Chief Medical Officer,
Professor Liam Donaldson,
The Department of Health
79
SW1A 2NS
Dear Professor Donaldson,
Towards the end of August 2001 I inadvertently stumbled across a website
hosting a “GUIDE to Mental Health in Primary Care“
developed by the WHO Collaborating Centre for Research and Training for Mental
Health,
Realising neither M.E nor CFS are classified as mental health disorders, with
ME being classified in the ICD-10
under G93.3 (neurological)
and Chronic Fatigue Syndrome being index
linked to the same, myself and others contacted the Collaborating Centre and
the WHO Headquarters in Geneva to voice our concerns. Due to these complaints
some modifications have now been carried out. The main modification is that
the aforementioned statement now completely omits CFS and ME and instead reads;
”CHRONIC FATIGUE, FATIGUE SYNDROME
& NEURASTHENIA - F48.0"
However the modifications to date are insufficient and unfortunately seem
to confound the issue. References to Chronic Fatigue Syndrome
and M.E. have only partially been removed and CFS remains covertly within
the following areas;
1) The index for self-help leaflets and the index to mental disorders on
the website’s Home page.
2) The Introduction page under
the heading,
‘ A linked set of patient information and self-help leaflets.’
3) On page 21 of the WHO GUIDE
book it still states;
“ Chronic Fatigue and Chronic
Fatigue Syndrome - F48.0
( may be referred to as M.E ) ”
4) Also under the Mental Disorders
section with the new heading of,
CHRONIC FATIGUE, FATIGUE SYNDROME & NEURASTHENIA
- F48.0
you will find under ‘ resources for patients and families ‘ the following
book suggested; Chronic Fatigue Syndrome: The Facts by M Sharp
and F Campling, 2000, Oxford University Press (self-help advice
for more severe symptoms).
One is also directed tothe following information;
The
On following the internet link
given to The Institute of Psychiatry’s website you arrive at; A Practical Self Help Guide, The Chronic Fatigue Syndrome Research and Treatment
Unit New Medical School, Kings College Hospital, London SE5 7PJ
As CFS / ME are not classified as mental health
disorders by the World Health Organisation one must seriously question why
these disorders are included in a WHO Guide to Mental Health in Primary Care
and included on a psychiatric website.
Once again this Guide which is intended only to include disorders classified under F48.0 ( Mental & Behavioural, Neurotic disorders) makes mention of CFS and ME under, CHRONIC FATIGUE, FATIGUE SYNDROME & NEURASTHENIA - F48.0 ‘ resources for patients and families ’ by directing readers to;
A review of the evidence for the full range of treatments for CFS/ME, see: Bagnall AM, Whiting T, Wright J, Sowden AJ, 2001 The effectiveness of interventions used in the treatment/management of CFS and/or myalgic encephalomyelitis in adults and children NHS Centre for Reviews and Dissemination, University of York, York.
At this juncture it may be appropriate to look at the airmail letter I received from the WHO Headquarters in Geneva which states; (full copy attached)
“ The information
posted on the website in question has recently been modified on the basis
of advice provided by the Classification, Assessment, Surveys and Terminology
Team here at WHO Headquarters.
You will see that there is now a clear distinction between chronic fatigue,
fatigue syndrome and neurasthenia on the one hand and chronic fatigue
syndrome and ME on the other. ”
I regret the clear distinction
mentioned above has not yet been attained. I wish also to draw your attention
to the unacceptable duplicity of the following paragraph which can be found
under Mental Disorders preceding the heading ‘Essential Information’ for patient
and family as follows;
“ Postviral fatigue syndrome and benign myalgic
encephalomyelitis (classified under G93.3
‘neurological disorders’) are diagnosed where there is excessive fatigue following
a viral disease and the symptoms do not fulfil the criteria for F48.0. ‘
Fatigue syndromes’ both chronic and not, both with and without an established
physical precursor, may be classified under ’neurasthenia’ F48.0. In practice,
there is extensive overlap in symptoms (up to 96%). The choice of coding reflects
different recording practices and uncertainty about the aetiology of
these syndromes. Although classification is controversial, treatment
is similar whatever choice is made about coding ”
The authors, very astutely, may
not have used the actual name ‘ Chronic Fatigue Syndrome’ within the above
paragraph but I would suggest it is blatantly obvious what message the following
sequence of words is intended to convey;
“ Fatigue syndromes, both chronic
and not ” It is my opinion and that of many others that herein lies proof
of the duplicity involved. The authors themselves have above made a very
good case as to why these disorders should not be in this Guide, and that
is, a) uncertainty about the aetiology b) classification.
To further support my comments please find below an extract of Jo
Paton’s reply to complaints regarding the inclusion
of CFS and ME or the classification given to it within this Guide. ( Full
copy attached. )
“What we have decided to do and why"
We are using the code: F48.0 because the 1996 ‘WHO Diagnostic and Management Guidelines for Mental Disorders in Primary Care: ICD-10 Chapter V Primary Care Version’ of which our guide is an adaptation included a guideline on neurasthenia (fatigue syndrome) which is a broad inclusive category. However, UK GPs do not use the terms ‘fatigue syndrome’ and ‘neurasthenia’. Instead they use the terms ‘Chronic Fatigue’ and ‘Chronic Fatigue Syndrome’. Therefore we have used the term ‘Chronic Fatigue’ and made clear that our guideline refers both to fatigue that is mild / moderate and short-lived and to fatigue that is severe and chronic. ”
I am most concerned that a reasonable
person reading this Guide to Mental Health in Primary Care would infer that
the condition CFS / ME is synonymous with the condition Neurasthenia, chronic
fatigue & Fatigue Syndrome classified by the WHO under F.48.0 (Mental,
Behavioural & Neurotic disorders)
It is widely recognised that General Practitioners, the general public, the
media, the DSS, and sufferers in the UK use the term Chronic Fatigue Syndrome
as another name for M.E. (G93.3)
and not as a new name for ‘neurasthenia’ (Fatigue Syndrome) It is also my experience
that UK General Practitioner’s use the term chronic fatigue when referring
to a troublesome symptom rather than as the name of a specific illness.
This paradoxical situation with the WHO Collaboration Centre’s Guide to Mental
Health in Primary Care can only serve to mislead general practitioners, primary
care workers, the public, the media. It could easily
lead to irrevocable harm to sufferers whether it be with regards treatment,
the obstruction of research into organic related research, difficulties with
entitlement to DSS benefits especially Disability Living Allowance, complications
with Insurance Policies, and could possibly affect sufferers rights or the
right of parents to refuse certain medical treatments for their children.
I personally am appalled that the
authors of this Guide should be seen to be allowed to play such games with
words at the expense of clarity and accuracy not to mention at the expense
of vulnerable M.E and CFS sufferers. I am confident you will agree that it
is wholly unacceptable for misleading information to be published and distributed
by a U.K WHO Collaborating Centre to members of the medical profession.
We have been led to believe that the ME Association and Action for M.E. were
unaware that CFS and ME had been included in this
Guide to Mental Health in Primary Care or that Primary Care workers throughout
the U.K were being informed that ME and CFS were Mental & Behavioural,
Neurotic disorders (classified by the WHO as F48.0.) This compels me to
ask, without accusation, if this situation was made known to either yourself
or the ‘Chief Medical Officer’s Working Group on Chronic Fatigue Syndrome/Myalgic
Encephalomyelitis.’ which I believe first met in March 1999. If the answer
to this is negative I would ask that you initiate rigorous enquiries to establish why. To assist I have attached a copy of the extensive
list of individuals and organisations given mention in the Acknowledgements
of this GUIDE and a copy of the stated Mission of the WHO
Collaborating Centre of the Institute of Psychiatry.
May I mention that I have contacted the WHO Headquarters in Geneva twice and have attached a copy of their reply to my first communication. I have not as yet received a reply to my second e-mail voicing my dissatisfaction at the insufficient, incomplete nature of the amendments. Following the completion of these modifications I contacted Derek Flannery - administrator and Professor Rachel Jenkins - Director of the Collaboration Centre about my concerns but unfortunately have not as yet had the courtesy of a reply.
In summary, I respectfully put
it to you that whilst ME and CFS are not officially classified as, or by
any manner of means proven to be mental health disorders their inclusion within
a Mental Health Guide stated to be specifically for disorders classified by
the WHO as F48.0 ( Mental, Behavioural & Neurotic disorders ) is wholly
unjustified and unacceptable.
I would therefore ask that you use whatever power is within your means and
take whatever action is necessary to ensure all references to CFS and / or
ME are removed from this Guide to Mental Health in Primary Care.
Due to the gravity of the misinformation published and distributed by this
WHO Collaborating Centre in their WHO Guide to Mental Health in Primary Care
I would ask if you would ensure, if even only as a damage limitation exercise,
that the medical profession, the public, the sufferers, the media, insurance
companies, the DSS and those internationally concerned are clearly informed
of the correct World Health Organisation ICD-10
classification for CFS and ME within your forthcoming report the ‘Chief Medical
Officer’s Working Group on Chronic Fatigue Syndrome / Myalgic Encephalomyelitis.’
Thank you for your time and consideration on this matter and hope you will actively pursue and attain the removal of all reference to Chronic Fatigue Syndrome and ME from this ‘ WHO Guide to Mental Health in Primary Care.’
I look forward to your response.
Yours sincerely,
Connie Nelson
26th October 2001
Note: The WHO Guide to Mental Health in Primary Care is hosted on two websites. The links to these websites are listed below. Minor alterations to these sites has happened as a result complaints made but references to Chronic Fatigue Syndrome still exist throughout these websites.
http://www.whoguidemhpcuk.org/
http://cebmh.warne.ox.ac.uk/cebmh/whoguidemhpcuk/
Many thanks to Connie for your efforts.
