A total of 25 ME charities and organisations have now signed up to a joint statement on the recently published NHS Plus occupational health guidance for Chronic Fatigue Syndrome, which appears below.
The statement has been sent to Dr Ira Madan, clinical standards director of NHS Plus, and was discussed at the All Party Parliamentary Group on ME which Dr Madan attended on May 17. She conceded some points and offered to meet with the charities for further discussion.
If your group would group would also like to sign up to the statement, and has not yet done so, please contact Tony Britton as soon as possible.
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
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
OXFORDSHIRE ME GROUP FOR ACTION (OMEGA)
M.E. SUPPORT – NORFOLK
MANCHESTER M.E. SOCIETY
NORTH LONDON ME NETWORK
SUNDERLAND AND SOUTH TYNESIDE ME SUPPORT GROUP
LINCOLNSHIRE ME SELF-HELP GROUP