Showing posts with label neurological. Show all posts
Showing posts with label neurological. Show all posts

Monday, 1 August 2011

Shoot the medical messenger

I'm actually tickled by this one! I've taken it from a link on one of the forums, who have taken it from the ME Association website ... who have taken it from the Sunday Times. You would think that the Sunday Times would have someone with a medical background proof read their medical articles. Apparently not.

This article has been written in response to the piece on Radio4's Today program. Once again they have completely ignored the part by Dr Shepherd, instead focusing on Simon Wessely's interview. And of Wessely's piece, they have focused on one tiny part, the part that annoyed me the most as it happened; the assertion that people with M.E. would rather have an incurable biomedical illness than a treatable psychological illness. For some reason they assume that the reason many people with M.E. are upset at all the research money for M.E. being put into psychological research, is because we do not wish to be labelled as being mentally ill. It seems to have failed to register with them that most people with M.E. are already on anti depressants, suffering from depression, or anxiety. Most of my M.E. suffering friends suffer from at least one psychological difficulty. None of us have any shame in admitting to it though. We simply do not feel that M.E. is also a psychological illness.

But I digress. You will notice that the writer of this article does not actually know the difference between a psychological condition and a neurological condition. I am guessing they think 'it's in the head' pretty much sums it up.

Taken from thefreedictionary.com:
Noun    1.    psychological condition - (psychology) a mental condition in which the qualities of a state are relatively constant even though the state itself may be dynamic; "a manic state"
Noun    1.    neurological disorder - a disorder of the nervous system.

And just to be clear:
nervous system n. The system of cells, tissues, and organs that regulates the body's responses to internal and external stimuli. In vertebrates it consists of the brain, spinal cord, nerves, ganglia, and parts of the receptor and effector organs.

In other words ... it has a biomedical root.

So, after having ceased laughing at the obvious faux pas of this creative writer, I was then perplexed as to how he could ascertain that "some sufferers cling with grim and livid determination to a non-existent biomedical explanation". Read that again; he knows that M.E. has no existing medical explanation? Can he share with us how he knows this? The evidence? The research? Pretty please.

His whole article is written in such a tone as to make fun of people who suffer with M.E.. This is serious and I shouldn't be laughing. I really do hope that most people reading it will see that he obviously does not know what he is talking about; he made a huge mistake in showing his ignorance regarding mental and neurological conditions, and The Sunday Times slipped up badly in not having an expert proof read the article. I am saddened that anyone can think it fair to make fun of a serious condition; I only hope that when The Sunday Times receive a plethora complaints regarding his idiocy that they revoke his payment for doing so.


‘Shoot the medical messenger – see if that’ll cure you’, Rod Liddle in The Sunday Times, 31 July 2011
by tonybritton on July 31, 2011


From The Sunday Times, 31 July 2011 (comment piece by Rod Little)

Shoot the medical messenger – see if that’ll cure you

Medical experts who put forward controversial ideas should investigate their theories and not give in to ‘extremist’ sufferers

They are hopping up and down with fury at the ME Association, the organisation that helps people suffering from what used to be known as “chronic fatigue syndrome” but now, for politically correct reasons, is known as myalgic encephalomyelitis.

Actually, I say they’re hopping up and down, but given the nature of their affliction, they’re probably sitting quite still, really. I meant hopping up and down as a figure of speech. Either way, they’re very angry. The problem was an interview on the BBC Today programme with a leading researcher into the causes of chronic fatigue syndrome, Prof Simon Wessely.

He believes the illness, which results in debilitating tiredness, aches and pains and so on, probably has a neurological basis.

As a consequence, he has received menacing phone calls and even death threats from “extremist” ME sufferers. So too has another researcher, Prof Myra McClure, who says she will now have nothing more to do with the whole business because she’s fed up with being abused.

It seems that those who suffer from ME, which used to be known as yuppie flu, do not wish to be stigmatised as malingering mentals, which is what they fear will happen if the illness turns out to have a psychiatric rather than biomedical basis.

On the ME Association website they don’t actually threaten to kill Wessely; instead you are left with the impression that he is pursuing this line of inquiry for mysteriously infernal purposes, and that he knows nothing about anything, and that he is part of a conspiracy with the whole psychiatric profession and the Today programme, especially Sarah Montague, and the government to cover up the real truth about chronic fatigue syndrome.

Indeed, such is the foaming paranoia on this site that you begin to suspect that if ME does have a neurological basis, it’s probably going to be the least of their mental worries.

The truth about ME, they assert, is that it is the consequence of some sort of weird retrovirus. In other words, it’s a proper illness, which we’ve caught from someone or something; it’s been given to us, it didn’t originate with us.

It is a peculiar and distressing, if not untypical, reaction from people faced with a mysterious and incurable disease. As Wessely himself says, in blank incomprehension, they would rather the disease be the consequence of a retrovirus that could possibly be fatal than be the result of a neurological disorder for which there is at least a form of palliative treatment.

No matter what evidence is marshalled by the likes of Wessely, some sufferers cling with grim and livid determination to a non-existent biomedical explanation; they assume, one supposes, that if it is primarily a mental condition then they have sort of brought it on themselves, and are in some way to blame for their affliction (which is a nonsense, of course).

Their denials and paranoia remind me a little of the reaction of some parents with autistic children who resist with fury the suggestion that this distressing condition might have been brought about partly as a consequence of assortative mating, as suggested by Prof Simon Baron-Cohen, rather than through mercury floating around in the atmosphere or the water pipes, or indeed the MMR vaccine.

The now wholly discredited MMR theory certainly served the psychological requirements of some unhappy parents, being not merely a clear cause but one that was imposed on their offspring by government diktat.

Baron-Cohen, meanwhile, received a lot of flak for this theory but, as he puts it, just because it is controversial doesn’t mean it should not be investigated.

Either way, some people seem to be terribly protective of their ailments, over which they believe they have a sort of droit de seigneur. Research of which, in their ignorance, they disapprove is seen as part of some plot to do them down and consequently underplay their suffering, and they decide its proponents must be vilified.

Saturday, 28 May 2011

Emily Collingridge shares her experience of M.E.

On Facebook there is a group named 'YES! M.E. is a genuine condition. Unite to build awareness!'. Today, someone posted this. It made me cry. I've never been as dreadfully ill as this girl is. I've been close, twice. What I went through was torture; I cannot imagine what she lives with every day of her life :(

"Severe ME is utterly devastating. It's time for proper research and proper care". That is the simple, but vitally important message that Emily is desperate for the world to hear. Beginning months ago, she has written a letter which she hopes will spread her message across the Internet and garner support for those severely affected by ME. Please help her achieve this.

(Permission to re-post)

Emily's Appeal

It has been said that the following is hard to read. But that is all we ask you to do: to read it, to forward/re-post it and to pledge your support for the many thousands of people like Emily who have to LIVE it.

"My name is Emily. I developed the neurological condition Myalgic Encephalomyelitis (ME) when I was 6 years old. In April 2011 I turned 30. I still have ME.

ME coloured every aspect of my childhood; it painfully restricted my teens and it completely destroyed my twenties. Now, as I move into the next decade of my life, I am more crippled than ever by this horrific disease.

My doctors tell me that I have been pushed to the greatest extremes of suffering that illness can ever push a person. I have come very close to dying on more than one occasion. If you met me you may well think I was about to die now - it's like that every single day. After all these years I still struggle to understand how it's possible to feel so ill so relentlessly.

My reaction to small exertions and sensory stimulation is extreme. Voices wafting up from downstairs, a brief doctor's visit, a little light, all can leave me with surging pain, on the verge of vomiting, struggling with each breath and feeling I'll go mad with the suffering. Of course it can also be as bad as this for no particular reason - and often is. I cannot be washed, cannot raise my head, cannot have company, cannot be lifted from bed, cannot look out of the window, cannot be touched, cannot watch television or listen to music - the list is long. ME has made my body an agonising prison.

My days and nights are filled with restless sleep interspersed with injections, needle changes (for a syringe driver), nappy changes (as well as experiencing transient paralysis and at times being blind and mute, I am doubly incontinent) and medicines/fluid being pumped into my stomach through a tube. My life could be better if I had a Hickman line (line which goes into a major vein and sits in the heart) for IV drugs and fluids, but such a thing would likely kill me. I'm on a huge cocktail of strong medications which help, yet still most days the suffering is incomprehensible. During the worst hours I may go without the extra morphine I need as I feel so ill that the thought of my mother coming near to administer it is intolerable - this despite pain levels so high that I hallucinate.

I live in constant fear of a crisis driving me into hospital; our hospitals have shown such lack of consideration for the special needs of patients like me that time spent in hospital is torture (eased only by the incredible kindness shown by some nurses and doctors) and invariably causes further deterioration.

Many days I feel utter despair.

But, unlike some sufferers, over the long years in which I've had severe ME (the illness began mildly and has taken a progressive course) I have at least had periods of respite from the absolute worst of it. During those periods I was still very ill, but it was possible to enjoy something of life. So in these dark days I know there is a real chance of better times ahead and that keeps me going.

My entire future, and the greatly improved health I so long for, however, currently hinges on luck alone. This is wrong. As I lie here, wishing and hoping and simply trying to survive, I (and the thousands like me - severe ME is not rare) should at least have the comfort of knowing that there are many, many well-funded scientists and doctors who are pulling out all the stops in the quest to find a treatment which may restore my health and that the NHS is doing all possible to care for me as I need to be cared for - but I don't. This wretched, ugly disease is made all the more so through the scandalous lack of research into its most severe form and the lack of necessary, appropriate support for those suffering from it. This is something that must change.

And that is why I tell my story; why I fight my painfully debilitated body to type this out on a smartphone one difficult sentence at a time and to make my appeal to governments, funders, medical experts and others:

Please put an end to the abandonment of people with severe ME and give us all real reason to hope."

By Emily Collingridge 2010-2011

You can support Emily and everyone with severe ME by joining the "Severe ME/CFS: A Guide to Living" Facebook group http://www.facebook.com/group.php?gid=114380158590669. Both sufferers and non sufferers welcome! See also www.severeME.info."