MEagenda note: Professor Peter Denton White of Barts CF Service co-authored the NICE CFS/ME Guideline Editorial in the BMJ, published Friday, 31 August 2007.
A Selection of the points the Barts CF Service made during the NICE Guidelines for CFS/ME
by Tom Kindlon [originally circulated via Co-Cure mailing list]
I previously highlighted some points made by the Association of British Neurologists during the NICE process [Ed: Read Tom Kindlon’s previous article here] and highlighted that one can read further submissions at:
However this is a huge mass of information and going back and comparing it to the original is a lot of work. So I imagine most people will not do it.
So I thought I’d highlight some comments by St Bartholomew’s Hospital Chronic Fatigue Services. I have done this on a couple of UK lists and people have been fascinated by what was said. St Bartholomew’s Hospital is often shortened to Barts – this is not a derogatory abbreviation.
The Barts service is led by the psychiatrist, Prof. Peter White. Peter White is a major person in the CFS world. He has done much work in the US in recent years including with the CDC so I thought people around the world might be interested in some of the points they made.
I have not put comments so people can judge the comments themselves.
Tom Kindlon
03 September 2007
Extracts from Comments and Responses to NICE CFS/ME draft guideline from St Bartholomew’s Hospital Chronic Fatigue Services
(i) On Disability aids and equipment:
[TK: A blue badge is a disabled parking badge to allow somebody park in a disabled parking space]
Draft text:
6.3.6.8 For adults and children with moderate or severe symptoms, provision of equipment and adaptations (for example, a wheelchair, blue badge or stairlift) to allow individuals to improve their independence and quality of life should be considered, if appropriate and as part of an overall management plan.
SH St Bartholomew’s Hospital Chronic Fatigue Services 69 FULL 183 6.3.6.8
“…equipment and adaptations (for example, a wheelchair, blue badge or stairlift)…”We disagree with this recommendation. Why should someone who is only moderately disabled require any such equipment? Where is the warning about dependence being encouraged and expectation of recovery being damaged by the message that is given in this intervention? We are in no doubt that it is a powerful message for a therapist of any sort to provide such aids. Our view is that such aids should only be considered by a multi-disciplinary therapeutic team as a whole, and usually in the context of providing a temporary means for a patient to increase their activity levels. An example would be providing a wheelchair for a bed-bound patient as part of their active rehabilitation programme. In our opinion, such aids should never be seen as a permanent solution to disability in this illness.
NICE response:
We have recommended such equipment only if appropriate, and as part of an overall management plan and as an aid to independence.
Draft text:
1.3.1.8 For adults and children with moderate or severe symptoms, provision of equipment and adaptations (for example, a wheelchair, blue badge or stairlift) to allow individuals to improve their independence and quality of life should be considered, if appropriate and as part of an overall management plan.
SH St Bartholomew’s Hospital Chronic Fatigue Services
Equipment and aids may hinder recovery as much as help it, and their prescription needs to consider both outcomes. We believe disability aids can help a patient towards recovery if their use encourages a widening and increase in their own activities, on a temporary basis, as a means of supporting a rehabilitation programme. They should rarely if ever be used for patients with only moderate disabilities.
(ii) On making information available on audio tape:
SH St Bartholomew’s Hospital Chronic Fatigue Services 91 FULL 260 13
Why should anyone with concentration difficulties find it easier to use audiovisual technology, which by your implication does not involve reading, more than reading itself (from either a book or computer screen)? Would it not be more effective to negotiate a simple graded programme of reading to help such a patient improve their reading ability, along with helping to improve their cognitive capacity through improving sleep and mood? What might be effective advice is to encourage the use of voice-activated software in someone who finds typing using a keyboard physical tiring, and needs to meet a deadline in their job or studies.
NICE response:
Noted and removed – we consider that the text on including cognitive activities addresses these points.
(iii) On Weight loss in CFS/ME
SH St Bartholomew’s Hospital Chronic Fatigue Services 88 FULL 248 6.5.5.2
“Adults or children who experience severe weight loss should be referred to a dietitian for assessment, advice and nutritional support, which in extreme cases may include tube feeding.”
This is alarming and arguably negligent advice, which we strongly condemn. Any patient who experiences severe weight loss should be referred for appropriate assessment, not by a dietician alone, but by an appropriate specialist doctor (gastro-enterologist or psychiatrist) so a diagnosis can be made. We do not know of any reliable or replicated evidence that severe weight loss, indeed any weight loss at all, is a part of CFS/ME. Whereas we are aware of patients referred to our service with a diagnostic label of CFS/ME who on assessment have an alternative diagnosis, most commonly anorexia nervosa (sometimes presenting atypically without a body image disorder, which is well described in the anorexia nervosa literature), but, on occasion, malabsorption.
NICE response:
This recommendation has been removed.
(iv) On Neuropathetic pain and Gabapentin:
Draft Text:
Gabapentin: The GDG noted that the wider survey was supportive of gabapentin in severe CFS/ME sufferers. The GDGwas uncertain why this was the case. Because of its side effects, the GDGdid not think that it should be used for mild pain but there will be certain individual cases when it might be considered despite a relatively high side-effect profile. The GDG decided not to make a positive or negative recommendation.
SH St Bartholomew’s Hospital Chronic Fatigue Services 87 FULL 233 1The GDG noted the survey support of the use of gabapentin in CFS/ME. However this drug is licensed for neuropathic pain. There is no evidence that patients with CFS/ME have a neuropathyand we would not recommend the use of this drug, particularly as one of its significant side effects is sedation, without empirical evidence for its support, which is currently lacking. It would be surprising if NICE gave guidance based on anecdotal evidence, an inaccurate indication, for a drug, which has significant adverse effects.
NICE Response:
Noted and we have recommended that people should be referred for specialist pain management if appropriate.
(v) Bowel symptoms and CFS/ME:
Draft text:
6.4.5.5 Prescribing of gut anti-spasmodics (such as mebeverine, alverine, and peppermint oil) should be considered for adults and children with bowel symptoms, such as cramp or bloating.
SH St Bartholomew’s Hospital Chronic Fatigue Services 85 FULL 229 6.4.5.5
“…gut anti-spasmodics…” are not treatments of CFS/ME since bowel symptoms are not part of CFS/ME. You should make it explicit that this treatment might be indicated for the treatment of IBS, if present comorbidly. Alternatively, and perhaps more wisely, you could suggest that IBS, if present, should be treated in the light of the best available evidence, and refer readers to appropriate guidance, which may or may not include considering antispasmodics as the treatment of choice for “bloating”, although we would doubt it. You do mention IBS on page 233, line 12.
NICE response:
We have revised this recommendation and referred to the NICE IBS guideline – currently in development.
(vi) On Drug Intolerance and CFS/ME:
Draft text:
6.4.5.2 Adults and children with CFS/ME may experience greater intolerance and more severe adverse/side effects from drug treatment. Where appropriate, drug treatment used for symptom control should therefore be initiated at a lower dose than in usual clinical practice, and should be increased gradually.
SH St Bartholomew’s Hospital Chronic FatigueServices 84 FULL 229 6.4.5.2
We are not aware of any reliable and replicated evidence to support the statement that patients with CFS/ME are more intolerant or have more severe adverse effects; and “more intolerant” than whom? We do not agree that drug treatment should be initiated at lower dose than in usual clinical practice. This possible myth is repeated within the guideline at various points, and is important since it may make doctors more likely to prescribe sub-therapeutic doses. If you are going to keep this included, you should make sure that the anecdotal level of evidence for this is explicitly stated. We would suggest changing to “…drug treatment at lower doses may be considered…”
(vii) On Recovery times:
Draft text:
6.3.6.16 When planning a programme of GET the healthcare professional should:
• discuss with the patient ultimate goals with the patient that are important and relevant to them. This may be, for example a 2 x 15 minutes daily brisk walk to the shop, a return to previous active hobby such as cycling or gardening, or, if more severely affected, sitting up in bed to eat a meal.
• recognise that it may take weeks, months, or even years to achieve goals, and it is essential that the therapy structure takes this pace of progress into account.
SH St Bartholomew’s Hospital Chronic Fatigue Services 75 FULL 188 6.3.6.16
These goals should include recovery, not just exercise and activity goals. If it takes “years” to achieve goals, then either the goals are wrong or the therapy is wrong. What other treatment in medicine would take years to work? We suggest “or even years” is deleted. If a therapy is not helping within a few months, either the therapy or the diagnosis or both should be reviewed and changes considered. We suggest that this advice is pertinent to all treatment approaches, not just for GET.
NICE response:
The statistics indicate that total recovery is relatively rare and the GDGfelt that to include recovery as a goal may lead to disappointment. As the goals are patient derived they may be long term. Interim goals would be developed.
(viii) on Multiple Chemical Sensitivity (MCS):
Draft text (this is in a section on severe CFS/ME):
“Family life may also be affected as people with severe CFS/ME are often sensitive to sounds and smell. For example, the person may be unable to tolerate light or cleaning products whilst they are often unable to control their body temperature, thus impacting on the living environment.”
and
“…Those caring for an individual with severe CFS/ME professionally need an understanding of the illness and the needs of the individual to meet the challenges of, for example, cooking or cleaning for an individual who is sensitive to the smell of food or of cleaning materials or bathing an individual who finds touch painful. Therefore proper training should be given about the condition with the involvement of the patient for any particular problems.”
SH St Bartholomew’s Hospital Chronic Fatigue Services 92 FULL 261 3 +
A patient with increased sensitivity to the smell of various chemicals may be suffering from multiple chemical sensitivity, but you would be making a dubious assumption to state this is part of or even characteristic of severely disabling CFS/ME. MCS is a potentially remediable condition through a graded exposure programme on the basis that the underlying pathophysiology is a conditioned response. It should not be considered as a part of CFS/ME.
(See: Staudenmayer H, Binkley KE, Leznoff A, Phillips S. Idiopathic environmental intolerance: Part 2: A causation analysis applying Bradford Hill’s criteria to the psychogenic theory. Toxicological Reviews 2003;22:247-61.
Bornschein S, Hausteiner C, Zilker T, Forstl H. Van den Bergh O, Devriese S, Winters W, Veulemans H, Nemery B, Eelen P, Van de Woestijne KP. Acquiring symptoms in response to odors: a learning perspective on multiple chemical sensitivity. Annals of the New York Academy of Sciences 2001;933:278-90.
Otto T, Giardino ND. Pavlovian conditioning of emotional responses to olfactory and contextual stimuli: a potential model for the development and expression of chemical intolerance. Annals of the New York Academy of Sciences 2001;933:291-309.)
NICE response:
This section has been removed.
(viii) Point about whether CFS/ME is an incurable chronic disease or not:
Draft text:
1.3.1.6 The objectives of the individualised programme are to:
• sustain or gradually extend, if possible, the person’s physical, emotional and cognitive capacity
• manage the physical and emotional impact of their symptoms.
SH St Bartholomew’s Hospital Chronic Fatigue Services 103 NICE 18 1.3.1.6
The emphasis here would be appropriate for someone suffering from an incurable chronic disease, which CFS/ME is most often not. The aim of an individualised programme should be to help the patient recover, or, if this is not possible, to help the patient improve their quality of life and minimise disability. The expectation of both the patient and the practitioner is vitally important in determining outcome, and these current aims are too conservative, and inconsistent with the best available evidence.
NICE response:
The Guideline Development Group had to balance a positive outlook with the recognition that some people will not recover.
(ix) On liaising with employers:
Draft text:
• Healthcare professionals should be proactive in advising about fitness for work and education, and recommend adjustments or adaptations to work or studies to enable rehabilitation of adults and children with CFS/ME. This includes liaising (with the person’s consent) with employers, education providers and support services e.g: occupational health services
SH St Bartholomew’s Hospital Chronic Fatigue Services FULL 23 22 thru 27
Sometimes acting as an intermediary between patient and employer may encourage dependence rather than fostering recovery via empowerment. We therefore suggest adding the word “may” on line 24 to read, “This may include…”
Edited: March 08, 2019
All the PDF files of the Stakeholder Comments from the 2006 CG53 consultation are now available on Dx Revision Watch in this post:
NICE CFS/ME consultation draft 29 September – 24 November 2006 Comments from stakeholders
MARCH 8, 2019
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