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.
I love the idea of joining in with an online ‘class’. however it can be incredibly exhausting to even participate during bedrest. It’s a bit too cold upstairs to get enough bedrest as might be good for me and my dog downstairs has minimum welfare needs. We have no human equivalent of the RSPCA to provide minimum human welfare needs in the UK!
(Draft from 10/9/15 completed and published 15/09/2015, 12:44am)
The Sandbox Writing Challenge #5 from Calensariel (Impromptu Promptlings) asks us to explore how we feel we are different from anyone else, in other words, what it is that makes us unique.
I don’t at all like to think I am much different to anyone else, or at least that there are so very many others with similarities of any individual characteristics and personality traits. I don’t think of myself as somehow different and certainly not ‘special’. We are all unique individuals and we all share some universal qualities. For anything I might suggest makes me unique, I know of so many other others with those uniquenesses that answering the prompt becomes impossible.
So, I’m retreating to a safe place to answer this question from – the safe sanctuary of my childhood and differences in comparison to my peer group I was aware of as a child.
I learnt to read and write very young, so much so that in my first infant school class my teacher had to show me how to use punctuation so she could easily make sense of my long strings of words. We had an old typewriter something like the one pictured above. I played at typing and writing with it often, although it was very difficult, especially for small fingers.
In junior school I got picked on a bit for usually finishing my work faster than anyone else – I was a quick writer. (I wish I was as reliable and quick writer now!) We sometimes had to use workcards and I’d finish three quite fully in the time most of the class did one. I gave up slowing down because it became painfully boring.
In contrast to my speed at writing, I used to find on the walk to school in the mornings that my legs would slow more and more the further I walked. I just couldn’t make them move at the consistent pace I’d started out at. I was supposed to walk with my younger brother and we set out at the same time but he’d never wait for me. I was probably almost always nearly the last one to arrive. We each had a turn to ring the morning bell and I only ever got to school in time for my turn once in the whole year. I remember that missing my turn used to upset me.
Although I wasn’t a sickly child as such, I was often sent to the sick room by my teacher because she could see when I was struggling with head pain. I’d go and lay down for a while and go back to class if I felt a bit better after a while. I got sent home ill a lot even when I wanted to stay at school and see if I’d be better a while later, but usually with swollen glands and sore throats and sickness not just the head pain. I was frequently visibly ill during P.E. lessons and made to sit out – until high school when you’re forced to carry on, until you have a doctors letter. I always enjoyed sport though not all that good at it – I did manage to play in the netball team a few times.
By the time I got to high school, with the walk there and having to walk from lesson to lesson in different parts of the school campus, I could no longer concentrate by the end of the school day. I could never do homework after school. I’d do mine in morning registration and break times and usually have it done by the end of lunchtime.
Some classes were so slow I’d have two lots of excercise books open, one for that class and one of homework due to be handed in at a later class. I’d work on my homework while waiting for the class to catch up and the teacher to tell us the next thing to do. I got in trouble for it sometimes but was one for speaking up for myself. It made no sense to me to sit and do nothing while functional enough to manage both unless the teacher was going to give me something else to do. Most couldn’t or wouldn’t because they had their whole class lesson plan and I never ever agreed to do lines and they couldn’t make me. I didn’t see why they should give me a punishment for trying to study during class time even if it was ‘the wrong subject’!
By the time I was in my third year at high school I’d become very ill after a serious chest infection caught during a school exchange trip to France. I was lucky in one way that my illness was obvious and witnessed by teachers. My doctor wanted me to be admitted to hospital I’d become so seriously ill after returning home. My mum had trained as a nurse when she was younger and insisted she could look after me better at home and our doctor agreed. I don’t remember that chunk of it at all.
After six months away from school I started just going in the afternoons, as soon as I’d woken up and got ready and felt able to walk. But then other days I’d be too ill to go at all. It caused some confusion as my doctor had said I mustn’t go to school while so ill and I wanted to go anytime I was well enough so would just turn up and sign in at the office. In a good week I’d make it to school for two part days a week. I’d usually try and get there before lunchtime – or as early as possible – to actually see my friends while there. Otherwise I’d just see them to walk home with after, unless I had to be taken home too ill to stay at school.
Some teachers complained to me that I couldn’t treat school as if a hotel and turn up when I liked. In the end I’d fallen out with most of my teachers, most of whom believed you cannot possibly pass an exam without attending every class, benefitting from their teaching and doing all your homework. I had no tuition and had to spend any time in school in either the art room or the library for all the last two years of my schooling if I managed to get there. My English teacher told me I’d never pass my ‘O’level – I met her in the corridor having just collected my grade ‘A’ and jumped for joy waving it at her.
I wouldn’t have been allowed to take my exams if my mum hadn’t have been assertive and gained support of my year head as most teachers were against my entering exams. I was too ill for half of them but acheived an average number of passes. I had to leave my art exam early and couldn’t go for the second paper and just missed a ‘pass’. Some of the girls were catty about it but they always had something to be catty about at something. Even without the exam I was the only one accepted to the art course at our local college – but was too ill to sustain full-time activity and didn’t take my deferred place the following year because I preferred my part-time job as a shop assistant.
None of the above makes me unique, though I was quite unique among my peers for my tough stance against the unrightful oppression my educators would attempt to deliver. It wasn’t that I refused to accept authority, but that authority had to be just.
Tens of thousands of children and young people (and probably many more) grow up with the same medical condition I had. Hundreds and thousands have the same/similar condition. What is coined as ‘recovery’ or ‘remission’ is often never a full return to health and learning to manage with a baseline of activity that might allow some work but with limited social life. People in that ‘bracket’ often don’t admit to still being affected for the horrendous prejudice and discrimination that still occurs.
I also believe there are many more people from the ‘lower classes’ who will never be diagnosed and manage day-to-day life somehow. Maybe some accept there illness as ‘depression’ – it’s become a popular dustbin diagnosis for a lot of people complaining of tiredness and lethargy and there’s drugs to foist upon them.
Among my ‘peer group of M.E. sufferers’ I often feel like there aren’t many of us from poorer backgrounds and council estate upbringings – and having attended ‘state secondary school’ doesn’t make a person the same ‘lower class’ as I grew up in.
I believe I had ‘it’ (Myalgic Encephalomyelitis) all along. People generally, the NHS, many practise general doctors, the welfare system all expect you to ‘get better’ or experience recovery. How do you get better after nearly fifty years of lifelong illness? You recover to an extent from the very severe periods of illness or the phases of viral associated illness that wipe you out but leave you with severe post-viral fatigue. I think these are misunderstood as ‘M.E. relapses’ when they’re viral illness of new onset. A lot of new onset illness and symptoms are ignored by doctors because M.E. is a catch-all whole body disease or whatever other reasons they have for medical neglect and unscientific practise (like following NHS business focussed guidance).
My mum still says I didn’t have M.E. until the doctors diagnosed it after I was fourteen. She still says that like the doctors told her in my junior school years, my tonsils were poisoning my body. Why they didn’t stop poisoning my body after they were surgically removed then I’ll never know.
(I keep finding myself writing about this when it’s actually one of the last things I’d choose to be writing about. I don’t want to be ‘an M.E. blogger’ but I can’t escape my reality. It always seems selfish and the underestimation of the impacts compared to what are seen as more serious conditions makes it seem like simply whinging. Maybe that’s exactly what this writing became, airing a whinge…)