This document was produced by The Grace Charity for ME and is reproduced here with their kind permission. It can be found online as Word and PDF documents.
SAYING NO CAN BE POSITIVE Spring 2006 (updated 2013)
The following has been designed to support M.E. sufferers
who choose to not attend the current NHS Chronic Fatigue Syndrome/Myalgic
Encephalomyelitis clinics, set up across the country. These clinics have been
based upon the Chief Medical Officer’s report from 2002 and consist mainly of
psychological therapies such as Cognitive Behavioural Therapy and Graded
Exercise Therapy. This document may also support M.E. patients who refuse to
receive the treatments of CBT and GET recently recommended by NICE for CFS/M.E.
and also by the PACE trials (Prof. Peter White et al.) Bedbound/housebound
sufferers who are advised to have these therapies on domiciliary visits may
also find this document helpful. It may also help those pressurised to
undertake CBT and Graded Exercise Therapy by Private Health Insurers.
Those who wish to refuse psychological therapies for M.E.
can be supported by the following facts:
1) The law protects patients from unwanted treatments if the
patient is deemed to be mentally competent. Medical practitioners cannot give a
treatment to a patient without the patient’s consent. 1 Scientifically, M.E. is NOT in Mental Health,
see below.
2) An M.E. patient doesn’t have to comply with the recent
NICE guidelines on CFS/M.E., supported by the above law, because M.E. is not
scientifically in mental health.
3) The NICE guidelines, which support CBT and Graded
Exercise Therapy for M.E., are not mandatory. In practise, GPs and all doctors
do follow the NICE Guidelines: this is because all NHS organisations have a
legal requirement to implement NICE guidance.
However, the treatment aspect is not enforceable.
‘ I can clarify that NHS organisations are indeed expected
(and in some cases, such as a type of guidance called Technology Appraisal
guidance, legally obliged) to implement NICE’s recommendations. This is not the
same as saying that the NHS has the power to force a patient to undergo a
treatment which they do not want.’ 2
Also,
‘ NICE clinical guidelines such as CG53 are not legally
enforceable.’ 3
4) M.E. patients have a right, under the NICE guidelines, to
refuse the recommended treatments from NICE.
The following could be used to help M.E. sufferers who wish
to refuse NICE’s recommendations of treatment:
‘Healthcare professionals should be aware that – like all
people receiving care in the NHS – people with CFS/ME have the right to refuse
or withdraw from any component of their care plan without this affecting other
aspects of their care, or future choices about care.’ 4
A patient’s care plan can include state benefits and social
services care, which are now also linked with the NICE guidelines.
The NICE guidelines do not override the responsibility of
healthcare professionals to make decisions appropriate to the circumstances of
each patient. Healthcare professionals should record their reasons for not
following clinical guideline recommendations.
In other words, every patient case is individual and a
doctor does have the right to express clinical freedom, along with consulting
the patient, as to what is best. This may mean refusing Graded Exercise Therapy
and CBT.
5) An M.E. patient who is in a comatose/semi comatose state
cannot by law be forced into psychological treatment just because they have M.E. 5
6) Private Health Insurers cannot force an M.E. client to
undergo unwanted treatment before making a payment, unless those treatments are
specified in the contract. Unless the contract of a company states clearly that
M.E. clients must undergo CBT and/or Graded Exercise Therapy before a payment
is made, the company could well be in breach of contract. Also, every
individual has freedom to express views as stated by The Human Rights Act 1998.
If an insurance company ignores a client’s reasons for refusing CBT and/or
Graded Exercise Therapy, a client could claim their ‘freedom of expression’ has
been violated. 6 The following organisation may offer help,
including a free telephone appointment for legal advice:
Disability Law
Service
Ground Floor
39-45 Cavell Street
London
E1 2BP
Tel: 020 7791 9800
7) An M.E. patient cannot have their state benefits
withdrawn for refusing CBT and Graded Exercise Therapy.
Unfortunately, the NICE guidelines are now linked with the
awarding of state benefits and Social Services care.
U.K. law says that if a patient refuses suitable treatment
without good cause, benefits can be withdrawn. 7
However, CBT and
Graded Exercise Therapy could be argued as unsuitable treatments for M.E.
sufferers (see facts below). Scientific opinion which is against CBT and GET
for M.E. can be used to obtain state benefits for sufferers.
In addition, NICE has written the following in its CFS/ME
Guidelines:
‘Healthcare professionals should be aware that – like all
people receiving care in the NHS – people with CFS/ME have the right to refuse
or withdraw from any component of their care plan without this affecting other
aspects of their care, or future choices about care.’ (This is also quoted in
section number 4 of this paper. See Footnote 4 for reference.)
Although NICE Guidelines are now linked in with the awarding
of Social Services care and State Benefits, the above quote can be used in
favour of an M.E. sufferer’s refusal to undergo CBT and Graded Exercise
Therapy.
If sufferers find themselves in a legal battle with their
benefits, those who qualify for legal aid may find the following organisation
helpful:
the Community Legal Advice Line Tel: 0845 3454345
8) M.E. is a neurological disorder. It has been classified
as such by the World Health Organisation in the International Classification of
Diseases since 1969. 8 Therefore
psychological therapies could well be inappropriate.
9) M.E. has a strong medical history of being an organic
disease. Dr.Gordon Parish is the curator of the Ramsey Archive, which is
possibly the world’s largest collection of medical papers on M.E. 9 It includes detailed world-wide epidemics of
M.E. since 1934 and the viruses which triggered the disease.
10) There are over 2,000 papers showing that M.E. is an
organic disorder, according to Prof. Anthony Komaroff (Professor of Medicine at
Harvard). 10
11) In November 2010, M.E. sufferers were banned from giving
blood. NHS Blood and Transplant has said that the ban is a precaution to
protect the donor’s safety by ensuring the condition of M.E. is not made worse
by donating blood. They say that the move brings M.E. in line with other relapsing
conditions such as Multiple Sclerosis and Parkinson’s Disease. 11 However, many people in the M.E. community
feel that the ban is over the possibility of contamination from the virus XMRV,
which has been shown in studies to be high in M.E. patients. (See research by
The Whittemore Peterson Institute team, published in the journal Science 2009.)
12) Many tests exist
in aiding a diagnosis for M.E. Therefore, using psychological therapies for
‘unexplained fatigue’ is inappropriate. Although diagnostic tests for M.E. are
still being worked upon with promise, nevertheless many tests and procedures
can be administered in aiding a diagnosis of M.E. These include the use of
SPECT, MRI and PET scans, test for NK cell activity and endocrine
abnormalities, Tilt Table Test, viral tests and many more. 12 Although these tests are rarely offered by the
NHS for M.E., they have nevertheless shown evidence of physical abnormalities.
13) “Patients who improve after physical exercise programmes
do not have M.E./CFS.,” says Dr. Byron Hyde, M.D. of the Nightingale Research
Foundation for M.E. in Canada, who has studied M.E. since 1984. 13 Dr. Hyde stresses that M.E. is primarily a
disease of the Central Nervous System. 14
14) Patients who respond well to CBT and Graded Exercise
Therapy might not have M.E. due to the diverse criteria used. Some criteria
focus on unexplained chronic fatigue only, omitting symptoms showing central
nervous system involvement. There are at least ten definitions of Chronic
Fatigue Syndrome, all of them different.
15 In the U.K., a frequently used
case definition is the Oxford Criteria which includes patients with no physical
signs and selects subgroups of patients with high levels of psychiatric diagnoses
. 16
The PACE and FINE trials (funded by the Medical Research Council) use
the Oxford Criteria. 17
15) The assumption that an M.E. patient can always do more
is an erroneous one. There are overwhelming international research findings on
M.E., which support multi-system involvement particularly of the immune,
endocrine, cardiovascular and neurological systems. 18 Also, there is evidence indicating pathology
of the central nervous system and immune system
19 and evidence of metabolic dysfunction in the exercising muscle. 20 Also, Dr. Jay Goldstein has demonstrated
through SPECT scans the severely decreased brain perfusion of an M.E. patient
24 hours after physical exercise. 21 The
Canadian Criteria (2003) states that the worsening of symptoms after exertion
is a principal symptom of M.E. 22 Raised
levels of noxious by-products of abnormal cell membrane metabolism, associated
with exercise and correlating with patients’ symptoms have been demonstrated. 23
16) CBT and Graded Exercise Therapy can worsen M.E. symptoms.
In a survey of 3074 M.E./CFS patients conducted between 1998 – 2001, 55% of patients said that CBT had made no
difference to their illness, whilst 22% said CBT had made their illness worse.
16% of patients said that graded exercise had made no difference to their
illness whilst 48% said it had made their illness worse. 24 A survey by the 25% ME Group (for severe
sufferers) of 437 patients, demonstrated that of the 39% of group members who
had used graded exercise, 95% had found this therapy unhelpful, whilst 82%
reported their condition had been made worse by graded exercise. Some patients
were not severely ill with M.E. until after graded exercise. In the same survey
93% of those who had undergone Cognitive Behavioural Therapy had found it
unhelpful. 25
17) The CMO’s Report
recommended CBT and Graded Exercise Therapy despite the objection of two
patient support groups. The patient
support groups of BRAME (Blue Ribbon for the Awareness of ME) and the 25% ME
Group refused to endorse the CMO’s Report of 2002 based on its recommended
treatments of CBT and graded exercise. These support groups mainly represent
the needs of severe M.E. sufferers and were part of the CMO’s Working
Group.
18) Medical Concerns have been raised about the CMO’s
Report. The Journal of Chronic Fatigue Syndrome , mentions criticism by health
professionals and the public of both the British and the Australian M.E./CFS
guidelines. “These criticisms included claims of bias in the recommendations
toward a psychiatric outcome and failure to understand the limitations of
patients to perform exercise programs as well as many others.” 26
19) The NICE guidelines have received widespread
condemnation. The recent NICE guidelines were NOT supported by the following
registered U.K. M.E. charities: The M.E. Association, the 25%M.E. Group, Invest
in M.E., and the Grace Charity for M.E. Also, the organisation BRAME did not
support the guidelines outcome, despite the latter serving on the panel. There
are many other M.E. groups who also condemn these guidelines. The NICE
guidelines received so much criticism that NICE were taken to court by two M.E.
sufferers in February 2009. Views from international researchers (e.g.
Carruthers, Peterson, Lerner, Hooper and Drs involved with M.E. Research UK) regarding
the potential negative effects of Graded Exercise Therapy and CBT, were not
acknowledged in the Judge’s decision.
Also, the NICE guidelines group had no-one offering a
biomedical aetiology (cause) of M.E: therefore, the disease M.E. was never properly
addressed by NICE because researchers offering a biomedical cause were not
allowed to serve on the guideline group.
‘’Most Independent M.E. charities and patient organisations
have rejected the NICE guidelines...” 27
20) The PACE trials results in February 2011, promoting CBT,
Graded Exercise Therapy and APT (Adaptive Pacing Therapy, a form of Graded
Exercise) have also received widespread condemnation from M.E. patient groups
and medical researchers. 28
21) The International Consensus Primer for Medical
Practitioners 2012, states that PENE is a required symptom for a diagnosis of
M.E. (Post-Exertional Neuroimmune Exhaustion).
‘PENE is characterised by a pathological low threshold of
physical and mental fatigability, exhaustion, pain and an abnormal exacerbation
of symptoms in response to exertion. It is followed by a prolonged recovery
period. Fatigue and pain are part of the body’s global protection response and
are indispensable bioalarms that alert patients to modify their activities in
order to prevent further damage.’
The authors of the panel consist of twelve countries. 29
References
1 See the case
of St.George’s Healthcare NHS Trust v S
(1998) 3 All ER 673 (Court of Appeal),
p.758 of Hepple, Howarth and Matthews Tort, Cases and Materials, 5th Edition by DR Howarth and JA O’Sullivan, ISBN 0 406
063265 (Butterworths, 2000)
2 Quote from Kathleen
Jackson-Heppell, Communications Co-ordinator (Enquiry Handling and Internal
Communications for NICE), in an email to the Grace Charity for M.E. dated
15/02/2011
3 Quote from Natalie
Whelan, Communications Executive (Enquiry Handling) for NICE, in a letter to
the Grace Charity for M.E. dated 23rd September 2009.
5 See above
publication in endnote 1, regarding section attributed to Lord Brandon of
Oakbrook, pp.744, 745
6 The Human Rights
Act 1998, European Convention for the Protection of Human Rights and
Fundamental Freedoms, Section 1, Article 10, no.1
7 U.K. law on state
benefits, Regulation 18 Social Security (Incapacity For Work) Regulations. A
similar law applies to other state benefits for sickness and disability.
8 World Health
Organisation - International Classification of Diseases 10-G93.3
9 What is ME? What is
CFS? Information For Clinicians and Lawyers, Dec. 2001, Marshall, Williams,
Hooper, page 11. Available from Prof. Malcolm Hooper, Dept.of Life Sciences,
University of Sunderland SR2 7EE. Also, see www.meactionuk.org.uk
10 See the paper
‘Illustrations of Clinical Observations and International Research Findings
from 1955 – 2005 that demonstrate the organic aetiology of Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome’
by Hooper, Marshall, Williams, 2005, page 6. See also www.meactionuk.org.uk
11 See report from
BBC NEWS HEALTH, October 8 2010, ME patients face UK ban on donating blood by
Michelle Roberts. www.bbc.co.uk/news/health
12 Leaflet A
Physician’s Guide to Myalgic Encephalomyelitis Chronic Fatigue Syndrome, The
Nightingale Research Foundation, Vol.1, Issue 7, revised, 1992, page 17.
Also, Journal of Chronic Fatigue
Syndrome Vol . II, No.1, 2003, Canadian Criteria, page 25, The Haworth Press
Inc.
13 Ibid., A
Physician’s Guide to Myalgic Encephalomyelitis Chronic Fatigue Syndrome, page
25
14 Clinical
Observations of Central Nervous System Dysfunction in Post-Infectious, Acute
Onset M.E/CFS, page 38, The Clinical and Scientific Basis of Myalgic
Encephalomyelitis Chronic Fatigue Syndrome 1992, Byron Marshall Hyde, M.D., The
Nightingale Research Foundation.
15 Report from the
National Task Force on Chronic Fatigue Syndrome, Westcare, Bristol 1994. This
states nine definitions: the recent Canadian definition in 2003 makes ten.
16 Katon & Russo,
1992; Freiberg, 1999, Unhelpful Counsel? MERGE’s response to the CMO report on
CFS/ME, 2002, p15.
17 See the website of
the Medical Research Council at www.mrc.ac.uk
18 ME and/or CFS
paper, September 2001, page 1, V.A. Spence PhD, Chairman of MERGE (ME Research
Group for Education and Support). MERGE has become MERUK since this publication
(ME Research UK.) This paper quotes from several published findings. Available
from MERUK, The Gateway, North Methven Street, Perth PH1 5PP. Also, see www.meresearch.org.uk
19 The Biology of the
Chronic Fatigue Syndrome, Prof. Anthony Komaroff, The American Journal of
Medicine 2000: 108: 99-105.
20 Mitochrondrial
abnormalities in the postviral fatigue syndrome, Behan, W.M.H. et al., Acta
Neuropathologica 83, 1991, pages 61-65.
21 The Negative
Effects of Exercise on an M.E./CFS Dysfunctional Brain, page vii, The Clinical
and Scientific Basis of Myalgic Encephalomyelitis Chronic Fatigue Syndrome
1992, Byron Marshall Hyde, M.D., The Nightingale Research Foundation.
22 Journal of Chronic
Fatigue Syndrome Vol. 11, No.1, 2003, Canadian Criteria, page 22, The Haworth
Press Inc.
23 Oxidative stress
levels are raised in Chronic Fatigue Syndrome and are associated with clinical
symptoms, Kennedy, Spence, Belch, Free Radical Biology & Medicine
2005:39:584-589
24 Directly from the
Horses’ Mouths, Doris M. Jones MSc, Reference Group Member, CMO’s Working
Group. This survey was part of the Working Group on ME/CFS set up by the Chief
Medical Officer Sir Kenneth Calman in 1998.
26 See Footnote 22,
page 2 of the editorial
27 Letter from IiME
(Invest in M.E.) to Mr. Des Turner, Chairperson of the APPG (All Party
Parliamentary Group) on M.E./CFS, November 2008. Also, see www.investinme.org
28 See Professor
Malcolm Hooper’s response, 17th February 2011,
Professor Hooper’s Initial
Response to the MRC PACE Trial Press Release hosted by The Lancet www.meactionuk.org.uk
29 Myalgic
Encephalomyelitis Adult and Paediatric: International Consensus Primer for
Medical Practitioners. Publishers: Carruthers and van de Sande, 2012. ISBN:
978-0-9739335-3-6 pages 2,7
