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


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.

THE PAPER DOES MENTION THE CRITERIA AS HAVING BEEN USED. AS NOTED BELOW.
IT'S ON P. 430 UNDER PROCEDURE. I NOTE THE CORRECT CITATION OF MY STUDY AND
THE PHD HERE. AS DISCUSSED BEFORE, I DID NOT USE THE LC IN MY THESIS. I
USED THEM IN LATER STUDIES THOUGH.


Under "Procedure", this paper states: "Participants were
recruited in a number of different ways. Advertisements were
placed in CFS/ME magazines and newsletters and flyers were
posted to public libraries across the North East of England. All
participants were requested to go to the study's website,
www.cfsresearch.net. At the site, participants proceeded to the
next page on which the survey instrument was presented. This
was comprised of the following questionnaires: a symptom
questionnaire (derived from the CDC and London criteria for
CFS/ME (and other questionnaires about memory, diet and
medication). Having completed the questionnaires,
respondents clicked on a button labelled 'Finished' and the
information they had submitted was added to our data file".

No reference for or information about the "London" criteria is
provided by the authors and it must be noted that patients may
have been self-diagnosed and were self-referred, so it is unclear
by what methods the authors decided that participants fulfilled
the unpublished "London" criteria.

LIKE THE AUSTRALIAN GUIDELINES WHICH INCLUDE A LIST OF SYMPTOMS TAKEN FROM
THE CANADIAN CRITERIA, ONE CAN ASK PATIENTS TO FILL IN A QUESTIONNAIRE,
LISING THE CRITERIA AND ADDITIONAL QUESTIONS RELATING TO CRITERIA, E.G. HAS
A DOCTOR RULED OUT OTHER DISORDERS? YOU CAN ASK THE SAME QUESTIONS IN
PERSON, OR ASK THEM TO FILL IN A QUESTIONNAIRE IN THE WAITING ROOM (AS I
DID AT BARTS) OR ONLINE. THEN YOU CAN ASSES WHETHER YOUR PATIENT MEETS THE
CRITERIA. MRS. DORIS JONES USED QUESTIONNAIRES TO INVESTIGATE PATIENTS, AND
RECEIFVED HER MSC FOR THAT. IS THIS RESEARCH NOT OF INTEREST AND OF VALUE?
DR MCCUE WAS NOT TRYING TO FIND THE CAUSE OF ME OR TESTING A DRUG. SHE WAS
ASSESSING HOW THE HAD SCALE WORKED IN A DEFINED POPULATION. THIS PAPER IS
SYMPATHETIC TO PEOPLE WITH ME.

In the second of the three papers provided by Miss Goudsmit as
having used the "London" criteria (Perrin et al, 1998), under
"Procedure" the authors state: "All subjects in the patient group
were selected from patients in the clinical practice of one of the
authors. Each of them had to satisfy the definition for chronic
fatigue syndrome of the Centre (sic) for Disease Control and
Prevention (CDC). They also had to satisfy The London Criteria
which were formulated by scientific advisers for the ME
Association as well as Action for ME (1, 4) and validated by
several groups including the National Task Force on CFS (24,
25)".

The references refer to (1) " 'Epidemic Neuromyasthenia'
1955-1978". Ramsay AM: Postgraduate Medical Journal
1978:54:638: 718-721; (4) "Myalgic encephalomyelitis - a
persistent viral infection?" Dowsett et al: Postgraduate Medical
Journal 1990:66:526-530; (24) Report from The National Task
Force on CFS/PVFS/ME; Westcare, Bristol, September 1994
and (25) "Brainstem perfusion is impaired in chronic fatigue
syndrome". Costa, DC, Tannock C and Brostoff J: Quarterly
Journal of Medicine 1995:88:11:767-773

Whilst it is true that this paper does indeed state that
participants had to satisfy the "London" criteria, the facts are as
follows. The lead author has confirmed that he was misled at the
time of the study into believing and accepting that the "London"
criteria had indeed been published, operationalised and
validated. He had no reason to doubt the information he sought
and was given by the Medical Adviser to Action for ME, who in
turn had been assured by Miss Goudsmit that this was the true
situation.

THE PERSON HE WAS IN CONTACT WITH WAS DR. MACINTYRE, WHO HELPED FORMULATE
THE CRITERIA, WHO WORKED WITH DR. COSTA AT THE TIME OF HIS STUDY, AND AT
NO TIME NEEDED MY ASSURANCE ABOUT ANYTHING RELATING TO THE CRITERIA. SHE
NEVER ASKED ME ABOUT OPERATIONALISATION OR VALIDATION, AND SHE KNEW EXACTLY WHAT HAD BEEN PUBLISHED AND WHERE. I THEREFORE QUESTION THAT THE
INFORMATION HERE IS ACCURATE.

He was dismayed to learn that the "London" criteria
had never been published and he cannot be held in any way
responsible for having been misled.

HE WOULD NOT HAVE BEEN MISLED BY ANYONE AT ME ACTION. HE WOULD HAVE HAD
ACCURATE INFORMATION FROM ANY OF THE WORKING GROUP.

Referring to the third of the three papers she provides, it is
notable that Miss Goudsmit herself here states about the Costa
et al paper that

"Costa did not refer to the London criteria but to the 'ME Action'
Criteria. I can't be held responsible for the way he described
them in his article. I did not see the proofs so could not correct."

I WAS REPEATING INFORMATION NOTED EARLIER. THIS IS NOT A PROBLEM.

Ellen Goudsmit's disparate claims about authorship of the LC:

THE FOLLOWING INDICATES A LACK OF KNOWLEDGE OF SCIENTIFIC PROCEDURES AND
RULES RELATING TO AUTHORSHIP OF SCIENTIFIC ARTICLES ON THE PART OF MS.
WILLIAMS. ONE HAS TO FULFIL A NUMBER OF CRITERIA TO BE CITED AS AUTHOR.
THEY WERE DEVELOPED TO STOP TEAMS INCLUDING THE NAME OF THE HEAD OF
DEPARTMENT AND OTHERS, TO UP THEIR INDIVIDUAL TALLY OF PAPERS. YOU NEED TO
BE INVOLVED WITH CONCEPT AND DESIGN, DRAFTING AND REVISING, AND FINAL
APPROVAL. YOU HAVE TO MAKE A SUBSTANTIAL CONTRIBUTION. WELL, I TOUGHT OF
THE CONCEPT, I WAS INVOLVED WITH THE DRAFTING AND I APPROVED THE FINAL
VERSION AND TAKE RESPONSIBILITY FOR WHAT I APPROVED, I.E. VERSION 1. I DID
NOT ACTUALLY WRITE A WORD OF THE LC BUT I WAS SUFFICIENTLY INVOLVED TO
MERIT INCLUSION AS AUTHOR. IF MS WILLIAMS HAD EVER SUBMITTED A PAPER TO A
JOURNAL, SHE WOULD HAVE HAD TO SIGN A FORM AND SHE WOULD HAVE LEARNT ABOUT
THE RULES. THE MRC WILL KNOW THE RULES. THEY WON'T HAVE ANY PROBLEMS WITH
THIS. NO SCIENTIST WILL.

As mentioned above, the reason why the matter of the London
criteria is important is because the Medical Research Council is
about to undertake a major study on "CFS/ME" and intends to
use the London criteria for secondary analysis, even though
those criteria have never been defined, published,
peer-reviewed, operationalised or validated and there is
continuing debate involving Miss Goudsmit's role in the
authorship.

It is submitted that the following illustrations provide unequivocal
evidence concerning her misleading and inaccurate claims
about her own involvement with the London criteria:


=B7 "Old lie. [In that it has been stated by others that] I
had nothing to do with the London criteria. I not only
thought of the idea but was involved in writing and
disseminating them" (21st October 2001)

THIS IS ACCURATE.

=B7 "The London criteria are research criteria, for use in
research, e.g. Costa et al, Scholey et al, Paul et al. I
know this as I was one of the co-authors" (9th
January 2002)

ACCURATE

=B7 "Authors in alphabetical order were Dowsett,
Goudsmit, Macintrye, Shepherd. Date was 1993 (I
think)" (15th January 2002)

ACCURATE.

=B7 "Herewith... my own criteria for ME (son of
'London')" (9th February 2002)

THIS DOES NOT RELATE TO THE LC BUT MY OWN, LATER ATTEMPT.

=B7 "London criteria were not Ramsay's. He was
deceased by the time they were formulated. By moi
and others" (19th May 2002)

ACCURATE.


=B7 "There are a number of versions of the London
criteria... Ellen (One of the co-authors)" (11th June
2004)

ACCURATE.

=B7 "Even on David's site (there are) just my own
criteria...I accepted the text from others" (12th June
2004)

THIS IS ACCURATE. THE FIRST PART RELATES TO MY OWN CRTIERIA, THE SECOND TO
THE LC. THOSE ARE IMPORTANT.

=B7 "The London criteria are used to diagnose ME. As
I noted before, I did not write any of the text of the
LC" (12th June 2004)

THIS IS ACCURATE.

=B7 "Most of the text of the London criteria was Betty
Dowsett's. I did not write a single word" (4th
September 2004)


=B7 "They were initially used by Costa et al. I wasn't
involved with later versions" (10th September 2004)

THIS IS ACCURATE. I DID NOT SEE VERSION 2 AND DO NOT KNOW WHO WROTE THEM. I
DO NOT FEEL THEY ARE ACCURATE ENOUGH AND DO NOT RECOMMEND THEM. PROF. WHITE IS AWARE OF THIS. AND IF HE USES VERSION 2, I WILL NOT DEFEND HIM.

The above quotations from Miss Goudsmit should be compared
with what is on her website:

"THE DIAGNOSIS OF ME. The following are my
criteria, which I based on the work of pioneers such
as Gilliam, Ramsay, Parish, Acheson and Dowsett"
http://freespace.virgin.net/david.axford/me-defin.htm
- 3k - 1999-08-15

THESE ARE NOT RELATED TO THE LC AND THEREFORE NOT RELEVANT TO THE CURRENT
DISCUSSION. I EMPHASIZE THE USE OF THE WORD =91MY' IN THE SENTENCE. THERE IS
NOTHING WRONG WITH TRYING TO IMPROVE ON EARLIER CRITERIA. ASK THE CDC.

On 14th September 2004 Miss Goudsmit wrote the following to
a university lecturer about the alleged use of the London criteria:


=B7 "Given your status as a University lecturer, I felt it
appropriate to offer you good evidence to show that
Costa DID use the London criteria. I have his
description of the study (and) the contract. It explains
why he described them as something else".

THIS IS ACCURATE. THE EMAIL WAS TO MS. KENNEDY OFFERING THE EVIDENCE THAT
SHE ASKED FOR. AS SHE HAS NOTED ON HER WEBSITE, SHE REFUSED THE
INFORMATION. HER ADDRESS WAS IN THE PUBLIC DOMAIN SO I COULD HAVE SENT
THEM ANYWAY BUT GIVEN THE RESISTENCE, I DID NOT. I THANK MS WILLIAMS FOR
CONFIRMING THAT I MADE THIS OFFER AT AN EARLY STAGE OF THE DISCUSSION.
THIS COUNTERS THE SUGGESTION THAT I TRIED TO HIDE INFORMATION\DID NOT HAVE
IT. I'VE COVERED THE DESCRIPTION OF THE CRITERIA ABOVE.

(The Costa et al 1995 reference that Miss Goudsmit claims
used the London criteria makes no mention of them).

On 3rd February 2005 Miss Goudsmit posted the following:


=B7 "I have NEVER made false claims about the
London criteria. The BPS does not have information
such as whether an (sic) study presented at a
conference has been published. It means the person
who passed this on was lying. They lied about the
information obtained from Prof. Scholey, about what I
claimed. I've got a problem and it relates to the rules
of my professional organisation".


(Professor Scholey himself has confirmed that, contrary to Miss
Goudmit's claims, his material under discussion has not been
published and a search of Medline confirms this).

AS NOTED BY PROF. SCHOLEY, AND I HAVE AN EMAIL IF PEOPLE WISH TO READ IT,
HE HOPES TO SUBMIT THIS STUDY. I DID NOT CLAIM IT HAD BEEN PUBLISHED IN A
JOURNAL SO THERE IS NO PROBLEM. I GAVE THE REFERENCE AS A STUDY WHICH HAD
USED THE CRITERIA, THAT IS ALL. THE STUDY MAY NEVER BE ON MEDLINE AS
MEDLINE ONLY LISTS A LIMITED NUMBER OF PSYCHOLOGY JOURNALS AND THIS IS
LIKELY TO BE SUBMITTED TO A PSYCHOLOGY JOURNAL, GIVEN THE SUBJECT. IN THAT
CONTEXT, I DO NOT THINK MCCUE'S PAPER IS ON MEDLINE EITHER.

Another example of Miss Goudsmit's inconsistency in relation to
the London criteria is to be found in her letter to the Chief
Medical Officer:


=B7 "e.g. wrong reference to the London criteria, cited
as 1990 but I didn't think of them until 1993 let alone
compile them with colleagues (in 1990)" .

THIS IS NOT AN INCONSISTENCY AS THE PUBLICATION IN QUESTION HAD AN
INCORRECT REFERENCE TO SOMETHING PUBLISHED IN 1990 AND I CORRECTED IT WHEN
IT CAME UP. I CANNOT BE HELD RESPONSIBLE FOR THE ACCURACY OF INFORMATION I
WROTE TO ONE PARTY, WHICH WAS COPIED TO A SECOND AND THEN COPIED AGAIN TO A
THIRD.

It is submitted that it is only too obvious that Miss Goudsmit has
made numerous disparate claims about her involvement with the
formulation of the London criteria.

THIS IS NOT THE CASE, AS I HOPE THE ABOVE SHOWS.

In conclusion, it is submitted that currently, the "London" criteria
have no justifiable or validated legitimacy that would in any way
provide acceptable criteria for use by the MRC or by any other
research bodies for use in identifying patients with
ME/ICD-CFS. Not only are they now at least eleven years old,
they have been superseded by the more robust and superior
Canadian case definition (Myalgic Encephalomyelitis / Chronic
Fatigue Syndrome: Working Case Definition, Diagnostic and
Treatment Protocols. Bruce M Carruthers et al. JCFS 2003:11:
(1): 7-115).

THE CANADIAN CRITERIA ARE FOR CLINICAL USE AND NOT FOR RESEARCH USE. THEY
CANNOT SUPERCEDED RESEARCH CRITERIA AS THEY ARE NOT AIMED AT THE SAME
THING. THEY WOULD NEED OPERATIONALISATION AND CLARIFICATION. GIVEN PACE HAS
BEGUN, THERE IS NO TIME FOR THE REQUIRED TWEAKING AND PILOTING. IT'S
COMPLETELY UNREASONABLE TO ARGUE FOR A CHANGE.

IF MS. WILLIAMS' LOGIC IS EXTENDED TO MERGE, ALL THEIR RESEARCH IS EQUALLY

LACKING IN LEGITIMACY, IN REGARD TO ME. PAPERS MENTION THE USE OF BROAD
CRITERIA FOR CFS WHICH SELECT PEOPLE ALMOST INDISTINGUISHABLE FROM
NEURASTHENIA. IT IS BECAUSE WE KNOW THEY USE ADDITIONAL CRITERIA,
UNPUBLISHED, NOT PEER REVIEWED, THAT WE KNOW THEY HAVE STUDIED ME. WE TRUST
THEM AS GOOD SCIENTISTS. DR. DURVAL COSTA WAS A WORLD AUTHOURITY IN HIS
FIELD. HE USED THE LONDON CRITERIA. WE THEREFORE KNOW HE DID NOT STUDY
PEOPLE WITH CFS\NEURASTHENIA AND THAT THERE IS A PROBLEM WITH BLOOD FLOW TO
THE BRAIN STEM IN PEOPLE WITH ME. WHEN THIS WAS REPLCIATED IN A BROADLY-
DEFINED SAMPLE, THEY DID NOT FIND THE SAME IMPAIRMENT.

I THANK MS WILLIAMS FOR ONCE AGAIN PLACING DETAILS OF STUDIES WHICH USED
THE CRITERIA IN THE PUBLIC DOMAIN. THIS MEANS THAT IT CANNOT BE ARGUED THAT
PEOPLE DID NOT HAVE REFERENCES FOR THEM TO CHECK, E.G PERRIN ET AL, MCCUE
ET AL.

MISS WILLIAMS CONTINUES TO CRITICISE ME FOR THINGS I DIDN'T WRITE OR SAY OR
SUGGEST. SHE CLAIMS I WROTE X, THOUGH I DIDN'T, THEN ARGUES THAT WHAT SHE
SAYS I CLAIMED IS INCORRECT. IT MAY SUGGEST TO SOME THAT I AM INCONSISTENT
OR WORSE. I TRUST THAT THE ABOVE SHOWS QUITE CLEARLY THAT I HAVE BEEN
ACCURATE AND THAT ANY MISTAKES WERE NOT PART OF A STRATEGY TO DECEIVE OR
MISLEAD.

THE REPETITION OF ERRORS BY MISS WILLIAMS IS OF CONCERN. IN MY VIEW, THIS
DOES NOT CONSTITUTE PERSUASIVE EVIDENCE AGAINST PACE. THE DESIGN IS
SERIOUSLY FLAWED, YET THE ONE POSITIVE, FROM THE PERSPECTIVE OF A ME
PATIENT, IS CRITICISED. I URGE PATIENTS TO INTERPRET THE WRITINGS OF MISS
WILLIAMS IN RELATION TO MY WORK WITH GREAT CAUTION.

Ellen Goudsmit PhD. C.Psychol.

~~~~~~~~~~

PS. The BPS have evaluated previous claims made by Miss Williams relating
to my work on the LC. I will inform people of the outcome when it becomes
available.