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ICD-11 status reports: G93.3 legacy terms: PVFS, BME, CFS

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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Update at 10/04/17
Update at 11/04/17
Update at 12/04/17


The proposal and rationale that Mary and I collaborated on was submitted on March 27. We began informing international patient and advocacy organizations on Thursday, March 30.

Local UK groups have been alerted, today, via the LocalME Yahoo Group.

193 "Agrees" at 10/04/17
Around 161 Comments

361 "Agrees" at 11/04/17
423 "Agrees" at 12/04/17

These are the international organizations that have commented so far in support of the proposal: I will update this post as more are published.

UK

The Devon ME Support Group
Invest in ME Research, Chairman
Hope 4 ME & Fibro Northern Ireland


USA


Open Medicine Foundation, Linda Tannenbaum
PANDORA Org
NJ CFIDS organization
Solve ME/CFS Initiative, USA, Carol Head, CEO

Canada


The National ME/FM Action Network (Canada), President
ME/FM Society of BC, Canada, Board member
Millions Missing Canada


EU


RME The Swedish Association for ME, Chair
Norges Myalgisk Encefalopati Forening - The Norwegian ME association, Secretary General
The Belgian ME Association, Chair
The European ME Alliance (EMEA), Chair on behalf of 13 members
The Danish ME Association, Vice Chairman
Groep ME Den Haag (Netherlands)
The Dutch ME/cfs Association, Boardmember ME/cvs Vereniging, Nederland
Deutsche Gesellschaft für ME/CFS, Daniel Hattesohl, Chairman of the DG-ME/CFS


Australia

ME/CFS Australia (SA), President


New Zealand


NZMEAction, New Zealand, Boardmember


International


Race to Solve ME/CFS (FB group)

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Mark Berry has received an invitation for PR to review our proposals but I have not received a response, as yet.

------------

Edited to add: If I have missed any organizations in the comment list, let me know and I'll insert.
 
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Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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Think I prefer the term PVFS over all
This is what Mary and I included in our proposal:

Extract from Page 6: Suzy Chapman, Mary Dimmock Proposal for ICD-11

http://bit.ly/2mQxWTS

Note 3: Deprecation of postviral fatigue syndrome: The term "postviral fatigue syndrome" appears to be an ill-defined term that is not found extensively in the literature.

A search via PubMed on March 12, 2017 returned 55 papers referencing "postviral fatigue syndrome" (1985 - 2005) and 39 papers referencing "post viral fatigue syndrome" (1985 - 2014). Whereas a search for "myalgic encephalomyelitis" returned 629 papers (1956 - 2017) and a search for "chronic fatigue syndrome" returned 6020 papers (1985 - 2017) [1].

The extent to which the term is used by practitioners in primary care and specialty clinical settings and the frequency of recording in electronic medical record systems has not been determined.

Other than the Oxford Criteria for Post-infectious Fatigue Syndrome (PIFS), which is defined as "a subtype of CFS which either follows an infection or is associated with a current infection," the authors can find no working case definition for postviral fatigue syndrome [2]. The U.S. National Institutes of Health (NIH) has declared the Oxford Criteria severely flawed and recommended its retirement [3].

Postviral fatigue syndrome is an inappropriate concept title for myalgic encephalomyelitis, as not all cases of myalgic encephalomyelitis are preceded by a viral infection [4].

The authors consider there is insufficient justification for retaining postviral fatigue syndrome as a concept title for ICD-11.

Recommendation: For continuity and comparability with ICD-10, the recommendation is to include postviral fatigue syndrome as a synonym term under new concept title: Myalgic encephalomyelitis.


3.1 Synonyms: Synonym terms for Myalgic encephalomyelitis have been suggested with reference to those listed in SNOMED CT International Edition and SNOMED CT National Extensions [5].

References:

1 PubMed, US National Library of Medicine National Institutes of Health. https://www.ncbi.nlm.nih.gov/pubmed

2 Sharpe MC, Archard LC, Banatvala JE, et al. A report - chronic fatigue syndrome: guidelines for research. Journal of the Royal Society of Medicine. 1991;84(2):118-121. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1293107/

3 National Institutes of Health Pathways to Prevention Workshop: Advancing the Research on Myalgic
Encephalomyelitis/ Chronic Fatigue Syndrome, Final Report. December 9–10, 2014 (p. 16).
https://prevention.nih.gov/docs/programs/mecfs/ODP-P2P-MECFS-FinalReport.pdf

4 "The cause of ME/CFS remains unknown, although in many cases, symptoms may have been triggered by an infection or other prodromal event, such as "immunization, anesthetics, physical trauma, exposure to environmental pollutants, chemicals and heavy metals, and rarely blood transfusions" (Carruthers and van de Sande, 2005, p. 1)." National Academy of Medicine. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. The National Academies Press. May 2015. https://www.nap.edu/catalog/19012/b...hronic-fatigue-syndrome-redefining-an-illness

5 SNOMED International SNOMED CT Browser. http://browser.ihtsdotools.org/ [Accessed: March 16, 2017]

----------------------------------------------------------------

As the Beta draft had stood between 2012 and early 2013 (the point at which the terms were removed from view in the public version of the drafting platform) TAG Neurology had had this hierarchical arrangement for the three terms:

Source: ICD-11 Beta drafting platform [Accessed July 26, 2012]

 
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Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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With reference to the list of synonym terms in the Beta draft, as it had stood between 2012 and early 2013 (in the screenshot in Post #187, above):

The current list of synonym terms under PVFS, as the draft has stood since the terms were restored (with a caveat) on March 26:

http://apps.who.int/classifications/icd11/browse/f/en#/http://id.who.int/icd/entity/569175314

no longer includes:

chronic fatigue syndrome nos (from ICD-10-CM, Symptoms, signs R53.82 inclusion term)

but still includes:

chronic fatigue, unspecified (from ICD-10-CM Symptoms, signs R53.82 concept title).

I have separately from the proposal that Mary and I submitted, proposed that "chronic fatigue, unspecified" is deleted. It is a term specific to the U.S.'s ICD-10-CM and in ICD-10-CM it has an Excludes1 for Postviral fatigue syndrome (G93.3).

So it should not, in any case, be in the list under G93.3 legacy terms.
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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Update at 14/04/17
Update at 15/04/17


Agrees: 475

Agrees: 478

Comments: in the region of 345


These are the international organizations that have commented so far in support of the proposal: I will update this post as more are published.

UK

The Devon ME Support Group
Invest in ME Research, Chairman
Hope 4 ME & Fibro Northern Ireland


USA


Open Medicine Foundation, Linda Tannenbaum
PANDORA Org
NJ CFIDS organization
Solve ME/CFS Initiative, USA, Carol Head, CEO

Canada


The National ME/FM Action Network (Canada), President
ME/FM Society of BC, Canada, Board member
Millions Missing Canada


EU


RME The Swedish Association for ME, Chair
Norges Myalgisk Encefalopati Forening - The Norwegian ME association, Secretary General
The Belgian ME Association, Chair
The European ME Alliance (EMEA), Chair on behalf of 13 members
The Danish ME Association, Vice Chairman
Groep ME Den Haag (Netherlands)
The Dutch ME/cfs Association, Boardmember ME/cvs Vereniging, Nederland
Deutsche Gesellschaft für ME/CFS, Daniel Hattesohl, Chairman of the DG-ME/CFS


Australia

ME/CFS Australia (SA), President


New Zealand


NZMEAction, New Zealand, Boardmember

International


The Japan ME Association (Tokyo, Japan)


Facebook groups and other groups

Race to Solve ME/CFS
M.E. Alliance, Wendy Boutilier
Global Advocates for ME, Wendy Boutilier
Friends for Honesty about ME, Wendy Boutilier

------------

Mark Berry has received an invitation for PR to review our proposal but I have not received a response, as yet.
 
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Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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Q & A version 1, April 2017

Proposal for the ICD-10 G93.3 legacy terms for ICD-11, submitted by Suzy Chapman and Mary Dimmock on March 27, 2017

https://dxrevisionwatch.files.wordp...osal-g93-3-q-and-a-april-2017-version-1-1.pdf

http://bit.ly/Proposal111QA


Covers:


Q1: Your proposal for ICD-11 does not recommend retiring CFS. Why is that?
Q2: Are PVFS, (Benign) ME and CFS classified the same across all versions of ICD-10?
Q3: How is ICD Revision proposing to classify the G93.3 legacy terms?
Q4: Is there any proposal to classify the terms under Mental or behavioural disorders?
Q5: Will ICD-11 look and function differently to ICD-10?
Q6: What is the implementation date for ICD-11?
Q7: Is ICD-11's proposed new category "Bodily distress disorder" the same as Fink's
"Bodily distress syndrome"?
Q8: Where can I view the Beta draft and comment on your proposal?
 
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Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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Latest org to support proposal:

The AQEM (Association québécoise de l'encéphalomyélite myalgique du Québec, Canada, in the name of our membres fully support this proposal. David Lachance 2017-Apr-19 - 22:28 UTC

---------------------

Quick update at 20/04/17:

Agrees: 508

Comments: > 350

These are the international organizations that have commented so far in support of the proposal.

UK

The Devon ME Support Group
Invest in ME Research, Chairman
Hope 4 ME & Fibro Northern Ireland

New: Forward-ME (Countess of Mar's group on behalf of ME Association, ME Research UK, Action for M.E., Tymes Trust, reMEmber CFS, Blue Ribbon Awareness of ME (BRAME), ME Trust, the 25% ME Group, and Invest in ME)

USA


Open Medicine Foundation, Linda Tannenbaum
PANDORA Org
NJ CFIDS organization
Solve ME/CFS Initiative, USA, Carol Head, CEO
New: The Massachusetts CFIDS/ME & FM Association, Leah Williams, Treasurer, on behalf of the Board of Directors

Canada

The National ME/FM Action Network (Canada), President
ME/FM Society of BC, Canada, Board member
Millions Missing Canada
The AQEM (Association québécoise de l'encéphalomyélite myalgique du Québec, Canada,

EU

RME The Swedish Association for ME, Chair
Norges Myalgisk Encefalopati Forening - The Norwegian ME association, Secretary General
The Belgian ME Association, Chair
The European ME Alliance (EMEA), Chair on behalf of 13 members
The Danish ME Association, Vice Chairman
Groep ME Den Haag (Netherlands)
The Dutch ME/cfs Association, Boardmember ME/cvs Vereniging, Nederland
Deutsche Gesellschaft für ME/CFS, Daniel Hattesohl, Chairman of the DG-ME/CFS


Australia

ME/CFS Australia (SA), President
New: ME/CFS and Lyme Association of WA Committee


New Zealand

NZMEAction, New Zealand, Boardmember

Other International

The Japan ME Association (Tokyo, Japan)

Facebook groups and other groups

Race to Solve ME/CFS
M.E. Alliance, Wendy Boutilier
Global Advocates for ME, Wendy Boutilier
Friends for Honesty about ME, Wendy Boutilier
New: Support for the Followers of Dr Myhill's Protocol

------------

If I have missed any, please let me know and I'll add to the list.


I am anticipating a joint response from a number of UK orgs, next week.

Mark Berry has received an invitation for PR to review our proposal but I have not received any indication that a comment in the name of PR is being considered.
 
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Mark

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Latest org to support proposal:

The AQEM (Association québécoise de l'encéphalomyélite myalgique du Québec, Canada, in the name of our membres fully support this proposal. David Lachance 2017-Apr-19 - 22:28 UTC

---------------------

Quick update at 20/04/17:

Agrees: 508

Comments: > 350

These are the international organizations that have commented so far in support of the proposal.

UK

The Devon ME Support Group
Invest in ME Research, Chairman
Hope 4 ME & Fibro Northern Ireland


USA


Open Medicine Foundation, Linda Tannenbaum
PANDORA Org
NJ CFIDS organization
Solve ME/CFS Initiative, USA, Carol Head, CEO

Canada

The National ME/FM Action Network (Canada), President
ME/FM Society of BC, Canada, Board member
Missing Millions Canada
The AQEM (Association québécoise de l'encéphalomyélite myalgique du Québec, Canada,

EU

RME The Swedish Association for ME, Chair
Norges Myalgisk Encefalopati Forening - The Norwegian ME association, Secretary General
The Belgian ME Association, Chair
The European ME Alliance (EMEA), Chair on behalf of 13 members
The Danish ME Association, Vice Chairman
Groep ME Den Haag (Netherlands)
The Dutch ME/cfs Association, Boardmember ME/cvs Vereniging, Nederland
Deutsche Gesellschaft für ME/CFS, Daniel Hattesohl, Chairman of the DG-ME/CFS


Australia

ME/CFS Australia (SA), President


New Zealand

NZMEAction, New Zealand, Boardmember

International

The Japan ME Association (Tokyo, Japan)

Facebook groups and other groups

Race to Solve ME/CFS
M.E. Alliance, Wendy Boutilier
Global Advocates for ME, Wendy Boutilier
Friends for Honesty about ME, Wendy Boutilier

------------

If I have missed any, please let me know and I'll add to the list.


I am anticipating a joint response from a number of UK orgs, next week.

Mark Berry has received an invitation for PR to review our proposal but I have not received any indication that a comment in the name of PR is being considered.
Buried in my email somewhere, I've been focused on sorting out our technical foundations to ensure that PR forums continue to exist.

I'd love for us to comment on this, I know it's important, but haven't had time to investigate what I need to do, let alone draft a response. If any member would care to draft a response I'd be happy to work on getting it approved by the board; if any member is interested please contact me via conversation.
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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Buried in my email somewhere, I've been focused on sorting out our technical foundations to ensure that PR forums continue to exist.

I'd love for us to comment on this, I know it's important, but haven't had time to investigate what I need to do, let alone draft a response. If any member would care to draft a response I'd be happy to work on getting it approved by the board; if any member is interested please contact me via conversation.

Thank you Mark. I have reposted key points, below, for ease of access.

If anyone will be taking a response forward, on behalf of Phoenix Rising, please let me know via PM or via email (my email address is at the top of Page 2 of the PDF for the full proposal) should any assistance be required regarding the registration process or if you have any technical queries relating to the revision of ICD-10 and development of ICD-11. Email is preferable.

(Note this proposal relates to the revision of the WHO's ICD-10, not the national modifications that are used in the U.S. [ICD-10-CM], Canada [ICD-10-CA], Germany [ICD-10-GM] and Australia [ICD-10-AM]. These countries will at some point in the future be adapting ICD-11 for country specific use, so the content of ICD-11 has relevance for these countries, too.)


Here are the key points for our formal Proposal and Rationale (submitted on March 27).

Our proposal recommends:

  • that the three G93.3 "legacy" terms should be retained in the ICD-11 neurological chapter (Chapter 08: Diseases of the nervous system);
  • that the terms should be retained under the parent class: Other disorders of the nervous system;
  • that PVFS is not an appropriate "concept title" term for ME to sit under (as not all cases of ME are preceded by a virus) and that the PVFS term should be deprecated to the Synonyms list.
  • that ME and CFS should both be "concept titles" and assigned to separate codes;
We’ve also recommended:
  • reciprocal exclusions for “Bodily distress disorder” and for Fatigue (was Malaise and fatigue in ICD-10);
  • that the designation “Benign” should be deprecated for ICD-11.

We've put a copy of the full Proposal, Notes and Rationale into a PDF here: http://bit.ly/2mQxWTS

Our proposed restructure looks like this:



Key links:

In order to comment on our proposal, you will first need to register and create an account with the Beta draft. Or you can register using an existing social media account (Yahoo, Google, LinkedIn, Facebook or MS).

The ICD-11 Registration page is here: http://bit.ly/ICD11Registrationpage

There is a short "How to Register" Tutorial here: http://bit.ly/ICD11regtutorial


Once registered and logged in:


To view, "Agree" or Comment on our proposal go straight to this page: http://bit.ly/commentICD11

The "Agree" button is located directly beneath the blue clickable Reference links at the end of the Rationale for our Proposal:




To post a comment:


If you are commenting on behalf of an organization, please state the organization’s name and in what capacity.

The Comment box for our proposal is located right at the bottom of the web page beneath the most recent comment.


Additional materials:

Summary post on proposal:
http://bit.ly/ICD11proposal

PDF of full proposal and rationale:
http://bit.ly/2mQxWTS

I have also prepared a Q & A document in PDF format:


Q & A version 1, April 2017: http://bit.ly/Proposal111QA


There is a one page Key points on current ICD-11 Beta status for the G93.3 legacy terms, here:
http://bit.ly/2oD51DA
 
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Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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A Western Australia organization has supported this morning.

The committee of ME/CFS and Lyme Association of WA, Inc. (formerly ME/CFS Society of WA, Inc.) agree with and support the proposal submitted by Suzy Chapman and Mary Dimmock, and thank them for their work.

ME/CFS and Lyme Association of WA Committee 2017-Apr-21 - 07:25 UTC
 
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Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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Joint response from the Countess of Mar's Forward-ME group:

(ME Association, ME Research UK, Action for M.E., Tymes Trust, reMEmber CFS, Blue Ribbon Awareness of ME (BRAME), ME Trust, the 25% ME Group, and Invest in ME)


http://apps.who.int/classifications...lGroupId=4b26ab6a-393f-4a39-9051-4ac1d4b1a55a

Forward-ME is a group of UK charities and voluntary organisations convened by the Countess of Mar, in order to promote effective joint working by M.E. and CFS organisations.

The organisations are ME Association, ME Research UK, Action for M.E., Tymes Trust, reMEmber CFS, Blue Ribbon Awareness of ME (BRAME), ME Trust, the 25% ME Group, and Invest in ME.

We are in agreement that, as proposed here, it is particularly important for Myalgic encephalomyelitis (M.E.) and Postviral fatigue syndrome - presently classified in the Chapter on Diseases of the nervous system [at G93.3] – to be retained in that chapter of the forthcoming ICD-11.

Along with commending the proposal’s intention to highlight and reinforce the severe and devastating impact of M.E., we would like to draw attention to the body of scientific material referred to in the rationale for the proposal [Rationale point 1: Scientific evidence that exists for neurological dysfunction; Rationale point 2: Recent federal agency reviews and scientific evidence].

This reflects growing evidence of neurological, immunological and endocrinological dysfunction and related biomarkers. However, we agree that current scientific evidence of neurological impairment and WHO/ICD Revision's position on precedence [i.e. “legacy should trump with regard to the question of moving certain conditions to new chapters”] supports retention of chronic fatigue syndrome and myalgic encephalomyelitis in Diseases of the nervous system.

We support the proposal to move Postviral fatigue syndrome to a synonym under the Concept Title ‘Myalgic encephalomyelitis’. This recognises that not all instances of M.E. may result from a viral infection. We also agree with the proposed removal of the word ‘benign’ from the M.E. title, in keeping with the considerable medical complexity of this condition and its severe and lasting impact on patients.

The position in respect of ‘Chronic fatigue syndrome’ (CFS) is more complex:

· CFS is listed in the WHO ICD-10 index only.

· It is indexed to G93.3. Yet in practice the label ‘CFS’ is applied variably - both in research (with a multiplicity of definitions in use) and clinically.

Given the placement of ‘Fatigue syndrome’ in the WHO ICD-10 Mental and behavioural chapter [as a synonym under ‘Neurasthenia’ at F48.0], it was all but inevitable that the introduction of the term ‘Chronic fatigue syndrome’ to apply to a physical illness would cause confusion.

The confusion has a considerable impact on patients. For example, we are aware that some patients are being referred to services for ‘medically unexplained symptoms’, under the mistaken assumption that M.E. is a ‘functional somatic syndrome’. Indeed, the Joint Commissioning Panel for Mental Health (England) has recently published guidance stating that ‘Chronic Fatigue Syndrome/Myalgic Encephalomyelitis’ is a ‘functional somatic syndrome’ [Guidance for commissioners of services for people with medically unexplained symptoms 2017].

As the evidence gathered by this proposal so clearly demonstrates, this illness is a "serious, chronic, complex, and multisystem disease" that causes significant impairment - including neurological, cognitive, immunological, autonomic and energy metabolism disorder. We consider that it is vital that the WHO ICD continues to provide a bulwark against medical mismanagement of M.E. patients.

In this regard securing appropriate exclusions is vital, and we endorse the proposal’s recommendations, as set out at Note 4. In particular, we note that the ICD revision intends that the F48.0 Neurasthenia category [where ‘Fatigue syndrome’ presently appears], together with almost all of the present F45 somatoform disorder categories, be subsumed in a single new category - currently suggested name ‘Bodily distress disorder'. We agree that there needs to be reciprocal exclusions for M.E. and for CFS for the ‘Bodily distress disorder’ category.

We also agree that reciprocal exclusions for M.E. and for CFS for the category ‘Fatigue’ [previously ‘Malaise and fatigue’] are essential.

Forward ME 2017-Apr-21 - 14:01 UTC

--------------------

A PDF of Forward-ME's response (with key links on the second page) can be downloaded here:

https://dxrevisionwatch.files.wordpress.com/2017/04/forward-me1.pdf
 
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Dx Revision Watch

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http://www.meassociation.org.uk/201...t-medical-mismanagement-of-m-e-21-april-2017/

Forward-ME Group | ‘Vital that the new WHO classification continues to provide a bulwark against medical mismanagement of M.E.’ | 21 April 2017


The Forward ME-Group has responded to the latest proposals to update the classification of M.E. and CFS in the World Health Organisation’s next version of the International Classification of Diseases (ICD-11). Implicit in their comments below is recognition of the huge amount of work put in on this project by ME/CFS advocates Suzy Chapman and Mary Dimmock.

THE FORWARD-ME GROUP STATEMENT BEGINS HERE

Forward-ME is a group of UK charities and voluntary organisations convened by the Countess of Mar, in order to promote effective joint working by M.E. and CFS organisations.

The organisations are ME Association, ME Research UK, Action for M.E., Tymes Trust, reMEmber CFS, Blue Ribbon Awareness of ME (BRAME), ME Trust, the 25% ME Group, and Invest in ME.

We are in agreement that, as proposed here, it is particularly important for Myalgic encephalomyelitis (M.E.) and Postviral fatigue syndrome – presently classified in the Chapter on Diseases of the nervous system [at G93.3] – to be retained in that chapter of the forthcoming ICD-11.

Along with commending the proposal’s intention to highlight and reinforce the severe and devastating impact of M.E., we would like to draw attention to the body of scientific material referred to in the rationale for the proposal [Rationale point 1: Scientific evidence that exists for neurological dysfunction; Rationale point 2: Recent federal agency reviews and scientific evidence].

This reflects growing evidence of neurological, immunological and endocrinological dysfunction and related biomarkers. However, we agree that current scientific evidence of neurological impairment and WHO/ICD Revision’s position on precedence [i.e. “legacy should trump with regard to the question of moving certain conditions to new chapters”] supports retention of chronic fatigue syndrome and myalgic encephalomyelitis in Diseases of the nervous system.

We support the proposal to move Postviral fatigue syndrome to a synonym under the Concept Title ‘Myalgic encephalomyelitis’. This recognises that not all instances of M.E. may result from a viral infection. We also agree with the proposed removal of the word ‘benign’ from the M.E. title, in keeping with the considerable medical complexity of this condition and its severe and lasting impact on patients.

The position in respect of ‘Chronic fatigue syndrome’ (CFS) is more complex:

· CFS is listed in the WHO ICD-10 index only.

· It is indexed to G93.3. Yet in practice the label ‘CFS’ is applied variably – both in research (with a multiplicity of definitions in use) and clinically.

Given the placement of ‘Fatigue syndrome’ in the WHO ICD-10 Mental and behavioural chapter [as a synonym under ‘Neurasthenia’ at F48.0], it was all but inevitable that the introduction of the term ‘Chronic fatigue syndrome’ to apply to a physical illness would cause confusion.

The confusion has a considerable impact on patients. For example, we are aware that some patients are being referred to services for ‘medically unexplained symptoms’, under the mistaken assumption that M.E. is a ‘functional somatic syndrome’. Indeed, the Joint Commissioning Panel for Mental Health (England) has recently published guidance stating that ‘Chronic Fatigue Syndrome/Myalgic Encephalomyelitis’ is a ‘functional somatic syndrome’ [Guidance for commissioners of services for people with medically unexplained symptoms 2017].

As the evidence gathered by this proposal so clearly demonstrates, this illness is a “serious, chronic, complex, and multisystem disease” that causes significant impairment – including neurological, cognitive, immunological, autonomic and energy metabolism disorder. We consider that it is vital that the WHO ICD continues to provide a bulwark against medical mismanagement of M.E. patients.

In this regard securing appropriate exclusions is vital, and we endorse the proposal’s recommendations, as set out at Note 4. In particular, we note that the ICD revision intends that the F48.0 Neurasthenia category [where ‘Fatigue syndrome’ presently appears], together with almost all of the present F45 somatoform disorder categories, be subsumed in a single new category – currently suggested name ‘Bodily distress disorder’. We agree that there needs to be reciprocal exclusions for M.E. and for CFS for the ‘Bodily distress disorder’ category.

We also agree that reciprocal exclusions for M.E. and for CFS for the category ‘Fatigue’ [previously ‘Malaise and fatigue’] are essential.

[Ends]
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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The Massachusetts CFIDS/ME & FM Association has supported our proposal:

The Massachusetts CFIDS/ME & FM Association, representing an estimated 20,000 to 50,000 patients in the state of Massachusetts, US, approves this proposal. Thanks to Mary Dimmock and Suzy Chapman for their thorough revision and documentation. The term "benign myalgic encephalomyelitis" needs to be changed to "myalgic encephalomyelitis" as the disease is NOT benign. The term "postviral fatigue syndrome" should not be a lead term as many cases are triggered by nonviral agents. Most important, reciprocal exclusions should be added between the proposed lead terms and fatigue and also between these terms and bodily distress disorder. And these terms should not be classified or dual parented in either the symptoms chapter or the mental health chapter of ICD-11.

Leah Williams, Treasurer, on behalf of the Board of Directors

Leah Williams 2017-Apr-22 - 14:18 UTC
 
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Dx Revision Watch

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Action for M.E. article on proposal:

https://www.actionforme.org.uk/news...to-continue-being-classified-as-neurological/

M.E. must continue to be classified as neurological

April 24, 2017

Action for M.E. has collaborated with other Forward M.E. charities to strongly support the call for M.E. to continue being classified as a neurological condition by the World Health Organisation (WHO).

In the WHO’s current (10th) edition of the International Classification of Diseases (ICD-10), postviral fatigue syndrome, benign myalgic encephalomyelitis and chronic fatigue syndrome are classified as neurological.

Following uncertainty from the WHO about where these conditions might be listed in the next classification (ICD-11), which is currently being drafted, UK and US advocates Suzy Chapman and Mary Dimmock have prepared a detailed proposal recommending:
  • keeping the titles of M.E., Chronic Fatigue Syndrome (CFS) and Postviral Fatigue Syndrome in the chapter ‘Diseases of the nervous system’
  • having separate entries for M.E. and for CFS
  • referring to M.E. as ‘Myalgic encephalomyelitis,’ where previously it had been called ‘Benign myalgic encephalomyelitis.’
You can read about this in more detail on Suzy’s dx revision website.

Having been contacted by Suzy and Mary, we have worked with other Forward M.E. charities to prepare a statement that supports their proposal, and jointly submitted it to the WHO as Forward M.E., supported by the group’s Chair, the Countess of Mar.

As part of the statement, we say: “We are aware that some patients are being referred to services for ‘medically unexplained symptoms’, under the mistaken assumption that M.E. is a ‘functional somatic syndrome.’ Indeed, the Joint Commissioning Panel for Mental Health (England) has recently published guidance stating that ‘Chronic Fatigue Syndrome/Myalgic Encephalomyelitis’ is a ‘functional somatic syndrome.’

“As the evidence gathered by this proposal so clearly demonstrates, this illness is a ‘serious, chronic, complex, and multisystem disease’ that causes significant impairment - including neurological, cognitive, immunological, autonomic and energy metabolism disorder. We consider that it is vital that the WHO ICD continues to provide a bulwark against medical mismanagement of M.E. patients.”

Forward M.E.’s full statement can be accessed online. If you register for an account, the proposal and statement can also be found in full on the ICD-11 forum.

What is the ICD-11?

Published by the World Health Organisation, the International Classification of Diseases is a system of diagnostic codes for classifying diseases, designed to map health conditions, and their specific variations, to larger and more general categories. Currently in its tenth revision (ICD-10, published in 1992), it is subject to minor annual updates and major triennial updates. ICD-11 was planned for 2017, but has been pushed back to 2018.

What are “medically unexplained symptoms”?

In February, the Joint Commissioning Panel for Mental Health published guidance for mental health commissioners, stating that M.E. is a functional somatic syndrome, and recommends a referral to services for patients with Medically Unexplained Symptoms (MUS).

Action for M.E. absolutely does not support this recommendation, and we are extremely concerned by the impact that we are beginning to see on people with M.E.

Some of you have got in touch to tell us that you are being challenged by your healthcare professional as to the validity of your M.E. diagnosis, and instead being told that you have MUS.

If this experience is familiar to you, or you are concerned by the definition of M.E. used by your healthcare professional, please contact us (p 2).

We would advise anyone faced with this to make it clear that:

  • M.E. is not MUS, and categorising it as such contradicts the World Health Organisation’s International Classification of Diseases, which states that M.E. is a neurological condition.
  • the NICE guideline makes it clear that specialist services for M.E. are likely to be needed by a significant number of people with the condition; it is likely that the approach offered by MUS services would be inappropriate in many cases
  • a considerable body of published, peer-reviewed evidence, as comprehensively referenced by the 2015 Institute of Medicine report, indicates growing evidence of potential neurological, immunological and endocrinological biomarkers in M.E. The report concluded (p 209) that: “It is clear from the evidence compiled by the committee that M.E./CFS is a serious, chronic, complex, multisystem disease that frequently and dramatically limits the activities of affected patients.”
Action for M.E. is undertaking work to highlight this to health professionals and policy-makers, and can offer information and support to anyone being referred to services they feel are inappropriate.