BMJ b/s painting PWME as threatening psych patients

[Dx Revision Watch]

[Content deleted by Suzy Chapman who has now left the forum.]

 

[Dx Revision Watch]

[Remainder of content deleted by Suzy Chapman who has now left the forum.]

 

[Bob]

I've just realised that all of this publicity that they are getting is conveniently leading up to their conference...
I'm sure that the controversy will draw in a large crowd, and enable them to say anything they like about ME patients...

The Royal College of Psychiatrists
International Congress of the Royal College of Psychiatrists 2011
Hilton Metropole, Brighton, UK
28 June - 1 July 2011

http://phoenixrising.me/forums/show...ss-of-the-Royal-College-of-Psychiatrists-2011

 

[eric_s]

All the following have sought, at one time or another, to foist the burden of the alleged "lack of willingness on the part of researchers to become involved in CFS and ME studies" onto the alleged behaviour of ME and CFS patients:

Simon Wessely
The Guardian's Health Editor Sarah Boseley (since at least 2002)
Peter Denton White (Report of the November 2006 joint AfME/MRC Research Summit)
The PRIME Project
The Gibson Inquiry panel members (who all signed off on the report, including the Countess of Mar)
Vivienne Parry (Patron to ME Solutions)
Prof Stephen Holgate (via AYME Newsletter and the media)

Sir Peter Spence, CEO of Action for M.E. (via the media)
Dr Charles Shepherd (on forums and in correspondence with patients and advocates)

So I would not hold your breath on UK patient organizations...

I know it's not so easy to do, but i think the people in the UK should really as a first step start to try to bring their organisations on the right course. If not, i don't see how you could make much progress.

 

[charityfundraiser]

I think you need to read the post by ERV.


ETA:

It wasn't initially clear what information ERV was relying on other than the apparent IP.

Anyone can register domains, email addresses, and email headers can be spoofed.

ERV has now posted an image file of the message she has received with the IP and an aol.com email address.


The WHOIS return on the IP is here (this one contains considerably more information than the version posted by ERV):

http://whois.domaintools.com/64.148.147.62

<Quantity of information snipped>

CustName: WITTEMORE PETERSON INSTITUTE-110210175258
Address: Private Address
City: Plano
StateProv: TX
PostalCode: 75075
Country: US
RegDate: 2011-02-10
Updated: 2011-03-19
Ref: http://whois.arin.net/rest/customer/C02694549

-----

What ERV has got is

a name
a message
an aol.com email address

but an (apparent) IP which is registered to a

"WITTEMORE PETERSON INSTITUTE"

to a private address in Pleno, TX.

That is no proof that the originating PC traces back to the WPI or that this IP range, with its misspelled registration name, registered to a private address in Texas, is allocated to the WPI, in Nevada.

Again, the IP address you surf from that is logged by the Web site you visit has nothing to do with e-mail addresses, e-mail headers, nor registering domains for Web sites.

Plano, TX is the location of SBC Internet Services which is what they put for private addresses.

The relevant information shows the location as Reno, NV as well as geo coordinates consistent with serving WPI.

 

[Dx Revision Watch]

[Remainder of content deleted by Suzy Chapman who has now left the forum.]

 

[Dx Revision Watch]

[Content deleted by Suzy Chapman who has now left the forum.]

 

[charityfundraiser]

Okay, for those familiar with the technical, it was clear that the information she posted was from looking up the logged IP address only. It is from IP lookup, not whois.

 

[Bob]

My brain is on a go-slow today (as usual) and I've only just managed to work out what's going on with all of these articles and features in the BMJ...

So in case it helps anyone else, here are all of the links...

The four CFS/ME related editorials, features and commentaries that are published in the BMJ, are also posted, in full, on the ME Association webpage, here...

Ending the stalemate over CFS/ME, British Medical Journal, 22 June 2011
http://www.meassociation.org.uk/?p=6711

This ME Association webpage includes the full text of the following articles from the BMJ:

Ending the stalemate over CFS/ME
Editorial ('Editor's Choice') by Fiona Godlee, editor, BMJ.
22 June 2011
http://www.bmj.com/content/342/bmj.d3956.full

Heading for a therapeutic stalemate
Feature/Commentary by Trish Groves, deputy editor.
22 June 2011
http://www.bmj.com/content/342/bmj.d3774

Living with CFS/ME
Feature/Commentary by Ollie Cornes
22 June 2011
http://www.bmj.com/content/342/bmj.d3836.full

Dangers of research into chronic fatigue syndrome
Feature by Nigel Hawkes, freelance journalist
22 June 2011
http://www.bmj.com/content/342/bmj.d3780.extract



Then, there are some 'rapid response' pages with some responses to the above features (Except I can't find a response page for Ollie Cornes' article: 'Living with CFS/ME'), here:

Replies to Ending the stalemate over CFS-ME
http://www.bmj.com/content/342/bmj.d3956.extract/reply#bmj_el_262614

Replies to Commentary Heading for a therapeutic stalemate
http://www.bmj.com/content/342/bmj.d3774/reply#bmj_el_262816

Replies to Dangers of research into chronic fatigue syndrome
http://www.bmj.com/content/342/bmj.d3780.extract/reply#bmj_el_262644

 

[justinreilly]

It surprised me BMJ published the really good piece by Ollie Cornes. It also surprised me that Fiona Godlee seconded his recommendation of CCC. She has been publishing and writing defenses of Wessely all along and is obviously familiar with the fact that he and the other psycho-terrorists came up with and use the bogus Sharpe "CFS" definition precisely because it describes Idiopathic CF and not ME. Looks to me like she is trying to set herself up for a defense of herself based on her ignorance when the hammer finally comes down on them.

 

[In Vitro Infidelium]

Okay, for those familiar with the technical, it was clear that the information she posted was from looking up the logged IP address only. It is from IP lookup, not whois.

Which certainly gives the geolocation - Reno, but doesn't define ownership. So what is 'known' is that there is a private ADSL service for an address in Reno which is logged by the service provider under the account name Wittemore Peterson Institute, and from that private ADSL service someone posted a 'crazed' response to a blogger. Whether this private ADSL has actually been opened by someone using the name Wittemore Peterson Institute, or whether the service provider has entered Wittemore Peterson Institute as a typo, and the account holder actually used the name Whittemore Peterson Institute, and whether the WPI is in fact the account holder are all questions that can't be answered from the available data. It would certainly be smart for the WPI to deal with this issue given that someone is either deliberately seeking to misrepresent the WPI, or someone is misusing WPI services.

IVI

 

[drjohn]

Rapid response to Ending the stalemate over CFS/ME, Fiona Godlee, British Medical Journal, 22 June 2011

PERMISSION TO FORWARD, USE IN NEWSLETTERS AND RE POST ON FACEBOOK PAGES

To read a letter from Dr John Greensmith
click http://mefreeforall.org/wp/re-endin...-godlee-british-medical-journal-22-june-2011/

Short link - http://tinyurl.com/6e2f72j

Please consider making a rapid response of your own by going to the original editorial, clicking on "submit a rapid response", registering, copying & pasting your submission and waiting for it to be moderated. Not too difficult - I managed it!

Follow us on Twitter
http://twitter.com/#!/MeFreeForAllOrg

Join us for a mix of serious and fun stuff on Facebook
http://www.facebook.com/profile.php?id=100000948699086#!/profile.php?id=100000948699086

Cheers
John
drjohngreensmith@mefreeforall.org
Dr John H Greensmith
ME Free For All. org

 

[In Vitro Infidelium]

That diatribe is so completely unlike anything I've ever seen from the ME/CFS online community, that I think it's highly unlikely there is any genuine connection to the ME/CFS community there, let alone a real connection to the WPI. It's interesting that the respondents on ERV's blog accept the ridiculous idea that this rant really did come from the WPI so uncritically - so much for scepticism!

The employment of scepticism usually requires some stimulus otherwise life becomes an endless re-examination of established limits it generally isnt very useful for a human working in a precipitous location to question whether or not gravity operates to draw bodies together, or for someone who is late getting up in the morning to debate the established location of sunrise. The majority of the ERV blog audience has no reason to question whether somone not unconnected with WPI or CFS affected people, would post in that manner. Certainly its confirmation bias but one has to look at why such material would be confirming.

Given the context of this thread, how such issues are addressed by us has some significance - , a blogger has received an unpleasant response from someone with an apparently pro M.E/CFS position, yet no contributor to this thread has expressed concern about the recipient rather the blogger is acused of fabrication, of writing crap, and various other ad hominens which appear to justify the response she received. ERV can give as good as she gets, there isnt an issue of defending someone who is oppressed, but there is an issue about how M.E/CFS affected people conduct a discourse in public. Simply invoking tu quoque justifications only perpetuates an ugly situation and demonstrates a lack of concern so as with ERV, than as with Wessely, Sharp et al and the inevitable casting of M.E/CFS affected people as crazies, or at least tolerators of untoward attacks. The animal rights comparison should IMO make us collectively, feel very uncomfortable.

From a purely pragmatic point of view, blogs such as ERV matter because it is read by people who include likely future opinion formers in the field of virology. One can hate Abbie (the blog author) as much as one likes (I doubt shed care) but she, or at least one or more of her readers are either now or will be within the next ten years research team leaders. Given what theyve seen of M.E/CFS, why would any of them elect to get involved in research associated with it ?

Even if it did come from an ME/CFS patient, there is absolutely nothing you or I or anybody else in the community can do to prevent these sort of outbursts. We can bemoan them, but it's a big old world and there are bound to be all sorts of people out there with all kinds of views and attitudes - teenage wind-up merchants included.

Collectively acknowledging it and publicly distancing ourselves from it, may not prevent such behaviour but it announces something important about us, and it may actually have a disuading effect on those inclined to engage in behaviour that casts us in the role of crazies. In fact this forum could right now do something about the reltionship of M.E/CFS affected people to researchers it could adopt a rule that treats all scientists in the same way that forum members are treated in terms of no personal attacks, insults etc. It would be a clear and open statement that the derogation of researchers of all disciplines is unacceptable to this community.

So tactically, it does not make any sense at all to link here to such a post, thereby boost its rankings, and draw attention to it; nor does it do any good to bemoan that posts like this exist.

The logic of that is we should never discuss such things, but pretend they never happen and that it has nothing to do with us.

The reality is that ME/CFS patients in general show extraordinary grace, patience, and restraint in the face of such extreme and persistent provocation. The real story is the twisted way in which we are so often misrepresented, and the questions to be asked are: who has such an interest in representing us like that, what do they hope to achieve by it, and why do they keep doing it?

Thats a very flattering image, and one which could be sold to the media, although the vast tracts of whiney, self regarding, crazed, vicious and plain stupid text produced in he name of M.E/CFS advocacy would make it a tough sell, albeit not impossible with the right resources shame we lack them. I dont see theres any story in the 'misrepresentation' thats simply line of least resistance for those with contrary interests and the line of least effort from journos anyone whod had even a passing connection with the advocacy of young people in the last fifty years would recognise the formula. Theres no need to invoke considered and co-ordinated agency, its just what works for a disparate interests over time. The only effective counter is to provide positive images as a counterbalance and try where possible to achieve a cease fire with the 'enemy'. Blessed are the 'peace makers' - they may occasionally get good press !

IVI

 

[Bob]

Mindy Kitei's 'CFS Central' blog on the subject:

J'accuse!
http://www.cfscentral.com/2011/06/jaccuse.html

 

[Enid]

Thanks Bob - and good for Mindy !

 

[floydguy]

From a purely pragmatic point of view, blogs such as ERV matter because it is read by people who include likely future opinion formers in the field of virology. One can hate Abbie (the blog author) as much as one likes (I doubt shed care) but she, or at least one or more of her readers are either now or will be within the next ten years research team leaders. Given what theyve seen of M.E/CFS, why would any of them elect to get involved in research associated with it ?

IVI

Funny I don't hear Komaroff at Harvard and Montoya at Stanford complaining about ME patients. Real researchers have nothing to fear.

 

[In Vitro Infidelium]

Funny I don't hear Komaroff at Harvard and Montoya at Stanford complaining about ME patients. Real researchers have nothing to fear.

Real researcher ? Sounds like there's an approved list, and that anyone not appearing on it 'does have something to fear'.

IVI

 

[Bob]

Real researcher ? Sounds like there's an approved list, and that anyone not appearing on it 'does have something to fear'.

IVI

There are a large number of CFS researchers who never complain about CFS patients.

The researchers who complain the loudest happen to be the ones who members of the ME/CFS community perceive are carrying out an injustice.
I think that most ME/CFS patients are able to distinguish between somebody like Simon Wessely and someone like, for example, Jonathan Kerr.
One is perceived to have an agenda, and to be doing an injustice towards the ME community for questionable motives, and the other is perceived to be a researcher who has no agenda, other than to carry out decent, honest scientific research.

What struck me about the Nigel Hawkes BMJ article was that in 20 or so years, the psychiatrists don't seem to have worked out why sections of the ME/CFS community are against what they do, and fundamentally disagree with their approach to the disease. (You'd think that they might have asked by now!)
So, either these scientists have extremely poor interpersonal & listening skills, or they are extremely unintelligent, or they are purposefully ignoring patients and following their own agendas regardless of the truth, the science, and the legitimate issues that patients raise.
The psychiatrists are protesting complete innocence and ignorance of the issues, and just keep repeating the mantra that ME patients are confused, unreasonable and unscientific. It doesn't seem very grown up, or intelligent, to say the least!

I don't think that any of this really needed spelling out to most of us on this forum, but I have just in case it's helpful for IVI.

 

[floydguy]

Real researcher ? Sounds like there's an approved list, and that anyone not appearing on it 'does have something to fear'.

IVI

Real as in not doing psycho babble research into ME; those trying to move the research forward. Since you keep bringing this up, perhaps you'd like to give some proof of decent researchers not doing ME research due solely to the "aggressive" patient community.

 

[Bob]

I think that there might be some good news in all of this...

The BMJ editorials at least show that some sections of the medical establishment might finally want to engage with the ME/CFS community... I think we seem to be on their radar for the first time ever, and they maybe beginning to treat us as a patient group that deserves taking seriously...

It looks to me that they finally seem to be opening up a dialogue with the ME patient community... This is all no small feat on our part, as I'm certain that it is a direct result of years of patient and community pressure...

In my opinion, this is no time to ease off the pressure on the establishment just because the psychiatrists are protesting that their feelings are a little hurt. Obviously I'm not advocating for the sort of abuse that they have described, but for what the vast majority of us do, which is decent, honest, intelligent advocacy and campaign work.