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WPI Letter to Dr McClure ****

Otis

Señor Mumbler
Messages
1,117
Location
USA
fatigue: A condition characterized by a lessened capacity for work and reduced efficiency of accomplishment, usually accompanied by a feeling of weariness and tiredness. Fatigue can be acute and come on suddenly or chronic and persist.

"Fatigue" is a favorite medical word. When a patient says they have been feeling unusually tired, "real tired," the doctor will usually write down that the patient presents with "fatigue."


Anyone got chronic weariness syndrome?

Only of hearing this same old drivel fatigue drivel.

That and of seeing "Yuppie Flu" mentioned in (nearly) every CFS article here in the states. Despite mention of that being an 'old name' for the disease the seed continues to be planted. We're all wearing 'power' clothing, driving BMWs and chasing the almighty dollar except when we bother the doctor who can't explain what we have. The 80s are over, if we had BMWs they've given way to the cheapest form of transportation available and the only dollars we're chasing are disabilty check so we can eat and maybe buy medication and we're even sicker.

Otis
 

jackie

Senior Member
Messages
591
I'm getting chronically weary of trying to figure out why our dear Dr. Yes wants to meet someone in a Yorkshire Pud....(blimey! does that mean a "pud-dle" - or a "pud-ding" or what?)
I know...that was pages and pages back - but I'm STILL wondering!?:confused::eek:)
 

lansbergen

Senior Member
Messages
2,512
villagelife wrote,
Just to clarify, I believe the phrase "between the ears" is a poor translation of the Dutch for something like "all in your head".

You are right. The dutch "tussen de oren" means it is all in your head.

another dutch saying "orenmaffia" means 'all-in-the-mind' brigade
 

pollycbr125

Senior Member
Messages
353
Location
yorkshire
is this the bit you are meaning Jackie ? lol id missed this earlier Dr. Yes quote ' I will not thank Polly until she mails me a Yorkshire pud.' this might help ......Yorkshire Pudding was originally used as a first course filler for poor people who could not afford much meat. Years ago, when the meat was cooked on a spit or trivitt, the batter was put underneath and the fat and meat juice dripped onto the batter. If there wasn't enough meat to go around the children would get Yorkshire pudding and gravy as their main meal. Now the dish is almost always served with a roast beef main course to form part of a 'traditional English dinner'. In its home county, it is often served on its own filled with onion gravy so that it acts as a form of edible soup bowl. This practice probably originated with people who could not afford crockery either.

It has become very popular with tourists in search of traditional English fare and ranks along with fish and chips as an internationally known item of English cuisine. In fact many foreigners believe the English national dish is 'Roast Beef with Yorkshire Pudding' but as we all know it is really Curry.
images
 

jackie

Senior Member
Messages
591
Thanks Polly...I love this kind of mini-history lesson. I WAS picturing a giant "Blanc mange" - running around, ready to gobble you up...a la monty python!

(As a vegetarian...I only wish I had read your VERY colorful description - on an empty stomach!:eek: But I do love a good veggie curry!)

rats...i'm hi-jacking again!
 

Adam

Senior Member
Messages
495
Location
Sheffield UK
Thanks Polly...I love this kind of mini-history lesson. I WAS picturing a giant "Blanc mange" - running around, ready to gobble you up...a la monty python!

(As a vegetarian...I only wish I had read your VERY colorful description - on an empty stomach!:eek: But I do love a good veggie curry!)

rats...i'm hi-jacking again!


Hi-jacking must be some kind of pun - Jackie?

As for getting rats into the same sentence as Veggie Curry, well the mind boggles!

Most Saturdays I make a Veggie Curry. Been a non meat eater for 20+ years now, so, if in the unlikely event you are in the vicinity of Sheffield, capital city of South Yorkshire, there's always enough left over for another 'dinner guest'.
 

jackie

Senior Member
Messages
591
Adam...you don't know how much I appreciate the dinner invitation with your family! (and if not for that damn Icelandic Volcano...who knows!) I'd LUV your recipe, though...as long as it's ratless (LUV=that's one of my favorite terms...i can hear it said with that cute accent!)

As for "hi-jacking...that's what we are doing right now - as in going down a "rabbit trail"..."veering off the topic" etc....and "rats" is my standard exclamation for making a boo-boo (as in yikes... or holysmokes...or dag-nabbit...or dog-gone-it)

I guess some of our "yank" colloquialisms are almost as colorful as yours...and all within the "same" language! (well...almost!)

jackie
 

Lily

*Believe*
Messages
677
Adam...you don't know how much I appreciate the dinner invitation with your family! (and if not for that damn Icelandic Volcano...who knows!) I'd LUV your recipe, though...as long as it's ratless (LUV=that's one of my favorite terms...i can hear it said with that cute accent!)

As for "hi-jacking...that's what we are doing right now - as in going down a "rabbit trail"..."veering off the topic" etc....and "rats" is my standard exclamation for making a boo-boo (as in yikes... or holysmokes...or dag-nabbit...or dog-gone-it)

I guess some of our "yank" colloquialisms are almost as colorful as yours...and all within the "same" language! (well...almost!)

jackie

Jackie, no one hi-jacks a thread better than you, and it's ALWAYS worthwhile. When you do it, it's
hi-jackie-ing! Please don't ever stop:Retro tongue:
 

Jerry S

Senior Member
Messages
422
Location
Chicago
Jackie, no one hi-jacks a thread better than you, and it's ALWAYS worthwhile. When you do it, it's
hi-jackie-ing! Please don't ever stop:Retro tongue:

I strongly agree. The side trips are often better than the main route - especially if it's Jackie's side trip.
 

Megan

Senior Member
Messages
233
Location
Australia
Where's the money coming from?

Regarding the UK and Dutch studies. Just a thought, does anyone know who funded these studies? I have seen discussion on ealier threads as to whether particular researchers have been paid directly by insurance companies etc. (apparently denied), but not any discussion I can recall about who funded the studies themselves?

Eg. if a researcher is employed by an institution to do a study, has that institution received any grants, payments or interests of any kind from organisations with competing interests that may have contributed to the study? Does the institution have associations or receive funding from such organisationsin general? I would imagine in this scenario that an employee of an institution could legitimately say they have not received any payments directly from such people. Has anyone asked directly or FOI'd these questions?

It seems to me that one of the most productive things we patients can be doing is asking these and other questions. I used to work for a government department where I responded to FOI requests. It struck me at the time that it was like a game of 'battleships' - if you don't ask exactly the right question you can be met with denial even if you are very close to the truth. It was astonishing how often people would simply miss the 'right question' (unless they were privvy to inside information before asking the question - now there's a thought!). We need to keep asking and asking creatively. Unfortunately I am not a UK or Dutch citizen so cannot put forth some questions I have.

The revelations of the WPI letter are striking in showing just how different things can look when certain information is simply not revealed.
 

garcia

Aristocrat Extraordinaire
Messages
976
Location
UK
It seems to me that one of the most productive things we patients can be doing is asking these and other questions. I used to work for a government department where I responded to FOI requests. It struck me at the time that it was like a game of 'battleships' - if you don't ask exactly the right question you can be met with denial even if you are very close to the truth. It was astonishing how often people would simply miss the 'right question' (unless they were privvy to inside information before asking the question - now there's a thought!). We need to keep asking and asking creatively. Unfortunately I am not a UK or Dutch citizen so cannot put forth some questions I have.

The revelations of the WPI letter are striking in showing just how different things can look when certain information is simply not revealed.

Great metaphor Megan! I never thought of it like that. It is very much battleships!

BTW in the UK at least you do not have to be a citizen or resident to make a FOI request. Anyone can do it.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
Megan,

You asked about funding for the studies.

The Wessely/McClure one was funded from

Funding: AC, DC and SW are partially funded by the South London and Maudsley NHS Foundation Trust/Institute of Psychiatry National Institute of Health Biomedical Resaerch Centre.

The team from Imperial College is grateful for support from the NIHR Biomedical Research Centre Funding Scheme. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

Competing Interests: The authors have declared that no competing interests exist.
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
Messages
3,061
Location
UK
Just to confirm that one does not need to be a UK resident in order to apply for information under the FOIA 2000.

Both Kim and Julius (ICL FOI) are outside the UK.

After the three requests were fulfilled I did suggest that since the responses raised more questions than answers that others with an interest might like to submit a further set of questions.

This was met with silence at the time. Due to other commitments, I have not had time, myself, to follow up these responses.

But there is nothing to stop anyone from submitting additional requests for information - whether UK or outside the UK.

EDIT: Bear in mind that under the UK FOI Act, there is no obligation for institutions or organisations to provide information not held by them and that information officers will not carry out research in order to fulfil requests for information not held by the institution, itself, (though in some cases they will advise where the information is held, if this is known to them).

Suzy
 

fred

The game is afoot
Messages
400
South London and Maudsley NHS Foundation Trust

Funding: AC, DC and SW are partially funded by the South London and Maudsley NHS Foundation Trust/Institute of Psychiatry National Institute of Health Biomedical Resaerch Centre.

South London and Maudsley NHS Foundation Trust

http://www.slam.nhs.uk/about/who.aspx

Provider of mental health and substance misuse services in Croydon, Lambeth, Lewisham and Southwark; substance misuse services in Bexley, Greenwich and Bromley; and specialist services for people from across the U.K.

A cross between a large local mental health trust and a teaching hospital, linked to a major international research institute

Provider of the most extensive portfolio of mental health services in the United Kingdom

A world leader in research, working in partnership with the Institute of Psychiatry, Kings College London

The largest mental health training institution in the country.
 

fred

The game is afoot
Messages
400
Institute of Psychiatry National Institute of Health Biomedical Research Centre

Funding: AC, DC and SW are partially funded by the South London and Maudsley NHS Foundation Trust/Institute of Psychiatry National Institute of Health Biomedical Resaerch Centre.

Institute of Psychiatry National Institute of Health Biomedical Research Centre

From ME agenda.

http://meagenda.wordpress.com/category/institute-of-psychiatry/biomedical-research-centre/

Research Worker: Institute of Psychiatry Biomedical Research Centre

July 5, 2007 meagenda

The Institute of Psychiatry is currently advertising a post for a Research Worker. The project is funded through the newly established Biomedical Research Centre. The new National Institute for Health Research South London and Maudsley NHS Trust and Institute of Psychiatry Biomedical Research Centre receive funding from the Department of Health for research into CFS/ME.

Here are some extracts from the Job Description and Person Spec:

Job vacancy: Research Worker

Institute of Psychiatry Biomedical Research Centre

Closing date for applications: 13th July 2007
Please quote reference number 07/R68.

Candidates who would like to discuss the post further are invited to contact Prof Ulrike Schmidt on 020 7848 0181 or Prof Trudie Chalder on 0207 848 0406

Emotional Processing in Psychosomatic Disorders

Department of Psychological Medicine

We would like to invite applications from psychology graduates for the above post which will involve working across the Section of Eating Disorders and the Chronic Fatigue Research and Treatment Unit on a project entitled Emotional Processing in Psychosomatic Disorders.

This project is funded through the newly established Biomedical Research Centre at the Institute of Psychiatry.

The successful candidate will have relevant research experience and preferably experience of working with eating disorder and/or chronic fatigue patients.

Starting salary in the range 23,175 pa to 24,332 pa (inclusive of 2,323pa London Allowance), depending on qualifications and experience.

To obtain further particulars and further information about the Institute, please see our website or alternatively email

Applications, in the form of a CV (including details of two referees), covering letter and equal opportunities statement, should be emailed to this address or posted to the address given in the further particulars.

Please quote reference number 07/R68 in all correspondence.

Closing date for applications 13th July 2007.

Only candidates shortlisted for interview will be contacted.

Equality of opportunity is College policy.
 

Megan

Senior Member
Messages
233
Location
Australia
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?

I find it tiring to make too many posts on this board and have thought it more constructive to channel my energy into doing a bit of behind the scenes stuff here.

One of the main thoughts behind my post was based on the observation that some of us have sympathetic contacts in the scientific community or medical profession that may tell us privately bits and pieces about what they think is going on, but they all have careers and reputations to protect so may not wish to speak out (or have the time to seek the evidence). This is understandable though frustrating. But it doesn't mean we can't use what they tell us anonymously to inform our efforts to help get the truth out there, whatever that may be! Hence the reference to the battleships and the informed vs. the uninformed FOI.

One reason I raised the issue of funding was that I had heard from such a contact that insurance companies are thought to have helped fund the Dutch and UK studies. I haven’t checked what was on the papers. But from what people here are saying that might not be the case, at least in the Imperial College one.
 

maryb

iherb code TAK122
Messages
3,602
Location
UK
From ME agenda.

http://meagenda.wordpress.com/category/institute-of-psychiatry/biomedical-research-centre/

Research Worker: Institute of Psychiatry Biomedical Research Centre

Starting salary in the range 23,175 pa to 24,332 pa (inclusive of 2,323pa London Allowance), depending on qualifications and experience.


Well you pay peanuts and you get ???????? Is this all we're worth?
There again all the money available in the NHS goes to the staff, premises etc, nothing is spent on tests or medical treatments for us, so I suppose why would they want someone really good, who they'd have to pay a proper wage to.
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
Messages
3,061
Location
UK
Well you pay peanuts and you get ???????? Is this all we're worth?
There again all the money available in the NHS goes to the staff, premises etc, nothing is spent on tests or medical treatments for us, so I suppose why would they want someone really good, who they'd have to pay a proper wage to.


This is the correct URL for that posting.

http://meagenda.wordpress.com/2007/...ute-of-psychiatry-biomedical-research-centre/


Emotional Processing in Psychosomatic Disorders

Department of Psychological Medicine



JOB DESCRIPTION

Job Title Research Worker
Department Section of Eating Disorders and Chronic Fatigue Research