The Countess of Mar, who was at the meeting of the All Party Parliamentary Group on ME at Westminster yesterday, has taken two important parliamentary initiatives in the House of Lords in relation to issues that were discussed at the meeting.
1: REGULATIONS TO CHANGE WORKING CAPABILITY ASSESSMENT (WCA) DESCRIPTORS
The first involves changes to the ESA Working Capability Assessment (WCA) descriptors that were announced last week in a Statutory Instrument and were due to come into force on 28th March.
The Countess of Mar tabled a motion on Monday 14 February relating to delegated legislation. Her motion called for the ESA legislation to be annulled:
Employment and Support Allowance (Limited Capability for Work and Limited Capability for Work-Related Activity) (Amendment) Regulations 2011
The Countess of Mar to move that a Humble Address be presented to Her Majesty praying that the Regulations, laid before the House on 10 February, be annulled. (SI 2011/228).
The DWP suddenly withdrew the regulations on Monday 14th February for reasons that are not yet clear. The Countess of Mar's motion has therefore been removed as it is no longer required.
More information on the original DWP announcement, which was made last week, along with MEA reaction, can be found here: https://meassociation.org.uk/?p=4534
The MEA is currently trying to obtain a statement from the DWP Press Office on this decision and will add this information when it appears.
2: WHO CLASSIFICATION OF ME and CFS
The second parliamentary initiative involves a statement on WHO classification of ME/CFS that was made by Minister for Health Care Services Paul Burstow during the House of Commons Adjournment Debate on 2 February.
This is in the form of a question for a written answer due before 1 March:
The Countess of Mar to ask Her Majestys' Government, further to the statement by the Minister of State for Health, Paul Burstow, on 2 February (HC Deb, col 327) that the World Health Organisation (WHO) described myalgic encephalomyelitis (ME) as Chronic Fatigue Syndrome/myalgic encephalomyelitis (CFS/ME) and that this was the convention followed by the Department, in light of the fact that the WHO International Classification of Diseases 10 lists ME as a neurological disease with post viral fatigue syndrome (PVFS) under G93.3 and CFS as a mental health condition under F48.0 and that the latter specifically excludes PVFS, whether they will adhere to that classification. HL7080
We understand that the Minister is now going to make a further statement on WHO classification of ME, CFS and PVFS.
More information on the Private Member's Debate can be found here: https://meassociation.org.uk/?p=4264
Dr Charles Shepherd
Hon Medical Adviser, The ME Association
17 February 2011
Errr… call me dumn if you like, but what does this mean?
That the relapsing and remitting nature of my illness will not now be taken into account by the DWP?
That Mr Burstow is admitting he made a mistake and that it was NICE who persisted with this label and not the WHO?
Sorry, rough few days 🙂
Hi Firestormm,
I had to admit it took me a few reads, especially the last part.
From what I can gather, this is good news as they are proposing to finally separate out ME/PVFS and CFS. However, it’s potentially worrying for those who have been misdiagnosed with CFS and are actually suffering from ME/PVFS.
Interesting times.
ME, PVFS and CFS are all indexed to G93.3. It is those with idopathic chronic fatigue and fatigue of a psychological origin, which the PACE Trial looked at, that should be separated out!
No I don’t think it does mean that Dan.
Perhaps Dr Shepherd or Tony can summarise for us?
I understood that the meetings with Prof Harrington were to result in some fairer assessment process for those with CFS/ME.
The bit about Mr Burstow is semantics I believe – he made a mistake and is going to correct it.
But I could be wrong, and most likely am 🙁
Written reply and correction from Paul Burstow:
http://www.theyworkforyou.com/wrans/?id=2011-02-16a.41259.h&s=cfs
Unfortunately, a written correction doesn’t have the same impact as his original forcefully delivered misleading statement.
He should have been compelled to make an equally forceful correction to the Committee in person and humbly apologised for getting it so utterly wrong.
Will he now realise that this same definition issue, is (in part) why the PACE trial is flawed and hence worthless.
Is Paul Burstow hoping that the WHO is going to swing it for them?
The MRC and NICE are all breaching the WHO classification system by not separating those with a neurological disease (ME, PVFS and CFS) from those with idopathic chronic fatigue and fatigue of a psychological origin.
The statement:
“in light of the fact that the WHO International Classification of Diseases 10 lists ME as a neurological disease with post viral fatigue syndrome (PVFS) under G93.3 and CFS as a mental health condition under F48.0 and that the latter specifically excludes PVFS, whether they will adhere to that classification. HL7080”
The statement above is NOT correct.
In ICD-10, Chronic fatigue syndrome does not appear in Volume 1: The Tabular List, in any chapter.
It is indexed, in Volume 3: The Alphabetical Index, where it is coded to G93.3.
Please see this post:
http://dsm5watch.wordpress.com/icd-11-me-cfs/
[…]
The indexing of Chronic fatigue syndrome
In ICD-10 “Chronic fatigue syndrome” is not included in Volume 1: The Tabular List.
“Chronic fatigue syndrome” is included in Volume 3: The Alphabetical Index and is indexed at G93.3 (the same coding as for Postviral fatigue syndrome and Benign myalgic encephalomyelitis).
This is how it is listed in the Index:
Syndrome – continued
[…]
– fatigue F48.0
– – chronic G93.3
– – – postviral G93.3
Scanned images of the listing in the Volume 3: The Alphabetical Index can be seen here:
http://www.meactionuk.org.uk/G93-3-ICD-10-index.jpg (whole page)
http://www.meactionuk.org.uk/G93-3-ICD-10-index-closeup.jpg (close up)
This is from ICD-10 Volume 1: The Tabular List, Chapter V:
http://www.who.int/classifications/apps/icd/icd10online/?gf40.htm+f480
Chapter V
Mental and behavioural disorders
(F00-F99)
Neurotic, stress-related and somatoform disorders
(F40-F48)
[…]
F45 Somatoform disorders
F45.0 Somatization disorder
F45.1 Undifferentiated somatoform disorder
F45.8 Other somatoform disorders
F45.9 Somatoform disorder, unspecified
Psychosomatic disorder NOS
F48 Other neurotic disorders
F48.0 Neurasthenia [Ed: Lengthy textual description of symptoms for neurasthenia omitted]
Fatigue syndrome
Use additional code, if desired, to identify previous physical illness.
Excludes: asthenia NOS ( R53 )
burn-out ( Z73.0 )
malaise and fatigue ( R53 )
postviral fatigue syndrome ( G93.3 )
psychasthenia ( F48.8 )
———-
In ICD-11, currently under development, which is scheduled to replace ICD10 in 2015+, Chronic fatigue syndrome is proposed to be classified in Chapter 6: Diseases of the nervous system.
In late October, I made a number of screenshots of key pages from the iCAT authoring platform for Chapter 5 and Chapter 6 and have published these on my website.
In early November, the iCAT was taken out of the public domain. A Beta Draft for ICD-11 isn’t scheduled until May, this year, but it may be delayed as ICD Revision reported, last October, that their targets for generation of textual content were slipping.
From what could be seen in the iCAT, it appears that CFS is proposed to be coded in Chapter 6: Diseases of the Nervous System and that (B)ME is specified as an Inclusion term to CFS.
It isn’t possible to determine yet how CFS will relate to (B)ME, that is, whether (B)ME is proposed to be specified as a Synonym for CFS, a Subclass, or other relationship term.
But the crucial point is that all three terms are included in Chapter 6 and moreover, PVFS G93.3 –> Gj92 CFS is specified as an Exclusion to the R codes (Chapter 18 in ICD-11) and as an Exclusion to the Mental Health F codes (Chapter 5 in ICD-11), as the iCAT stood at November 2010.
Both the Canadian “Clinical Modification” of ICD-10, known as ICD-10-CA, and the German “Clinical Modification” of ICD-10, known as ICD-10-GM, have all three terms at G93.3, in The Tabular list.
This can be seen, in these slides:
http://wp.me/pKrrB-V4
——-
To repeat, it is NOT the case that “Chronic fatigue syndrome” is classified in the F codes, in ICD-10 Chapter V.
Or that CFS is proposed to be coded in Chapter V (5) in ICD-11.
——-
For screenshots from the ICD-11 iCAT drafting platform see this post on my site:
VFS, ME, CFS: the ICD-11 Alpha Draft and iCAT Collaborative Authoring Platform
Shortlink Post #46: http://wp.me/pKrrB-KK
When viewing these images, note that “Gj92” is a “Sorting label” and not an ICD-11 code for Chronic fatigue syndrome.
From what I can gather, this is good news as they are proposing to finally separate out ME/PVFS and CFS.
Classification is not diagnosis. There is no diagnostic criteria attached to the WHO classification. Further, Parliament can not decide clinical issues such as diagnostic criteria.
IVI
IVI wrote:
“From what I can gather, this is good news as they are proposing to finally separate out ME/PVFS and CFS.”
No, this is not the case. Mr Swales has misinterpreted the content of the response he had received from Health Minister, Paul Burstow. Mr Swales has since amended his website report.
IVI wrote:
“Classification is not diagnosis. There is no diagnostic criteria attached to the WHO classification. Further, Parliament can not decide clinical issues such as diagnostic criteria.”
It is the case that there is no diagnostic criteria attached to the classification in ICD-10.
But I have been providing information around proposals for the forthcoming ICD-11, scheduled for publication in 2014/15.
In ICD-11, ICD entities will be described according to a “Content Model” consisting of 13 parameters:
The 13 Parameters through which an ICD-11 category can be described are:
1. ICD Entity Title; 2. Classification Properties; 3. Textual Definition(s); 4. Terms; 5. Body Structure Description; 6. Temporal Properties; 7. Severity Properties; 8. Manifestation Properties; 9. Causal Properties; 10. Functioning Properties; 11. Specific Condition Properties; 12. Treatment Properties; 13. Diagnostic Criteria.
———–
But if you are in the US, IVI, as you will no doubt be aware, the US will be implementing a Clinical Modification of ICD-10 in October 2013 and the US won’t be moving onto ICD-11 (or a Clinical Modification of ICD-11) for many years.
The CDC’s Donna Pickett confirmed a few weeks ago that clinical criteria and diagnostic guidelines are not included in ICD-10-CM.
[For UK readers: please note that the classifications and codings proposed for ICD-10-CM, which proposes to retain Chronic fatigue syndrome in the R code chapter (Chapter 18 in ICD-10-CM) under R53 Malaise and fatigue > R53.82 Chronic fatigue syndrome NOS, but to code PVFS and (B)ME under G93.3, in Chapter 6, applies only to the US specific modification, ICD-10-CM, not to the existing international ICD-10, nor to proposals for the international ICD-11.]
UPDATES
WCA descriptor changes: I have now spoken to the DWP in order to try and find out more about the decision to suddenly withdraw the ESA regulations on Monday. It sounds as though there was some sort of administrative problem. The bad news is that the unhelpful changes to the WCA point-scoring process have now been re-instated and will in theory come into force on 28 March. I am discussing with the Countess of Mar what action should now be taken to try and get this annulled.
WHO Classification: MEAgenda is correct. In very simple terms ME and PVFS are classified as neurological in ICD10 G93:3. CFS does not have a classification of its own but is indexed to ME and PVFS in G93:3. I will speak to the Countess of Mar about this. The statement from the Minister does not mean that the DoH are about to separate ME from CFS. This could only be done if/when it is concluded that ME is a distinct pathological entity. As it is, ME has a different clinical definition to CFS (that is not really disputed) but almost all the pathological abnormalities in the research literature have been described in people with research defined CFS.
Incidentally, the PACE trial results will be released on Friday and the MEA has just been sending out our rapid response press statement to the health editors. This will be published on the website later today.
Dr Charles Shepherd
Hon Medical Adviser, MEA
So, it appears that the DWP recognised the threat posed to their mean-minded scheme by the Countess of Mar’s efforts and withdrew their bill.
They then almost imediately reinstate it and we’re back to square one.
Is nobody at the Dept. of Work & Pensions capable of being upfront, straightforward and honest with us?
It certainly doesn’t look like they can.
The PACE Trial cannot be about ME, PVFS or CFS, as it excludes those with neurological signs.
Dr Charles Shepherd writes:
“WHO Classification: MEAgenda is correct. In very simple terms ME and PVFS are classified as neurological in ICD10 G93:3. CFS does not have a classification of its own but is indexed to ME and PVFS in G93:3. I will speak to the Countess of Mar about this.”
Thank you for picking up on this.
Suzy
Further update:
The motion to annul is now back on the House of Lords order paper – thanks to Lord Kirkwood.
Motions related to delegated legislation:
Employment and Support Allowance (Limited Capability for Work and Limited Capability for Work-Related Activity) (Amendment) Regulations 2011 Lord Kirkwood of Kirkhope to move that a Humble Address be presented to Her Majesty praying that the Regulations, laid before the House on 10 February, be annulled. (SI 2011/22)
CS
Can you please clarify the current classification for CFS as recently an official NHS webpage classed CFS as Neurological disorder as shown.
http://www.nhs.uk/news/2010/12December/Pages/vulnerable-urged-to-take-swine-flu-vaccine.aspx
Vision,
I picked up on that one too. First I heard ‘we’ were classified as a ‘chronic neurological disease’ and at risk for swine flu.
I did bring this to the attention of some better placed than me to determine if it meant anything, I thought it significant, but apparently not.
Still, I believe it means that the NHS have to put up or shut up. I got a free vaccine. I was ‘at risk’. Incidentally, I had no side-effects.
If I have to discover this way that I am ‘at risk’, then what does that say about the system?
Same applies about my illness. Until I saw this article, I had no idea that was how ‘they’ not consider CFS to actually be classified.
So much for all this chasing around the WHO and other ‘descriptors’. Surely this article alone answers all the questions? At least from a sufferers perspective?
Let them argue with their own press releases.
“I did bring this to the attention of some better placed than me to determine if it meant anything, I thought it significant, but apparently not.”
I consider it very significant.
If anyone in the nhs tries to tell me “its all in your head” or dismiss the symptoms they’ll get told straight!!
Bit confused here on the nonclemature of our illness in relation to the above news: it seems to me whether we have M.E or CFS is dependent on the title our GP gives us or even the local PCT ME clinic, I am diagnosed by my GP with CFS, but I know more about M.E than he does and always insist that I have ME and my numerous and severe symptoms would confirm that. Should I talk to my GP about renaming my condition?
though the new Pace ‘evidence’ may make things harder…
Hi DT,
The MEA booklet about Clinical Assessment is proving a godsend to me in this regard and in others too.
It might help you to better understand the reasons behind why you and I are labelled with CFS and not ME.
In the USA there is no choice it is CFS all the way, though the criteria for diagnosis are different.
And that it seems is the key point. It has nothing to do with being able to prove through testing (as there is currently none offered), that you or I or anyone else has an illness defined (loosely) as ME.
It is about how comfortable some GP’s are with the label and what it means without said tests.
Personally, I couldn’t give a monkeys. I would rather focus on other issues and direct my energy there.
But these are valid concerns and criticisms. Shame that it prompted Mr Burstow to dwell on divisions within the ‘community’ rather too much, and not on what the debate was really meant to be about.
It kind of gave him a convenient ‘out’. 🙂
With regard to the WCA, there is already sufficient guidance, supported by Tribunal Case law, as to how to interpret the results for fluctuating conditions.
The problem is that the medical exmainers and the Decision Makers almost universally ignore them, is this likely to change just because another piece of paper has been issued.
I disagree – very strongly!
A major part of the problem is that the wording of the descriptors (ie the point scoring system) in the WCA does not deal with the problems faced by people with fluctuating medical conditions.
Professor Harrington, and the DWP, have both accepted this fact – which is why I am part of a group that is producing recommendations on the revision these WCA descriptors.
We also need WCA descriptors that cover problems such as fatigue and pain.
This is not going to be a useless piece of paper.