Date:Fri, 11 May 2007 14:47:40 -0400
Reply-To:ME/CFS and Fibromyalgia Information Exchange Forum
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Sender:ME/CFS and Fibromyalgia Information Exchange Forum
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From:"Tony Britton <[log in to unmask]> via Co-Cure Moderator"
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Subject:ACT: Joint statement on the NHS Plus occupational health guidance
[UK]
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From Tony Britton <[log in to unmask]>:
A total of 18 ME charities and organisations signed a joint statement on
the recently published NHS Plus occupational health guidance for Chronic
Fatigue Syndrome, which appears below.
This statement will be circulated at the All Party Parliamentary Group on
ME on May 17 when the main speaker will be Dr Ira Madan, director of the
NHS Plus project which produced the guidance.
JOINT NHS PLUS STATEMENT
NHS Plus has issued three leaflets promoting its national management policy
on the occupational aspects of chronic fatigue syndrome (CFS). They are
intended for employers, employees and healthcare professionals. They were
issued in October 2006.
They are based on a paper called "The occupational aspects of the
management of chronic fatigue syndrome: a national guideline" This paper
has numerous evidential weaknesses; it displays a limited literature
search; contradicts itself and is based on such a narrow review of the
subject of ME/CFS as to make its findings unreliable.
We are extremely concerned at the tone of these leaflets, their sweeping
generalisations and their failure to present a balanced view of the
neurological illness known as ME/CFS.
The leaflets reflect unequivocal support for the psychosocial model of the
illness and strongly imply that the illness is "all in the mind". They fail:
1. to mention that ME is classified by the WHO (in ICD10:G93.3 with "CFS"
being an alternative term) as a neurological illness-a fact that is
accepted by the Department of Health.
2. to clarify the research evidence quoted and make no reference to the
widely recorded caveats about the research, on which the leaflets rely, or
its methodology, the validity of which is widely questioned.
3. to use the term ME/CFS and in fact go further and denigrate the term ME.
To say that "most healthcare professionals prefer the term CFS" is quite
astonishing. It is clearly at odds with the Guidelines prepared by the
Department of Work and Pensions and the National Institute for Health and
Clinical Excellence (NICE) who both use a composite of the terms ME and CFS
as do all patient based charities. It is also inconsistent with the
National Service Framework which accepts ME as a long term neurological
condition.
4. to reflect any doubt or caution about the efficacy of Cognitive
Behaviour Therapy or Graded Exercise. This is foolhardy and reckless
because evidence from large scale patient surveys (on over 3000 patients)
has shown that such therapies are not curative and that GET may be
harmful. Moreover, recommending that ill health retirement must be
deferred until those therapies have been explored is potentially dangerous
and flawed advice because:
(i) it is contrary to advice given in the Chief Medical Officer's Report
into ME.(2002) (see. Section 4.4.2 on page 46)
(ii) the recommendation is made at the level "(D) expert opinion", based on
the opinion of just two authors of the main Guideline, and ignores
completely the advice on occupational aspects of ME/CFS contained in
the consensus Canadian Clinical Guidance(2003) produced by a wide ranging
expert panel whose members have seen over 20,000 people with this illness.
5. to acknowledge fully not only the dominant symptom of post-exertional
fatigue/ malaise but also the impact that the many other disabling symptoms
people with ME/CFS suffer have on the ability to continue working. Instead
they evade those issues and advise those who feel tired to try to stay at
work on the basis that otherwise they will lose "work hardiness". This is
advice based on a theory of "deconditioning" in ME for which there is
contradictory scientific evidence. Encouraging people to continue working
when they feel physically ill is potentially dangerous advice, which could
lead to greater severity and chronicity.
6. to recognise that employees who are moderately affected with ME/CFS may
well be ill for years and that 25% of people with the illness are severely
affected (approximately 60,000 people) and that they may well have their
illness for life. The Chief Medical Officer's (CMO) Report in January 2002
states that anyone severely affected for more than 5 years has a poor
prognosis of recovery. These people in particular should not have to fight
for early ill-health retirement.
7. to mention that the CMO's Report in 2002 and the full version of the
NICE draft guideline both emphasize patient choice in undertaking treatment
for the illness. Yet these leaflets fail to mention this choice.
We urge NHS Plus to withdraw these guidance leaflets and the national
guideline upon which they are based immediately as we believe:
a. They are premature, coming before the publication of the NICE Guidelines
and those of the Department for Work and Pensions.
b. They are potentially dangerous both to employers and employees in the
advice they give
c. They fail to reflect that the term ME/CFS covers a wide range of
clinical presentations and pathological mechanisms.
d. They are written without sufficient acknowledgement of the unknowns of
the illness. A simple opening statement that "We do not know from
scientific research what causes or perpetuates this illness" would, at the
very least, have put the contentious theories that followed in some context.
e. They have been written by a guideline development group which for a
large part of its time had no patient representative and whose external
assessors were both psychiatrists with no service users or other CFS/ME
specialist physicians representing a view other than psychiatric. The
former is contrary to current Government directions as to patient
involvement and the latter contrary to common sense and balance in an
illness for which neither the cause nor the perpetuation has been
scientifically discovered.
f. They are insulting to many people with this illness who have fought
tooth and nail to keep their jobs and tried everything to get better.
We await your response.
List of charities and support organisations which signed the statement:
THE M.E. ASSOCIATION
ACTION FOR M.E.
THE 25% GROUP for those severely affected by ME
THE YOUNG M.E.SUFFERERS TRUST
CHROME (Case History Research on M.E )
ME RESEARCH UK
THE BLUE RIBBON FOR THE AWARENESS OF M.E.
THE NATIONAL M.E.CENTRE
WEST MIDLANDS GROUP CONSORTIUM ( NICE stakeholder-ME/CFS Guideline,
November 2006)
SOUTH WEST ALLIANCE FOR M.E. (NICE stakeholder-ME/CFS Guideline, November 2006)
SUFFOLK YOUTH AND SUPPORT GROUP
M.E.POSITIVE -EAST MIDLANDS
PETERBOROUGH ME& CFS Self-Help Group (NICE Stakeholders-ME/CFS Guideline,
November 2006, via Cambs. Neurological Alliance)
SUSSEX & KENT ME/CFS SOCIETY
READING AREA ME SUPPORT GROUP
HAMPSHIRE FRIENDS WITH ME
THE NORTHAMPTON ME SUPPORT GROUP
GUILDFORD ME SUPPORT GROUP
Dated this 10th April 2007
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