Evidence that the official UK position is that ME/CFS (or CFS/ME) is a neurological disorder
by Margaret Williams
November 2010
Whilst awaiting the results of the MRC PACE Trial on the
efficacy or otherwise of directive behavioural modification on
ME/CFS, it may be helpful to consider an updated review of the
UK Government’s official position on the classification and
status of the disorder.
It hardly needs to be reiterated that terminology is confusing
but vitally important: ME is a classified neurological disorder
(WHO ICD-10 G93.3, with CFS being coded only to G93.3, hence
ME/CFS) but a group of doctors who work for the insurance
industry (known as the Wessely School) have inverted ME/CFS to
“CFS/ME” because they do not accept that it is a chronic
inflammatory neuroimmune disorder and insist that it is a
functional (psychiatric) disorder that is amenable to cognitive
restructuring, which they intend to demonstrate in the PACE
Trial.
It is a matter of record that these doctors also intend to drop
the “ME” component and refer to it as a syndrome of chronic
fatigue, which is a classified psychiatric disorder (ICD-10
F48.0). By using their own criteria and thus having widened the
case definition to include anyone who is chronically fatigued
(which the researchers are inexplicably allowed to refer to as
CFS/ME), there is a real danger that, as noted in the Chief
Medical Officer’s Working Group Report of 2002:
Given the evidence cited below, there cannot be any debate by
anyone about the nature and status of ME/CFS: Hansard is replete
with assurances from Ministers of State that both Conservative
and Labour Governments accept ME/CFS as a neurological disorder;
it is particularly notable that the UK Chief Medical Officer is
on record stating that the Department of Health recognises
ME/CFS as a genuine and disabling neurological condition and
that health professionals (and thus the health professionals who
work for the insurance industry) must recognise it as such.
In November 1987 ME was recognised as an organic disease by the
Department of Health (Hansard: 27th November
1987:353).
The ME Sufferers’ Bill was presented to the House of Commons by
Jimmy Hood MP on 23rd February 1988 and passed its
first reading unopposed. The second reading was on 15th
April 1988 and the Bill was ordered to be brought in and to be
printed (Bill 99). The Bill required an annual report to
Parliament:
“It shall be the duty of the Secretary of
State (for Health) in every year to lay before each House of
Parliament a report on the progress that has been made in
investigating the causes, effects, incidence and treatment of
the illness known as ME”.
In one of her many published diatribes on ME sufferers,
journalist Caroline Richmond (an ardent Wessely School
supporter) stated:
“Myalgic encephalomyelitis is the first
and indeed the only disease legally recognised in Britain,thanks to a private member’s Bill passed in 1988”
(Myalgic Encephalomyelitis, Princess Aurora, and the wandering
womb. BMJ 1989:298:1295-1296).
By letter dated 5th June 1991 Mrs CV Dowse for the UK
Attendance Allowance Board Secretariat at The Adelphi, 1-11 John
Adam Street, London WC2N 6HT (which worked in close liaison with
the Department of Health) confirmed
“Recent research
indicates that ME must be a physical reaction to some type of
virus infection”.
By letter dated 13th March 1992 to James Pawsey MP
(ref: POH (3) 2484/200), in his capacity as Parliamentary Under
Secretary of State for Health, Stephen Dorrell MP set out the
official view of the Department of Health on ME: referring to
the Disability Handbook produced by the Disability Living
Allowance Board, Mr Dorrell stated:
“The Handbook
persisting viral infections in muscles, with some evidence of
muscle damage. Hence, a physical cause for ME is recognised”
(i.e. it is not somatisation or a functional disorder).
By letter dated 15th March 1992, this exact view was
repeated by the late Nicholas Ridley MP, who wrote to a
constituent that -
“The Disability Living Allowance Board
recognises that in some persons with ME there is evidence of
persisting viral infections in muscles, with some evidence of
muscle damage. Hence, a physical cause for ME is recognised”.
On 16th August 1992, Stephen Dorrell MP, Minister of
Health, went on public record confirming that when he addressed a
meeting of the Leicestershire ME Group -
“ME is
established as a medical condition”
(i.e. the Minister
confirmed that it is not somatisation or a functional disorder).
An early record of MPs’ deep concerns about the malpractice of
the insurance industry relating to people with ME/CFS is to be
found in the House of Commons debate chaired by Sir Alan
Haselhurst on 21st December 1999 (Hansard 147WH –
166WH).
In summer 2000, the Disability Rights
Bulletin reported the position about eligibility for Disabled
Living Allowance (DLA) for those with ME/CFS:
“In assessing DLA higher rate mobility
component for people with ME, recent guidance advises decision
makers to assume in the vast majority of cases that the claimant has
a physical disablement.
The Commissioner, in CDLA/2822/99, held that an award of the
higher rate mobility component can be made on the basis of the
physical element of the condition. Guidance (DMG Memo Vol
10-3/00) advises decision makers that, in the vast majority of
claims, if a doctor says the claimant has ME or CFS then that
can be taken as an opinion that they have a physical
disablement”.
On 27th November 2001 the Countess of Mar tabled the
following question:
“To ask Her
Majesty’s Government whether the psychiatrists on the Chief
Medical Officer’s Working Group on Chronic Fatigue
Syndrome/myalgic encephalomyelitis have withdrawn; if so, for
what reason”
(HL1659).
On 17th December 2001 the Parliamentary
Under Secretary of State, Department of Health (Lord Hunt of
Kings Heath) replied:
“We
understand that the psychiatrists on the Group felt unable to
support it, as it does not sufficiently meet their concerns”.
The CMO’s Working Group Report did not, despite the Wessely
School’s best endeavours (of which there is abundant written
evidence), state that what it referred to as CFS/ME is a
somatisation disorder, so five members of the Wessely School
walked out and refused to sign the Report.
The point surely was
the CMO’s Working Group Report was supposed to be about the
needs of sick people, not about the concerns of doctors who work
for the insurance industry.
On 11th January 2002 the UK Chief Medical Officer
(Professor Sir Liam Donaldson) went on record about the nature
of CFS/ME; BBC News / Health reported:
On 12th June 2002 (Hansard: Column 973), in welcoming
the then new Under Secretary of State for Health (Mr David Lammy
MP), John Bercow MP (now The Speaker) pointed out to the
Secretary of State:
“In the
House since 1997, interest in ME or chronic fatigue syndrome has
been manifested in no fewer than 116 written and oral
parliamentary questions; a number of early day motions…and
several Adjournment debates”.
Mr Bercow continued:
“There has
been a long-standing argument about the cause of ME or chronic
fatigue syndrome, but about its appalling symptoms and
consequences there can be no doubt….It is severe and potentially
disabling….The House and the wider public must understand that
ME sufferers experience sheer exhaustion and excruciating pain.
Those are often the daily endurances and harrowing ordeals of
sufferers….There is an overriding need…for more research, not
least into the physical causes of the affliction….We now have
the endorsement of the chief medical officer, Sir Liam
Donaldson, for the proposition that this is a recognised
disease”.
Mr Bercow was asked by Mr Russell Brown MP:
“Does
the Hon Gentleman believe that great problemsremain
locally because some GPs continue to fail to recognise ME as an
illness?”,
to which Mr Bercow replied:
“I do….the
Government should not only provide advice and communicate the
new culture to GPs but put their foot up the backside of those
who have consistently misunderstood and displayed insensitivity
towards people suffering badly….The issue is too big for
political games”.
The new Parliamentary Under Secretary of State replied:
“I want to
make it absolutely clear that the Government endorse the view of
the working group that this is a chronic illness. Health and
social care professions should recognise it as such….Research
has demonstrated immune, musculoskeletal and neurological
abnormalities”
(i.e. the Minister accepted that it cannot
be somatisation or a functional disorder).
On 7th January 2004 the Countess of Mar asked the
Minister (Baroness Hollis of Heigham):
“Is the
Minister in a position to give an undertaking that people
suffering from myalgic encephalomyelitis – ME will not be
forced to undergo cognitive behaviour therapy and graded
exercise programmes as a basis for obtaining benefit….Adequate
information is available to show that this is an organic and not
a psychological illness”,
to which the Minister replied: “My
Lords… I would not wish to challenge her statement on that….My
understanding is that someone who has ME – whatever the cause,
the symptoms are clinically recognised – would normally be
entitled to incapacity benefit”.
By letter dated 11th February 2004, the then Health
Minister, Lord Warner, clarified the position of the Department
of Health:
The
point about this clearly contrived clarification -- which was
widely interpreted as being designed to absolve the Wessely
School’s erroneous re-categorisation of ME/CFS as a mental
disorder (see below) -- is that, given that the WHO classifies
ME/CFS as a neurological disorder, there were no options, so
there was nothing to “agree” about.
Hansard for 23rd March 2004 records at column WA96
the following:
“In the light of the letter of 11 February
2004 from the Lord Warner to the Countess of Mar in which he
stated ‘The second edition of the WHO Guide to Mental Health and
Neurology in Primary Care (note that this was
incorrect: it should have been “The WHO Collaborating Centre
Guide to Mental Health”) will have only one code for
CFS/ME – this is G93.3, why, under the heading ‘Terminology and
Concepts’, CFS/ME is not mentioned under G93.3”.
The
background to this is that in 2000, the UK WHO Collaborating
Centre for Mental Health at the Institute of Psychiatry
misclassified the disorder as a mental (behavioural) disorder in
its “Guide to Mental Health in Primary Care” by using Wessely’s
own material on CFS/ME. The Guide was funded by the Department
of Health. Despite strenuous complaints and despite ICD-10
classifications being mandatory in the UK, sales of the Guide
were allowed to continue unabated until almost 30,000 copies had
been sold. Eventually, an erratum was issued but this did not
prevent the disorder being wrongly classified as a mental
disorder in the NHS Mental Health Data Manual, nor did it
prevent Ministers of State and Members of Parliament from
receiving the impression that it was the WHO itself (not the WHO
Collaborating Centre in the UK) that had re-classified the
disorder as a mental disorder. In September 2001 the WHO issued
a statement repudiating the unofficial re-classification by the
UK Collaborating Centre. The matter was raised in Parliament on
22 January 2004, where Earl Howe noted the suggestion that
Professor Wessely had “effectively hijacked the WHO logo
to give credence to his own view of ME as a mental illness”(Hansard [Lords] 23 January 2004:Vol 656:No 7:1192). The ME
Association Newsletter of March 2004 stated: “The issue
mattered because the psychiatrists had stifled access to
research funds for any UK researchers wanting to study organic
causes”.In responding to the Countess of Mar,
Lord Warner was compelled to concede that the WHO Collaborating
Centre at the Institute of Psychiatry had got it wrong:
“The
Collaborating Centre amended this second edition…This
explanatory text does not detract from the fact that there is
now only one ICD code for CFS/ME, which is G93.3”.
By letter dated 8th November 2007, the Parliamentary
Under Secretary of State, Ann Keen MP, confirmed that CFS/ME is
indeed included in the National Service Framework for chronic
neurological conditions:
“We have long recognised the WHO
classification of CFS/ME….The National Service Framework (NSF)
for Long-term Conditions, published in March 2005, sets out a
clear vision of how health and social care organisations can
improve the quality, consistency and responsiveness of their
services and help improve the lives of people with long-term
conditions, including CFS/ME”.
On 2nd June 2008 the Countess of Mar asked Her
Majesty’s Government:
“Whether the current NHS review will
include consideration of chronic fatigue syndrome/myalgic
encephalomyelitis (CFS/ME) as a long-term neurological condition”.
The Parliamentary Under Secretary of State, Department of Health
(Lord Dazi of Denham) replied:
“The review…will increase
awareness and ensure better care for people with CFS/ME and will
help to support local delivery of the NSF
(National Service Framework) for long-term neurological
conditions…. The Government accept the World Health
Organisation’s classification of CFS/ME as a neurological
condition of unknown cause….I have acknowledged that CFS/ME is a
neurological condition”.
Baroness Howe of Idlicote then
asked the Minister:
“Can the Minister explain to the House
why the Royal College of General Practitioners continues to
insist on categorising CFS as a mental illness?”. Lord
Dazi replied: “The Government has made it clear that they
consider that CFS/ME should be classified as a neurological
condition. It is for professional bodies to look at the
evidence base and I will encourage the Royal College of General
Practitioners to look at the WHO classification which, as I said
earlier, is that it is a neurological rather than a mental
condition”.
By letter dated 19th June 2008, Stephen Atkinson on
behalf of the Department of Health confirmed:
“I would
like to assure you that the Department recognises CFS/ME as a
neurological disease”.
By letter dated 25th November 2008, the Northern
Ireland Minister for Health, Social Services and Public Safety,
Michael McGimpsey MLA, confirmed:
“I know that in the past
there has been some debate about the nature of ME but there have
been a number of studies and reports in recent years clarifying
that it is a very real and debilitating neurological condition”.
On 23rd February 2010, in an Adjournment debate on
ME, Gillian Merron, Minister of State (Public Health),
Department of Health, stated:
“I want first to put on the
record that we accept the World Health Organisation’s
classification of ME as a neurological condition of unknown
cause”.
By letter dated 28th May 2010, Kay Ellis confirmed on
behalf of the UK Chief Medical Officer:
“The Department’s
view is that it is important to recognise that CFS/ME is a
genuine and disabling neurological illness and health
professionals must recognise it as such”.
On 11th October 2010, in a debate on ME in the House
of Lords, the Countess of Mar said:
“ME has been
classified as a neurological condition at least since 1968
(this should have been 1969)…however, for all these years,
sufferers from this awful debilitating illness have been
ignored, derided and mistreated….
Many thousands of peer-reviewed
scientific papers from researchers around the world demonstrate
that ME is a physical disease which has endocrine, immune and
cardiovascular effects, as well as neurological symptoms….
It is
distinct from chronic fatigue which is a symptom of many
diseases….
Despite this, there is a school of thought, dominant
throughout the last three decades, that this is a psychosocial
behavioural problem, easily dealt with by cognitive behavioural
therapy and graded exercise….
There is a school of psychiatry
determined to claim the condition for its own, both in the UK
and internationally. After many years of working in this
sphere, I have observed the means by which any valid arguments
for a biological cause are mocked and eventually overwhelmed….
By
writing numerous papers which, of necessity because there is
no-one else to do it, are peer-reviewed by their colleagues,
they appear to have proved that there is no need for further
research and that the doctors responsible for diagnosing and
treating ME do not need to conduct any more than the basic range
of tests on their patients….
It seems that, no matter how often
Ministers and senior officials confirm their acceptance of the
seriousness of this condition, nothing will change until the
culture both within and outside the NHS changes….
May I ask the
noble Earl whether the coalition continues to accept that
myalgic encephalomyelitis is a neurological illness as
categorised by ICD-10 G93.3?”.
The noble Earl, the
Parliamentary Under Secretary of State for Health, (Earl Howe)
replied concisely:
“The noble Countess, Lady Mar, asked
whether the coalition accepts that CFS/ME is a neurological
condition. The Government accepts that it is a neurological
condition”.
Despite this abundance of evidence that CFS/ME (or more
correctly, ME/CFS) is a neurological disorder, it seems that
those doctors who work for the insurance industry remain
ruthless and unremitting in their determination to categorise it
as a functional (somatic) disorder (functional disorders being
expressly excluded from insurance cover, so people with ME/CFS
who have a legitimate claim are likely to find that their
insurers refuse to accept their claim on the grounds that they
are suffering from an excluded disorder, a situation of which
the claimant would be unaware until making a claim, since ME/CFS
is not listed as a policy exclusion) and that they continue to
dismiss and/or ignore the ever-mounting biomedical evidence that
makes their sustained position risible.
What is deplorable is that, despite Ministers’ repeated
assurances that they accept ME/CFS as a serious neurological
disorder, these doctors are never held to account by Ministers
because no-one will accept responsibility for doing so, to the
grave detriment of people trying to cope with what amounts to
medical abuse in addition to the ravages of the disease itself.
The adage “Profits before Patients” is sadly still alive and
well, whereas patients are not, but who cares?
