Distinguishing between CFS/ME (WHO ICD-10 G93.3) and Neurasthenia (WHO ICD-10 F48.0)

Dear National Institute for Health and Clinical Excellence,

Preamble:

The NICE diagnostic guidelines for CFS/ME are very broad and inclusive and, in order to achieve a diagnosis of CFS/ME using the NICE guidelines, a patient requires only 'fatigue' (of new or specific onset; and persistent and/or recurrent), with one other symptom. (The 'other' symptom could be, for example, one of the following: headaches; or inability to concentrate; or hypersomnia; or insomnia).

In comparison, other international diagnostic guidelines define CFS or ME more selectively and require more symptoms to be present than the NICE guidelines require.

All internationally recognised major diagnostic criteria, for CFS or ME, are more selective than the NICE Guidelines for CFS/ME, and require more symptoms to be present, for a diagnosis, than NICE. [See NICE Guidelines Appendix 1 (2005) for details of various diagnostic criteria.]

Australia 1990 is an exception, in that it requires only one symptom, but it specifically requires 'post exertional fatigue', rather than simple chronic fatigue, so it could be argued that it is more selective, and more specific than NICE.

Oxford CFS (1991), is a little used, and superseded, criteria, was created in the UK, and is the only criteria that requires fewer symptoms (and is slightly less selective, and more broad) than the NICE Guidelines. Oxford CFS (1991) requires only (specific onset) 'chronic fatigue' for a CFS diagnosis.

The NICE guidelines, and the Oxford criteria, are untypical in their broadness and inclusivity. [See NICE Guidelines Appendix 1 (2005) for details of various diagnostic criteria.]

'CFS/ME' falls under the WHO ICD-10 'neurological' classification of 'G93.3' (Benign myalgic encephalomyelitis; Other disorders of brain.)

There is a separate and different ('neurotic') condition called 'neurasthenia' which is classified under the WHO ICD-10 'neurotic' classification of 'F48.0' (Neurasthenia; Other neurotic disorders.)
Neurasthenia, which is described in WHO ICD-10 F48.0, has some apparently (superficially, at least) identical symptoms to CFS/ME, but the two disorders (CFS/ME and neurasthenia) are categorised as completely different disorders in WHO ICD-10. Neurasthenia is classified as a neurotic illness, and CFS/ME is classified as a neurological disorder.

Whereas the NICE Guidelines for CFS/ME require only 'fatigue' and one other symptom (for example, an 'inability to concentrate') for a CFS/ME diagnosis, symptoms for 'neurasthenia', as described in the WHO International Classification of Diseases (under WHO ICD-10 F48.0), include 'fatigue' and 'difficulty in concentrating'.
There are other overlapping similar symptoms between the NICE guidelines for CFS/ME, and the WHO ICD-10 description of neurasthenia (F48.0).
So it seems that an English/UK clinician might easily confuse the two conditions/diseases, if using the NICE guidelines to make a diagnosis of CFS/ME, and must be very careful to exclude 'neurasthenia', when diagnosing CFS/ME patients.

Other, internationally recognised, diagnostic criteria are more selective than the NICE guidelines, and include symptoms that are not present in the description of 'neurasthenia' as described under WHO ICD-10 F48.0. (e.g. symptoms that are present in the US CDC 1994 criteria for CFS, but not in the WHO ICD-10 description of neurasthenia are as follows: sore throat; tender lymph nodes; post-exertion malaise lasting more than 24 hours.)

Questions:

1. How do the NICE guidelines for CFS/ME, differentiate between the WHO ICD10 classification 'G93.3' (Benign myalgic encephalomyelitis; Other disorders of brain) and 'F48.0' (Neurasthenia; Other neurotic disorders)?

2. What guidance is given by NICE to clinicians to enable them to distinguish the two disorders CFS/ME (WHO ICD-10 G93.3) (neurological) and Neurasthenia (WHO ICD-10 F48.0) (neurotic)?

3. Does NICE believe that the NICE guidelines for CFS/ME adequately protect clinicians against confusing CFS/ME with neurasthenia?

4. If NICE believes that the NICE guidelines for CFS/ME adequately protect clinicians against confusing CFS/ME with neurasthenia, please demonstrate how clinicians are guided to avoid confusion.

5. If NICE does not differentiate between the two different conditions (WHO ICD-10 G93.3 and WHO ICD-10 F48.0), what steps does NICE intend to take to differentiation between the two?

6. If NICE has no intention of differentiating between WHO ICD-10 G93.3 and F48.0, why not?

7. If NICE does not differentiate between the two different conditions (G93.3 and F48.0), how do CFS/ME patients, and their clinicians, know that they have CFS/ME and not neurasthenia, when diagnosed by an NHS doctor using the NHS Guidelines for CFS/ME?

8. As only 'fatigue' and one other symptoms (for example, an 'inability to concentrate') are necessary for a CFS/ME diagnosis with the NICE guidelines, and the NICE guidelines are less selective (more broad and inclusive) than other internationally recognised criteria, does NICE believe that the current CFS/ME guidelines adequately protect UK/English CFS/ME patients against a misdiagnosis for Neurasthenia (WHO ICD-10 F48.0)?

9. What part of the NICE guidelines ensure that the CFS/ME diagnostic guidelines do not select Neurasthenia (WHO ICD-10 F48.0) patients?

10. Does NICE consider that it would be appropriate to advise clinicians to use a more selective CFS or ME criteria alongside the NICE guidelines diagnostic criteria, in order to distinguish CFS/ME (WHO ICD-10 G93.3) from Neurasthenia (WHO ICD-10 F48.0) whenever possible in order to avoid misdiagnosis and innappropriate treatments?

11. Does NICE consider that the NHS should use use a more selective CFS or ME criteria alongside the NICE guidelines diagnostic criteria for CFS/ME, in order to distinguish CFS/ME (WHO ICD-10 G93.3) from Neurasthenia (WHO ICD-10 F48.0) whenever possible, in order to move towards better understanding of the nature of CFS/ME more, and/or to improve misdiagnosis rates for CFS/ME, and/or to improve treatment options for CFS/ME patients, and/or to offer better focused treatments for CFS/ME patients? If not, why not?

12. If NICE does not deem it important or possible for the NHS, and NHS clinicians, to distinguish between CFS/ME (WHO ICD-10 G93.3) and Neurasthenia (WHO ICD-10 F48.0), why does NICE consider it unimportant or impossible? (e.g. Does NICE consider it unimportant or impossible to distinguish a neurological disorder from a neurotic disorder?)

Yours faithfully,

Mr Courtney

NICE Mail, National Institute for Health and Clinical Excellence

Dear Mr Courtney

 

Reference No: EH28734

 

FREEDOM OF INFORMATION ACT 2000

 

Thank you for your request for information, received at this office on 19
November 2012, in which you requested the following:

 

Questions:
    
     1. How do the NICE guidelines for CFS/ME, differentiate between the
WHO ICD10 classification 'G93.3' (Benign myalgic encephalomyelitis; Other
disorders of brain) and 'F48.0' (Neurasthenia; Other neurotic disorders)?
    
     2. What guidance is given by NICE to clinicians to enable them to
distinguish the two disorders CFS/ME (WHO ICD-10 G93.3) (neurological) and
Neurasthenia (WHO ICD-10 F48.0) (neurotic)?
    
     3. Does NICE believe that the NICE guidelines for CFS/ME adequately
protect clinicians against confusing CFS/ME with neurasthenia?
    
     4. If NICE believes that the NICE guidelines for CFS/ME adequately
protect clinicians against confusing CFS/ME with neurasthenia, please
demonstrate how clinicians are guided to avoid confusion.
    
     5. If NICE does not differentiate between the two different
conditions (WHO ICD-10 G93.3 and WHO ICD-10 F48.0), what steps does NICE
intend to take to differentiation between the two?
    
     6. If NICE has no intention of differentiating between WHO ICD-10
G93.3 and F48.0, why not?
    
     7. If NICE does not differentiate between the two different
conditions (G93.3 and F48.0), how do CFS/ME patients, and their
clinicians, know that they have CFS/ME and not neurasthenia, when
diagnosed by an NHS doctor using the NHS Guidelines for CFS/ME?
    
     8. As only 'fatigue' and one other symptoms (for example, an
'inability to concentrate') are necessary for a CFS/ME diagnosis with the
NICE guidelines, and the NICE guidelines are less selective (more broad
and inclusive) than other internationally recognised criteria, does NICE
believe that the current CFS/ME guidelines adequately protect UK/English
CFS/ME patients against a misdiagnosis for Neurasthenia (WHO ICD-10
F48.0)?
    
     9. What part of the NICE guidelines ensure that the CFS/ME diagnostic
guidelines do not select Neurasthenia (WHO ICD-10 F48.0) patients?
    
     10. Does NICE consider that it would be appropriate to advise
clinicians to use a more selective CFS or ME criteria alongside the NICE
guidelines diagnostic criteria, in order to distinguish CFS/ME (WHO ICD-10
G93.3) from Neurasthenia (WHO ICD-10 F48.0) whenever possible in order to
avoid misdiagnosis and inappropriate treatments?
    
     11. Does NICE consider that the NHS should use a more selective CFS
or ME criteria alongside the NICE guidelines diagnostic criteria for
CFS/ME, in order to distinguish CFS/ME (WHO ICD-10 G93.3) from
Neurasthenia (WHO ICD-10 F48.0) whenever possible, in order to move
towards better understanding of the nature of CFS/ME more, and/or to
improve misdiagnosis rates for CFS/ME, and/or to improve treatment options
for CFS/ME patients, and/or to offer better focused treatments for
CFS/ME patients? If not, why not?
    
     12. If NICE does not deem it important or possible for the NHS, and
NHS clinicians, to distinguish between CFS/ME (WHO ICD-10 G93.3) and
Neurasthenia (WHO ICD-10 F48.0), why does NICE consider it unimportant or
impossible? (e.g. Does NICE consider it unimportant or impossible to
distinguish a neurological disorder from a neurotic disorder?)

 

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Janet Fahie

Communications Executive

National Institute for Health and Clinical Excellence

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NICE Mail, National Institute for Health and Clinical Excellence

Dear Mr Courtney

 

Reference No: EH28734

 

FREEDOM OF INFORMATION ACT 2000

 

Thank you for your request for information, received at this office on 19
November 2012, in which you asked a number of questions relating to our
guidance on CFS/ME.

 

Before responding to your individual questions it may be helpful to
provide some clarification on the points that you raise in your preamble,
to provide context for our answers.

 

Topics for the NICE work programme are referred by the Department of
Health in line with national priorities that they have identified. Our
clinical guidelines are based on the best available evidence, the
recommendations are developed following a robust process that involves
healthcare professionals, clinical experts, professional organisations,
technical analysts, patient groups and patient representatives. The
Guideline Development Group looks at the available evidence to identify
the best way of treating or managing the condition, and makes
recommendations based on this evidence, taking into account their
knowledge and personal experience. We also hold a public consultation to
enable interested groups (known as stakeholders) to comment on the draft
recommendations.

 

During the search for evidence we did identify guidance for the treatment
of CFS/ME that had been published by other organisations in different
countries and these were considered during the development of our
recommendations. However it would be inappropriate for NICE to comment on
these guidelines and in particular the diagnostic criteria that other
organisations have applied. I would like to clarify that the version of
Appendix 1 that you have located was developed in 2005 and made available
during the public consultation on our draft recommendations, between
September to November 2006, so this is not the final version. For ease of
access to guidance documents, I have included links to WebPages relating
to this guideline below:

 

CG53 [1]– Landing/summary page – from this page you can access all of the
documents, consultation documents (including comments received from
stakeholders during the public consultation and our responses)

CG53 – [2]Full guideline – this version of the guidance contains the
search strategies, our consideration of the evidence and all of our
recommendations. The appendices to the guideline are also available on
this page.

CG53 – [3]NICE guideline – a more concise version of the guidance
containing a summary of the recommendations  

CG53 – [4]Stakeholder comments received during the consultation and our
responses

 

As to the classification of CFS/ME within the guideline, we acknowledge
that many different potential causes have been investigated – including
neurological, endocrine, immunological, genetic, psychiatric and
infectious – but the diverse nature of the symptoms cannot yet be fully
explained. As you are aware the guideline recognises that the World Health
Organization (WHO) classifies CFS/ME as a neurological illness. Some
members of the Guideline Development Group felt that, until further
research identifies its cause and how it develops, the guideline should
recognise this classification. So while it is generally recognised that
CFS/ME is heterogeneous, the evidence did not allow distinctions between
sub-groups with regard to diagnosis or management of the condition. This
assessment can be found in Section 1 of the full guideline document which
can be downloaded from the NICE website.

 

The issue of the classification of the disease was commented on by
stakeholders during the public consultation as this had not been included
in the first draft. In response to feedback received we revised the text
in the guideline to include reference to the World Health Organisation
(WHO) classification ICD10 as G93.3. In the [5]general stakeholder
comments you can read the feedback from stakeholders on this issue, this
feedback includes information on correspondence that external stakeholders
have had with the WHO regarding the classification of the disease in
ICD10.  

 

With respect to the therapies recommended in the guideline, the guidance
highlights the importance of shared decision-making between health
professionals and people with CFS/ME, providing therapies suitable to the
individual and of the individual’s right to refuse or withdraw from any
part of their treatment plan without it affecting future care. Different
combinations of approaches will be helpful for different people.

 

I hope this information is helpful to you.

 

It is important to note that requests for information under the Freedom of
Information Act relate to information that is actually held by the
Authority, therefore where your questions seek an opinion from NICE we are
unfortunately unable to respond.

 

To deal with your questions in turn:

 

     1. How do the NICE guidelines for CFS/ME, differentiate between the
WHO ICD10 classification 'G93.3' (Benign myalgic encephalomyelitis; Other
disorders of brain) and 'F48.0' (Neurasthenia; Other neurotic disorders)?

 

I can confirm that we do not hold this information as we have not made
recommendations on the classification of CFS/ME in accordance with the WHO
ICD10.

    
     2. What guidance is given by NICE to clinicians to enable them to
distinguish the two disorders CFS/ME (WHO ICD-10 G93.3) (neurological) and
Neurasthenia (WHO ICD-10 F48.0) (neurotic)?

 

I can confirm that we do not hold this information as the clinical
guideline on CFS/ME (CG53) does not include a recommendation on to
distinguish the two disorders CFS/ME (WHO ICD-10 G93.3) (neurological) and
Neurasthenia (WHO ICD-10 F48.0) (neurotic)

    
     3. Does NICE believe that the NICE guidelines for CFS/ME adequately
protect clinicians against confusing CFS/ME with neurasthenia?

 

Freedom of information requests relate to information that is held by an
organisation. As this question is seeking an opinion I can confirm that we
do not hold information on whether NICE believes that the NICE guidelines
for CFS/ME adequately protect clinicians against confusing CFS/ME with
neurasthenia
    
     4. If NICE believes that the NICE guidelines for CFS/ME adequately
protect clinicians against confusing CFS/ME with neurasthenia, please
demonstrate how clinicians are guided to avoid confusion.

 

The NICE clinical guideline on CFS/ME does not contain recommendations on
how to classify the condition in accordance with the WHO ICD10 so I can
confirm that NICE does not hold this information.

 

It is important to note that NICE clinical guidelines are advisory rather
than statutory Once NICE guidance is published, health professionals (and
the organisations who employ them) are expected to take it fully into
account when deciding what treatments to give people. However, NICE
guidance does not replace the knowledge and skills of individual health
professionals who treat patients; it is still up to them to make decisions
about a particular patient in consultation with the patient and/or their
guardian or carer when appropriate.

     5. If NICE does not differentiate between the two different
conditions (WHO ICD-10 G93.3 and WHO ICD-10 F48.0), what steps does NICE
intend to take to differentiation between the two?

 

I can confirm that we do not hold this information as we have not made
recommendations on the classification of CFS/ME in accordance with the WHO
ICD10.

 
     6. If NICE has no intention of differentiating between WHO ICD-10
G93.3 and F48.0, why not?
    

NICE will not publish any additional recommendations on the
differentiation between WHO ICD-10 G93.3 and F48.0 as this is outside the
scope of the guidance.

     7. If NICE does not differentiate between the two different
conditions (G93.3 and F48.0), how do CFS/ME patients, and their
clinicians, know that they have CFS/ME and not neurasthenia, when
diagnosed by an NHS doctor using the NHS Guidelines for CFS/ME?
  

Please see the answer to question 4 above

  
     8. As only 'fatigue' and one other symptoms (for example, an
'inability to concentrate') are necessary for a CFS/ME diagnosis with the
NICE guidelines, and the NICE guidelines are less selective (more broad
and inclusive) than other internationally recognised criteria, does NICE
believe that the current CFS/ME guidelines adequately protect UK/English
CFS/ME patients against a misdiagnosis for Neurasthenia (WHO ICD-10
F48.0)?

 

I can confirm that we do not hold this information as we have not made
recommendations on the classification of CFS/ME in accordance with the WHO
ICD10.

     9. What part of the NICE guidelines ensure that the CFS/ME diagnostic
guidelines do not select Neurasthenia (WHO ICD-10 F48.0) patients?

 

I can confirm that we do not hold this information as we have not made
recommendations on the classification of CFS/ME in accordance with the WHO
ICD10.

    
     10. Does NICE consider that it would be appropriate to advise
clinicians to use a more selective CFS or ME criteria alongside the NICE
guidelines diagnostic criteria, in order to distinguish CFS/ME (WHO ICD-10
G93.3) from Neurasthenia (WHO ICD-10 F48.0) whenever possible in order to
avoid misdiagnosis and inappropriate treatments?

 

I can confirm that we do not hold information on whether it would be
appropriate to advise clinicians to use a more selective CFS or ME
criteria alongside the NICE guidelines diagnostic criteria, in order to
distinguish CFS/ME (WHO ICD-10 G93.3) from Neurasthenia (WHO ICD-10 F48.0)
whenever possible in order to avoid misdiagnosis and inappropriate
treatments.

    
     11. Does NICE consider that the NHS should use a more selective CFS
or ME criteria alongside the NICE guidelines diagnostic criteria for
CFS/ME, in order to distinguish CFS/ME (WHO ICD-10 G93.3) from
Neurasthenia (WHO ICD-10 F48.0) whenever possible, in order to move
towards better understanding of the nature of CFS/ME more, and/or to
improve misdiagnosis rates for CFS/ME, and/or to improve treatment options
for CFS/ME patients, and/or to offer better focused treatments for
CFS/ME patients? If not, why not?
 

I can confirm that we do not hold this information as we have not made
recommendations on the classification of CFS/ME in accordance with the WHO
ICD10.

   
     12. If NICE does not deem it important or possible for the NHS, and
NHS clinicians, to distinguish between CFS/ME (WHO ICD-10 G93.3) and
Neurasthenia (WHO ICD-10 F48.0), why does NICE consider it unimportant or
impossible? (e.g. Does NICE consider it unimportant or impossible to
distinguish a neurological disorder from a neurotic disorder?)

 

Freedom of information requests relate to information that is held by an
organisation. I can advise you that this information is not held by NICE.

 

Finally you may wish to note that in November 2010 we held a public
consultation on whether to review this guidance. Following the
consultation it was decided that the guidance should not be updated at
this time. The review consultation and decision papers are available via
the landing page for the guidance.

 

If you have any further questions you are welcome to contact the Enquiry
Handling team again via telephone 0845 003 7781 or email
[6][NICE request email]

 

If you are unhappy with this response and wish to make a formal complaint
 it must be made in writing by letter, fax or email within 20 working days
of the Institute’s response to you and sent to:

 

Lorraine Taylor

Associate Director, Corporate Office

National Institute for Health and Clinical Excellence

10 Spring Gardens

London SW1A 2BU

Email: [7][email address]

 

Once we have received your complaint, you will be sent an acknowledgement
within two working days. The Associate Director, Corporate Office, will
review your complaint and a full reply will be sent to you within 20
working days.

 

If you are not content with the outcome your complaint, you may apply
directly to the Information Commissioner for a decision who can be
contacted at: The Information Commissioner’s Office, Wycliffe House, Water
Lane, Wilmslow, Cheshire SK9 5AF.

 

Kind regards

Janet                                       

 

Janet Fahie

Communications Executive

National Institute for Health and Clinical Excellence
Level 1A | City Tower | Piccadilly Plaza | Manchester M1 4BT | United
Kingdom

Tel: 44 (0)845 003 7781 | Fax: 44 (0)845 003 7784
Web: [8]http://nice.org.uk

 

The information contained in this message and any attachments is intended
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disclose, reproduce or distribute this message. If you have received this
message in error, please advise the sender and delete it from your system.
Any personal data sent in reply to this message will be used in accordance
with provisions of the Data Protection Act 1998 and only for the purposes
of the Institute's work.

All messages sent by NICE are checked for viruses, but we recommend that
you carry out your own checks on any attachment to this message. We cannot
accept liability for any loss or damage caused by software viruses.

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