Ellen's Statement about the London Criteria

van: Ellen Goudsmit
datum: 2005/05/10 di PM 03:15:50 CEST
aan: ME-NET@NIC.SURFNET.NL
onderwerp: Re: London criteria -the Facts

also

From: Ellen Goudsmit

Date/Time: 10 May 2005 12:16:04 -0000

To: IMEGA-e@yahoogroups.com

For balance. A formal response to claims by Miss Williams on the 9th May

Consider ALL the evidence and decide for yourself.

My comments are in capital letters for differentiation. I will refer to
the London criteria henceforth as the LC. I apologise for any repetition.

Ellen Goudsmit PhD and the "London" criteria
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
The facts

Margaret Williams

9th May 2005

Given that the Medical Research Council intends to use the
"London" criteria for what is described as 'secondary analysis' in
the PACE trials that will use the Oxford 1991 criteria that
deliberately include those with psychiatric disorders, it is
imperative that the issue of the authenticity of the "London"
criteria is publicly addressed.

Miss Ellen Goudsmit PhD has recently posted challenges to
information supplied by others:

(i) "As was noted last year, the London criteria have been used
in various studies, some of which have been published. The
London criteria are as defined and operationalised as the other
research criteria from that time. The London criteria were
devised for MEAction, now AFME, for use in all studies funded
by them. All teams who received a grant, except one, kept to the
contract. Amongst those who received a grant were Dr Durval
Costa for his study on hypoperfusion (published in the QJM). I
urge activists not to undermine (the arguments of authors whom
she continues to assert used the 'London' criteria in their
research) by giving inaccurate information" ("The London
criteria: correction and clarification": Co-Cure, 7th May 2005)

(ii) "The LC ('London' criteria) were devised so researchers
could identify the 'real deal' patients and they did! The
abnormalities they found using the LC, e.g. hypoperfusion,
reduced muscle power etc were found in ALL the patients who
met the criteria. Costa et al was one of the most important
studies to date. Too little blood to the brain. Paul et al was
good and that too, was on people with ME. Those of us who
fought for research on real deal patients back in the early 90s
deserve credit. Not denial" (CFS Research, 8th May 2005).

FACT: The "London" criteria have never been published.

THEY HAVE SINCE BEEN PUBLISHED ON THE INTERNET, AS MANY OF MS. WILLLIAMS
PAPERS HAVE. IF SHE ACCEPTS THAT HER ARTICLES HAVE BEEN =93PUBLISHED=94 BY
BEING ON THE NET, THEN SHE MUST ACCEPT THAT THE LC HAVE ALSO BEEN
PUBLISHED. THEY ARE IN THE PUBLIC DOMAIN, ACCESSIBLE TO EVERYONE. THEY HAVE
NOT BEEN PUBLISHED IN A PEER-REVIEWED MEDICAL JOURNAL BUT NEITHER WERE
OTHERS E.G, SOME OF THE HOME-MADE DEFINITIONS USED BY THE NIJMEGEN TEAM,
AND SHARPE ET AL (THE JRSM IS NOT PEER-REVIEWED). GIVEN THE LC WERE
FROMULATED FOR IN-HOUSE USE AS OPPOSED TO GENERAL USE, THERE WAS NO NEED
FOR THEM TO BE PUBLISHED IN A JOURNAL AT THAT TIME. THEY COULD NOT HAVE
BEEN PUBLISHED EVEN IF WE HAD WANTED TO, GIVEN THE BLANKET BAN ON ANYTHING
POSITIVE REGARDING ME IN BRITISH JOURNALS, THE ONLY JOURNALS WHO MIGHT HAVE
BEEN INTERESTED. BUT AS A RESULT OF THE ACCURACY OF THE CRITERIA, WE FOUND
THAT OTHERS ALSO REQUESTED TO USE THEM. THEY WORKED. AND AS WE KNOW FROM
THEIR USE, THE OXFORD AND CDC 1994 HAVE PROBLEMS. THEY LACK SPECIFICITY. WE
DON'T HAVE THE EXACT FIGURES,, BUT WE KNOW AND IT IS GENERALLY ACCEPTED,
THAT THEY SELECT A MIXED POPULATION. NOT JUST RAMSAY-DEFINED ME.

They
were mentioned in the National Task Force Report as being one
of nine different "PROPOSED" definitions and descriptions (see
page 88, Appendix B, REPORT from THE NATIONAL TASK
FORCE ON CFS/PVFS/ME: 13th September 1994: Westcare,
Bristol --- note that Westcare no longer exists and is part of
Action for ME).

SADLY, THE INFORMATION WAS NOT CHECKED WITH ANYONE WHO KNEW THE FACTS AND
WAS WRONG. WE CANNOT BE RESPONSIBLE FOR WHAT THIRD PARTIES CHOOSE TO WRITE
IN THEIR PUBLICATIONS. IF MS. WILLIAMS WISHES TO WRITE SOEMTHING WITHOUT
CHECKING AND GETS IT WRONG, ALL I CAN DO IS CORRECT THE ERRORS AFTER THE
EVENT. AS I HAVE CONSISTENTLY DONE. IF PEOPLE CHOOSE NOT TO BELIEVE THIS,
AND PREFER TO REPEAT INACCURACIES, THAT IS UP TO THEM. HOWEVER, I THINK
THIS IS MISLEADING.

Merely being mentioned in a Report or
published document is entirely different from and does not
equate with the criteria having been published and used in
research.

THIS IS TRUE, BUT THEY WERE USED IN RESEARCH. MS. WILLIAMS HAS PREVIOUSLY
QUOTED FROM THE WHITING REVIEW, SO SHE HAS A COPY. IN THAT REVIEW, IT LISTS
THE CRITERIA AS HAVING BEEN USED IN STUDIES AND GIVES THE REFERENCE OF ONE.
WILLIAMS THEREFORE KNEW THAT THE CRITERIA HAD BEEN USED IN RESEARCH AT THAT
TIME. AS NOTED BELOW, MS WILLIAMS ACCEPTS THEY WERE USED BY PERRIN IN HIS
PUBLISHED STUDY, AND THE ONLY ARGUMENT SHE OFFERS IS THAT HE USED THEM
THINKING THAT THEY HAD BEEN PUBLISHED. BUT SHE ACCEPTS HE USED THEM. I WILL
DEAL WITH HIS ALLEGED MISCONCEPTIONS BELOW.

FACT: Before criteria can be USED to select patients for a
study, they need to be PUBLISHED in an accessible form in a
medical journal (the 1988 Holmes et al criteria were published in
Annals of Internal Medicine:1988:108:387-389; the 1991 Oxford
criteria were published in the Journal of the Royal Society of
Medicine:1991:84:118-121 and the 1994 CDC criteria were
published in Annals of Internal Medicine: 1994:121:953-959.
The "London" criteria have never been so published or
submitted for peer review.

THIS IS NOT CORRECT. ANYONE CAN USE CRITERIA IN RESEARCH E.G. HO-YEN HAS
TENDED TO USE HIS OWN WITHOUT SUBMITTING THEM FOR PEER-REVIEW, BEHAN USED
HIS OWN CRITERIA FOR PVFS FOR A TIME, AND I WAS INFORMED BY TWO SCIENTISTS
FROM MERGE THAT THEY USE THEIR OWN, UNPUBLISHED CRITERIA FOR ME IN
ADDITION TO THE CDC 1994 CRITERIA. CONVERSELY, MANY USE THE PUBLISHED
OXFORD AND CDC 1994 CRITERIA, WITH ALL THEIR FLAWS. WHAT MATTERS IS WHETHER
CRITERIA WORK WELL IN PRACTICE. THAT IS WHY PEOPLE THINK OF THE LC. IF IN
1994 YOU WANTED TO STUDY ME USING RESEARCH CRITERIA, THEY WERE THE ONLY
ONES AROUND, COMPILED BY SCIENTISTS WITH A DEGREE OF EXPERTISE IN THE
SUBJECT. AND THEY DID THE JOB.

THEY EXIST BECAUSE A CHARITY DID NOT WISH TO SPEND THEIR MEMBERS' MONEY ON
RESEARCH INTO CFS\NEURASTHENIA. THEY WANTED THAT MONEY TO GO TO PURE ME.

FACT: The London criteria have not been consistently defined
-- there are different VERSIONS of them and a definitive version
has not been identified.

THERE ARE TWO VERSIONS AND I PREFER VERSION 1. PROF. WHITE HAS BOTH. HE CAN
CHOOSE. THE LC WERE USED IN STUDIES FUNDED BY ME ACTION, AND THE
RESEARCHERS RECEIVED GUIDANCE FROM ONE OF THE PHYSICIANS. USUALLY, THE
MEDICAL ADVISOR. THEY WERE ALSO OFFERED A SCREENING QUESTIONNAIRE WHICH
ALLOWED THEM TO DEFINE THEIR SAMPLES EVEN MORE ACCURATELY. IT WAS COMPILED
BY DR. MACINTYRE. THERE WAS CLEARLY NO CONFUSION IN PRACTICE AS THE
CRITERIA WORKED WELL. WE HAD NO REPORTS OF PROBLEMS AND RESEARCHERS WHO
WERE ABLE TO COMPARE THEM WITH THOSE USED BY RAMSAY AND OTHERS WERE
GENERALLY IMPRESSED. THE SENSITIVITY AND SPECIFICTY WAS HIGH THOUGH DETAILS
WERE NOT PUBLISHED. THIS SHOULD BE COMPARED TO THE MANY PROBLEMS REPORTED
WITH SOME OF THE MOST OFTEN USWED PUBLISHED RESEARCH CRITERIA.

FACT: The authors of the London criteria are unknown (various
differing claims have been made by Ellen Goudsmit about the
authorship.)

THE CRITERIA WERE FOR IN-HOUSE USE WHEN THEY WERE COMPILED AND SO THE NAMES
OF THE AUTHORS WERE NOT IMPORTANT. THE NAMES WERE REQUIRED BY WHITING ET
AL. I GAVE THE NAMES OF THE PEOPLE WHOM I RECALLED HAD BEEN INVOLVED AND I
CONTACTED OTHERS TO CHECK THAT I WAS CORRECT. I HAVE NO EVIDENCE FROM ANY
RELIABLE SOURCE THAT I WAS WRONG.

FACT: The London criteria have never been officially accepted
into common usage, nor have they ever been validated or
operationalised (as conceded by Ellen Goudsmit herself on 4th
September 2004 where she states "The LC have not been
validated").

AS NOTED, THE CRITERIA WERE AS OPERATIONALSIED AS OTHERS AT THE TIME, NONE
OF THE CRITERIA IN USE HAVE BEEN VALIDATED, AND GIVEN THE PURPOSE OF THE
CRITERIA, THEY WERE NOT AIMED AT GENERAL USAGE. WE LEARNT AS WE WENT ALONG,
THAT THEY DID WHAT THEY WERE SUPPOSED TO. THE CANADIANS HAVE NOT DONE THE
REQUIRED TESTING EITHER, SO ONE CAN'T CLAIM THEY HAVE BEEN VALIDATED.

Ellen Goudsmit makes specific claims about
the London criteria:

(i) she claims that the London criteria (LC) have been USED to
select patients and she provides various references that purport
to support her claim and

(ii) she claims to have been a co-author of the LC but she also
claims to have had nothing to do with the authorship of the LC.

These issues are addressed below.

(i) Consideration of the papers that Ellen Goudsmit claims
used the "London" criteria in published research:

In an email dated 7th June 2004, Ellen Goudsmit PhD wrote to
someone asking her ("for old times sake") to confirm publicly the
following about the "London" criteria:

"that they were first published in the National Task Force report
and that they are very similar to Ramsay and Dowsett's clinical
definition ie. they are operationalised criteria for research on
ME as defined by Ramsay and Dowsett. Those are the facts.
They were, almost word for word, a copy of Dowsett's work".

(Criteria cannot be "operationalised" before they have been
defined or published or if the authors have not been
ascertained).

THIS IS INACCURATE. CRITERIA ARE DEFINITIONS, AND THE AUTHORS ARE
COMPLETELY IRRELEVANT FOR OPERATIONALISATION. ONE CAN TAKE THE CDC 1994
CRITERIA AND OPERATIONALISE THEM DIFFERENTLY PER STUDY. THE CBT SCHOOL HAVE
BEEN DOING THIS FOR YEARS. SOME USE HIGHER SCORES ON MEASURES, OTHER LOWER.
THE RESEARCHERS HAVE OPERATIONALISED THE OXFORD CRITERIA FOR PACE. THIS
IS THEIR PERSONAL CHOICE. YOU CAN TAKE ANY CRITERIA AND OPERATIONALISE AS
YOU WISH. INDEED, YOU CAN REDEFINE ANY CRITERIA, AS LONG AS YOU NOTE WHAT
YOU HAVE DONE. NIJMEGEN ARE ADAPT AT THAT AND GET THEIR ARTICLES IN PEER-
REVIWED JOURNALS. AS LONG AS ANOTHER CAN REPEAT YOUR STUDY. THERE ARE
STUDIES PROMOTED BY MS WILLIAMS WHICH MAKE NO MENTION OF ANY ATTEMPTS TO
OPERATIONALISE AND DO NOT HAVE THE INFORMATION TO REPLICATE IN THE
PUBLICATION. WE DON'T EVEN KNOW THE AUTHORS. WE CANNOT CHECK. IF
OPERATIONALISATION AND VALIDATION ARE IMPORTANT TO HER, AND SHE DOES NOT
VALUE STUDIES WHICH USE UNPUBLISHED CRITERIA, THEN SHE HAS TO GO THROUGH
HER REFERENCES IN HER ARTICLES AND DO SOME EDITING.

I THINK WE SHOULD UNDERSTAND THE COMPLEXITY OF THE ME WORLD AND ACCEPT THAT
WE CANNOT ALWAYS WRITE EXACTLY WHAT WE WISH. THE ABOVE DOES NOT IMPLY ANY
CRITICISMS OF ANY RESEARCHER. JUST CRITICISM OF COMMENTATORS.

The same email also stated: "They (ie. the "London" criteria)
were used in all studies funded by AFME from 1993 to 1997, eg.
Costa et al, who discovered hypoperfusion in the brainstem, and
Scholey et al, who found cognitive impairment consistent with
organic brain disease. Paul et al also used them and found
support for Ramsay's definition, especially the delayed recovery
for muscle power".

From this, it seems that Miss Goudsmit believes that the
"London" criteria were used for patient selection in the studies
she mentioned, and that as a result of using the "London"
criteria, significant abnormalities in patients with ME/CFS were
elucidated.

This is not the case, as can be seen from the papers that Ellen
Goudsmit claims USED the "London" criteria (ie. for selection of
patients to be studied):

Costa, Tannock & Brostoff (1995)
``````````````````````````````````````````````
(Brainstem perfusion is impaired in chronic fatigue syndrome.
DC Costa, C Tannock and J Brostoff. Quarterly Journal of
Medicine December 1995:88:767-773)

This paper makes no mention of the "London" criteria. It
confirms about the population studied that "All ME/CFS patients
were clinically assessed and diagnosed according to standard
criteria (Oxford), CDC and ME Action". The reference in the
paper for the ME Action criteria is number 14. That reference
states "Criteria for a diagnosis of ME for use in the ME Action
funded research. Based on the criteria suggested by WRC
Weir in Postviral Fatigue Syndrome by Jenkins & Mowbray
pp248-9". The Jenkins & Mowbray textbook at pp 248-249 sets
out Dr Weir's own modification of the Holmes et al 1988 criteria
and is virtually identical to what was later published as the
"London" proposed criteria in the Westcare Task Force Report
in 1994. Thus the question arises as to how much of the
modification to the Ramsay original case description of ME that
Miss Goudsmit has variously claimed as being her own work
and then as being taken almost word for word from Dr Betty
Dowsett can be ascribed to Dr Dowsett and how much to Dr
Weir.

THE LONDON CRITERIA WERE DEVELOPED FOR ME ACTION, AND COSTA REFERS TO THE
CRITERIA AS THOSE FROM ME ACTION. IF WILLIAMS BELIEVES HE USED DIFFERENT
CRITERIA, CAN SHE PROVIDE A REFERENCE? A COPY? I HAVE DETAILS OF THE FORM
HE SIGNED. CAN SHE PROVE HE DID NOT USE WHAT HE AGREED TO USE?

IF ONE COMPARES THE LC TO THOSE FROM WEIR, ONE SEES SOME NOTABLE
DIFFERENCES. NO ONE COMPARING THEM WILL BE CONFUSED.

Lorna Paul et al 1999
``````````````````````````````
(Demonstration of delayed recovery from fatiguing exercise in
chronic fatigue syndrome Lorna Paul et al. European Journal
of Neurology 1999:6:63-69)

The case definition used in this study was the CDC Fukuda
1994: the authors state "The patients were all ambulatory, and
fulfilled established criteria for chronic fatigue syndrome (Fukuda
et al, 1994)". There is no reference to the "London" criteria
anywhere in the paper itself or in the references. The text does
indeed mention the Oxford criteria, but the cited population
studied under the "Methods" description refers only to the CDC
1994 Fukuda case definition, thus it cannot be claimed that the
"London" criteria were used for patient selection.

LORNA PAUL RECEIVED A =A310,000 GRANT FROM ME ACTION AND THE CONTRACT
REQUIRED HER TO USE THE LC. IF SHE DID NOT, SHE BREACHED HER CONTRACT AND
AFME CAN ASK FOR THE RETURN OF THE GRANT. THE CONTRACT DOES NOT REQUIRE THE
CRITERIA TO BE NAMED. SEE ALSO ABOVE. I AM CONFIDENT THAT THIS STUDY DID
NOT INVOLVE PEOPLE WITH CFS\NEURASTHENIA A LA CDC 1994 CRITERIA BUT THAT IT
SELECTED PEOPLE WITH ME.

Lorna Paul et al 2001
`````````````````````````````
The effect of exercise on gait and balance in patients with
chronic fatigue syndrome. Lorna M Paul et al.
Gait and Posture 2001:14: 19-27

Eleven subjects with CFS and eleven control subjects
participated in this study. All patients fulfilled the CDC 1994
criteria for CFS. There is no reference to the "London" criteria
anywhere in the paper.

I NEVER CLAIMED THAT THE LC WERE USED IN THIS STUDY. THIS DOES NOT
UNDERMINE MY ARGUMENT.

Whiting et al --- the York Systematic Review (2001)
``````````````````````````````````````````````````````````````````````
(Interventions for the Treatment and Management of Chronic
Fatigue Syndrome. Penny Whiting et al JAMA 2001:Sept 19:
286:11:1360-1368)

Miss Goudsmit claims that her own work was based on the
"London" criteria and was used in this Systematic Review.

I NEVER CLAIMED MY OWN WORK FOR MY PHD WAS BASED ON THE LC AND NOTE THE
LACK OF A REFERENCE HERE. THE LC ARE REFERRED TO IN THE REVIEW, FULL TEXT
AVAILABLE ON CO-CURE. THE REVIEW INCLUDED MY STUDY. I WAS VERY FLATTERED.
IT WAS ONLY A PILOT. I DON'T THINK ANY OTHER PILOT STUDIES WERE INCLUDED.
I ENDED UP IN A LIST OF THE BEST CONTROLLED TRIALS, AND OBVIOUSLY IT DID
NOT MEASURE UP TO THOSE WHICH USED LARGER SAMPLES AND INTENTION-TO-TREAT
ANALYSIS WHICH IS SO EN VOGUE. BUT IT WAS STILL IN THERE! AS WAS PERRIN. I
DID RESEARCH ON ME, AS DID HE.

It is submitted that such a claim is misleading because once again,
there is no mention of the "London" criteria, but the York Review
does reference Ellen Goudsmit's dissertation itself; it was
called "Learning to Cope with Post-infectious Fatigue
Syndrome: a Follow-up Study in the Psychological Aspects and
Management of Chronic Fatigue Syndrome": Uxbridge,
England, Brunel University, 1996.

MS WILLIAMS IS AGAIN, KNOWLINGLY MISLEADING READERS. THE REVIEW DID NOT
ASSESS DISSERTATIONS IN FULL. ONLY CONTROLLED TRIALS. AS MS WILLIAMS KNOWS,
MY PHD WAS BASED ON MORE THAN ONE STUDY. THE REVIEW DID NOT ASSESS THE TWO
OTHERS AS THEY WERE NOT FOCUSED ON MANAGEMENT. AND THIS REVIEW WAS ABOUT
MANAGEMENT. I AM PLEASED THAT MS WILLIAMS HAS NOT REPEATED THE ERROR THAT
IT RECEIVED THE LOWEST SCORE, AS IT DID NOT.

On 4th February 2005 Miss Goudsmit publicly posted the
following in relation to her thesis: "(The York Review team) only
assessed a pilot study which was included in my thesis. The title
of my thesis is different". Unless Miss Goudsmit provided
misinformation to JAMA which published the York Review
(JAMA 2001:286:11:1360-1368), the reference by Whiting et al
of the York Review team to Miss Goudsmit's work was indeed to
her thesis. It is submitted that the correct reference and title for
something that is within a thesis is the actual title of the thesis
(and not the sub-context within the thesis, otherwise how could it
be sourced?).

THE TITLE OF MY THESIS IS AVAILABLE ONLINE AND IN MY LETTER TO JAMA WHICH
MS. WILLIAMS WILL HAVE SEEN AS SHE CITED FROM IT ELSEWHERE. THE AUTHORS OF
THE REIVEW MISSED OUT A FULL STOP AFTER A FOLLOW-UP STUDY. I DID NOT
MISLEAD JAMA. THEY DID NOT REQUIRE ME OR ANY OTHER AUTHOR OF WORK CITED, TO
PROOF-READ. I HAD NO CONTACT WITH JAMA ABOUT THIS STUDY BEFORE PUBLICATION,
AND DID NOT KNOW IT WOULD BE PUBLISHED THERE. WHITING ET AL FORGOT A FULL
STOP. THIS WAS THEIR ERROR AND I CORRECTED IT IN MY SUBSEQUENT LETTER.

I THINK TO FOCUS ON TYPOS IS NITPICKING, AS THE BEST OF US DON'T ALWAYS GET
IT RIGHT. AND ESPEICALLY IF YOU HAVE ME AND DODGY EYES, AS I HAVE. FOR
INSTANCE, I NOTE MS WILLIAMS NEXT SENTENCE. DISCREPANCY ABOUT THE ITS
TITLE. I'M NOT GOING TO SPECULATE ABOUT DEEPER MEANINGS. IT'S A TYPO.

WHITING INCLUDED A TYPO. I INCLUDE TYPOS. MS WILLIAMS KNOWS THE TITLE OF MY
THESIS AS SHE REFERRED TO IT CORRECTLY OFTEN ENOUGH. INCLUDING IN THIS
PAPER, SEE BELOW.

On the subject of Miss Goudsmit's thesis, there would seem to
be some discrepancy about the its title, given that on the official
doctoral register it is listed as being "The Psychological
Aspects and Management of Chronic Fatigue Syndrome", whilst
in the JAMA review Whiting et al refer to it as "Learning to Cope
with Post-Infectious Fatigue Syndrome: a Follow-up Study in the
Psychological Aspects and Management of Chronic Fatigue
Syndrome", but in her own CV posted on her website, Miss
Goudsmit has changed it to "The psychological aspects and
treatment of the chronic fatigue syndrome". She also refers to it
by this last title in her "Medical Updates" dated 1st September
1996.

THE INFORMATION IN THE CV SHOULD BE ACCURATE AND REFERS TO MANAGEMENT. IT
WAS SO THE LAST TIME I CHECKED. TO ERR IS HUMAN. I MAKE THE ODD MISTAKE AND
IF I DO, IT'S NOT DELIBERATE AND I CORRECT IT WHEN I'M ALERTED TO IT.
TREATMENT VERSUS MANAGEMENT. THIS IS SURELY NOT A GRAVE ERROR?

The Scholey et al presentation (1999)
````````````````````````````````````````````````````
(A comparison of the cognitive deficits seen in myalgic
encephalomyelitis to Alzheimer's Disease. Pat McCue,
Andrew Scholey and Keith Wesnes Proceedings of the British
Psychological Society, 12th January 1999 )

This was an abstract that was presented as a poster
presentation at a BPS Conference in January 1999. Abstracts
are recorded by the BPS but the study itself has never been
published. This was confirmed by Professor Andrew Scholey
himself and also by the British Psychological Society.

THE BPS DOES NOT KEEP A TRACK OF WHO PUBLISHES WHAT. IT DOES NOT HAVE SUCH
A SERVICE. THEY DO NOT ASK MEMBERS WHAT THEY HAVE PUBLISHED. THEY DO NOT
POSSESS SUCH A DATABASE. PROF. SCHOLEY WOULD HAVE TOLD ANYONE WHO ENQUIRED
THAT HE IS HOPING TO SUBMIT THIS STUDY FOR PUBLICATION. BUT THE ISSUE I WAS
ASKED TO ADDRESS WAS NOT, HAS THAT STUDY BEEN PUBLISHED, BUT DID IT USE THE
LC. IT DID!

The study
looked at 20 patients (self reported from ME support groups in
the North-East of England) and the abstract states that they
satisfied the London criteria, although the criteria used were not
defined in the abstract.

THEY WERE NAMED AS THE CRITERIA USED TO SELECT PATIENTS. ABSTRACTS DO NOT
GO INTO DETAILS. THEY ARE SUPPOSED TO BE SUMMARIES. IF ONE WANTS DETAILS
ONE CAN CONTACT THE RESEARCHERS.

Scholey et al also presented another abstract at a BPS
conference in Belfast held on 8th-11th April 1999 (Cognitive
deficits in Chronic Fatigue Syndrome are reversed by oxygen
administration Andrew Scholey, Pat McCue, Ingrid Mackay,
Mark Moss and Keith Wesnes). The abstract states that the
participants were 16 patients satisfying both the Oxford and the
London criteria. Again, this study has not been published.

I DID NOT CLAIM IT HAD BEEN BUT THIS INDICATES THAT THE CRITERIA WERE USED
IN YET ANOTHER STUDY, WHICH IS HELPFUL. I DID NOT KNOW ABOUT THIS STUDY
UNTIL MS. WILLIAMS PROVIDED THE REFERENCE.

With regard to Professor Scholey's work and the significance
that can be drawn from it on the basis that the "London" criteria
were used, patients were self-reported and it is unpublished
material.

ALL PATIENTS FULFILLED THE LC. ABSTRACTS ARE PUBLISHED MATERIAL. THEY CAN
BE CITED. THE LC REQUIRE THAT OTHER DISORDERS HAVE BEEN RULED OUT. BY
DOCTORS. IT'S NOT JUST A LIST OF SYMPTOMS.

In her post of 8th May 2005 on CFS Research, Miss Goudsmit
now concedes that the Scholey work has not been published:
"Other researchers who used (the 'London' criteria) were
McHale et al and McCue, Scholey et al. The former did not
mention them in their paper and the other hope (sic) to submit a
paper".

In the same post, Miss Goudsmit now states unambiguously:
"Paul et al did not mention them (ie. the 'London' criteria) in their
paper".

THIS IS CORRECT. THE PAPER DOES NOT LIST THEM. I HAVE NEVER CLAIMED THEY
DID LIST THEM. THERE IS NO PROBLEM. PAUL ET AL DID NOT TELL ME IN 1999 THAT
THEY HAD BROKEN THE CONTRACT TO USE THEM AND HENCE I INCLUDED THE
REFERENCE, IN GOOD FAITH, WHEN I DID.

In that same post of 8th May 2005 on CFS Research, Miss
Goudsmit states: "Here are the details of three of the published
studies which made use of the London criteria. I hope this ends
the misinformation once and for all. Here are the references
again:

P McCue, CR Martin, T Buchanan, J Rodgers, AB Scholey
Psychology, Health & Medicine, 2003, 8, 4, 425-439. An
investigation into the psychometric properties of the Hospital
Anxiety and Depression Scale in individuals with chronic fatigue
syndrome

Available online
http://www.tandf.co.uk/journals/online/1354-8506.asp
Go to Browse the volumes, click on 2003, November. See p.
430.

ALSO SUMMARISED IN MY UPDATES.

Perrin, RN, Edwards, J and Hartely, P. An evaluation of the
effectiveness of osteopathic treatment on symptoms associated
with myalgic encephalomyelitis. A preliminary report. Journal of
Medical Engineering & Technology, 1998, 22, 1, 1-13. See p.2.

Listed http://www.tandf.co.uk/journals/archive/tmet-con.asp

but
full text not available (so interested parties will have to order from
a library).

THIS WAS LISTED IN THE WHITING REVIEW.

Costa, DC., Tannock, C and Brostoff, J. Brainstem perfusion is
impaired in chronic fatigue syndrome QJM, Vol 88, Issue 11
767-773.
(Miss Goudsmit did not provide the year of publication).
Summary online at
http://qjmed.oupjournals.org/cgi/content/abstract/88/11/767

In the first of the three papers above (P McCue, A Scholey et al
in Psychology, Health and Medicine, 2003), the paper itself
states: "It is notable that some authors suggest that rates of
current depression in CFS generally resemble those of patients
with multiple sclerosis or cancer (Goudsmit 1996)" and it gives
Miss Goudsmit's dissertation as the reference for this statement
(Goudsmit E. (1996). Learning to Cope With Post-Infectious
Fatigue Syndrome: A Follow-up Study. In: The Psychological
Aspects and Management of Chronic Fatigue Syndrome
[dissertation]. Uxbridge, England: Brunel University). No
mention is made of the "London" criteria in this reference.