Wessely Says: Even if XMRV Causes ME, "There's Nothing We're Going to Do About it"

starryeyes

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Esther wrote: [W]hen you go to doctors' websites and find them wishing CFS patients knew what it was like to suffer from a real disability, or joking about how they'd like to euthanase us[.]
Hi Esther,

Glad to see your opinion here. I was amazed at the above. I've never seen that! Do you have a link(s)?

tee
 
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Hi Esther,

Glad to see your opinion here. I was amazed at the above. I've never seen that! Do you have a link(s)?

tee
One of these is the UK's 'Dr Crippen' blog where the denigration and deliberate taunting of
those with M.E., Lyme and fibromyalgia by NHS GPs is common. Another anonymous 'doctor' posting there on the thread about Lynn Giderdale was encouraging M.E. sufferers to commit suicide.

I won't post the link as 'he' receives money each time anyone goes to the blog. 'Dr Crippen' also has a weekly column in the Guardian newspaper in which 'he' continues to denigrate us, and where 'he' has called us 'militant loonies'.

----------------------------------------------------------------------------------

It's incredible that a psychiatrist can his views on immunology taken as gospel by medical authorities, but it saves the UK's National Health Service an awful lot of money. Are we going to end up the only country oin the world where supposed 'research' finds no XMRV?
 

Esther12

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One of these is the UK's 'Dr Crippen' blog where the denigration and deliberate taunting of
those with M.E., Lyme and fibromyalgia by NHS GPs is common. Another anonymous 'doctor' posting there on the thread about Lynn Giderdale was encouraging M.E. sufferers to commit suicide.

I won't post the link as 'he' receives money each time anyone goes to the blog. 'Dr Crippen' also has a weekly column in the Guardian newspaper in which 'he' continues to denigrate us, and where 'he' has called us 'militant loonies'.
I did actually post a link to this, but it seems to have been lost in the forum upgrade. Maybe I shouldn't re-post if it will only add to his income.
 

justinreilly

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Wessely says that we shouldn't be looking for the cause(s) of ME anyway.

The more I know about this guy the more I hate him, but this time I have to say something that might defend him. As he's quoted here, he said: "even if we found it there's nothing we're going to do about it. We're in the business of rehabilitation.".
To me, and it ma be due to the fact that my primer language is hebrew and not english, but to me it's sounds as if he says "We're not going to do more tests because even if the virus is the cause, we are not in virology business, but in psychiatry business, so if a virus is the cause, than a virologist would have to deal with it".
What do you think? I may be entirely wrong here, it just how it sounds to me.
Wessely was not introduced as or speaking in the context of 'the psychiatric response to ME." He was speaking, as usual, as 'the expert on ME' in general and how to treat it. Specifically he was responding to a question something to the effect of 'why 'CFS' patients want there to be one viral cause and is this misguided?'
He was responding that it's because it removes the 'psychological stigma' we have now. But that, just as 'we don't need to know the license plate of the car that hit you in order to treat you for a car accident, we don't need to know what, virus or otherwise, caused your 'CFS' to treat it.'
This is a calculated campaign to isolate and subjugate us.
 

MEKoan

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It doesn't even hold up as a metaphor. You may not need to know the license number but you do have to be able to see the bloody car!

Ohm!
 

justinreilly

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It doesn't even hold up as a metaphor. You may not need to know the license number but you do have to be able to see the bloody car!

Ohm!
Exactly. I mean the cause of the injury would be important to treating someone who was hit by a car if there were psychiatrists saying the victim was not in fact injured, but instead is somaticizing. This would help with the decision as to whether to treat the injuries with psychological counseling or physical medicine.
 

justinreilly

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BMJ says Hooper's "Magical Medicine" is Defamatory

I got an email from an editor at BMJ in response to my comment to Wessely's piece that I posted in my first comment on this thread. He took off a reference and link to "Magical Medicine". Because it is 'defamatory.' I responded in the email below, that he should then take down much of what Wessely wrote from BMJ.com.

First the email to me from BMJ:

To: justinreilly@hotmail.com
CC: FGodlee@bmj.com; JSmith@bmj.com
Subject: your response BMJ - Let's proceed with nonesnee
From: TDelamothe@bmj.com
Date: Thu, 11 Mar 2010 18:54:32 +0000


Dear Mr Reilly

It was pointed out to me that reference 4 in your posted response is defamatory, so I have removed both the referencing passage and the reference itself from your response.

I've included a note to say that your response was amended by me, post publication.

Tony Delamothe
deputy editor


" For the story of the Wessely School's war on science and ME patients,
please see Prof. Malcolm Hooper's recently published "Magical Medicine"
free, infra.4"
My response:
From: justinreilly@hotmail.com
To: tdelamothe@bmj.com
CC: fgodlee@bmj.com; jsmith@bmj.com
Subject: RE: your response BMJ - Let's proceed with nonesnee
Date: Thu, 11 Mar 2010 19:28:22 -0700

Dear Mr. Delamonte,

Thank you for printing my comments on BMJ.com.

I am a lawyer and I don't know anything to suggest that "Magical Medicine" is defamatory. To be defamatory, at least in the USA, a statement must have a proveable substantive false statement of fact which will hurt someone's reputation. In the case where the statement is made by someone who has entered the 'public arena' as Prof. Wessely has, it must also be shown that the writer knew the statement was false. I do not know the specifics of the British law on defamation, but it is probably almost identical (with the possible exception of the 'public arena' requirement- I just don't know), as American law is based entirely on British common law.

I have only read about 125 pages so far, but nothing has struck me as a false statement of fact. Merely voicing a 'nasty' opinion or including facts that put Dr. Wessely in a bad light are clearly not defamatory.

Can you please show me what was defamatory in "Magical Medicine." I want to know the full truth about the Wessely school approach to ME/CFIDS and this would further that end. If you cannot show me that "Magical Medicine" is defamatory, I of course wish my comments to be published in their entirety. Thank you.

After writing the above, I have read the article in this weeks BML on libel. It seems that the law does differ in the details, but the larger ideas are roughly the same. A curiousity is that the defendant (not plaintiff) has the burden of proof of showing everything is truthful. This seems very unwise.

Since this is the British law, I can see why you would not want a link to "Magical Medicine." But if that is the case, I am sure that you should take down much of Wessely's writings from your site, since he skates very close to defamation, and perhaps sometimes goes over the line, on a regular basis.

Things like saying that the WPI cohort was entirely from the Tahoe outbreak, when it was published on the WPI website that a quarter came from Peterson's practice and the rest from around the country; that most "CFS" researchers found the XMRV- 'CFS' link implausible; that 'CFS' patients are somaticizing, suffering from false illness beliefs, 'augmenting' symptoms, even defining CFS by the Oxford Definition may be libel.

Sincerely,
Justin Reilly, esq.
Boulder, CO 80302
 

OverTheHills

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ANd if you found a lot of people were getting injured in road accidents you might want to do something about stopping that - eg drunk drivers, speed limits etc.
 

gracenote

All shall be well . . .
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Or if that same car was continuing to run into you and then causing other cars to also run into you.

(I may be s t r e t c h i n g this metaphor beyond the beyond!)

It's one thing if the virus attacks and then is gone leaving damage in its wake. It's quite another if there is ongoing active infection (that creates vulnerability to other infections), that continues to cause symptoms. I don't think ME/CFS is the same thing as Post Viral Syndrome no matter how many times this gets regurgitated via the psychiatrists.

Thanks justin. Not ignoring your emails. I appreciate your persistence. Would love to know if you hear back again.
 

parvofighter

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You go, Justin!

Thank you Justin!
Kudos to you Justin for an intelligent, necessary assault on BMJ's resistance of the "Magical Medicine" link. I'm really curious. Ostensibly the BMJ is about evidence-based medicine. So what part of exposing the fact, that a cadre of psycholobbyists, with abundant support by the UK government and insurance bodies, is denying hundreds of thousands of patients with a serious neuro-immune disease any substantive physical examination (much less treatment)- and is automatically recommending CBT/GET (a coping technique for mild ME/CFS AT BEST, and I'm being generous) - what part of this is NOT Magical Medicine?:eek:

We've been "coping" for decades, as patients die of heart complications, opportunistic infections, and lymphomas...and as our lives wither away while we're bed and house-bound. It's time for some evidence-based, biological treatment!
I got an email from an editor at BMJ in response to my comment to Wessely's piece that I posted in my first comment on this thread. He took off a reference and link to "Magical Medicine". Because it is 'defamatory.' I responded in the email below, that he should then take down much of what Wessely wrote from BMJ.com.
You GO, Justin!:Retro smile:

BTW, I'm going in for my monthly hospital IV tomorrow. If anyone has the chance to transcribe the BMJ Wesseley podcast @ http://podcasts.bmj.com/bmj/2010/03/05/chronic-fatigue-syndrome, I think it might be helpful for future litigation and investigative journalism.

Here's a mini-transcription...

Wesseley:
But what I think was unusual here was, in given the heterogeneity of CFS and its somewhat blurred boundaries (not if you use Canadian Criteria), the claim that theyd (Cleveland Clinic/WPI/NCI) found THE (Wesseley's emphasis) cause in the vast majority of patients they studied was always rather implausible. (Litigation right back atcha BMJ, that's not at all what the Science article said!)
Interviewer:
Its not the first time that a (his emphasis) cause has been suggested. And patients tend to want to cling on to that. Do you know why that is? (Um yeah, you troglodytes. It's because we want our health and lives back! Believe it or not, we WANT to be productive members of society, and don't enjoy being profoundly ill!)
Wesseley:
...I think for some people however, any suggestion of a social or psychological component to illness there are some people who just do find that very stigmatizing, and really dont like that at all and would prefer for there to be a single, unitary, neat, simple explanation, preferably a viral or immunological something but Im afraid the world is a bit more complicated than that. (My heavens, is that man supercilious! Yeah Wesseley, it's so complicated that you make blanket prescriptions for ME/CFS patients - diagnosed with wooly criteria to ensure higher market populations - to get CBT/GET! And since when is immunology NOT complicated! This is hilarious if it weren't so tragic.)

Seriously though - if anyone is able to transcribe that podcast, it would be GREAT!
 

gracenote

All shall be well . . .
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I'm not offering to transcribe. I would if I could. Notice I said someone, meaning someone else.

I'll be the cheerleader. Go transcriber(s), go! Rah, rah, rah.
 

MEKoan

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I'LL DO IT, I'LL DO IT!!!

Let me do it, please, oh please, oh please!

Well, that's settled then!

Mac and I are very happy to be of service.

:victory:
 

gracenote

All shall be well . . .
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I meant Koan would do it. That's what I meant.

Go Koan, go. Rah, rah, rah.

And then tell us how MARVELOUS the experience was on your new MacBook. (And don't let Wessely get under your skin. We'll be watching you so you don't get sucked into the dark side.)
 

justinreilly

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Thank you Justin!
Kudos to you Justin for an intelligent, necessary assault on BMJ's resistance of the "Magical Medicine" link. I'm really curious. Ostensibly the BMJ is about evidence-based medicine. So what part of exposing the fact, that a cadre of psycholobbyists, with abundant support by the UK government and insurance bodies, is denying hundreds of thousands of patients with a serious neuro-immune disease any substantive physical examination (much less treatment)- and is automatically recommending CBT/GET (a coping technique for mild ME/CFS AT BEST, and I'm being generous) - what part of this is NOT Magical Medicine?:eek:

We've been "coping" for decades, as patients die of heart complications, opportunistic infections, and lymphomas...and as our lives wither away while we're bed and house-bound. It's time for some evidence-based, biological treatment!
You GO, Justin!:Retro smile:


Thank you, Parvofighter. Yes, it sickens me that Wessely spews his harmful nonsense in 'respected' 'scientific' journals and then the people who are injured by it and point it out are accused of being defamatory. Our Constitutions protect free speech. Is this concept too hard to understand? These people didn't grow up in the Soviet Union so it shouldn't be that hard to grasp. By definition, the truth and opinions based on it are never defamatory, but some of what Wessely publishes sure is!
 
K

_Kim_

Guest
I'LL DO IT, I'LL DO IT!!!

Let me do it, please, oh please, oh please!

Well, that's settled then!

Mac and I are very happy to be of service.

:victory:
Hold your horses little lady!! That podcast is 25 minutes long. That is WAY too much transcription for any one person here - new mac or not.

You can do SOME of it, but let the rest of us help out.