ]

For me it is the slow-death of Life being sucked away long before my time is due. It is being in constant - medically unmanageable - pain. Sometimes the pain-levels are acute and I am left to suffer. It is not knowing from one day to the next what one will be capable of doing. It is the neglect by the medical establishment of patients and the disease itself. The MRC & the NHS invest almost nothing, despite there being some 250,000 people with M.E. (#pwME) in the UK. It is the failure of the MSM to investigate, nor even to accurately report stories, failing almost invariably to check the facts.

M.E. kills - slowly, torturously, ceaselessly!

This is my M.E.

ME

ME

Lying abed

hour after hour

Quotidian longueur

Year follows year

inexorably

A prisoner

trapped in the bed

hidden by the blind

out of sight

outside

I want to be out there

living Life

not feeling ennui

or intermittent despair

Twenty birthdays past

when I was free

to simply be

and I danced then

cutting through

floating on

the air

I lived fully

in my body

running

leaping

flying

swimming

singing

joking

laughing

dancing

experiencing

intense Love

kissing

caressing

developing

affinities

my soul

This body keeps me here now

the flesh that struggles to struggle

no longer able to snuggle

in a lover’s embrace

nor for that matter

in a friend’s hug

This same body that’s killing me

slowly

but oh

 so painfully

Weary spirituality

Hope fades

colour drains

into multiple grey-shades

Insufficient energy

to risk mourning

promises of love

No sensuality

No plans

No Future

No happy-ever-after

Readying pain by pain

for an unsolicited here-after

Longing for much more

to be free

of anomie

of constant yearning

of constant envy

to be pain-free again

to awaken a too long-dormant heart

to experience intimacy

to sleep normally

to once again

read a novel cover to cover

entertain friends to a multi-course dinner

play adult games in bed

spontaneously

to be just the older

perhaps wiser

Me

It’s Severe M.E. Day. I am a pwME, that is a person with Mylagic Encephalomyelitis and I suffer from the severe form of M.E. My cognitive abilities are not up to writing a blog-post this year. Instead, I give you “Autumn Leaves”, some 90’s chill-out music by Coldcut. The lyrics cited & sampled are:

“But I miss you most of all,

my darling,

when Autumn leaves start to fall.”

Class Action Against PACE Triallers?

Firstly I am no expert in law, science, ethics, statistics or any area covered by this article; I am just a layman.

[Image description: histogram table comparing PACE triallers' stated effectiveness of given treatments compared to results recalculated by independent statisticians & M.E.-supporters, demonstrating the exaggeration by the triallers and proving no "statistically significant advantage" for posited treatments. Taken from & © http://www.virology.ws/2016/09/21/no-recovery-in-pace-trial-new-analysis-finds/]

We are twelve months on from the publication of the statistical review of the data released, after a court order to do so, by the PACE triallers. That review demonstrated that the triallers massively over-exaggerated success rates. Since then, PACE has been heavily criticised my scientists, academics, statisticians and M.E.-sufferers, and lampooned for its blatant disregard for science let alone fact or reason.

My understanding is that the ethics committee that approved the original protocol for the PACE trial is responsible throughout the process for ensuring that the trial was run ethically and responsible for oversight of the trial. When the protocols were altered the ethics committee was thus accountable for approving any changes. In this instance the changes appear now to have significantly altered the trial to such an extent that the ethics committee was obligated to refer the matter back to the trial's funders to ensure that they also were content for the revised trial to proceed.

If this is correct, then - assuming they were apprised by the ethics committee - the funders are culpable as well as those who conducted the trial for the misinformation and thus all subsequent harms. A class action or similar, in order to obtain collective redress for harms done, would therefore seem appropriate against inter alia the Department for Work & Pensions (DWP) and the Department of Health (DoH).

Were they not informed, then the ethics committee is culpable and its members should be brought before their respective professional panels for appropriate disciplinary action.

Additionally, I should have thought that those who led the PACE trial ought now also to be held to account before their own professional bodies for the serious failings in their conduct. I imagine they also might be considered co-respondents in any class action (or similar) case.

Even were any such class action (or similar) to ultimately fail, it would at the very minimum raise awareness of the utter uselessness of the PACE trial's alleged results and thus lead to changes in support in the medical establishment for cognitive behaviour therapy (CBT) & graded exercise therapy (GET) for people with M.E. (pwme).

Any thoughts?

Masturbation & ME

Masturbation tends to be a taboo subject. Can you recall the last time you discussed the issue? For most readers it will be never. For those who have, probably only with a select few intimates. I suspect this blog-post will be considered #nsfw. It ought not to be, as various research has demonstrated the health benefits of regular masturbation.

It is often averred that ninety-nine percent (99%) of men masturbate and the other one percent are lying. It is a truism to be sure: but the fact is most men do masturbate at some point in their lives. The statistics for women (wimmin) vary considerably. I suspect this is in part due to the questions put to them.

A very narrow definition of masturbation is the sexual stimulation of one's sexual organs. Babies and toddlers can often be spotted playing with their genitalia. As a trainee-teacher I recall an embarrassing P.E. lesson in which a young girl sitting in front of me had her hand up her knickers and was quietly playing with herself whilst the class & I were discussing the children's achievements. On that occasion, I chose to ignore what was happening as the child was not being observed by other children and was causing no disruption - other than to my cheeks! However, in the four years I was studying for my honours degree, the topic of masturbation in the classroom was never discussed, mentioned or even cited.

I am going to suggest that masturbation is more than genital stimulation; indeed, it is about self-pleasuring. Masturbation, especially but not solely amongst women, is about exploring what are one's turn-ons: caressing an inner thigh; tweaking a nipple; stroking a throat; and so on… This kind of broader definition leads us to an understanding as to why masturbation is good for one psychologically, let alone explaining the release of endorphins over a much longer period than the race to ejaculate - the essence of many men's definition of masturbation, the wank.

As discussed in a blog-post several years back (here), ejaculation and orgasm are not one and the same thing: one can ejaculate without orgasming; one can orgasm without ejaculating.

These endorphins are also released when we contemplate pleasurable fantasies. Fantasising is a creative type of thinking, it uses our imaginations. It is also a means to exploring different sexual activities and whether or not one wishes to partake. For all too many sufferers, actual sexual activity is beyond us for a multitude of reasons; so for us sexual fantasy is the only sex with a partner/s we shall experience.

Apart from the psychological benefits inherent in this broad definition of masturbation, there are also physical ones. For men, one of the health benefits of regular self-pleasuring is supposedly a lower risk of prostate troubles. From my layman's comprehension, I am assuming this works along the notion that muscles need exercising and failure to do so leads to wasting, etc.

So, finally getting to the nub of this post, what does masturbation have to do with myalgic encephalomyelitis? The reader is probably aware (if not, please click on the word in the list below to be referred to further articles on the subject) that ME's major symptoms include inter alia unrelenting fatigue and lack of energy. Many people with ME (PWME) learn to pace themselves by working out how much energy they have and calculating how much energy they need for each task or activity.

It is this lack of energy and, perhaps, even fear of the repercussions of exercise, (such is masturbation and even thinking, for all activities use the body's energy & resources) that prevent PWME from masturbating. The thinking involved in fantasising can bring on painful headaches. The act of masturbation can drain one's energy. There is also guilt to contend with: how can I pleasure myself, when I have not done anything to help in the home today; and similar reasoning. And then there is embarrassment: what about one's carer/s; they will have to perhaps change the bedding, remove a wet towel or clear away stained tissues.

I counter - and I am talking as much to myself here - that PWME need to masturbate. Our collective amour-propre is constantly under attack from relatives & friends, who do not or choose not to empathise, to the mostly unsympathetic, neo-liberal media. To heck with fear, guilt & embarrassment! We need to feel good physically, emotionally & spiritually.

Using the wider definition of masturbation as outlined, we PWME can self-pleasure everyday: lightly brush a forearm; gently rub one's lips with a finger; fondle a breast; dab the back of a hand; and so on. These are small sensual actions; but cumulatively can stimulate those wonderful hormones and build up one's sense of self-worth and stimulate sexual self-esteem.

Masturbation & ME? A resounding YES!

[Image description: the writer skinny-dipping in a spa-pool

enjoying the caress of the warm wavelets -

well, what did you expect!]

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Today is International ME Awareness Day (#IMEAD2017). This blog-post is published to co-incide with this event in order to highlight the many needs of PWME. Please consider donating money, time or energy to an ME charity. Thank you.

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NB I have NO medical training. The advice contained in this article is generic. If in doubt about how masturbation might effect the reader, consult a professional medic!

Tumblr & M.E.

At the beginning of August I wrote a blog-post entitled "Ads Are Killing Tumblr" in which I explained my reasons for departing Tumblr. However, having pondered how Tumblr currently works, I realised I could still use it and avoid the vast majority of advertisements, especially the moving, flickering ones which give me headaches due to neurological issues. I am not going to publicly detail how I get round the ads; but if one sufficiently deliberates the workings of Tumblr, I have no doubt that one will find a way.

So, one may be wondering why I have come back to Tumblr; what attracts me to the site. Well, if you read the aforementioned article, one will be aware that I have a brain issue. I suffer from Myalgic Encephalomyelitis (click on the phrase below for more articles and information), commonly abbreviated to M.E. and known as C.F.S. in the United States. I suffer from progressive aphasia (ICD-10 G31) which leads to an inability to comprehend & formulate language thus difficulties with reading, writing &/or speaking. This symptom without the speech difficulties I also endure is better known as dyslexia (ICD-10 R48), which for me is usually temporary but has lasted for periods of up to six months: sometimes as a result of exertion or post-exertion; at other times for no apparent reason.

Looking at images then means I can continue to stimulate my brain and imagination, even without the abilities to read and write. Also by sharing them, I am able to engage in some social activity (for I am mainly bed-ridden - approximately eighty percent of my time), whereby I can see others sharing the images I have posted to my own Tumblr-blog. For me that is more interaction than I would otherwise experience in my bed-cell. Additionally, this does not drain me emotionally and physically, as would real person-to-person communication and socialising.

Above are some screen-shots of crippledqueeranglo-europeanranter. By clicking on one or other of them, one can obtain a larger image. The site contains images of artworks including paintings, art photography and statuary. I should point out that my tumblr-blog is not safe for work (#nsfw) due to containing nudity and some erotica. So then, if such may shock or even offend the viewer, do not visit my site! Those of you who do take a peek, I hope you enjoy. ;)

Severe M.E. Day 2016

There are according to the UK's National Institute for Health & Care Excellence (N.I.C.E.) body, per their document {Chronic fatigue syndrome / myalgic encephalomyelitis (or encephalopathy): diagnosis and management: NICE guidelines [CG53] Published date: August 2007}, three categories of M.E.: mild; moderate; and, severe. I have been diagnosed by my NHS hospital consultant as suffering "severe" Myalgic Encephalomyelitis or M.E. in accordance with this classification.

I average, over the year, fourteen-and-a-half hours of sleep in every twenty-four. However, there is no pattern to my slumber. Sometimes I sleep up to twenty-two hours in a row; at other times I am insomniant. On occasions I have inverted sleep patterns: asleep during the day, awake at night. 

It is only in the past few years that I have found a pain-killer that subdues the pain to a bearable degree; but with nasty side-effects, I only take when I am climbing the walls in pain. Nonetheless, most years I experience only one or two days totally pain-free.

I keep a spreadsheet of some eighty-five major symptoms from extreme ones like temporary paralysis to more mundane ones like temporary (from a few hours up to six months) dyslexia. The vast majority of my symptoms are neurological, from: the aforementioned dyslexia; dyspraxia; dyscalculia; hypersensitivity to odours, touch, vibration and noise as well as photophobia; forgetfulness - from names of individuals I know very well, including my own, to how to cross a road safely; dyscognition; loss of vision, or control of one or more limbs - so no driving for me; muscle twitching, spasms & cramps along with pins-and-needles; fibromyalgia; poor proprioception and equilibrioception - mixed with orthostatic intolerance is a recipe for daily falls (so I sport a pendant-alarm); hypersomnia; hyperalgæsia; chronic headaches & migraines; and so on…

The hypersomnia is another way of saying I suffer chronic fatigue or C.F.S. This is a symptom of many diseases including inter alia Cancer, Lupus, Fibromyalgia (F.M.S.) and Multiple Sclerosis (M.S.).

Like many, if not most M.E.-sufferers I also have several co-morbidities and separate conditions, that for me together create a downwards health-spiral. Over the past two visits to see my specialist, she assesses my over-all condition as having stabilised after years of deterioration. As yet, after more than twenty years of being ill, there has been no amelioration. I remain hopeful probably despite reason!

Whilst the majority of the year I am abed in what I quaintly call my bed-cell, I have better days when I can be taken out to do essential things like shop (mostly done on-line), visit the dentist or G.P. or optician or hospital. On my really good days I like to see friends. Most winters I go to southern Spain to benefit from their much more stable and warmer climate. It does not improve my M.E. symptoms, but massively subdues my various arthritides, thus reducing pain levels.

As I stated above, I am classified as a severe sufferer of M.E. There are however some sufferers who are so ill that they are on intravenous drips, they cannot do anything for themselves at all, and they have to lie abed constantly - often with blindfolds and noise-reducing head-phones. Thankfully, I have not pejorated to that extent.

Myalgic Encephalomyelitis kills.

The slogan reads:

Myalgic Encephalomyelitis

Cover Up

"I split my clinical time

between the two illnesses

(ME & HIV),

and I can tell you

If I had to choose

between the two illnesses

I would rather have H.I.V."

[2009, Dr. Nancy G. Klimas M.D.]

As a sufferer I am never - even were I to become well again - permitted to donate blood, plasma, tissues nor organs, except for medical research in the U.K.

[Image description: screen-shot from NHS Blood and Transplant website confirming my statement]

If you read this far, thank you. Perhaps next time you encounter someone suggesting M.E. is all in the mind, a life of Riley lying in bed all day watching television, perhaps you might consider challenging their misconceptions. Cheers!

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Over the years I have written several blog-posts on Myalgic Encephalomyelitis or ME. You can search for the articles using both those terms from the word index at the bottom of this page.

 

 

Why I Share Personal Information Publicly

The following poster was produced by an MS group, but is equally relevant to ME, Lupus, FMS, etc.

The slogan reads:

I'M NOT ASHAMED OF MY DISEASE,

BUT I WISH I DIDN'T HAVE IT.

I HAVEN'T DONE ANYTHING TO BRING

IT UPON MYSELF, BUT I'M DOING

EVERYTHING TO FIGHT IT.

I SPEAK OPENLY ABOUT IT IN ORDER

TO RAISE AWARENESS.

 

I personally pondered a while before reaching the decision that I must publicise the effects of my ‘invisible illness’. When I am out and about, it is due to my experiencing a relatively good day. The vast majority of the time folk do not see me abed in my bed-cell swollen, in pain, suffering various neurological symptoms that militate against quotidian life let alone social contact.

Alas, in today's society where it is now acceptable to bait & hate disabled folk, it is necessary to provide personal accounts of suffering to counter the accusations of “faking it” &/or hypochondria and undermine the MSM lies & propaganda.

As I am reasonably literate and compos mentis some of the time, it is my personal moral duty to make every attempt I can to stand up for disability rights.

If my posts annoy you, feel at liberty to turn off notifications.

For those of you who tolerate my posts, thank you.

And those of you who are kind enough to share the occasional post, my deepest gratitude - and I endow you with brownie-points & fairy-dust! %D

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MS = Multiple Sclerosis

ME = Myalgic Encephalomyelitis

FMS = Fibromyalgia

MSM = main-stream media

Crippled, Queer, Anglo-European Ranter's Fourth Birthday

 

Last year I was too exhausted to celebrate my blog's third birthday. So I am writing this ahead of the date this year to ensure I remember to mark its fourth birthday!

 

[Image description: cakes! %P]

I can scarcely believe that there have been nearly 412,000 viewings. My greatest success numerically (with 145,468) by far is my blog-post from June 2012 Alan Turing: a Queer Hero, which I suspect was boosted by the release in 2015 of a biopic on the said computer scientist & mathematician.

The second most viewed item is the same as two years ago, from October 2013, Bloom Brasserie @ Bloom Live, which has reached nearly 83,084 hits. A shame that the venue closed some "two months later - hopefully not due to my review!" 

And still in third place is my second report on my favourite male musician, from June 2013, Matt Alber in Birmingham (not Alabama!), which has been visited on some 74,708 occasions.

Whilst large numbers do not read all my postings, I am just as happy when handfuls of folk read my poems. Especially pleasurable is when some reader picks one from early on in the blog's history, as this says to me that the person has actually looked out the poem for some reason.

 

[Image description: map of top-ten countries; list of top-ten countries with number of page views.

The screen-shot was taken on 24th April, two days prior to the fourth anniversary]

Two years ago my blog was mainly visited by UK and US readers, then France, Germany and Sweden. At that time these five countries constituted two-thirds of my readership. Now the US represents more than half of all my viewings. Then the UK followed very closely by France. Germany is still in fourth position. But Russia has leapt up the chart to fifth position, with Sweden still making the top-ten at number nine. 

The index of terms that appears at the bottom of every blog-page has increased to 189 words that appear four or more times.

The top-fifteen terms are listed in the chart above.

#1     disabled with 67 references

#2     review with 41

#3     disability with 35

#4     blog with 30

#5     Manchester & poetry each with 27

#7     wheelchair with 25

#8     DWP with 24

#9     WoWPetition with 23

#10   Facebook, service & Spain each with 22

#13   Benalmádena, queer & UK each with 20

The above chart lists the rest of the double-digit entries, a further twenty terms. There are now a total of thirty-five terms with ten or more references, as opposed to seventeen back in 2014. All the words listed in 2014 are still contained in the two charts above. Thus, my prediction back then, that the same issues would continue to be of interest to me, was pretty much spot-on.

Dozens of new terms have been added to the four-plus club. The most notable (with five or more) are listed in the above chart. The new entry with the highest references is Newcastle-upon-Tyne. I took a holiday there, so had lots to relate. Other than that the terms cover travel, health, food, politics and disability issues. I suppose that fairly sums up my life!

Blogging Against Disablism Day 2016 (#BADD2016) is on 1st May. I am hoping to host a gallery of artworks that may speak to folk with disabilities as well as a blog-post on "Art for All". Additionally May is International M.E. Awareness month, so I am hoping I shall be well enough to add something to that. Additionally, I have my fingers crossed that I can write up about more of the things I did on my recent trip to Berlin, supported and cared for by two wonderful assistants (thank you both). Perhaps the reader might be enticed to return for one of more of these.

As ever: many thanks to my seven stalwart followers (feel free to join them if you care to do so) and of course the many, many readers across the globe (except Antarctica - still!). xxx