The Fight is on...Imperial College XMRV Study

[DysautonomiaXMRV]

At least now XMRV is proven to be in UK patients, we know why the British Government have placed files on ME under the official secrets act until 2070.

Case closed as far as I'm concerned. Wessely is a military Psychiatrist. It's his business to 'theorise' on why people fail to recover from infection, but
not to actually produce research and block funding for research into infection. Which is what happened.

I bet it was the British who caused 'ME' back in the 1950's, hid it with a cover story of 'Rich Middle Class White Women', then 'CFS' . At least they got exposed
thanks to some lovely people in Nevada, USA. Who aren't British.

Good will always prevail, eventually.

 

[Holmsey]

Holmsey,

Sorry to put you through that, but Simon Wessely should be declaring his competing interests when he publishes. Its the right thing to do. And he did give you permission to share his posts. On the bright side, there are probably some here that were uneasy with all the third party dialogue going on with this forum and Simon Wessely. If he wants to talk, he can come here, speak directly, and we will be civil and respectful. As one who has had his hand slapped and posts moderated for speaking ill of him, I can vouch for that.

You don't want to come off as a spokesman for Simon Wessely here. But now you are free of his influence, in a sense. In a figurative manner, you may have just been demoted from a house slave to a field slave:
http://library.thinkquest.org/03oct/00394/house.htm
But your freedom was at stake all the same, and still is.

We 'choose' to beleive, others only provide viewpoints and information, with respect to our choices we are no one's 'slave'. Without input there is no choice to be made, a lack of information, a lack of alternate viewpoints, that would be listening to propoganda.

 

[flex]

No I haven't flex. But I've no reason to suspect that they my notes contain anything untoward. All I'm trying to say here is that in general the situation in the UK is dreadful and a lot of UK people on this board have had very bad experiences with doctors, but I've found that most of those I've seen have been helpful within the limits of their knowledge, and have listened to me. One consultant, not an ME specialist, became very interested in ME research and I saw him for 2 hour sessions every two months for a year to discuss recent literature that I brought to him and decide whether it had implications for my treatment or the treatment of his other patients. For example, he became interested in parasites after I told him that another ME doc had found them in some patients' blood and gave me tests for a range of them.

Others in the support group that I run have managed to find supportive doctors, and one of the things we give to our members is a list of ' Good Docs' in North London. And of course some have had bad experiences, so we share that knowledge too.

Jenny,

I am interested in your list of good docs in N London. Are they GPs or specialists? If you get a chace could you post some details here.

Actually I have a very nice GP, willing to refer me where I want to go. I have given her some details on the political history but I dont think she read them. She was shocked to here about the issues around Simon Wessely though. But 10 mins later she is with another patient talking about something else tied down with targets and red tape. The consultant you saw for two hours every two months for a year, what was his specialist field?

I went recently for an unconnected problem and the GP (not my usual one) asked about my Neuro issues and said alot of these issues are tricky to diagnose. I didnt go into detail with her because you just dont know who to trust. Isnt that a terrible thing to say!! If you come accross all political they may think you are a nut case!!

 

[Holmsey]

I can't help but think that SW's response to the "Doctors will see them and be disgusted by them" thing is typical of what we complain about.

In a book chapter why not just say "Some doctors have bad attitudes to their patients and this is wrong" if that is what he was trying to convey.

Consider an article that says "Some people have said that hamsters are filthy, disease ridden creatures which lower the intelligence of any child who plays with them, but of, course, I don't agree with that."

Instant deniability if you are taken up on it, but people who read it will be left with the vague idea that hamsters are bad pets long after they have forgotten the article.

This is a man who uses words as weapons. In some ways I would think better of him if the things he says, or the impression he gives, were how he truly thinks, but he always claims to be caring and trying to help us.

I can't remember where I read it, a long time ago, but at a conference in the US he turned to the woman beside him and asked "Why do they hate me?" She said, "Simon, do you ever listen to yourself?"

Mithriel

Mirthriel, did you see my post with SW's comments, he was directly quoting another, from the 1930's, when you're quoting someone else it's imperative that you do so accurately, so there's no way you can soften what was said and still call it a quote!

The reasons you go on to outline only serve to highlight why it's important to find the original book chapter or a copy of it, as, almost every comment I can find on the web, from people supposedly on our side, shows the quote in what SW says is a truncated distorting manner and attributes the quote to him rather than stating quite clearly that he was quoting a doctor from the Mayo clinic back in the 1930's. If SW's claims are true then 'we' as a community have moved way beyond vague suggestion right into down right lies and dissinformation.

 

[Robin]

Please read carefully what you asked me and what I wrote before posting, unless you are only interested in seeking sympathy or complaining rather than discussing. And, speaking of presuming, you are indeed presuming about my illness that you know nothing about.

Regarding Kim's comment, I already asked her to please be nice. I'll ask you the same.

Regarding the Holocaust survivors: Concentration Camp Syndrome is well documented, and while occasionally "fatigue" is mentioned, by far the bulk of symptoms are psychological in origin. A prevalence of long-term incapacitating fatigue would have been noted, don't you think? And the stress model still wouldn't explain the presence of CFS in low-stress populations. If you wish to discuss further we should start another thread.

On the bright side, there are probably some here that were uneasy with all the third party dialogue going on with this forum and Simon Wessely. If he wants to talk, he can come here, speak directly, and we will be civil and respectful. As one who has had his hand slapped and posts moderated for speaking ill of him, I can vouch for that.

You were moderated for attacking another member (Holmsey), not SW. Until he creates an account and starts posting here, he's fair game. The slave comment wasn't necessary; I understand how you feel about Holmsey but can you find less personal ways to disagree with him, please?

Holmsey, would you like another thread to discuss your correspondence with SW?

 

[Mithriel]

Holmsey, my point is that whether the quote was accurate or not, it should never have been mentioned in a chapter about ME.

The fact it was said years ago and not about ME, makes it even less relevant. Politicians use that sort of tactic to get a nasty phrase into other people's minds in such a way that they can deny that it is what they personally believe. It is underhand and hypocritical.

If you have a limited space to get your message across, every word is chosen carefully. There is no way that SW wouldn't know the effect of putting it in. It would make people see the possibility that we are disgusting and/or get us upset so that when we complain he can use it as proof of how horrible and childish we are.

A nasty thing to do.

Mithriel

 

[Orla]

I think you are spot on there Mithriel. I tend not to use that quote against Wessely in public as he can wriggle out of it too easily.

Holmsey, there are plenty of other awful comments by Wessely so we know where he coming from. Here is an example:

"Im going to talk not about an illness, but about an idea" I will argue that ME is simply a belief, the belief that one has an illness called ME., The Victorians lived in an age of fatigue, we now live in the ME generation "there is another condition with which ME might easily be confused... it is hysteria."

people redefining themselves in terms of illness..and these views matter they affect outcome, look at these studies of prognosis..hence our virus doctor exists not to hold out hope of cure - but to give legitimacy to distress

from Simon Wessely's talk entitled Microbes, Mental Ilness, The Media and ME: The Construction of disease, at the Eliot Slater Memorial Lecture, which you can read here http://www.meactionuk.org.uk/wessely_speech_120594.htm

Love this Mithriel:

at a conference in the US he turned to the woman beside him and asked "Why do they hate me?" She said, "Simon, do you ever listen to yourself?"

His actions speak louder than his words and it is the effect of these people's actions that are the real problem. Anyone can have any crazy idea they like, but when they weild so much power and influence, it is then that they become a real problem, and need to be criticised publicly

Orla

 

[starryeyes]

Kim wrote: "Besides, another 12 pages and this will become the longest thread in the forum. The B12 thread is 99 pages long and took 6 months to get there. This thread hasn't even been up a week yet and it's 88 pages long."

♪♫ This is the thread that never ends.. yes it goes on and on my friend..... ♪♫

 

[Martlet]

Flex, I haven't seen my notes here in the USA either (although I have all my records from when I was treated by air force doctors) and to be honest, I don't care what my doctor thinks about the cause of CFS/ME or what he actually writes, as long as he treats me to the best of his ability. He is polite, caring, sometimes makes me laugh. He has been willing to try different meds to help me sleep, heeds me when I tell him I have odd reactions to certain meds. Until a cause is proven, that's all I ask.

 

[Min]

It;s not just Wessely here in the UK, but Prof Peter White, Trudie Chalder, Prof Michael Sharpe (who called us 'the 'undeserving sick of our society and our health service'' ) etc. etc. who are deriding patients with M.E.

 

[flex]

Orla,

I have read a few of your posts about Wessely and I run the thread " Letter to Uk government, WHO and worldwide press associations demanding Wesselys suspension.

The 17 million of us worldwide need to each sent a copy of the letter that I am going to draft and make available for download on line.

Are you in the London area or do you know anyone who is.

I NEED HELP!!

I think a few people need to edit the letter to make sure all quote and statements are 100% accurate.

ANYONE ELSE HELP???

 

[starryeyes]

Great idea Flex. Where's your thread for this? It should be in Advocacy.

 

[Jenny]

Jenny,

I am interested in your list of good docs in N London. Are they GPs or specialists? If you get a chace could you post some details here.

Actually I have a very nice GP, willing to refer me where I want to go. I have given her some details on the political history but I dont think she read them. She was shocked to here about the issues around Simon Wessely though. But 10 mins later she is with another patient talking about something else tied down with targets and red tape. The consultant you saw for two hours every two months for a year, what was his specialist field?

I went recently for an unconnected problem and the GP (not my usual one) asked about my Neuro issues and said alot of these issues are tricky to diagnose. I didnt go into detail with her because you just dont know who to trust. Isnt that a terrible thing to say!! If you come accross all political they may think you are a nut case!!

Flex - I don't feel I can post the good docs list on here as it was compiled by members of the ME support group that I help run, on the understanding that it would only be circulated to the group members. It's a mix of GPs, consultants and actually includes dentists that understand ME as well. If you are looking for a doc in a particular area of London let me know and I'll see what we have.


Similarly, email me if you want more details of the consultant.

 

[DysautonomiaXMRV]

Moderator comment: This is the second time I have moderated this same post. This member removed my moderator comments, which pertained to him ascribing other than pure motives to another member. This time I am removing the offending words.

There's a balanced 'argument' on any given topic addmitedly, however one cannot 'argue' that someone who kills vulnerable patients through disinformation should be given any forum time when it comes to RESEARCH. Surely? We know Simon Wessely's powerful infuence has lead to countless suicides and deaths from cancers. The man is abhorant. Yet we have a person on here, who is playing all innocent and doe eyed saying, ohh I didn't know, he said what? Did he really say that? etc etc. Well this person was saying these kind of innocent questions two months ago and getting threads closed down!!!

Now they're doing it again. And they're doing it again because ANY THREAD on Wessely on this forum that criticises him gets closed down, or re-started by the very people who WANT it closed down or re-started.

Can't any of you see this? It's like a circle going around and around. Prevent free speech, by suggesting such ludicrous things, that people kick off to defend their own suffering. Then complain about them, and get them warned or banned. Very clever.
Sick, but clever.

By allowing 'debate' on a serious potentially fatal disease by defending or trying to legitimise Wessely (e.g. psychological vs organic disease), it's like mysoginist 'debating' a woman's rights to access medical care as much as men, and saying in a mysoginists defence 'he has a fair point' or 'that's his opinion' on a forum for breast cancer survivors who never got medical care until they had surgery and needed a prosthesis. And we do this because a person with a user-name claims to be linked or have contacts with someone who hates women.

In this context it's not women haters, but neuro immune disease haters. In this case we are debating someone who hates patients with ME CFS to the extent their entire identity is denied. I feel most put out that someone who denies my identity as human being is given even 0.000001 second 'air time' on this forum in the name of 'open debate'.

''I will argue that ME is simply a belief, the belief that one has an. illness called ME.'' - Simon Wessely
One cannot debate one's right to exist. And apparently ME patients do not exist.
ME is an 'abnormal illness belief' according to Simon Wessely.

ME is infact a Neurological diease according to the World Health Organisation, circa 1969.

If we had another person saying this next phrase: (I will use a hypothetical scenario here)
''I will argue that Breast Cancer is simply a belief, the belief that one has an. illness called Cancer.'' - Brad Jones
Would Brad Jone's secret anonymous unproven 'contact' be posting on a Breast Cancer forum? Would moderators allow 'debate' about Brad Jones? Of course not. You cannot debate a comment like the above on cancer, and you cannot debate a comment like Wessely's.

We need to wake up here. Wessely has hand picked non neuro immune disease patients for an XMRV study, and we are 'debating' if this is accurate research or not. Would Brad Jones's research on Breast Cancer be debated? I think not.

To me this is utter psycholgical abuse, it's like saying Jews don't exist because you're in denial of the Holocaust and lets
let the Holocaust denier speak, in the interest of fair play, because he claims to know someone who said something.

Either way, for every patient like me and many others who have to DEFEND themselves from the vile quotes of Simon Wessely, there is an anonymous nitwit on the Internet laughing their head off, at the fact we are offended, and the fact we have to defend ourselves, on a forum to do with our disease. It's bullying.

Moderator comment: This is the second time I have moderated this same post. This member removed my moderator comments, which pertained to him ascribing other than pure motives to another member. This time I am removing the offending words.
Wow, just wow.

 

[Martlet]

DysautonomiaXMRV

This is your first warning. Please DO NOT edit moderator comments from your posts and cut the personal attacks. Please read the forum rules.

 

[Robin]

@ dysautonomia, you might want to take it up with Cort. It's his board. We realize the emotional context of the Simon Wessely issue and understand why it inspires such ire, but, all arguments can handled on merits, and all points of view are welcome even those you don't agree with.

We give people a lot of leeway here, but, editing our comments is not a good way to start out.

 

[kurt]

Hello DysautonomiaXMRV,

I totally appreciate that you feel slighted in all this debate about Wessely. But the problem with free speech is that it applies to everyone, including people promoting positions we detest. If the forum were to ban discussion of one viewpoint, or allow open flaming of anyone supporting that viewpoint, this forum could easily become a hate group. Clearly feelings about Wessely's position are strongly negative in the UK. That is a complex situation of course, not one we can fix through any debate here.

I don't think much good is done by venting here, you are preaching to the choir. We all already know that psychologization of ME/CFS does not work, many of us have been through those same therapies. But we also know that we do not have the answers yet, this is a complex and not entirely uniform illness. And there IS proof of neurotropic infections in ME/CFS, which means PWC infections will be stress sensitive, particularly the HHVs. Some people choose to focus just on the stress aspect of the illness, ignoring the biological, and that is their right. The mind/body connection is very complex, immune modulation by stress levels is proven. This is a legitimate debate, and none of us has the right to stop someone who has opinions about that from sharing their ideas.

Anyway, I am just giving my opinion here, but I am really worried about all the strong feelings because I believe that placing our hopes in XMRV is a bad move right now since it is not a proven cause of ME/CFS. I have studied the science and doubt XMRV will discredit the psychologizers any time soon, maybe never, due to the debatable role of these types of retroviruses in disease, and problems proving the viruses are present (this is a separate topic I would be glad to discuss in another thread). If you have any influence in the UK, maybe try to persuade them to run a virachip study on those samples. I think the outcome would be surprising, and would show a high load of neurotropic infections in the PWME in the UK, just like it did in the US (the WPI virachip study was reported in May 2009 and showed a high load of HHV and HERV activation).

We are at a possible turning-point in ME/CFS and cool heads will be critical for this all to work out in our favor, particularly if XMRV turns out to be only a subset issue in ME/CFS, which appears likely.

 

[flex]

In defense of the main points of DysautonomiaXMRV above

I dont know anything about the moderators point being removed but I strongly suspect the possibity, of shall we say, outsiders getting on to this site trying to play divide and rule. I'm not saying its happened yet.

We are all on the same side.

Please check my thread "letter to UK goverment, WHO world wide press to demand Wesselys suspension"

People are still asking how to find this thread and I really would like some help from the administrators to point people in the direction of the thread.

Moderator: Here's a link to it.

When the letter is online anyone can download it and send a copy in a mass media campaign.

We can have our disputes but lets all get back on track.

WE ARE 17million strong worldwide. The truth is on our side. If you know some too ill to sign the letter go to their house and hold their hand as the do it. If your friends and family are with you, get them to send a copy. If you are a scientist in the name of truth send a copy. If you are a doctor in the name of truth send a copy. If you are advocate in the name of truth send a copy. If you believe in truth in the name of christ himself


SEND A COPY!!!!!!!!

LETS TELL EVERYONE ELSE INSTEAD OF KEEP TELLING EACH OTHER!!!!!

 

[JayS]

http://www.plosone.org/annotation/l...notation/13ea20d1-91e6-49c3-bc4b-8fd1ca18f150

 

[fresh_eyes]

Thanks for posting, JayS! From the link above:

Overall, we wish to emphasis, and to do so emphatically, that our patients are typical of CFS patients seen in specialist care elsewhere. We specifically refute the suggestion that our patients are in some way more psychiatric, whatever that means, than those with real CFS, an assertion that has been repeatedly made in other venues. The rates of co morbid psychiatric disorder, for which we routinely screen, are again similar to those seen elsewhere. We draw attention to another study that compared two services run in the same London teaching hospital, one by an immunologist, the other a psychiatrist, but showed no fundamental differences between the two (White et al, 2004). On behalf of the patients that attend our CFS clinic, we resent the implication that they are in some way different, less ill, less disabled, let alone less deserving, than CFS patients in any other service or setting. It is otherwise, and we have provided a wealth of published data to back this assertion.

Professor Simon Wessely, Professor of Psychological Medicine
Professor David Collier, Professor of Psychiatric Genetics
Dr Anthony Cleare, Reader in Neuroendocrinology

"Other venues" - is he talking about us??? Hi Dr Wessely, if you're reading! Thanks for the denial, but I think it's safe to say most of us are not convinced. Sorry!