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PostPosted: Sun 28 Sep, 2014 4:26 pm 
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seeingclearly wrote:
A petition regarding a young woman from Denmark dropped onto my computer over the weekend. I had not heard of her case, and did not want to sign unless I knew more about her. She has apparently been sectioned and is being held against her will. She has ME, and is said to be going downhill. I have no idea how to understand her case, or why she is in this position, as all reports say she is adult, and has been taken into the institution where she is now. What did come up in my search, which wasn't too deep, were two things. First that there are similar case/s in the UK, and second this document, http://funktionellelidelser.dk/fileadmi ... erial_.pdf, which when I read it concerned me greatly, not least for some of its antecedents and relationships.

The biggest concern I had though was that people with little understood physical conditions that may well prove to have organic causes are being re-defined and classified by psychologists and psychiatrists as being 'functional'. I have a little experience of this kind of attitude to long term illness, in that I know someone, now retired, with MS, who was given this label a few years ago, and had to fight to have it removed. The person concerned has worked, and brought up children and struggled since her mid twenties with a form of relapsing remitting MS which has now considerably undermined general health, and no longer remits to any significant degree. This we are told is fairly normal for older patients with MS. So it was a nice try by the doctor concerned, but eventually an own goal because there was substantial evidence to the contrary.

The reason I am bringing this here for what I hope will be some clarity is that these redefinitions appear in the new 'official' (read US) classification of psychiatric disorders, which is pretty widely accepted around the world, with little or no challenge to its authority, yet they are re-classifying things which are outside of their field of expertise.

The young woman in the petition is called Karina Hansen, she has ME, and is said by her sister to now be non-responsive, and was unable to recognise her sister when she visited. She is said to be treated by the protocol above, something which has also been done to a British patient living here in the UK. The process uses a lot of CBT processes, something which we have seen integrated into the WRAG and even JSA commitments. I have no problem when such things are used appropriately, but do not believe they can be used to help people get jobs when there are none, or to convince people they are well when they are sick. The point at which it lost credibility for me was when I realised that one of the conditions that they are trying to re-classify as 'severe bodily distress' is IBS, which is a pretty disabling condition. I also balked at the title of the document. I suppose I find it wrong and despicable that vested interests are re-classifying things that science does not yet understand.

Oh, and pages 33-41 are very interesting, and did I just spot the name Wessely or some contraction of it? Hmm. Oh, and I did sign, I thought the whole thing stank.


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PostPosted: Sun 28 Sep, 2014 4:26 pm 
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seeingclearly wrote:
Another link. These are the people treating Karina Hansen. http://dxrevisionwatch.com/2013/02/03/i ... and-two/2/


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PostPosted: Sun 28 Sep, 2014 4:26 pm 
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ephemerid wrote:
This is actually rather sinister.

With regard to ME, it has been the case for a very long time that many doctors regard it as a behavioural problem rather than a neurological disorder of unknown aetiology with variable physical manifestations.
There are some real horror stories about how ME patients are treated in the UK, despite the fact that various support groups have campaigned long and hard, with evidence, to support their contention that ME is a real illness.

It bothers me that other neurological disorders, like MS (which is much easier to diagnose by definitive testing) may be treated the same way; neurological disease can affect brain function and thus feelings/behaviour, but the root cause of neurological illness lies in the brain/spinal cord as opposed to the mind. This has been proven time and again with MS and the more common disorders.

The same is true of IBS - it is frequently a precursor to underlying Ulcerative Colitis or diverticular disease, and whilst there can be an exacerbation of symptoms when the sufferer is under stress, the stress itself hasn't caused the inflammation.
There are lots of inflammatory illnesses like IBS ( asthma and arthritis being cases in point) which are not well understood - the inflammatory mechanism occurs for unknown reason a lot of the time, but the results still need treating medically.

I really dislike this tendency to dismiss things in this way. The history of medicine is littered with examples of doctors thinking things are all in the mind when it is later proven beyond doubt that there is a pathology there when technological advances are capable of detecting it. It would be both kinder and intellectually more rigorous to admit when they simply do not know - and treat symptomatically.

The bio/psych/social model is being accepted wholesale by people who should know better - and it is being misused and misapplied by people who do not understand it for the sole purpose of denying illness where it exists.
Some of the Unum stuff is dreadful - it talks about adoption of the "sick role" and "behaviour modification". Reprehensible.

Simon Wessely believes that there is a trigger which sets off Chronic Fatigue Syndrome (eg. a virus) but he also believes that CFS is perpetuated by dysfunctional illness beliefs and coping strategies which need CBT or similar to ameliorate. He claims that a piece of research which showed that there was a viral cause in two-thirds of CFS cases was not relevant because it failed to consider childhood abuse and psychological causes for it. Well, he would, wouldn't he? He's a psychiatrist.

It sounds as though poor Karina is dying. Of ME. Which is a behavioural issue? I don't think so.


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seeingclearly wrote:
What struck me instantly about the protocol was that it was in English not Danish, and just how dreadful it is. It has remarkable similarities to those things they were putting Jobseekers through. But being out of work is not the same thing as being seriously unwell.

I thought the same about Karina, and that if she is the case they want to break to prove their theory she is unable to do it. If so her situation is desperate. I hope the Danish protesters, and those supporting them will make some headway. I have come across people with ME, one eventually had typhus cultured from her bloods, she had been in Rome many years before during an outbreak of a disease she had never even heard of. When treated for it she started to make a recovery. And was almost pathetically grateful for the chance of leading a normal life. Well, who wouldn't be. What do they think people actually would gain from years of being bedbound, incontinent, and desperate. Or in constant pain, because that is one of the targets too. Money does not even begin to make up for it, and attention, in my experience, moves away from sick people pretty fast.

I have long hennaed hair. A couple of years ago a lady close to my age with very active MS, on the same bus as me, said, "Oh yeah, I used to do the red thing too, until I realised it didn't make me look normal either." We looked at each other and laughed almost till we cried. We made a pair, she couldn't stop moving, and I could hardly move at all, both totally dysfunctional, we must have looked bonkers. I'd give my eye teeth to have a bit of 'normal', and in spite of the disability movement promoting a fierce pride in being able to achieve with a disability, I bet there are few who wouldn't want normal if it was within any kind of realistic reach. It offends me that people perpetuate the myths that there are multitudes of able people who have created an alternative reality out of disablement.


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PostPosted: Mon 27 Oct, 2014 12:39 am 
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ME is a difficult one and should only be diagnosed after things like MS are ruled out.
Yes, there is a problem with wrong diagnosis, but that happens across the board in all kinds of illness.

Knowing people with MS and people with ME, I'm inclined to believe that ME is primarily psychological, but feel it's important to remain open to good research.


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