WPI Letter to Dr McClure ****

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
Messages
3,045
Likes
6,039
Location
UK
Thanks all,

I didn't realise you could do an FOI request from outside the UK. Not that I've really got the energy to do it! I guess that's the problem for us all in this situation. I'm in Australia, so it feels a bit difficult from here. Does anyone know exactly how to go about it? does it cost money?
It's not difficult. All that needs to be done is to email an organisation or institution's Data and Information Office. All websites will have a page for this setting out the contact details.

Sometimes an online form is provided, otherwise you can submit via email.

Set out clearly the information you are requesting.
Ask for an acknowledgement and any reference number asigned to the the request.

You are not even required to ask "under the FOI Act", it will be treated as such, anyway. But I usually write "I request the following under the FOI Act."

As for costs, a charge may be made for complex requests for large amounts of information. You would be advised in advance of any charge. I have never been charged.

That's all there is to it. A response has to be provided, by law, within 20 working days.

Suzy
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
Messages
3,045
Likes
6,039
Location
UK
A few additional points:

Multiple requests for the same information are counterproductive. One is sufficient.

FOIs are compiled by staff with no specific interest in or knowledge about the issues for which the request revolves around. They merely procure and process the information and provide it to the enquirer.

So it's not appropriate or productive to use them as vehicles for advocacy, expressing opinion or opening dialogue.

ICL does not use an online form. The email address is foi@imperial.ac.uk


Suzy
 
Messages
1,479
Likes
522
Location
Clay, Alabama
Fatigue is a legitimate medical symptom. It is symptom associated with many legitimate illnesses, including influenza. It is recognized by doctors as commonly being indication of serious illness. So fatigue, the term, is ok. "Tired" on the other hand is not a good word, although a person who is not medically savvy might report their fatigue as being "tired all the time" or "exhausted," another word that indicates something normal, not illness.

But fatigue is normally associated with some illness, biological or psychological. But even within fatigue, there should be another word. Some CFS specialists have said that fatigue as in fatigue with flu still does not describe the experience of someone with CFS. There just plain isn't a word to accurately describe what we have.

Tina
 
G

Gerwyn

Guest
Fatigue is a legitimate medical symptom. It is symptom associated with many legitimate illnesses, including influenza. It is recognized by doctors as commonly being indication of serious illness. So fatigue, the term, is ok. "Tired" on the other hand is not a good word, although a person who is not medically savvy might report their fatigue as being "tired all the time" or "exhausted," another word that indicates something normal, not illness.

But fatigue is normally associated with some illness, biological or psychological. But even within fatigue, there should be another word. Some CFS specialists have said that fatigue as in fatigue with flu still does not describe the experience of someone with CFS. There just plain isn't a word to accurately describe what we have.

I never felt fatigued I was too ill for that like having the worst flu imaginable day after day without end.The word fatigue is totally inappropiate to describe the suffering involved in ME
 
K

Knackered

Guest
But fatigue is normally associated with some illness, biological or psychological. But even within fatigue, there should be another word. Some CFS specialists have said that fatigue as in fatigue with flu still does not describe the experience of someone with CFS. There just plain isn't a word to accurately describe what we have.

I never felt fatigued I was too ill for that like having the worst flu imaginable day after day without end.The word fatigue is totally inappropiate to describe the suffering involved in ME
Snap, that's exactly how I feel Gerwyn. It's like always having the flu with varying intensities through out the day/week.

Even on my good days I can still feel it, it's always there, it's just sometimes it's not as bad as it usually is.
 
Messages
76
Likes
1
Im curious to know if anyone has tried to email Dr McClure directly in order to discover her "official" reasons for her recent back-tracking on the ABC australia broadcast, rather than issuing a more professional retraction statement to make good her previous mistakes by using the same media as her earlier articles were published in (ie the BMJ) .

I understand it may well have gotten nowhere, and i appreciate the WPI letter was released soon after but did anyone try to have a go at this? I know she responded before to people on the Plos One website re questions following her paper's conclusions which showed some inclination to engage in public discussion. Her recent admission of "a quick 2 weeks work" has publicly confirmed she wasnt ever going to be able to find XMRV as there wasnt time for employing the necessary amplification techniques as used in the Science paper.
I dont think this kind of behaviour is acceptable - does anyone know if research scientists often retract statements dishonourably and to a different audience entirely as their original misstatements or is it common practice to be more open and honest? I do appreciate the world isnt perfect but isnt there some kind of scientific protocal to adhere to in these circumstances?
 

ukxmrv

Senior Member
Messages
4,413
Likes
4,594
Location
London
Cookie Monster,

I sent an email to Dr McC when the original paper was published. It was not rude or agressive. I didn't get a reply.
 
Messages
76
Likes
1
I sent an email to Dr McC when the original paper was published. It was not rude or agressive. I didn't get a reply.
Thanks ukxmrv - sadly, i suspected this was gonna be the case, so many people on here are wonderfully quick to take the initiative on things like this, ive joined here late and im playing catchup alot of the time :eek:).

What a self-important %^&* . Thats such a contrast to how the WPI behave.
 

ukxmrv

Senior Member
Messages
4,413
Likes
4,594
Location
London
CM,

I do know of approaches that were made to her that did receive a reponse and I used that avenue to communicate in the end. It may be that she was overwhlemed by ones from patients just after the study was published. I wasn't very impressed by the communications I did get through a third party in the end though. She came across as a NHS "Jobs worth"
 

ukxmrv

Senior Member
Messages
4,413
Likes
4,594
Location
London
Thank you Subtr4st,

Good explanation.

I quite liked the Wiki one as well. The reason I am posting this is because I think that she may use these type of tactics to make excuses for not replying to or taking up the WPI offer

=============================

om Wikipedia, the free encyclopedia

A jobsworth is a person who uses his or her job description in a deliberately un-cooperative way, or who seemingly delights in acting in an obstructive or unhelpful manner.

"Jobsworth" is an almost exclusively British word deriving from the phrase "I can't do that, it's more than my job's worth". The Oxford English Dictionary describes it as British colloquial, and defines it as "A person in authority (esp. a minor official) who insists on adhering to rules and regulations or bureaucratic procedures even at the expense of common sense".[1] Jonathon Green similarly defines "jobsworth" as "a minor factotum whose only status comes from enforcing otherwise petty regulations".[2]

Phrases such as "that's not my department", "that's not in my job description", and "that's not my job" roughly reflect the attitude of a person to whom the term applies.[dubious – discuss]

One of the first recorded uses of the term appears to be in the 1965 Beatles movie Help! when the assistant scientist character Algernon (played by Roy Kinnear), exclaims "Well it's more than my job's worth to stop him when he's like this, he's out to rule the world... if he can get a government grant."

Another early use was by UK folk-singer Jeremy Taylor in a song he wrote in the late 1960s:

Jobsworth, Jobsworth, It's more than me job's worth,
I don't care, rain or snow,
whatever you want the answer's no,
I can keep you waiting for hours in the queue,
and if you don't like it you know what you can do.

The term became widespread in vernacular English through its use in the popular 1970s BBC television programme That's Life! which featured Esther Rantzen covering various human interest and consumer topics. A "Jobsworth of the Week" commissionaire's hat was awarded each week to "a startling tale of going by the book".[3]

The term remains in use, particularly in the UK, to characterise inflexible employees, petty rule-following and excessive administration.[4] It has largely supplanted the older term, "Little Hitler"
 

oerganix

Senior Member
Messages
611
Likes
9
Cookie Monster,

I sent an email to Dr McC when the original paper was published. It was not rude or agressive. I didn't get a reply.
I did the same, pointing out that her statement about the cohort being from an outbreak in the US was in error. She did not respond.
 
Messages
76
Likes
1
I did the same, pointing out that her statement about the cohort being from an outbreak in the US was in error. She did not respond.
This lady heads up the most influential retrovirology lab in the uk - its very sad to think she doesnt want to contribute to scientific advances in her chosen field. Quite the opposite it seems.
 

fred

The game is afoot
Messages
400
Likes
2
How inflammatory is this: http://scienceblogs.com/erv/2010/04...12.php?utm_source=combinedfeed&utm_medium=rss

Don't want to give the person whom wrote this the pleasure of replying, I doubt any reasoning would either change there opinion, or even prevent a verbal diatribe again anyway. But it has to be read to be believed.
Hi Bully, there's a separate thread for this. Still no reply to various people's complaints, though.

http://www.forums.aboutmecfs.org/sh...rch-March-2010-and-respond.&p=62898#post62898