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Professor Simon Wessely says he is misunderstood

natasa778

Senior Member
Messages
1,774
But it really did hit home how utterly stupid this whole ME mess is in the UK, people being told they have ME when clearly they dont, and people like myself with clear problems getting no help whatsoever. If Wessely and his cronies manage to convince people like my mate they have cfs, its no wonder they actually believe their behavioural disorder theories are correct. Its a good job my friend made his own mind up, and realised he is was just overworking.

And then W and his cronies manage to convince those people they convinced into thinking they have ME into taking part in their stupid studies.
 

biophile

Places I'd rather be.
Messages
8,977
This thread reminds me of "Don't Let Me Be Misunderstood" by The Animals.

But I'm just a soul whose intentions are good,
Oh Lord, please don't let me be misunderstood!

http://www.azlyrics.com/lyrics/animals/dontletmebemisunderstood.html

Baby, do you understand me now
Sometimes I feel a little mad
But don't you know that no one alive
Can always be an angel
When things go wrong I seem to be bad
But I'm just a soul whose intentions are good
Oh Lord, please don't let me be misunderstood

Baby, sometimes I'm so carefree
With a joy that's hard to hide
And sometimes it seems that all I have do is worry
Then you're bound to see my other side
But I'm just a soul whose intentions are good
Oh Lord, please don't let me be misunderstood

If I seem edgy I want you to know
That I never mean to take it out on you
Life has it's problems and I get my share
And that's one thing I never meant to do
Because I love you
Oh, Oh baby don't you know I'm human
Have thoughts like any other one
Sometimes I find myself long regretting
Some foolish thing some little simple thing I've done
But I'm just a soul whose intentions are good
Oh Lord, please don't let me be misunderstood
Yes, I'm just a soul whose intentions are good
Oh Lord, please don't let me be misunderstood
Yes, I'm just a soul whose intentions are good
Oh Lord, please don't let me be misunderstood
 

biophile

Places I'd rather be.
Messages
8,977
Tymes Trust: (2) Children suffering from chronic fatigue syndrome (CFS) are being pressurised into having psychological treatment which may not be appropriate, according to a BBC survey.

This is a circular and semantic proposition. If the diagnosis is one of psychological ill health, then psychological treatment would be appropriate and pressure would not be an issue it would be a matter of medical responsibility for the health professionals (as required by law) to ensure that a young person was given the best treatment available.

2002 Report to the CMO on CFS/ME said:
Children and young people are profoundly affected by public and professional uncertainties over the illness. ... Ignorance and lack of understanding of the condition are perceived to exist among healthcare professionals as in society, with a widespread perception that “children don’t get CFS/ME”.

The following may be mere non-quantitative opinion about prerogatives, but if it was my child with ME/CFS symptoms in the UK medical environment of psychologisation and dismissal, I would not be automatically assuming they need psychological treatment only because a healthcare professional issued a diagnosis of psychological ill health. Parents also have a responsibility to ensure that their child is given the best treatment available to them, but it is not necessarily clear to anyone involved what that is.

Where do these assertions come from – none of the Tymes Trust material states how many people comprise its survey panels, so by what definition is disproportionate arrived at ? In fact nothing in Tymes Trust work appears to have quantitative validity.

Although unlikely to negate your concerns, I did find these (bold added):

When the BBC began to take an interest in misunderstandings surrounding the illness, it ran its own survey (BBC Panorama Survey, 1999; http://news.bbc.co.uk/1/hi/events/panorama/506549.stm), which I codesigned. There was a 62% response from 741 families surveyed, disclosing that 59% of families had been told that their child's illness was psychological; 15% of parents had been told that their own psychological problems were the cause; 7% had been subject to child protection procedures; and 4% had been “labelled” as cases of Munchausen syndrome by proxy. None of these suspicions were to my knowledge upheld, and statistically they seem anomalous. It seemed that the children's illness was so severe for so long, and that both medical and educational professionals were finding it impossible to believe that these were physical impairments when the usual tests were inconclusive. We now have ample evidence of physical abnormalities in this illness, and I cite only a fraction of them.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1860612

(2002/2003) In total, 126 families shared their experience with us. We know of many others who were either too intimidated to speak out or just too exhausted by caring for their children day to day to respond to our invitation.

http://www.tymestrust.org/pdfs/theforgottenchildren.pdf
 
Messages
646
The following may be mere non-quantitative opinion about prerogatives, but if it was my child with ME/CFS symptoms in the UK medical environment of psychologisation and dismissal, I would not be automatically assuming they need psychological treatment only because a healthcare professional issued a diagnosis of psychological ill health. Parents also have a responsibility to ensure that their child is given the best treatment available to them, but it is not necessarily clear to anyone involved what that is.
I certainly wasn't arguing that parents should have to accept diagnosis without question or that parents have no role in establishing the best medical treatment for their chidren - I was responding to the material in the Tymes Trust and BBC documents which start from a position of claim supported only by selective testimony. We don't know what the health status of any of the children of parents contributing to the TT and BBC material actually was, all we know is that parents were claiming that their children exclusively had M.E. The proposition from the parents/TT/BBC was that wrong or inappropriate interventions were forced on children solely because of medical prejudice over M.E - but we have no evidence to support this because the only source of material was parent testimony.

To be clear, I am not arguing that what the TT and BBC were focussing on, was without merit - undoubtedly children and young people with M.E/CFS have been as exposed to poor medical practice as much as, if not more than, adults with the condition. However that must not blind us to the difficulties that Paediatricians, GPs and Social Workers face when dealing with children and young people who have illnesses that are poorly understood, particularly where a working relationship with parents/carers may have proved difficult to establish. The reality is that in the UK at least, there is a legal and societal expection that professional intervention will take place where there is any suspicion of potential 'mis-care' by parents/carers that is likely to impact a child or young person's health. This is not M.E/CFS specific - it is the way current UK society is.

Whether one interprets the UK situation as the actions of an overbearing State, or a proper level of protection for children and young people is a matter of perspective. From the M.E/CFS point of view, progress will only be made in improving the situation for children and young people with M.E/CFS where change that reflects wider societal and legal concerns is argued for. Coming up with a fanciful presentation of thousands of kids under threat of imposed secure unit in patient care (which is what some of the postings in this thread appear to amount to), is no basis to achieve real improvement for the treatment and support for children and young people with M.E/CFS, and their carers.

IVI
 

user9876

Senior Member
Messages
4,556
To be clear, I am not arguing that what the TT and BBC were focussing on, was without merit - undoubtedly children and young people with M.E/CFS have been as exposed to poor medical practice as much as, if not more than, adults with the condition.

I don't think the issue is that children are treated worse than adults. I think many people with ME have come across difficult and unbelieving doctors. The problem with children is that these doctors (or teachers) can start child protection procedings to force treatment or because they simply don't believe in ME or CFS. The Tymes trust document cases because parents come to them. What they are saying is that there is a repeated problem that is affecting a number of children, they are not giving figures for the proportion of children affected. I think the child protection process can take its toll on a child with severe ME with the activity causing a relapse.

I do know someone whose child was taken into care and they were accused of FII. Turned out the child didn't have ME but a different chronic condition which could be acurately diagnosed. The GMC were not interested in a complaint against the psychiatrist diagnosing FII.

Whether one interprets the UK situation as the actions of an overbearing State, or a proper level of protection for children and young people is a matter of perspective. From the M.E/CFS point of view, progress will only be made in improving the situation for children and young people with M.E/CFS where change that reflects wider societal and legal concerns is argued for.

I don't think this is the case. There are rules that child protection social workers should follow and there is guidance issued for dealing with ME by charities (AYME and TT) as well as the CMO report. These can get ignored.

Coming up with a fanciful presentation of thousands of kids under threat of imposed secure unit in patient care (which is what some of the postings in this thread appear to amount to), is no basis to achieve real improvement for the treatment and support for children and young people with M.E/CFS, and their carers

IVI

There is a certian paedatrician who says things like "it cann't be CFS its been going on for too long. The original diagnosis was right but I've cured that" (yes by giving them a leaflet) and then goes on to say "I'm not saying that xxx is not tired but I think its functional disassociation from the stress of being ill." She will then push the patient to the local CAHMS group going further than anything written in a letter telling them it pervasive refusal syndrom and the child should be put in a unit in london. And that is seeing the child two years previously and for less than 5 minuites. Yet that is from someone in a position of power.

I know bad things are happening, I don't know to what proportion of children but I know that they are preventable with better practice. That is the important point.
 

SilverbladeTE

Senior Member
Messages
3,043
Location
Somewhere near Glasgow, Scotland
but the system is designed ot prevent any exposure of abuse of children BY THE STATE AND ITS ACTORS!

the BigPicture (TM) means all, it has drowned out the reality and genuine "common sense", and so we'll see very ugly things indeed, because exposure and thus prevention/spiralling increases of abuse and criminality, have not been stopped now or before.
 

Enid

Senior Member
Messages
3,309
Location
UK
Oh how sad it is for him - but no doubt he can walk down to shop, rise with some mobility, bowels that do not let down, grin smugly as his contribution to ME has been zero.
 

antares4141

Senior Member
Messages
576
Location
Truth or consequences, nm
I saw a video on youtube somebody posted on FB where simon wessely comes right out and says he doesn't feel sorry for us. Has anyone seen this video? Have the link? I want to watch it again just to make sure I didn't imagine this. Wanted to record it but don't have a subscription to YT. It seems so obvious they have done irreparable damage to us with the studies they have published and things they have said, ideas they have promoted about CFS/ME.
 
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89
@antares4141 Since Wessely’s in the game of diagnosing people with psychological disorders based on his feelings about it, basically, I’d guess that Wessely has narcissistic personality disorder (one of the very low in empathy disorders). I’m familiar with a narcissist who’s often claimed to be misunderstood or says things like “I’m not actually a bad person” (I just act like one), I believe this disorder is pretty common.

I haven’t seen the video…
 

antares4141

Senior Member
Messages
576
Location
Truth or consequences, nm
@antares4141 Since Wessely’s in the game of diagnosing people with psychological disorders based on his feelings about it, basically, I’d guess that Wessely has narcissistic personality disorder (one of the very low in empathy disorders). I’m familiar with a narcissist who’s often claimed to be misunderstood or says things like “I’m not actually a bad person” (I just act like one), I believe this disorder is pretty common.

I haven’t seen the video…
I would totally agree he and his cohorts all the red flags. I just don't have time to list them now. Certainly saying publicly "I don't feel sorry for them" if someone did that to some other demographic it would be considered hate speech. It is suggesting to his audience "you shouldn't either" And when you put it in context with what people with ME/CFS have to endure. In my opinion absolutely qualifies as hate speech. I wish I could find the video again!
 

heapsreal

iherb 10% discount code OPA989,
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10,086
Location
australia (brisbane)
I would totally agree he and his cohorts all the red flags. I just don't have time to list them now. Certainly saying publicly "I don't feel sorry for them" if someone did that to some other demographic it would be considered hate speech. It is suggesting to his audience "you shouldn't either" And when you put it in context with what people with ME/CFS have to endure. In my opinion absolutely qualifies as hate speech. I wish I could find the video again!

We just have to realise is that his line of work isn't a real science but more along the lines of witch doctor type medicine and school yard bullying.
 

antares4141

Senior Member
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576
Location
Truth or consequences, nm
In my opinion Wessely and his type are in it for the bucks and prestige. There is trillions of dollars of liability being tied up because CDC won't investigate, and NIH won't fund CFS/ME research. Insurance companies, chemical manufactures, institutions that have been promoting this garbage for over a century, government agencies all benefit from this. And of course the people in the profession that promote it don't want egg on their face. And they will do anything to conceal the truth including lying. Not always necessarily directly but other more insidious ways such as omission, and that the lie is plausible. What Wessely and his types have pushed is plausible just highly unlikely at least the way they have packaged it. It has about as much plausibility as recovered memories or some other type of pseudo science which has been discredited. But again there is trillions of dollars of liability in the invisible illness suppression industry. Not so much for recovered memories so science won out there. The invisible illness suppression industry has dug a hole they can't get out of they have to keep digging. That is their only choice. And otherwise credible officials look the other way or are complicit just like official's were in NAZI Germany with all the atrocities that took place there. Their is a whole psychology behind why otherwise decent people do this
 

antares4141

Senior Member
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576
Location
Truth or consequences, nm
This link should skip ahead to the alarming conclusion which explains pretty well the similarities we are seeing today with the way authorities are treating people with invisible illnesses. You might say "they are not murders" and I cannot argue that point. But they have condemned generations, hundreds of thousands, of people to a living kind of death with their dismissal of this illness and refusal to allocate funds to biomedical research. The way I see it those who generate misinformation like this that leads to the type of mistreatment of their victims we see. And the ramifications it has for them. No biomedical research, no financial assistance for the condition, the stigma associated with CFS/ME. They are committing hate crimes. They have dug theirselves into a hole they can't get out of. In order to save their own hides they have no choice but to continue what they are doing . https://youtu.be/DqiburgGzN0?t=943
 

antares4141

Senior Member
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576
Location
Truth or consequences, nm
Also I should have said "invisible illness denial industry". I knew what I meant to say just couldn't find the right words. That we are practically in the 2nd quarter of the 21'st century and this kind of corruption is still rampant is atrocious.
 
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