monthly look ahead – MLA October 2017 – late again innit

screenshot of my poem, link to post in text

Oh dear, i hope a poem attesting to ‘…while no king – no patriarchy – …’ doesn’t appear anti-establishment/anti-royal-family! It’s so deeply concerning, the prejudices we all encounter online moreso these days than ever. Words (and opinions) are not meant to be concrete, they are virtual and shape-shifting…

I’d just copied my original poem from my word-processing screen to post online when an external copier appears to have attempted to snatch a copy too, the selection froze highlighting that section of the last few lines. I posted my poem at my other (main) blog. I call it my main blog because it’s my blog using my proper name. But i blog all over the place here at wordpress (in and on my own account).

I would have been meeting the challenge in better time for MLA, but…

… well, that’s the way of the world isn’t it. Apols that not capitalising my ‘i’ to ‘I’ is annoying for some readers. I’m just plain lazy. In that respect – not entirely no – we were cultured to remember our unimportance in the grand scheme of things here in little england. Nothingham city, to be precise.

So, I can’t remember what on earth was i going to fill this post out with for this month.

Maybe i’ll just leave it here, and think ‘that’ll do’ nicely 🙂

I finally got to see and appreciate on you tube the trailer for a film-documentary ‘everyone’s raving about …’ thanks to this tweet to somewhere to find a springboard link from:

I do want to see the ‘Unrest’ film but it’s inaccessible to most people with Myalgic Encephalomyelitis and raises plenty of concerns regarding the nightmare that is ‘chronic fatigue strategy’ and the ways the problems of disabling illness for people with M.E. have been whitewashed by the CFS campaign and the funding intended for a specific defined patient population has been usurped and misappropriated.

Ironically, ‘Unrest’ is also the title of a 2006 horror film. Now why could i see that for free on youtube but not the american documentary of a lady with an (assuming) undiagnosed neurological stroke type condition, with or without encephalopathy by what little i’ve seen, heard, or read about the reality of the disabling effects and impacts of her ‘chronic fatigue syndrome’ that appears anything but M.E., although probably/possible similar in many ways. And it’s not nice when you know you have a diagnosis proven by verifiable clinical scientific practise (i.e., M.E.) that other people with M.E. might think or say ‘no you don’t’ or ‘I can’t see how…’ and that ‘scientifically-proven’ is misrepresented as scientifically impossible even after research findings based on your blood have been classified by the british government! But possibly that lady’s neuro-condition whether M.E.type illness (in which case she wouldn’t have a chronic fatigue syndrome diagnosis if she were living in my country), but her condition might be treatable with potential stabilising nutrients such as coQ10 or other medicinal products. It’s one way the CFS developments are dangerous for all people with disabling health conditions all around the world! A ready-made way to deny treatment protocols via what appears to be credible evidence based practise founded in what appears to be deliberate corruption and bias! 

I wonder how many British people knew that footage of them might be included in a screening of this nature when they shared time in online video discussions and maybe that’s why the full length documentary isn’t accessible to the British/world M.E. community – and we’re assumed to be a priveleged lot of elitist white people with nothing much wrong with us in comparison to other folk in the world with what are perceived to be far more ‘serious and severe’ disease processes. I know I did not take part. But I would like to be able to access the entire presentation even though CFS is not M.E. – a lot of people are duped into thinking it is, because of misinformation.

It’s interesting to realise that yes, the FedEx talk everyone was raving about is staged and phoney in the presentation of an actress, maybe a relative of the documentary subject/creator acting as an assistant – it’s not the same person’s experience and that lady having a ‘stand-in’ present her talk explains that incongruity issue of it being so difficult to believe when i was watching and listening a little enough – i read the whole of the transcript and it doesn’t read as anything similar to Myalgic Encephalomyelitis barely at all – but the ‘chronic fatigue’ type experience of a distinct diagnosable but undiagnosed neurological condition meeting the ‘CFS’ descriptors enough that had little about it that might truly reflect the collective realities of M.E. patients who continue to experience further harm and neglect as a result of this nightmare CFS situation. The neglect we experienced before was less harmful and less impacting than since this thing started that the world seems to believe is helping us.

So now bio-medical research funding increases will continue to research anything other than Myalgic Encephalomyelitis because CFS funded services EXCLUDES anyone with confirmed, clinically proven M.E. and anyone with any other lifelong disability BECAUSE the CFS strategy is KNOWN to be potentially dangerous for such patient categories!

And gawd, i would much rather be doing anything else than looking like i’ve nothing better to spend my time and limited energy thinking about than ‘oh, poor ME!’

oops, apols if it reads as some Angry Bird sucking too much seedy-fruitcake 🙂 I do hope I’ve no caused offence. Best wishes all! Thank goodness Friday13th is over with…

Advertisements

ME and mine

One of the really BIG problems of having lifelong Myalgic Encephalomyelitis is the misinformation generated widely in societies about chronic fatigue. Nowadays, the popularisation of the dustbin diagnosis of Chronic Fatigue Syndrome (as it was wellknown by in medical circles prior to the formalisation of the CFS strategy) is having devastating negative impacts on people with all kinds of specific medical conditions including cancers, HIV, multiple sclerosis, heart disorders, strokes – you name it and I’d bet you’d find someone denied a true clinical diagnosis and necessary treatment and support services under this bizarre outcome of CFS Strategy misimplementation.

Chronic fatigue is a general population issue and can affect anyone for varying reasons. Post-viral fatigue, similarly. Neither of these conditions of general temporary ill health are ‘a syndrome’. Neither CFS nor PVFS are necessarily M.E. [I experience PVFS as well as my generalised M.E. type health states.]

A smokescreen has been created with very widespread CFS propoganda by swagbaggers and swipesters – even the M.E. charities are forced to play along with furthering the CFS field in order to sustain their funding revenue.

M.E. patients are denied support as a result whilst the general public assume we receive support through CFS implementations. Nobody bothers to go more than two or three clicks to check information enough and so dole out repeated nonsense and assume they know because so-and-so-(web)info-states…

Nobody much reads the entire NICE2007 guidelines to understand the breadth of clinical knowledge, the limitations of NHS provision, the patient expertise and the knowledge of clinical experts. Propoganda still leads us to believe ‘doctors cannot diagnose this’!

The NICE2007 guidelines very clearly state that anyone diagnosed with M.E. or any other lifelong disabling illness cannot be diagnosed with Chronic Fatigue Syndrome. This guidance was due to have been updated in 2014, but I didn’t notice any consultation, nor any news of it, but also haven’t checked yet. There was no such diagnostic label as M.E./C.F.S. in the 2007 guidance but C.F.S/M.E. is diagnosed after an initial Chronic Fatigue Syndrome referral is confirmed as illness with Myalgic Encephalomyelitis.

This is a very complex issue that I didn’t wish to write about here today. To an extent I just have! [Only for interference with my use of my blog that distracted me away from my original post intention!]

It’s incredibly annoying, having a confirmed clinical diagnosis of Myalgic Encephalomyelitis, with devastating lifelong disabling impacts, being expected to meet a class-based stereotype of what my human condition should look like. It’s also annoying when government money intended to help patients is usurped for job-creation schemes for psychological based therapies to the detriment of biomedical research. of course, there are more annoying things, and for us all!

Scientific findings since 1984 have been locked away under the OSA, allegedly – possibly along with my own genetic data from my original severe phase as a teenager and possibly those of other patients.

Books like the one I was reading in the photo that refused to upload to my media library at my other blog, lumping causes of ‘fatigue’ under ’emotional and behavioural problems’, trivialising even general fatigue, and ignoring so many physiological factors, as if you can think yourself out of fatigue states, only adds to those things that can make therapies more harmful for the patient.