Simon Wessely on XMRV

[zero]

Speaking as someone from the UK I can tell you that this is classic Wessely. He appears to be genuine and sympathetic and reasonable. Sadly his actions speak louder than words. He has created a terrible climate for ME patients in the UK, absolutely dreadful and has often been guilty of denigrating the illness and it's patients. For one example he was involved in a case where a severely ill virtually paralysed young boy was subjected to horrific psychiatric "treatment" including throwing him into a swimming pool, i.e swim or drown. He couldn't swim.

This is the real Simon Wessely. Please don't be taken in by his oh so reasonable persona. Whilst I can't condone threats or anything of that nature against him, or anyone, I can understand the anger that lies behind these peoples' threats. Actually he loves to play up to this and always mentions it. I doubt whether it is anywhere near as bad as he claims. Just another example of this slimy man's behaviour.

Precisely. The man is a psychiatrist - he is a master of lies and manipulation. Do not be fooled by the persona he puts on. His actions clearly show the person he really is... and it ain't pretty.

 

[catch]

Hi Holmsy

Regarding some of the other posts on this thread, frankly I don't think we need Simon Wesley to tell us that we're probably not all suffering from the same thing and perhaps we should be a little less threatened by that thought.

I think it helps the psychiatrists push their barrow when they create the perception that people with ME/CFS are a hodge podge of crazy people with a few genuinely ill cases sprinkled in. That reduces our power politically instead of being 1 million strong in the US, the hodge podge theory breaks you down into weak little groups that are easy to ignore. As I said, in the 'fatigue spectrum' there are certainly people suffering from a range of different maladies, but in well defined ME/CFS (see the Canadian definition) I think there are going to be fewer subgroups than others would have us believe.

As for threatening this guy and his family, I agree that's not the way to go. Best to keep holding him to account for his research, keep supporting the researchers who keep proving him wrong and channel our anger more productively.

 

[cold_taste_of_tears]

I am in interested in this as an ironic behavioural trait of patients who are bullied and marginalised.

When minority faith groups burn down shops, riots, and make death threats - little is said - purely from being upset someone upsets their belief system (religion). Soon these groups change laws, and freedom of speech.

Yet when a select group of Gestapo Psychiatrists, falsify medical fact, and kill people through advising and order neglect - we remain terribly well behaved, gain no new right, gain no new protection and they are free to say and do what they wish.

A strange world we live in.
The only explanation is we are too sick to take to the streets ourselves.

 

[Min]

I don't condone threatening him or his family.

If I had a severely affected child suffering for years, or one who had committed suicide because of him and his colleagues taking all the research and treatment funding and offering nothing but contempt and psychobabble I might just feel differently.

I have been severely affected for 22 years now. The situation in the UK is no different now to when I first became ill.

Prof Wessely works for the insurance firm UNUM, for PRISMA, a firm that sells graded exercise and cognitive behaviour 'therapies'to our National Health Service (all that M.E./CFS sufferers are permitted over here. He works for the military in the Uk and US, denying that Gulf war Syndrome is real.

He was brought in by the UK government to deny the reality of the Camelford Water Poisoning incident, in which the public water supply became contaminated:

http://news.bbc.co.uk/1/hi/england/cornwall/4531668.stm

" The accident itself was a real disaster, but the subsequent cover-up was a scandal" - Lord Tyler

 

[Martlet]

I don't condone threatening him or his family.

If I had a severely affected child suffering for years, or one who had committed suicide because of him and his colleagues taking all the research and treatment funding and offering nothing but contempt and psychobabble I might just feel differently.

I'm with you here, Min. I never condone violence, except as a means of stopping violence in progress, but if one of my family members had been treated like many of Wessely's patients, I don't know what I would be like.

Some have missed the point of writing him polite emails though. By remaining civil, we are more likely to receive answers, and I think that in his answers, he condemns himself.

 

[MEKoan]

I don't think anyone has missed the point, Martlet. Perhaps you are new to the strange world of Simon Wessely but he goes blithely on leaving an endless trail of suffering and carnage, sometimes quite literally, in his wake.

He shows absolutely no mercy or remorse, ever. He is a scary guy.

peace out

 

[Martlet]

I don't think anyone has missed the point, Martlet. Perhaps you are new to the strange world of Simon Wessely but he goes blithely on leaving an endless trail of suffering and carnage, sometimes quite literally, in his wake.

He shows absolutely no mercy or remorse, ever. He is a scary guy.

peace out

Not new to him. Remember that I lived in the UK during the early years of my sickness and was already familiar with his nastiness. I could relate tales to make your hair stand on end, because of him and his ilk, but I still think the only way to draw him out is to challenge him politely. I want him to have enough rope to hang himself before the XMRV connection is proven by replication.

 

[MEKoan]

Not new to him. Remember that I lived in the UK during the early years of my sickness and was already familiar with his nastiness. I could relate tales to make your hair stand on end, because of him and his ilk, but I still think the only way to draw him out is to challenge him politely. I want him to have enough rope to hang himself before the XMRV connection is proven by replication.

I didn't know that Martlet, but I don't think he's going to hang himself any time soon. I think everything he wrote in that email, for distribution, was designed to have just the effect is has on people: Is Wessely coming around?

And, those who don't know his history wonder what all the fuss is about; he sounds like a nice guy and should be given "credit" for replying.

I don't think so but I understand the response. My instinct is to feel sorry for people who do terrible things to other people.

I extrapolate from my own experience and nothing feels worse than having hurt someone. Then, I read Wessely's own words and I see he has no mercy.

He has no mercy.

 

[Holmsey]

I am in interested in this as an ironic behavioural trait of patients who are bullied and marginalised.

When minority faith groups burn down shops, riots, and make death threats - little is said - purely from being upset someone upsets their belief system (religion). Soon these groups change laws, and freedom of speech.

Yet when a select group of Gestapo Psychiatrists, falsify medical fact, and kill people through advising and order neglect - we remain terribly well behaved, gain no new right, gain no new protection and they are free to say and do what they wish.

A strange world we live in.
The only explanation is we are too sick to take to the streets ourselves.

Re. To sick to take to the streets. I'm one of the luckier ones if you can call it that, I'm still working it's the rest of my life I've lost, but according to my GP, and the CFS specialist my insurance employer paid for this isn't unusual. So, does anyone know if there's a direct action group out there, or if not, is anyone up for being co-founders, given that there's supposed to be 250,000 of us in the UK then only 10% walking wounded is 25,000 people. Gordon Brown defaults to Sir Liam, Sir Liam studiously ignores us sighting the MRC. Imagine the effect of bringing central London to a stand still while 25,000 or more sick people ask for help. The only way to really shake things up, as we've recently seen with expenses is to bring about so much scruitiny that positions are threatened.

There's an election around the corner so is it time, you bet it is. So one of you long sufferers tell me how best to achieve it and lets go for it.

A CFS direct action day, I like the sounds of that.

 

[Martlet]

I didn't know that Martlet, but I don't think he's going to hang himself any time soon. I think everything he wrote in that email, for distribution, was designed to have just the effect is has on people: Is Wessely coming around?

Isn't it strange how differently people read things? I thought his reply made him look more like a weasel.

 

[MEKoan]

On benefit of the doubt, I suspect that he does care about his patients, but is completely and utterly on the wrong track while being totally convinced that he is absolutely right. It is possible to be sincerely wrong.

Hi Martlet,

I don't think he cares about his patients unless one can care for people for whom one has absolutely no respect.

I agree that he seems to be convinced that he is absolutely right but it seems this springs from his limitless arrogance and is perpetuated by the fame and success he experiences; the "secondary gain" is enormous given how profitable his behaviour is for the system which rewards him.

How he conducts himself going forward will tell the tale. We have all made mistakes and we all have the option of contrition and amends. We will have to see what Professor Wessely makes of this.

peace

 

[Mark]

Whoah!

Where did the thread go?

I've been busy + crashed so I've been lurking for a few days, log on today to find that the email conversation with Simon Wessley has gone!

The edited part that's gone was a polite email from Condra to Simon Wessely asking a few questions and asking for permission to post his response publicly, and a fairly long email back thanking for asking permission and saying it was fine to do so.

The email for which permission was given, and was removed, should be retained; make sure you keep all relevant records of it. (email archive). And can anybody clarify the legal risks of disobeying a directive not to quote? I'm only aware of libel/defamation etc as relevant, is there a solicitor in the house?

It's a shame, I was looking forward to working with Mr Wessely. As others had posted, this could be his last chance for redemption, many of us had not dealt with him before and were willing to give him a chance to do some good: if he says he has now read the research and comes on board saying publicly he believes in it, that would be a big statement that could make a big difference in terms of moving things forward more quickly.

One thing was clear from the once-posted emails, he has not studied the literature. By his own admission CFS is not now his primary research focus, and some of the questions in his first email betrayed an extraordinary level of ignorance of the basic science - he basically hasn't read any of it, certainly not the WPI FAQ and other supporting material. He described something sounding like 'compassion fatigue' when he mentioned all the previous false dawns he's seen. As a psychologist you can understand that wading through literature from many different fields of medicine is going to be tough going for him.

Anyway, if the legal question is: whose job was it to review the literature for the CFS area in order to advise govt policy? then any emails proving or suggesting ignorance of key research developments would be well worth retaining. Perhaps a legal eagle has recently been making similar points to Simon.

 

[Martlet]

Hi Martlet,

I don't think he cares about his patients unless one can care for people for whom one has absolutely no respect.

I think there is an old school of doctors who are fully capable of caring about people in the abstract while demonstrating little or no respect for the patient sitting in front of them.

I also agree that Wessely has made a lot of money from other people's misery and I am not sticking up for him. I think the only area of disagreement might be whether we should deal with him politely. I believe we should, if we are still able. I also do not believe he will do anything to redeem himself, but would prefer to be able to fade into the background, but I don't feel able to allow him to do that as long as he is making comments to newspapers. So, now that I have his email address, I will continue to write to him - politely - to ask what his views now are, in light of each piece of information that comes out. Eventually, the noose will pull ever tighter until he either hangs himself professionally OR changes his mind.

 

[Martlet]

And can anybody clarify the legal risks of disobeying a directive not to quote? I'm only aware of libel/defamation etc as relevant, is there a solicitor in the house?

Mark, it depends which country you are in. UK law on libel/defamation is much stricter than in the USA, but I can still understand why the email was removed, even though I am not sure that a person can legally have an expectation of privacy with emails that must pass through several computers to reach their destination. I think it remains iffy.

 

[Holmsey]

Holmsley,

People have been threatening Wessley, his family for years and years and years.

He never stops commenting on CFS and he doesn't stop sending emails.

It's up to individual people to decide what action they want to take and how to do it.

Whoh, don't know how I missed this earlier, so if I follow you correctly, it's ok to threaten someone as long as you can establish a clear history of such abuse...isn't that just bullying?

He never stops commenting on CFS, I appreciate he's now looking at other areas but surely you would be upset if he simply replied, 'no sorry, not my job anymore'?

So individuals can do what they like, yes, and society in my name can go right ahead and jail them with my blessing if it involves threatening anyone, but especially kids who have no idea what daddy does for a living.

 

[Holmsey]

I hope this helps you understand how old timers like me got so bitter and twisted. I got ME in 1985 before the term CFS had even been invented. In those days we got treated with a little respect and taken seriously - we had a new illness that nobody understood but proper research was being done.
Then CFS was invented in 1988 and suddenly I was a head case. I never mention to my GP that old diagnosis of ME because I was told in no uncertain terms that I would "make myself unemployable" if it were on my medical records that I had a psychological illness. End of story, end of help. I have had absolutely no help from the NHS since then, no blood tests, no treatment, nothing.

I have lived for 25 years, my whole adult life, trying to hide from my own doctor how ill I actually am. If that would not be enough to make you angry, then what would?

I've read what you posted, and followed the links, while I can see where you are from a general view point, you seem to be saddling Wessley with rather a lot that isn't actually down to him. Certainly over the past three years I've had no problem with my GP, one locum seemed to be living in times past but I've seen three speciallists, one in the field, two for symptoms, all concluded I had CFS, not one of them caused me any fear related to that diagnosis, I'd honestly change GP's, they're clearly not all bad.

 

[Holmsey]

Well, I am hoping these posts help to answer you question about the reaction of the ME/CFS community in the UK regarding Mr. Wessley and the psychiatric model.

They certainly do, and if I can stand back for just a minute, given that I'm a sufferer and had never heard of Simon Wessley until reading this thread I'll give you my impressions.

There are a lot of angry people out there, and I've not walked in their shoes so I'm not going to dispute that condition, I've been angry with doctors and I remain angry at our goverment, NHS, MRC, etc. etc. But anger has to be used constructively otherwise all it achieves is to alienate us from the main stream.
There are a few posts which I can't find coroberation on, there are many others suggesting that Wessley thinks all CFS sufferers have a mental condition.

I took the following from an earlier reply to my post and asked Simon Wessley if there were any truth in it because frankly I just found it unbeleivable -

From this thread (forget whom, picked this from the SW mail).
'However I would like you to know, also, that people in the UK with CFS regularly get sectioned and forcibly administered drugs which alter or damage their mental capacities. Some spend their lives in mental institutions. Once you are in one, and officially sectioned, it is a criminal offence to leave. This happens to many people who have had no blood tests whatsoever to verify if there is a physical explanation for their symptoms. Simon Wessley is the leader of the "psychiatric" lobby which has created this situation.'


His reply included this -

(SW)
'People can of course get sectioned under the mental health act if they are

a) mentally ill

b) refusing treatment that is likely to help their condition

c) a danger to themselves or others

and they need to be all three'
(End SW)

I haven't tested the veracity of this against actual law, mainly because it doesn't strike me as unlikely but if anyone thinks this is a lie, or a bending of the truth please let me know.

Continuing in conversation with the man, probing for more of an insight, I was sent a PDF, don't know how to make it available, but if anybody wants it shout and I'll ask Simon Wessley to send me a link, he tells me everything is publically available so if you want to test that here's your chance.

The title was 'Diagnosis of psychiatric disorder in clinical evaluation of CFS'
Alicia Deale PhD, Simon Wessley MD.

It outlines the conditions, controls and other parameters for a study of CFS patients identified by GP's and or others as having a psycological basis for their illness, the results section included the following stats, and remember Wessley put his name to this -

Of 68 patients, 31 had been given a psychiatric diagnosis, (19 - GP, 7 - Hospital doctors, nurologists - 5). Of this group 21 were found to have been wrongly diagnosed.

Now forgive me if I'm wrong but you can't saddle a man who is reversing the diagnosis of others, in reference to CFS sufferers, away from mental illness as thinking we all have a mental condition.

 

[Alice Band]

Holmley,

You obviously have no idea of what you are talking about.

SW used his son's class to bulk out (and keep out PWCFS and ME) when he did he talk on shellshock in London.

Yes, he had a load of schoolchildren there to fill out the room and try and keep any activists out.

A very irresponsible way to act when his family is "supposed" to be at such risk - one might ask?

The truth is that no one has hurt any of his children.

Yes, children of criminals and others suffer because of the actions of parents. It's very sad indeed. Who knows what the future will bring to him and them. They may grow up to disagree with him. They may be embarrassed if there is further court action.

No one with ME or CFS has been jailed.

Stick to the facts if you want to make an argument please.

 

[Mark]

Alice, I think Holmsey's just trying to get to the truth of the matter, and he's right, when he comes new to the subject, to question and examine what's being said. Many of us have been aware of these issues for many years, but if we come across too rabid about it to Holmsey, what chance do we have of convincing anybody else?

Holmsey, please keep posting and raising these questions, because we clearly all need to define, for everyone's benefit, what Wessely is accused of.

For what it's worth, I suspect the most fruitful focus may be on the role of all the government advisors who have been continuing to recommend that ME/CFS be classed as a psychiatric condition in the UK, even after it has been defined as a neurological disorder by the WHO and even while evidence has been accumulating over the last decade that had already established the physical nature of the condition. As I understand it, Wessely is the main advisor who informs that policy, and that's where his culpability lies. Perhaps our main focus should be on the political avenues that can query his advisory role on the basis that, by his own admission, he hasn't properly followed the latest research on CFS.

 

[froufox]

For what it's worth, I suspect the most fruitful focus may be on the role of all the government advisors who have been continuing to recommend that ME/CFS be classed as a psychiatric condition in the UK, even after it has been defined as a neurological disorder by the WHO and even while evidence has been accumulating over the last decade that had already established the physical nature of the condition. As I understand it, Wessely is the main advisor who informs that policy, and that's where his culpability lies. Perhaps our main focus should be on the political avenues that can query his advisory role on the basis that, by his own admission, he hasn't properly followed the latest research on CFS.

Yes I think this is an important point, and reflects my thinking too.