Carole…

…speaking through art, poetry and humour…oh and politics too!

The Caged Bird’s response to The Lancet 14.01.15

The following is shared with permission from a friend who doesn’t wish to be named….but let’s call her ‘The Caged Bird’

If you want to snuggle down with a cuppa and read her words of wisdom I’d be ever so grateful and please share across social media too the greater awareness we create the sooner we can stop having to fight this battle we have…thank you.x

“Hello, folks. WELL … after a somewhat trying day, one awoke to yet another useless, ignorant, arrogant and dangerous article on how ‘exercise is good for ‘CFS/ME” and how we with ‘CFS’ fear it making us worse so we are essentially to blame (as well as it being ‘all in our minds’, for the most part – which of course is why we are banned from donating blood and organ; in case we pass our ‘madness’ on … You’re laughing at the stupidity there too, I expect! *rolls eyes*).

Well, that’s because exercise DOES make us worse – at least those *with* ME to begin with!

I refuse to re-post the article; it’s against my principles to copy and paste such claptrap.

So, for anyone not fully in the know and wants to know more (frankly, anyone without ME should read this):

There hundreds of thousands of people who are ill, world wide.

ME – Myalgic Encephalomyelitis – is muscle inflammation of the brain stem, in effect. But it is classed as a neuro-immune disease (specifically neurological by the World Health Organisation), and I personally suspect it is actually more to do with the immune system than anywhere else. Like many and most illnesses and diseases, it is the immune system malfunctioning that is causing the primary problem, which then leads to other problems.

ME has been known about for a long, long time; there have been documented outbreaks in the UK as well as other countries, going back over a hundred years, at least; and even Florence Nightingale was said to suffer it. But the difficulty is knowing what IS, almost certainly, what we know as ‘ME’ (in a hundred years, I imagine it, and so many other illnesses and diseases, will have a different name entirely), and what is something else, be it a post-viral, another strain of ME which perhaps presents differently, or another illness entirely! Indeed, ME itself could be a specific type of virus or retro virus (like HIV). It could be autoimmune, resulting in the body attacking itself after specific triggers; it could also be the breakdown of the immune system in a way inherent to this one specific disease, be it cause unknown or cause specific!

ME was turned into ‘CFS’ by the USA, ultimately due to the fact that – during its beginning reign in the 80s – HIV/AIDS outbreaks were already growing by the day, so many people were rapidly dying and, as a result, insurance companies were having to pay out millions; so it was called that to downplay its severity.

BUT, in the late ‘80s/early ‘90s, a man called Simon Wessely was at the forefront of taking what was known as ‘benign Myalgic Encephalomyelitis’ – thought to possibly even be related to polio or a form of HIV – into ‘CFS/ME’ and HE began a method of diagnosis, citing it as a ‘somatoform disorder’ – ie, ‘all in the mind’; and – in his opinion – that people get themselves into cycles of ‘illness-like behaviour’ following a virus or burn-out and essentially make themselves continuously ill and therefore they need graded exercise and psychological treatment!

His actions have ultimately, via the channels of the psychiatric departments, led to irreversible damage to those with true neuro-immune ME and sometimes even DEATH! Yet he was knighted for his services to psychiatry. We live in a mad, mad world! (But then, Jimmy Savile was knighted, too. *rests case*)

Anyone who has improved or recovered from ‘ME’ I am automatically dubious of, but only in as much as wondering IF they had it in the first place – I am very glad they are well again. But IF they truly did, then what is it they specifically did TO recover? Considering I’ve pushed and pushed and done everything I can think of to stay healthy, my body consistently and continuously rejects all attempts to intervene with its non-stop severe level of illness that has systematically affected and partly destroyed virtually EVERY part of my body. Go figure!

When you have people presenting themselves to doctors here and in the USA, as well as other countries like Australia, because there is no real specific treatment or diagnostic method for NI-ME, people end up being grouped into this bogus ‘CFS/ME’ bracket, when not all will actually have ME, as known by the International Consensus Criteria – which is the ultimate diagnostic reference for true ME as we currently know it.

Many of them will have other things, be them post-virals, lupus, autoimmune diseases, lyme disease caused by tick bites, EDS, POTS, etc – all of which can be very, very nasty and even kill.

When it comes to diagnosis and testing, there are fundamental problems world over: one being that the doctors are not trained to know WHAT they are testing for, and two being the fact they don’t perform the right tests, therefore simple blood analysis, etc, come back negative or borderline.

Contrary to belief, there ARE tests that can prove very specific problems: a SPECT scan of the brain can show changes in blood flow, known as hypoperfusion; immune function tests can show deficiencies in ability to fight infection; nerve conduction can show damage in the limbs of those bedbound; ECGs and echoes can show heart defects; there are known tests upon the mitochondria – the energy of cells – to prove how, when those with ME push, their cells to NOT replenish the way a healthy person’s do, which is why those with ME suffer from post-extertional worsening of their overall condition. The list goes on.

And because people are bunched together and not tested with what IS actually available, then they end up being abused by the medical system. And while a small percentage recover, and some stay the same for decades on end, relapsing and remitting, like MS; many, like myself, get so much worse from continual ‘advised’ exercise that they end up existing a living death, or die as a direct by-proxy result of their reaction to being so very ill.

There is a young girl called Karina Hansen in Denmark, currently still sectioned under their mental health act, because she has ME yet is believed to be psychologically ill. She was forcibly removed from her family home and is suffering greatly at the hands of an egotistical and downright dangerous psychiatrist and his lackeys. It is the ones literally mute and without voices who are so very ill who need the most help, for they are the ones targeted by the psychs who erroneously believe they are mentally ill.

The truth, as Mulder said, is out there. There are leaps and bounds coming with new testing and new evidence, but the waters are frighteningly murky, and what I could still tell those of you not in the know about it all would make you want to vomit in shock and disgust, I guarantee it.

People seem to be under the illusion that it cannot kill. Quite the opposite.

With ME, or any chronic illness or disease, usually it is contributory factors; very few diseases or illnesses actually cause death directly – it’s the knock-on effect, often multiple organ failure or pneumonia.

A heart attack or sudden brain bleed or irreversible trauma to the body or part of the body is a direct cause of death, but there will be a specific reason or group of cumulative reasons behind it.

Cancer causes death (as we well know, sadly, lost so very many to cancer), but actually isn’t often the cancer, but a level of multiple organ failure as the body shuts down.

ME-related death can be infection from the immune factors; heart failure which may or may not have been made worse with chronic weight loss from digestive factors; renal failure from the inability to drink; medical anorexia from inability to digest food; or suicide from being unable to cope with being so incredibly ill for years on end.

I’m not sure how many have died of the disease itself, but I know of a few cases – can’t recall names, just info you find online that one presumes, under the circumstances, is accurate – of those with ME going to sleep and simply not waking up due to sudden heart failure, related specifically to the disease and not inherent bad luck.

I suspect my heart or immune system will cause my passing from here to back home, because of so many heart issues, but also many hundreds of antibiotics and over seventy bacterial infections thus far. But equally it could be from other factors because of my inability to eat much food or tolerate much. I’m hoping for peacefully in sleep, like, but I’m well aware of the many occurrences that can happen.

But, I would argue, on a death certificate, one should always have a primary cause of death as the reason why the death occurred. So, while in my dad’s case, his cause of death was Adenovirus, it would not have happened did he not have aggressively returned non-Hodgkin’s, but that was put as the secondary COD.

So, if I died of heart failure, would they say it was because I’d always been so very underweight and ‘medically anorexic’ at times? – or COD as a ‘neuro-immune disease of unknown origin’ (ignoring the fact the MMR jab either tipped something off and destroyed my immune system function or else caused it entirely)? I’d like to hope for the latter, because the first, regardless of how much my chronic low-weight has to do with it, would not have occurred had it not been for the long-term chronic illness!

MS rarely kills on its own; it is usually a broken hip and pneumonia; ditto many other neurological diseases; AIDS kills because the immune system eventually stops working entirely, but up until that point, on the cocktail, folk can and do live pretty ordinary lives.

ANYTHING can kill if the circumstances are right for death to be the inevitable option. And cancer is triggered by cells going bad. Leukemias are from the bone marrow; bone marrow is the immune system. Hence those with ME being prone to leukemias.

If we’re talking ‘death by ME’ then it will almost certainly be from a knock-on effect, like most death is, rather than the ME itself, I would think.

I personally suspect ME – or as it is known now – isn’t ONE thing but actually a breakdown of the immune system in a specific way that THEN causes the sheer volume of symptomatics that it does, some of which seem to be unique to it.

I can honestly say I’d give anything to simply be exhausted! That word cannot begin to cover how it feels. Try dragging ten double deckers, having been beaten black and blue, while wading through thick treacle, upside-down, and that’s only one symptom, and that’s on a less bad day!

I don’t care for any names other than ‘ME’ or ‘neuro-immune disease’, as at least with those there isn’t the automatic murky waters of bloody ‘CFS’ or similar, but bottom line is that the only way to treat it is to treat what’s causing specific symptoms, and I DO think an awful lot of those with what we know as ICC-diagnosed ME ARE slowly dying; they may not die that much faster than those with other alike things, but if you consider that a body that is obscured from light, from the outside world, from proper nourishment, and constantly in strain and pain and stress, that combination is in turn having a direct effect on the body in a very negative way, leading to muscle wastage, digestion problems that are not always reversible, heart damage and bone-thinning, and those alone are problems which can then lead to more problems and on it goes, and the longer and more severe someone is ill, the less chance of fixing things that – once past the point of no return, in medical terms – cannot be fixed.

I couldn’t blame someone for taking their own life to escape this horror. And while faith and hope MUST be maintained, if ME killed at the same rate as AIDS does, we wouldn’t be in this unholy mess of those who have the power to change things, but don’t, because we are not classically ‘dying’. Oh, yes we are. Perhaps not in the conventional way of thinking about it, but we are having our lives taken by this like nothing else I know with the same level of controversy, misunderstanding and ignorance. And for a sad many, it IS literally killing their bodies beyond any help, be it medical or otherwise. I personally believe that energy healing, Reiki and positive thinking can all help. But there is a limit to what our shells can respond to. And a limit to what can be fixed at this moment in time. The severity and dangers of ME need to be re-established urgently, because it is looking at it as simply chronic and something to ‘live with’ and ‘exercise’ ourselves out of by ‘behavioural therapy’ as opposed to the potential killer it is that is allowing us to be so erroneously and cruelly ignored.

The incredible series The Golden Girls only touched delicately upon the surface, when Dorothy was diagnosed as ‘chronic fatigue syndrome’, which was introduced into season five in a two-part special, specifically because the show’s original creator, Susan Harris, suffered – and continues to suffer – from it.

Chances are Susan has ME

But Dorothy recovered, and in quick time, and did not have neurological symptoms or half the problems those of is with ICC-diagnosed ME have; chances are she had a post-viral – OR else a mild strain of ME that CAN be recovered from – it is entirely possible ME is several types of the same base thing.

But it matters not: the lessons in that two-part episode EVERY doctor and medical professional on earth should watch, appreciate and understand.

And it doesn’t matter, in the end, WHAT it is called. What matters is helping EVERYONE who is ILL; BUT, it is NOT medical apartheid to separate and segregate those of us who are ill with suspected ICC-diagnosed ME from those who might just be burned out or ill with a syndrome that will, in time, get better with – yes – good diet, gentle exercise and the right way of thinking about oneself and de-stressing of one’s life. People think stress is so easily overcome and merely a lack of coping. It is not. Stress can kill. I daresay you’ve heard of enough who have had stomach ulcers perforate and fatal heart attacks through stress?

But nothing positive will happen until PROPER diagnoses and PROPER treatments are developed. And, remember: by banding everyone into the inaccurate and uninformed ‘CFS/ME’ bracket, those who may just recover from their illness are suffering from the ignorance of their doctors by being told little can be done; and those who won’t recover quite so easily – if at all – are left to rot – to DIE – from a vicious, neuro-immune disease or type of disease – and that’s if they are not forcibly incarcerated against their will and subject to humiliating horrors that belong back in the Victoria era.

I’m one of the lucky ones; while I’ve had to deal with the psych department as a helpless child – now, they wouldn’t stand a chance against me.

THIS is why Invest in ME need help more than ever. To try and reverse some of the damage done in the outside world and fund so-important research and treatment, and, most importantly, a way of testing – absolutely – for ME.

These links are, I feel, the best you will find on what ME is and does, as we currently know it:

http://www.hfme.org/

http://www.stonebird.co.uk/

http://voicesfromtheshadowsfilm.co.uk/

https://www.youtube.com/watch?v=owVBCxp9OyY

https://www.youtube.com/watch?v=vD6-nt6cVk0

And please do not forget to share-share-share the Caged Bird videos:

https://www.youtube.com/watch?v=mjZgIkxGrNA&feature=youtu.be

https://www.youtube.com/watch?v=rReJmTniaIQ

Thank you for reading, understanding and helping ME.”

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Written by carolecarrick

January 15, 2015 at 3:57 pm

Posted in Uncategorized

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