New category proposal for DSM-5: “Simple Somatic Symptom Disorder”

New category proposal for DSM-5: “Simple Somatic Symptom Disorder”

Shortlink: http://wp.me/p5foE-3gz

The most recent proposals of the DSM-5 “Somatic Symptoms Disorders” Work Group plus two key Disorder Description and Rationale PDF documents can be read on the APA’s DSM-5 Development site here:

http://www.dsm5.org/ProposedRevisions/Pages/SomatoformDisorders.aspx

The two key Somatic Symptoms Disorders Work Group Draft Proposal documents:

  Descriptions document version 1/14/11  Revised Disorder Descriptions: Version 1/14/11

    Revised Justification of Criteria Version 1/31/11

On 16 January, I reported on my Dx RevisionWatch site that the page for current DSM-5 proposals for the revision of the DSM-IV categories and diagnostic criteria for “Somatoform Disorders” had been updated on 14 January, with a new category proposal calledSimple Somatic Symptom Disorder”.

This proposal is in addition to the recommendations of the Somatic Symptom Disorders Work Group, published in February 2010, for grouping a number of existing Somatoform categories under a common rubric “Complex Somatic Symptom Disorder (CSSD)” and does not replace “CSSD”.

For full details see Dx Revision Watch Post #56: http://wp.me/pKrrB-St

[Information superceded by second and third DSM-5 draft.]

Update @ 7 February 2011

The Justification of Criteria document has now been revised by the SSD Work Group to incorporate the new proposal for SSSD and some further revisions, and is replaced by a document designated DRAFT 1/31/11.

I shall be monitoring the DSM-5 Development website and if there are any further revisions to either document before the DSM-5 beta is published I will update this site.

Two key Somatic Symptoms Disorders Work Group Draft Proposal documents:

    Revised Justification of Criteria Version 1/31/11

  Descriptions document version 1/14/11 Revised Disorder Descriptions: Version 1/14/11

According to the APA’s DSM-5 Development Timeline, beta draft proposals are scheduled to be published by the DSM-5 Task Force in May-June, with a public review period of only around a month. The public review and comment period for the first draft, last year, had been around ten weeks.

The following patient organisations have been alerted to these revisions and sent copies of the key documents:

UK patient organisations:

Heather Walker, Action for M.E.
Neil Riley, Chair, Board of Trustees, ME Association
25% ME Group
Invest in ME
Jane Colby, The Young ME Sufferers Trust

US patient organisations and professionals:

Dr Alan Gurwitt, Massachusetts Chronic Fatigue and Immune Dysfunction Syndrome/Myalgic Encephalopathy and Fibromyalgia Association (Mass. CFIDS/ME & FM)
Dr Kenneth Friedman, IACFS/ME
Jennie Spotila, CFIDS Association of America
Dr Lenny Jason

International patient organisations and professionals:

ESME (European Society for ME)
Dr Eleanor Stein, Canada

Transcript: BBC Radio Berkshire, Anne Diamond, ME/CFS: Shepherd, Findley, Parker

Transcript of BBC Radio Berkshire Anne Diamond Show, broadcast 11 November 2010

Shortlink: http://wp.me/p5foE-3dG

On 11 November, Radio Berkshire presenter, Anne Diamond, interviewed Dr Charles Shepherd, Medical Adviser for the ME Association and Professor Leslie Findley, Clinical Director of the National ME Centre and Centre for Fatigue Syndromes. Towards the end of the item, Duncan McLarty spoke to Phil Parker, founder of the Lightning Process.

See also previous post: http://wp.me/p5foE-3dk

Within the UK, until 18 November, you can “Listen again” to the Radio Berkshire broadcast here on BBC iPlayer. The item starts 2 hours 3 mins in from the start of programme and is around 12 minutes long.

Or listen on YouTube here: http://www.youtube.com/watch?v=9YX3wFkDlhI

This transcript has been prepared by Suzy Chapman for ME agenda. Care has been taken in the preparation and proofreading of this transcript; some errors and omissions may remain.

The Anne Diamond Show, Thursday, 11 November 2010:

Anne Diamond: Last week on the show while Esther Rantzen was standing in, we looked at the subject of ME because people diagnosed with the condition are no longer able to give blood. Now we’ve had a huge response from people with experience of the condition and because this is such a controversial area we thought it might be a good idea to get some experts on to the show to deal with some of the points that have been raised.

Dr Charles Shepherd is Medical Adviser to the ME Association and Professor Leslie Findley is Clinical Director of the National ME Centre and the Centre for Fatigue Syndromes. I spoke to them both, earlier, and I asked Charles Shepherd just what is ME and are we any closer to knowing what causes it?

Dr Charles Shepherd: Well ME stands for “Myalgic Encephalomyelitis” and in very simple terms it’s an illness which often starts with a viral infection and people then have a range of symptoms, primarily muscle symptoms, muscle fatigue and also brain symptoms, problems with memory, concentration, balance, just generally feeling unwell. And these systems – I mean these symptoms – persist for a long period of time in many of these patients; it is a very disabling and has been recognised as a neurological illness.

Anne Diamond: Yes. Professor Findley, to be absolutely clear, nowadays there’s no longer any suggestion that it’s a psychological condition, is there?

Prof Findley: Erm, no, there’s no suggestion it’s a psychological condition but psychological factors can adversely influence the symptoms and they have to be taken into account when one’s planning a total management strategy for an individual patient.

Anne Diamond: Would you agree with that, Dr Shepherd, that nowadays we don’t look upon it as a psychological condition?

Dr Charles Shepherd: Well, I thoroughly agree, you know, the Department of Health, the World Health Organisation, classifies this as a neurological illness and you know, like with many chronic disabling illnesses, psychological factors, social factors, can sometimes play a role, that’s not disputed. But it is essentially a neurological illness with other factors involved.

Anne Diamond: Now you see, since Esther was talking about this last week we’ve had an email, for instance, which says that all the research and treatment funding then has inappropriately gone to the psychiatric profession since the 1980s. What do you say to that, both of you?

Dr Charles Shepherd: Well, to a certain extent well that is true. Certainly in the UK, the vast amount of government funded research has gone in to behavioural and psychological therapies and there has been a great deal of criticism about that. Fortunately, what we now have is the Medical Research Council [MRC] setting up an expert group which I am a member of, to look into research in this illness and we have been for the past two years looking at what needs to be done in the way of biomedical research and a list of priorities in biomedical research has now been sent to the board of the MRC – they are looking at these priorities and we are expecting an announcement very shortly on this.

Anne Diamond: Professor Findley, is it true then that we’ve been wasting money – directing the money towards the psychiatric profession?

Professor Findley: We….ell! Waste is a very, is a very strong word to use. The money, I agree with Charles, could have been used perhaps more wisely, but this is a complex illness and it represents, and the MRC would state this, that it represents a group of disorders, it is not a single entity and we’re still having great trouble defining within this large group of patients the individual types of Chronic Fatigue Syndrome/ME that exist and if one takes a group of patients the symptom complex that the individuals complain of vary enormously…

Anne Diamond: And yet…?

Professor Findley: …and the NICE Guidelines recognise complex and severe Chronic Fatigue Syndrome/ME to emphasise the complexity of this, this, this illness, it is not a simple entity it’s not like some tuberculosis where you have a defined marker and a defined organism and a defined treatment.

Anne Diamond: So and Dr Shepherd, you would agree that this a range of different conditions?

Dr Charles Shepherd: Yes, and I mean this is another key point, that we have renamed and redefined this illness from ME into what’s now called “Chronic Fatigue Syndrome”, the term that the medical profession tends to use and unfortunately this has now produced, it’s rather like dumping everyone with different types of arthritis, inflammatory arthritis, osteoarthritis, infective arthritis, under one umbrella and saying that they’ve all got the same cause, the same symptoms and the same treatments and that does not apply to arthritis, it does not apply to everyone who comes under this umbrella of Chronic Fatigue/Chronic Fatigue Syndrome.

This is one of the key points the MRC is addressing the need for sub grouping people under this umbrella, finding the different causative factors that are going on and then applying appropriate different forms of management to the different types of sub groups under this umbrella.

Anne Diamond: Now, I mean, you look at the situation – for instance here in Berkshire – where our Primary Care Trusts [PCTs] are offering Cognitive Behavioural Therapy [CBT]. Is that appropriate any longer?

Dr Charles Shepherd: It’s not appropriate as a one size fits all treatment and this is our big problem with the NICE Guideline, it’s why patients object to the NICE Guideline because the NICE Guideline recommends CBT and Graded Exercise Therapy [GET] should be offered to everyone with mild to moderate ME and this is not what we feel is appropriate one size fits all treatment. Many patients find these therapies either ineffective, around about 50% with CBT and in the case of Graded Exercise treatment, if you apply this wrongly you make these patients worse. That’s why there is terrific concern and anger amongst the patient community with the NICE Guideline.

Anne Diamond: Can I move on to the…this business of the Lightning Therapy, the Lightning Process? Because it was very controversial when Esther was talking about it last week. Her daughter went through it, but some listeners were angry that we even mentioned the Lightning Process. Why is it so controversial? Professor Findley, first…

Professor Findley: Erm, that’s a very straightforward question with a very complex answer. I think the Lightning Process has a part to play in the management of some patients. It is not a specific treatment for Chronic Fatigue Syndrome/ME, it’s used to treat a whole raft of conditions. But there are some patients that can be recognised who have factors which would lend themselves – factors which are perpetuating the illness – which would lend themselves to the Lightning Process.

Now these are, in my opinion, a very small group of patients overall, but because Lightning Process practitioners are often only experienced in that one technique they apply it to anybody who visits them with an objective of getting treatment, so their patients are treated in an unselected manner and therefore this has led to all sorts of complications and dissatisfaction.

Anne Diamond: Dr Shepherd?

Dr Charles Shepherd: Well, I have this strong objection to the Lightning Process – in particular the way it’s marketed to very vulnerable groups of people with adverts which are making unsubstantiated claims about success rates.

Professor Findley: Agreed…agreed.

Anne Diamond: But it clearly is true for some and as you both seem to be agreeing that this is multi-factorial, very complex, no one patient is exactly the same as the other.

Professor Findley: Well I think I absolutely agree with this, but erm… the…and I agree with Charles’ comments on the Lightning Process – it’s been badly, badly applied, poorly researched and we would use it or recommend it probably in perhaps one in thirty or one in forty of patients, after they have been properly assessed over a long period of time and more standard management programmes have been applied.

Anne Diamond: Before we run out of time, can I finally ask both of you really ‘cos a lot of people who contacted us were asking about recovery rates from ME. What can you tell us about the numbers and are indeed there any robust figures on this? Dr Shepherd, first.

Dr Charles Shepherd: Well, I wouldn’t say there were really robust figures. I think its, a lot of it is clinical judgement from individuals, you know, that see patients with this and you know, a limited amount of epidemiological research.

Where I come in is I think we probably have three groups. We have a group at one end of the spectrum who are severely effected certainly at some stage in their illness and they probably account for about 25% of the total, I mean these are people who are bed-bound, wheelchair-bound, house-bound.

We have a large group in the middle who make some degree of, I think the word here is improvement, over the course of time but do not recover but they hit a glass ceiling, 50, 60, 70% of what they were normally like and then we have a small group at the other end of the spectrum who make a much more significant degree of improvement or may even finally recover – an example there is Yvette Cooper, a former government minister. I would add that the improvement/prognosis in children/adolescents with this disease does seem to be a lot better than it is in adults.

Anne Diamond: And Professor Findley?

Professor Findley: I would, there aren’t robust figures and I think Charles is right, we would normally say that the average duration taken across the group, the average duration of this type of illness is three to five years with at least 40% of patients never getting back to previous levels of functioning and I’d agree with Charles there is the very severe group and their prognosis is appalling and they very rarely get any proper management advice.

Anne Diamond: Well that was Dr Charles Shepherd and Professor Leslie Findley speaking to me a little earlier on. It’s a very important subject isn’t it?

It’s very important that we hear a balanced argument on it. So we put some of those issues to the founder of the Lightning Process, Phil Parker. Phil’s website calls the process “A non medical tool that is tailored to help people who are stuck in their life or health”. Well BBC Radio Berkshire’s Duncan McLarty, first asked him whether he agreed that the process is only appropriate in a small fraction of ME cases.

Phil Parker: You know that sounds like scientific data but it’s not science – there’s no evidence to say that, that’s just their opinion! First thing we do is have a chat with people and we assess them as to whether this is a really useful thing for them because obviously we want to see people who we think are going to get value from this.

Duncan McLarty: But if you’re not an ME specialist how would you know if it’s appropriate?

Phil Parker: Er, well we are specialists at the Lightning Process. We know more about the Lightning Process than these people because we designed it and trained in it. So what we are looking for is, do we think these people are likely to get benefit from the stuff that we do. What we’re really interested in is how can we help these people who, who’ve got stuck, where there aren’t many solutions, is there anything we can do to help them that’s really where we’re coming from.

Anne Diamond: Well can I just say thank you very much for all your emails on the subject of ME over the last week or so. I think we’ve certainly shown that it’s a complex area with plenty of strong and sometimes conflicting views. We also asked Phil Parker whether he agreed that the process was aggressively marketed as those two experts told me.

Phil Parker: Basically our practitioners, erm, don’t make claims. What they say is, that you know our experience is, that when some people use this they can make changes. That doesn’t guarantee change. If you…you know you have a business then you want to tell people about it that doesn’t make it aggressive marketing, that’s the thing I… deny and say that all we’re doing is, say look this is something that we’ve found is very useful, have a look at it and if you want to talk to us more about it then do, if you don’t that’s fine as well. We really don’t market it aggressively at all.

Anne Diamond: Well there you are, you see, that was Phil Parker, who is the founder of the Lightning Process, and earlier on I was talking to Dr Charles Shepherd, Medical Adviser to the ME Association, and Professor Leslie Findley who’s Clinical Director of the National ME Centre and the Centre for Fatigue Syndromes.

Related material:

1] SMILE – Specialist Medical Intervention and Lightning Evaluation documents (Lightning Process pilot study – children [now aged 12 to 18] with CFS and ME): http://wp.me/p5foE-37x

2] ASA adjudication against “Withinspiration”, June 2010

3] Background to this issue: http://wp.me/p5foE-2Vt

4] All posts on Lightning Process pilot study in children issue on ME agenda: https://meagenda.wordpress.com/category/lightning-process-smile-study/

Dr Charles Shepherd, Prof Leslie Findley and Phil Parker (Lightning Process) on Radio Berkshire

Dr Charles Shepherd, Prof Leslie Findley and Phil Parker (Lightning Process) on Radio Berkshire

Shortlink: http://wp.me/p5foE-3dk

Note: This is an edited version of content first posted on 11 November.

On 2 November, the ME Association reported that BBC Radio Berkshire had broadcast an interview with the ME Association’s medical adviser, Dr Charles Shepherd, during an item on the UK life ban on blood donation by everyone with the illness ME and CFS which was implemented on 1 November.

During the interview, also broadcast on 1 November, Esther Rantzen, standing in for Anne Diamond, the usual presenter of this mid-morning programme, had sidelined discussion of the implementation of the blood ban to promote the Lightning Process.

The ME Association reported that “Claims were made about the value of Lightning Process approach for people with ME/CFS and recovery rates for the illness which we challenged as soon as we heard they had been made. These will be the subject of a further item on BBC Radio Berkshire on Thursday 11 November…” See next posting

The 1 November broadcast can be heard here, on YouTube, in three parts:

http://www.youtube.com/watch?v=G4MFSRPMOWQ

http://www.youtube.com/watch?v=CS0kHH8NZ0k

http://www.youtube.com/watch?v=vNSgmuMlgXk

There has been considerable concern about the way in which Ms Rantzen conducted herself during the ME strand on this programme which had included contributions from ME patients via phone link. Complaints have been pouring in to the programme producers by email and phone.

One poster on Facebook wrote:

Esther Rantzen to radio caller Will: “..Now I am going to tell you something Will….. I can tell you about my daughter, she found something called the Lightning Process and you can find it on the internet….. it’s a method of training your brain to withstand the symptoms….. it’s a form of Neuro-linguistic Programming, you know how people use their mindset to withstand symptoms….”

Esther to Will: “…Let me tell you something else, it is an illness that most people recover from spontaneously, most people, 60% of people, get back to normality”

(Surely recovery rates are between 5 and 12%?)

Caller Will to Esther referring to the lifetime ban on giving blood by everyone diagnosed with ME (whether or not any improvement in their health has occurred). Will explains that some people have been wrongly diagnosed with ME and turned out to have completely different diseases:

Will: “…The difficulty is with the diagnostic process with ME, it’s an educated guess by specialists so there may be many people diagnosed with ME that may not even have ME in the first place….. now, in line with the blood ban that’s been announced to day what happens if you’ve been misdiagnosed, or undiagnosed…”

Esther: “Well, I mean, obviously the ban cannot apply…”

WRONG. The lifetime blood ban from the 1st November applies to everyone who has been given a diagnosis of ME or CFS in the UK. Esther announced that the ban “cannot apply” to individual cases. That is very irresponsible of her and appears to overrule the Blood Services announcement on the ban.

Esther to Will: “Will listen, don’t give up hope..… I tell you what, have a look at what the Lightning Process, it’s on the internet…”

Esther has directed the caller to look up Lightning on the internet for the second time in a few minutes. What Will would find on the internet is the commercial Lightning site advertising Lightning.

Will: “…I don’t think I have the funds….”

Esther: “I think there may be an equivalent on the NHS”

WRONG. There is no equivalent of Lightning on the NHS.

 

Today, just after 12 noon, in a pre-recorded interview, Anne Diamond discussed ME and CFS in general, its WHO neurological classification, the need for biomedical research and sub-grouping, the MRC’s CFS/ME Expert Group, the Lightning Process, and illness prognosis with Dr Charles Shepherd and Professor Leslie Findley. There was a brief contribution from Phil Parker towards the end of the interviews.

In 2007, Prof Leslie Findley had undertaken an informal, non RCT pilot study of the Lightning Process. No results from this pilot have been published but Prof Findley spoke to the Canadian media in an article here, in 2008, in which he quotes unremarkable results and reports that in small number of cases there can be bad relapses.

CBS News In Depth: Health
Lightning Process
Controversial training program comes to Canada
April 18, 2008  |  By Zoe Cormier

 

Prof Findley had also given a presentation around the pilot study at the 2007 Ramsay Society Annual Meeting with a colleague,  Gerrie de Vries. There is no English summary or note of this Ramsay Society meeting but photographs and notes were published, in German, by Regina Clos, which can be read in auto translate here:

Gerrie de Vries & Leslie J. Findley: “The Effects of the Lightning Process in the Management of Chronic Fatigue Syndrome – a start.” : http://tinyurl.com/sykesgermantoenglish

An personal account here on Bad Science Forum mentions Prof Findley’s involvement in “Neuro Behavioural Training” – an approach described as encompassing “Occupational Therapy, Clincal Hypnotherapy, Neuro Linguistic Programming, Cognitive Behaviour Therapy and Life Coaching”. Sessions take place over three days.

When asked about the Lightning Process, in today’s interview, Prof Findley said “…it’s been badly, badly applied, poorly researched and we would use it or recommend it probably in perhaps one in thirty or one in forty of patients, after they have been properly assessed over a long period of time and more standard management programmes have been applied” but he did not mention that he had, himself, undertaken an informal pilot in 2007.

 

Until 18 November, you can “Listen again” to the Radio Berkshire broadcast on BBC iPlayer at:

Radio Berkshire 11 November Anne Diamond

Starts at 2 hours 3 mins in from beginning of programme.

Broadcast on BBC Berkshire, 10:00am Thu, 11 Nov 2010
Available until 1:02pm Thu, 18 Nov 2010

Or listen on YouTube, here:

http://www.youtube.com/watch?v=9YX3wFkDlhI

On 10 November I sent this letter of complaint to the producers of the Anne Diamond programme. (At 18 November, I have yet to receive a response or acknowledgement.)

Re: Broadcast in which Esther Rantzen discussed ME/CFS and the new UK ban on blood donation by everyone with the illness with ME Association medical adviser, Dr Charles Shepherd, BBC Radio Berkshire: Monday 1 November

I am writing to complain about Ms Rantzen’s handling of this broadcast.

I understand that Ms Rantzen was standing in for the usual presenter, Ms Anne Diamond.

I have the following concerns:

1] Ms Rantzen was brought in to present a programme during which the ME/CFS blood ban would be discussed.

Ms Rantzen has a number of COIs in relation to ME/CFS.

Ms Rantzen is President of AYME (The Young People’s ME Trust).

She is known to promote the Phil Parker Lightning Process in the media.

The patient organisation of which she is President has for its medical adviser, Dr Esther Crawley.

Dr Esther Crawley is about to commence recruiting participants to a controversial pilot study where the Lightning Process will be applied to children aged 12 to 18 years old, for which Dr Crawley is Chief Investigator.

The patient organisation of which Ms Rantzen is President has been involved in the development and planning of this Lightning Process pilot study.

The patient organisation of which Ms Rantzen is President has a seat on the “Expert Advisory Group” for this Lightning Process pilot study.

2] I have scrutinised a partial transcript and note that during the broadcast, Ms Rantzen, on several occasions, sought to promote the Lightning Process to the public and to a contributor to the programme calling on a phone-link and that she also directed him to look at the internet for more information on the Lightning Process.

Ms Rantzen also made claims for recovery rates of patients with ME/CFS for which she offered no supporting evidence.

3] In my opinion, Ms Rantzen gave misleading information in relation to the blood ban and its application to individuals.

In response to the caller’s concerns about the cost of the Lightning Process, Ms Rantzen is reported as having said, “I think there may be an equivalent on the NHS”.

This is incorrect, there is no equivalent available on the NHS.

In the light of Ms Rantzen’s COIs and given her blatant promotion of the Lightning Process during a BBC broadcast I do not consider that Ms Rantzen could be considered to have been a neutral presenter.

I do not consider that she should have used the issue of the ME/CFS blood ban to promote a commercial “training” programme marketed by Phil Parker and his Lightning Process trainers / coaches / practitioners during a BBC broadcast.

I consider that the BBC was negligent in its failure to take Ms Rantzen’s COIs into consideration when selecting a stand-in for Ms Diamond and that Ms Rantzen had taken advantage of her position, as presenter, to introduce and promote the Lightning Process to the public during an item, the focus of which, was the recent UK blood ban for ME/CFS patients.

I would welcome your responses.

I also request a copy of the BBC’s policy on the declaration of COIs in its presenters and a copy of the BBC’s policy on the promotion of commercial goods and services by BBC presenters during broadcasts.

Sincerely, etc

Related material:

1] SMILE – Specialist Medical Intervention and Lightning Evaluation documents (Lightning Process pilot study – children [now aged 12 to 18] with CFS and ME): http://wp.me/p5foE-37x

2] ASA adjudication against “Withinspiration”, June 2010

3] Background to this issue: http://wp.me/p5foE-2Vt

4] All posts on Lightning Process pilot study in children issue on ME agenda: https://meagenda.wordpress.com/category/lightning-process-smile-study/

Changes to ME agenda WordPress site

Changes to ME agenda WordPress site

Shortlink: http://wp.me/p5foE-3bP

Yesterday, I posted a House of Lords Written Question that has been tabled by the Countess of Mar, on 21 October, in which questions are raised about the ethical approval of the Dr Esther Crawley led Lightning Process pilot study in children. A Written Answer is expected on 4 November and I shall publish that answer here.

There have also been some developments with the National Research Ethics Service (NRES) which I am not involved in, myself, but I will report on those developments as more information becomes available.

I maintain several WordPress sites and I shall continue to post alerts on this site to new material published on my Dx Revision Watch site – the concept for which developed out of research and awareness raising undertaken throughout 2009 around the forthcoming revisions of two important international disease classification systems: the (APA) American Psychiatric Association Diagnostic and Statistical Manual (DSM) and the World Health Organization International Statistical Classification of Diseases and Related Health Problems (ICD).

Other than that, I do not intend to post further material on ME agenda site.

I don’t like the nonsense that passes for rational discourse so often in our society. I am very much bothered by the inaccuracies, ambiguities, code words, slogans, catch phrases, public relation devices, sweeping generalizations, and stereotypes, which are used (consciously or otherwise) to influence people.

I am bothered by the inability of many to recognize these for what they are. I am bothered by the way people fudge issues, or are unable to clarify them, sometimes because they are inhibited by “collegiality” and other forms of intimidation (sometimes subtle, sometimes not). Most people put up with the nonsense without doing anything about it (unable or unwilling, for whatever reason – inertia, lack, of energy, lack of interest, lack of time, etc.), often falling into cynicism and despair.

I am bothered by the misinformation which gets disseminated uncritically through the media and by the obstructions which prevent correct information from being disseminated. These obstructions come about in many ways – personal, institutional, through self-imposed inhibitions, through external inhibitions, through outright dishonesty, through incompetence – the list is a long one.

I am bothered by the way misinformation, disguised as scholarship, is used in social, political, and educational contexts to affect policy decisions.

I am bothered by the way misinformation is accepted uncritically, and by the way people are unable to recognize it or reject it.

              Serge Lang The File: Case Study in Correction 1977-1979 (1981)

House of Lords short debate: Neurological health conditions 11 October 2010

House of Lords short debate: Neurological health conditions 11 October 2010

Shortlink: http://wp.me/p5foE-39S

ME Association report followed by full Hansard transcript

Hansard source (Citation: HL Deb, 11 October 2010, c393)

ME Association News page

http://www.meassociation.org.uk/?p=2381

The Countess of Mar battles again for ME in Lords’ debate – 11 October 2010

In a short debate on neurological health conditions in the House of Lords yesterday, crossbench peer The Countess of Mar had this to say:

My Lords, the noble Baroness, Lady Gardner of Parkes, has chosen an appropriate moment to table this Question and I am grateful to her. I declare an interest, as I have a diagnosis – finally – of organophosphate poisoning leading to autonomic dysfunction. I am a patron of several charities and groups that represent the interests of patients with myalgic encephalomyelitis, also known as ME or CFS, but which I will call by its common abbreviation, ME. I am also chairman of Forward-ME.

Arising from my own illness and the battle that I and others had to get the toxicity of the once ubiquitous organophosphates recognised – a battle that I am sure the Minister well recalls – I became interested in other medical conditions, such as fibromyalgia and Gulf War illnesses, for which there was no diagnosis or treatment, let alone recognition. Foremost among these is ME. ME has been categorised as a neurological condition at least since 1968. It is recognised as such by the World Health Organisation and the United Kingdom Government. However, for all these years, sufferers from this awful debilitating illness have been ignored, derided and mistreated. The soubriquet “yuppie flu”, acquired in the 1970s, has stuck in the minds of the public and, unfortunately, in the minds of far too many members of the medical and allied health professions. Too often I hear statements such as: “Sometimes I felt that the therapist did not appreciate how physical and biological the symptoms are. She said she understood but then suggested that a lot could be cured just by thinking differently. I don’t think she really appreciated how severe the symptoms are, or that when I said I couldn’t do something I really meant that I couldn’t do it. She also talked a lot about needing to get fitter, which I thought completely missed the point”.

Many thousands of peer-reviewed scientific papers from researchers around the world demonstrate that ME is a physical disease which has endocrine, immune and cardiovascular effects, as well as neurological symptoms, albeit with some of the psychological aspects common to many chronic diseases. It is distinct from chronic fatigue which is a symptom of many diseases – depression or cancer, for example. Despite this, there is a school of thought, dominant through the last three decades, that this is a psychosocial behavioural problem, easily dealt with by cognitive behavioural therapy and graded exercise. On many occasions I have spoken about the failure of successive Administrations to recognise ME for what it is: a chronic illness with fluctuating symptoms of unknown or uncertain origin and of variable severity. There are theories that it has its source in a viral or bacterial infection that persists and eventually affects all the major bodily systems. Others think its source may be environmental-caused, for example, by those ubiquitous toxic chemicals such as OPs, which are, incidentally, designed to attack the nervous systems of their target species. The simple answer is that we do not know.

In the UK, funding for research into ME has concentrated on its psychological aspects. There is a school of psychiatry determined to claim the condition for its own, both in the UK and internationally. After many years of working in this sphere, I have observed the means by which any valid arguments for a biological cause are mocked and eventually overwhelmed by the noisier medical opposition. They ignore internationally recognised science on the grounds that it is not scientific. They find every reason to reject small-scale scientific research projects conducted in the UK because they are not representative. Members of their own profession who have a considerable degree of success in treating patients with ME are hounded out of business. By writing numerous papers which, of necessity because there is no one else to do it, are peer reviewed by their colleagues, they appear to have proved that there is no need for further research and that the doctors responsible for diagnosing and treating ME do not need to conduct any more than the basic range of tests on their patients.

The previous Administration did try to help patients with ME. The Chief Medical Officer commissioned a report, published in 2002, on the subject. It recognised that ME is an illness that is as chronic and disabling as MS. It recognised the shortfall in research and in NHS provision, particularly for children. The Chief Medical Officer recommended the setting up of specialist centres to diagnose and treat people with ME – £8.5 million was allocated for the purpose. There developed small pockets of excellence where patients were pleased with the provision. These tended to be fine for patients who were able to get to the centres, usually hospital-based, but for the 25 per cent of patients who are housebound and, worse still, bed-bound, there was little help. Some health authorities were so slow that their projects failed to get off the ground before the funding had dried up; others, based on psychiatric units, were regarded with suspicion by patients. What I am saying is that, because of the way that people have behaved over this illness, patients with ME are not getting access to ancillary helpers in the NHS.

Two later reports, the latest published earlier this year by the All-Party Parliamentary Group on ME, of which I was a member, again highlighted the lack of NHS provision for patients with ME. Both reports stressed the failure of the NHS to provide for children and the severely affected. NICE, in its CFS/ME guidelines, also recognised the variable severity of the illness and the lack of treatments available. It recommends that treatment should be tailored to the patient with the patient’s consent and that allied health professionals such as physiotherapists and psychologists must have knowledge of ME and be experienced.

Current NHS treatments depend upon a multidisciplinary approach. I know from experience that a hospital referral can be very unsatisfactory unless the consultant has an open mind and looks at more than just one “bit” of a patient. All too often when a patient fails to respond to the recommended treatment, he or she is blamed for the failure and a psychiatric referral ensues. There is no passing patients on to people who might be able to help them, such as cognitive behaviour therapists. There are an estimated 250,000 people with ME, most of whom are treated by professionals with very little, if any, understanding of their illness. Since specialist services are inadequate, many patients are left to fall upon their own resources. Some are fortunate, such as the patient who said, “By understanding how I could approach my daily activities in smaller chunks and hence planning for this, including fun activities, I ultimately became stable and could build from there”, or another who said, “One-to-one supervision from a very skilled and experienced therapist kept me on track, pulled me up when I needed it and gave me encouragement. They listened to me, believed in me, reflected my progress to me at times when I couldn’t see it”.

I cannot say how important being listened to and being believed are. I am pleased to see that the coalition intends that patients should have more say in the NHS provision of services. I also see that it is to discuss professional training with the royal colleges. However, until there is a cultural change among health professionals, patients with ME will continue to find it difficult to find help within the NHS. Until the professionals take time to listen to patients and to believe them, they will never develop the skills needed to enable them to help patients along the road to recovery.

I wish I had the solution to the suffering of people with ME. It seems that, no matter how often Ministers and senior officials confirm their acceptance of the seriousness of this condition, nothing will change until the culture both within and outside the NHS changes. I believe that in this particular case the patients, some of whom have experienced illness for decades while others have made excellent recoveries, have a huge amount of knowledge to impart. The Canadian guidelines to diagnosis and treatment of ME have, for reasons that have never been explained, repeatedly been rejected by health professionals and yet they are regarded by patients as providing the best course of action.

May I ask the noble Earl whether the coalition continues to accept that myalgic encephalomyelitis is a neurological illness as categorised by ICD10 G93.3? If he does, will he say how Her Majesty’s Government will ensure that there is sufficient qualified medical and allied professional expertise to treat patients with illnesses such as ME with the effectiveness and dignity they deserve?

The “noble Earl” to whom she was addressing her question in the final paragraph was Earl Howe, who is the Parliamentary Under-Secretary of State for Health. His direct response to the Countess was:

The noble Countess, Lady Mar, asked whether the coalition accepts that CFS/ME is a neurological condition. The Government accept that it is a neurological condition. In many cases, allied health professionals will have a role to play and it goes without saying that all of them should treat patients with respect and dignity, whatever their diagnosis.

The debate was launched by Baroness Gardner of Parkes who discussed the role of allied health professionals in maintaining the health and social well-being of people with long-term neurological conditions. Four other peers made substantive contributions to the debate

————-

Full Hansard transcript

Hansard source (Citation: HL Deb, 11 October 2010, c393)

http://www.publications.parliament.uk/pa/ld201011/ldhansrd/text/101011-0002.htm#10101116000064

11 Oct 2010 : Column 379

Health: Neurological Conditions
Question for Short Debate

6.09 pm

Asked By Baroness Gardner of Parkes

To ask Her Majesty’s Government what is their assessment of the role of allied health professionals in maintaining the health and social well-being of people with long-term neurological conditions.

Baroness Gardner of Parkes: My Lords, the notice of the opportunity for this debate was very short, but the topic is an important one and I am delighted that we are debating it this evening. I thank those who are speaking. I know that in some cases they have had to alter their arrangements to enable them to be here and that many others who also have a particular interest in or knowledge of the subject cannot be here today.

I start by giving noble Lords the Royal College of Physicians’s definition of long-term neurological conditions:

“Long-term neurological conditions (LTNCs) form a diverse set of conditions resulting from injury or disease of the nervous system that will affect an individual for the rest of their lives. They include: sudden onset conditions (eg acquired brain injury of any cause (including stroke), spinal cord injury) intermittent conditions (eg epilepsy) progressive conditions (eg multiple sclerosis (MS), motor neurone disease (MND), Parkinson’s disease (PD) and other neurodegenerative disorders) stable conditions with/without age-related degeneration (eg polio or cerebral palsy). Taken together, LTNCs are more common than most clinicians realise. Some 10 million people in the UK are living with a neurological condition which has a significant impact on their lives, and they make up 19% of hospital admissions”. Continue reading

Review of Invest in ME proposal for a ‘Centre of Excellence for ME’ in Norfolk

Review of the Invest in ME proposal for a ‘Centre of Excellence for ME’ in Norfolk by Chris Douglas

Shortlink to this posting: http://wp.me/p5foE-33z

or http://tinyurl.com/ReviewIiMEProposal

At the 5th Invest in ME International ME/CFS Conference held in May, this year, a proposal was announced for the establishing of a “Centre of Excellence for ME” in Norfolk. To the best of my knowledge, Invest in ME had undertaken no national consultation with ME patients before drawing up its proposals.

Today I am publishing a review of Invest in ME’s proposal prepared by Chris Douglas.

A text version of this review is published in the next post.

 

Review of the Invest in ME proposal for a ‘Centre of Excellence for ME’ in Norfolk

By Chris Douglas

27 August 2010

Introduction

In August 2010, Invest in ME (IiME) published a document titled: ‘A New Era in ME/CFS Research: An Opportunity for Major Progress in Diagnosis, Treatment and Research into Myalgic Encephalomyelitis’¹.

It is assumed that this document is a precursor to a more formal and detailed proposal that will be used to secure consultative input and financial commitment to the project.

The following review highlights specific areas in which the proposal could be strengthened if, in particular, it is to maximise commitment from potential financial donors.

Review of the Invest in ME proposal for a ‘Centre of Excellence for ME’ in Norfolk

Open Word document here: Norfolk Proposal Review 27.08.10

A text version of this Word document is published in the next post

 

Related information

Invest in ME

“Invest in ME is an independent UK charity campaigning for bio-medical research into Myalgic Encephalomyelitis (M.E.), as defined by WHO-ICD-10-G93.3.”

Invest in ME is constituted as a Trust, registered with the Charity Commission and run by a committee of three Trustees/Directors. Invest in ME is not a membership organisation. The organisation was founded in 2006 by carers and patients, Sue Waddle, Richard Simpson and Kathleen McCall (current chair). Ms Waddle has since stood down as a Trustee.

http://www.investinme.org/Research%20-%20ME%20Institute.htm

Invest in ME

A UK Centre for Biomedical Research into ME

Read the announcement here

The Research Proposal published by Invest in ME in July can be read here in PDF format:

       Biomedical Research Institute Proposal July 2010

“A New Era in ME/CFS Research 

“An Opportunity for Major Progress in Diagnosis, Treatment and Research into Myalgic Encephalomyelitis”

“A VISION FOR THE FUTURE

“Recent biomedical research and advances in knowledge and treatment regarding Myalgic Encephalomyelitis have brought more urgently needed awareness of this disease. In the East Anglian region of UK an opportunity now exists to bring real benefit to patients and establish a unique capability which will attract attention and recognition from across UK and Europe.”

 

Media coverage

Great Yarmouth Mercury

Hopes for ME centre in Norfolk raised

31 August 2010

“…The independent charity will carry out the official campaigning for funding for the centre once a formal agreement is made.

“Now the charity has offered to send some of the UEA researchers to a biomedical research symposium in Australia at the end of the year.

“Mr Simpson said: “This would involve them discussing work with the top ME researchers and clinicians in this field from around the world.

“Discussions are under way, and we are really hopeful this will move things forward. The centre could change the lives of patients with ME. Early diagnosis is so important, and this centre would help establish that.’

“The charity is also planning to organise a conference in Norwich with the UEA and the Norfolk and Norwich University Hospital and is lining up discussions with the US Whittemore Peterson Institute, an institute for neuro-immune disease in Nevada that helps thousands of people with ME through research, scientific developments and treatment…”

———————

Norwich Evening News

Plans for world class Norfolk centre

Sarah Hall  |  27 August 2010

———————

Environmental Illness Resource Blog

UK to get WPI Inspired Chronic Fatigue Syndrome Research and Treatment Centre

News – Chronic Fatigue Syndrome News

Matthew Hogg  |  13 August 2010

———————

EDP24

Norwich centre for ME sufferers planned

Sarah Hall  |  3 August 2010

BRAME Statement about the Lightning Process

BRAME Statement about the Lightning Process

Shortlink: http://wp.me/p5foE-2Zv

According to information received, today, the MEA and Tymes Trust will issue a joint statement later today opposing “unethical” proposed study of Lightning Process effect on children with ME.

BRAME has provided me with the following statement in response to the Bath/Bristol pilot study on Lightning Process for children aged 8 to 18 which does not yet have ethics approval.

Text below or open Word document here: BRAME Lightning Process Statement August 2010

For background to this issue: http://wp.me/p5foE-2Vt

BRAME Statement about the Lightning Process

We (BRAME) have grave concerns about lightening therapy and have voiced these concerns at many meetings, including with the Forward ME group when it was discussed there, and we will continue to do so.

BRAME has always worked/campaigned for ME to be recognised as a neurological illness, as classified by WHO, and have constantly worked to create a greater awareness and understanding of ME, for the complex and debilitating illness we all know it to be, and the impact it has on all those living with ME.

We (BRAME) have also been working hard, for the past 4 years, to try and get a national policy for ME adopted within the NHS, along with the use of the Canadian Clinical Guidelines on ME/CFS, and Canadian Clinical Diagnostic Criteria, to urgently address the paucity of biomedical services for people with ME within the NHS, and to address the national inequality of care. We have consistently raised this with PCTs, SHAs, the All Party Parliamentary Group on ME, various Ministers of Health, and even to Prime Ministers, at Number 10 itself, and within our responses to consultation documents.

Tanya was also patient representative on the CMO Working Group on ME/CFS and the NICE Guideline Development Group on ME/CFS, her response to these can be found on the BRAME website.

When we write to people who want information on BRAME and ME, we always state that:

“If any future health care professional is sceptical about ME, you could politely remind them that:

 Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) are classified as neurological illnesses by WHO (ICD10:G93.3).

This WHO classification of ME and CFS is recognised by the Department of Health.

ME/CFS is included in the National Service Framework for Long Term Neurological Conditions.

ME/CFS is recognised as a neurological illness by the Royal College of General Practitioners with a Read Code of F286 (F denotes diseases of the nervous system).

The Canadian Clinical Guidelines on ME/CFS (2003) give consensus diagnostic and management advice which are accepted around the world.

The first 4 main points were reconfirmed by the Health Minister Ann Keen, at the APPG on ME meeting  on 22 January 2008, and by Lord Darzi, in his response to a formal question posed to him by our patron the Countess of Mar, in the House of Lords on 2 June 2008.”

We have also worked with the DWP for many years, raising the problems many people with ME have with the benefit system, and have campaigned for improved benefits, and on behalf of carers, and have been quoted in the government’s recently published white paper on Welfare Reform. We are extremely concerned over the proposals of the new coalition government on changes to benefits and the Work Capability Assessment and migration of people from IB, SDA and IS to the new ESA. We are also concerned over the proposed new medical assessment for those on DLA.

We have written to all the new Ministers but the responses we have received have not been encouraging. We will have to see if the new APPG on ME can be effective in supporting us by raising our grave concerns with the relevant Ministers. Sadly we lost in the election our own, very supportive, MP, Tony Wright, who was responsible for forming the APPG on ME in 1998, and was an officer of the group from 1998 to 2010.

We will continue to raise our concerns about the lightning process, and the need for a national policy on ME calling for biomedical services led by a specialist in ME of consultant level, to be set up nationwide based on the Canadian Guidelines/Diagnosis as set out in the BRAME Guide to Diagnosing, Managing and Caring for people who are Severely/Very Severely Affected by ME.

Tanya Harrison
Chairperson – BRAME
August 2010

http://www.brame.org/

Summary: ICD-11 Alpha Draft and iCAT (PVFS, ME and CFS)

Summary: ICD-11 Alpha Draft and iCAT (PVFS, ME and CFS)

Shortlink: http://wp.me/p5foE-2Ur

Compiled by Suzy Chapman Dx Revision Watch

May be republished if published in full, unedited and with source acknowledged. 

A version of this report was published on Co-Cure on 11 June 2010.

The information in this summary relates to proposals for ICD-11. It does not apply to ICD-10-CM, the forthcoming US “Clinical Modification” of ICD-10, scheduled for implementation in October 2013.

This report provides a summary of the material published on Dx Revision Watch site on 7 June that included screenshots from the iCAT, the wiki-like collaborative authoring platform through which ICD-11 is being drafted.

 

To view proposals as they currently stand, see the 12 screenshots here:

PVFS, ME, CFS: the ICD-11 Alpha Draft and iCAT Collaborative Authoring Platform, 7 June 2010, Post # 46: http://wp.me/pKrrB-KK

 

Presentation of an alpha draft to the WHA:

A hard copy “snapshot” of the ICD-11 alpha draft, as it stood at that point, was presented by WHO at the 63rd World Health Assembly meeting, between 17 and 25 May.

According to page 38 of the document “ICD-11 Revision Project Plan”:

“WHO will consider endorsement of the alpha draft, after all concerns of RSG and the Classification TAGs have been duly taken into account. The alpha draft is a frozen state of development of the ICD-11 that will include a large part of the structural changes, and the majority of the definitions. The Alpha draft will be produced in a traditional print and electronic format. The Alpha Draft will also include a Volume 2 containing the traditional sections and including a section about the new features of ICD-11 in line with the style guide. An index for print will be available in format of sample pages. A fully searchable electronic index using some of the ontological features will demonstrate the power of the new ICD” [1].

The date by which WHO anticipates this stage should be reached is unconfirmed.

Caveat

For better understanding, it is important that the brief iCAT Glossary page is read in conjunction with the iCAT screenshots, especially the Glossary entries for ICD-10 Code, ICD Title, Definition, and for the Terms: Synonyms, Inclusions and Exclusions [2].

Read the iCAT Glossary here:
http://apps.who.int/classifications/apps/icd/icatfiles/iCAT_Glossary.html

Secondly, it needs to be understood that the alpha draft is a “work in progress”. Not all content will have been compiled yet and entered into the iCAT and there are many blank fields awaiting population for all chapters and all categories. It also needs to be understood that some text already entered into the various “Details” fields may still be in the process of internal review.

Summary

In ICD-10, there is no textual content for the three terms “Postviral fatigue syndrome”, “Benign myalgic encephalomyelitis” and “Chronic fatigue syndrome” .

There are no definitions and the relationship between the three terms is not specified.

In ICD-11, categories will be defined through the use of multiple parameters: Title & Definition, Terms: Synonyms, Inclusions, Exclusions, Clinical Description, Signs and Symptoms, Diagnostic Criteria and so on, according to a common “Content Model” [3].

The level of detail currently visible in the iCAT isn’t sufficiently specific to enable me to present an unequivocal overview of current proposals for potential changes to hierarchy or for the specification of the relationships between the three terms of interest to us.

Based only on the information visible in the iCAT as it stood at 11 June 2010, it appears that instead of:

ICD-10: Volume 1: The Tabular List (version for 2007)

http://apps.who.int/classifications/apps/icd/icd10online/?gg90.htm+g933

Chapter VI (6)

Diseases of the nervous system
(G00-G99)

[…]

Other disorders of the nervous system
(G90-99)

[…]

G93 Other disorders of brain

[…]

G93.3 Postviral fatigue syndrome
Benign myalgic encephalomyelitis

(with Chronic fatigue syndrome indexed to G93.3 in ICD-10: Volume 3: The Alphabetical Index)

what appears to be being proposed at this point for ICD-11 is that:

The classifications coded between G83.9 thru G99.8 in ICD-10 Chapter VI: Diseases of the nervous system, are being reorganised.

For ICD-11, Chapter 6, codings beyond G83.9 are represented by new parent classes numbered GA thru to GN;

example:

Chapter 6 VI Disorders of the nervous system

[…]
G80-G83 Cerebral palsy and other paralytic syndromes
GA Infections of the nervous system
GB Movement disorders and degenerative disorders
GC Dementias
GD Epilepsy and seizures
[…]
GN Other disorders of the nervous system

“GN Other disorders of the nervous system” is parent to five child classes which have been assigned the “Sorting labels” Gj90-Gj94.

(A Sorting label is a string that can be used to sort the children of a category. This is not the ICD code.)

Four of these five Gj9x classes have a complex hierarchy of child and grandchildren classes.

At Gj92, sits “Chronic fatigue syndrome”

“Gj92 Chronic fatigue syndrome” has no child classes of its own.

Next to “Gj92 Chronic fatigue syndrome” is an icon for “Category Notes and Discussions”.

There is one Category Note for Gj92 which records:

“[Reason for change]: Change in hierarchy for class: G93.3 Postviral fatigue syndrome. Parents added: (Gj90-Gj99 Other disorders of the nervous system). Parents removed: (G93 Other disorders of brain). New hierarchy”

(Note that the removal of the parent category “G93 Other disorders of brain” will affect a large number of categories classified under G93 in ICD-10, not just those at G93.3.)

In the iCAT production server, click on “Gj92 Chronic fatigue syndrome” and “Details for Gj92 Chronic fatigue syndrome” will display on the right of your screen (it may take a few seconds for the text to load). Or you can view the screenshots on my site: http://wp.me/pKrrB-KK

“Gj92 Chronic fatigue syndrome” is an ICD Title term with a Details page, a Definition and an Inclusions term (but with no Synonyms, Exclusions or other fields yet populated).

“Benign myalgic encephalomyelitis” is listed under Inclusions (the relationship is not currently specified, eg “Synonym” or “Subclass” or whatever).

Extract: iCAT Glossary

http://apps.who.int/classifications/apps/icd/icatfiles/iCAT_Glossary.html#inclusions

“Inclusion terms appear in the tabular list of the traditional print version and show users that entities are included in the relevant concept. All of the ICD-10 inclusion terms have been imported and accessible in the iCat. These are either synonyms of the category titles or subclasses which are not represented in the classification hierarchy. Since we have synonyms as a separate entity in our ICD-11 content model, the new synonyms suggested by the users should go into the synonyms section. In the future, iCat will provide a mechanism to identify whether an inclusion is a synonym or a subclass.”

————-

In the iCAT ICD Categories list, there is no Gj9x Sorting label listing for “Postviral fatigue syndrome” or “Benign myalgic encephalomyelitis” under “GN Other disorders of the nervous system” or under any other parent or child class, and consequently no Category Details display for either term.

(Whether this is because Inclusion terms would appear in the tabular list version but not in the iCAT version or whether this is because of proposed changes to the hierarchy and/or relationship between the three terms, cannot be determined from the information as it stands at 11 June.)

“Postviral fatigue syndrome” is not currently specified under Inclusions in “Details for Gj92 Chronic fatigue syndrome”.

Again, whether this is because “Postviral fatigue syndrome” would be accounted for in the tabular list version or whether this is because it may be being proposed that the term “Postviral fatigue syndrome” (which has lost its parent class “G93 Other disorders of brain”) should be subsumed into “Chronic fatigue syndrome”, with “Chronic fatigue syndrome” as the new ICD category Title, cannot be determined from the information as it currently stands.

Exclusions

If you pull up the iCAT Details for ICD-11 Chapter 5: F48.0 Neurasthenia (or view the screenshots on my site)

“postviral fatigue syndrome” is listed under Exclusions to Neurasthenia and is referenced thus:

“postviral fatigue syndrome”    G93.3 -> Gj92 Chronic fatigue syndrome

In iCAT Chapter 18: R53 Malaise and Fatigue

“fatigue syndrome postviral” [sic] is also listed under Exclusions, referenced

G93.3 -> Gj92 Chronic fatigue syndrome
 

But that in the absence of further information, it is currently unclear what the proposed hierarchical status of Postviral fatigue syndrome will be in relation to Chronic fatigue syndrome.

————-

When you click on the Category Notes icons for some other categories, the Notes are often more explicit, for example, the Category Note for:

GN Other disorders of the nervous system

> Gj90 Disorders of CSF pressure and flow
         > Gj90.0 Increased intracranial pressure disorders

Reads: [Reason for change]: Create class with name: Increased intracranial pressure disorders, parents: Disorders of CSF Pressure and Flow

replaces G93.5, G93.6, and G93.7

The Category Note for “Gj90 Disorders of CSF pressure and flow” records that this class has been created to replace:

G91, G92, G93.0, G93.2, G94.0, G94.1, G94.2, G96.0, G97.0, G97.1, G97.2

(which also gives an idea of the extent to which the structure of ICD-10 classifications between G90 – G99.8 is being reorganised.)

In the absence of an Alpha Draft, I shall be contacting the chair of the Topic Advisory Group for Neurology for further clarification.

**************************************************

So what can be said is that currently in the iCAT for ICD-11 drafting:

That under Chapter 6 (Neurology):

The parent class “G93 Other disorders of brain” is removed.

“Chronic fatigue syndrome” displays as a Title term in the Categories list.

It is a child to parent class “GN Other disorders of the nervous system”.

It has been assigned the “Sorting label” Gj92.

“Gj92 Chronic fatigue syndrome” has a Definition field populated.

It has an External Definitions field populated which includes definitions imported from other classification systems, the text of which includes “Also known as myalgic encephalomyelitis”.

It has “Benign myalgic encephalomyelitis” specified under Inclusions.

It has no Synonyms, Exclusions or other descriptor fields populated yet.

That at this point and as far as the iCAT version is concerned, neither “Postviral fatigue syndrome” nor “Benign myalgic encephalomyelitis” have been listed as ICD Title terms under the parent class “GN Other disorders of the nervous system” or under any other class.

That at this point and as far as the iCAT version is concerned, there is no accounting for “Postviral fatigue syndrome”, other than that “Postviral fatigue syndrome” is specified under Exclusions to Chapter 5 F48.0 Neurasthenia and to Chapter 18 R53 Malaise and fatigue and is referenced as

“postviral fatigue syndrome” G93.3 -> Gj92 Chronic fatigue syndrome

**************************************************

So please read the iCAT Glossary of Terms page, have a look at the screenshots and then have a poke around in the iCAT – you can’t break anything as members of the public have no editing rights [4].

I shall continue to monitor the iCAT production server closely and report on any changes to proposals for Category listings and on the progress of the population of content. (There has been no change since this report was compiled.)

And if you were thinking of getting a G93.3 tattoo done – well it might be best to hang on for a bit…

References:

[1] ICD-11 Revision Project Plan – Draft 2.0 (v March 10)
Describes the ICD revision process as an overall project plan in terms of goals, key streams of work, activities, products, and key participants:
http://www.who.int/classifications/icd/ICDRevisionProjectPlan_March2010.pdf

[2] iCAT Glossary
http://apps.who.int/classifications/apps/icd/icatfiles/iCAT_Glossary.html

[3] Content Model Specifications and User Guide (v April 10)
Identifies the basic properties needed to define any ICD concept (unit, entity or category) through the use of multiple parameters:
http://tinyurl.com/ICD11ContentModelApril10

[4] iCAT production server and Demo and Training iCAT Platform:
https://sites.google.com/site/icd11revision/home/icat
iCAT production server: http://icat.stanford.edu/
Demo and Training iCAT Platform: http://icatdemo.stanford.edu /

Compiled by Suzy Chapman
http://dxrevisionwatch.wordpress.com
https://meagenda.wordpress.com

US “Clinical Modification” ICD-10-CM: Clarification

US “Clinical Modification” ICD-10-CM: Clarification

Shortlink: http://wp.me/p5foE-2Ul

This post is intended to clarify any confusion between ICD-10, ICD-11 and the forthcoming US Clinical Modification of ICD-10 which will be known as ICD-10-CM.

The WHO published ICD-10 in 1992. The current version of ICD-10 (Version for 2007) is used in the UK and in many countries throughout the world.

ICD-10 is under revision and the development of the structure and content of ICD-11 has been underway since 2007. ICD-11 is scheduled for completion in 2014.

 

Clinical Modifications

Several countries are permitted to publish adaptations of the ICD called “Clinical Modifications” (sometimes known as “national modifications”).

Countries using Clinical Modifications of ICD-10 include Canada (ICD-10-CA), Australia (ICD-10-AM) and Germany (ICD-10-GM).

The United States currently uses an adaptation of the WHO’s now retired ICD-9, called ICD-9-CM, and has been slow to move onto ICD-10.

Rather than skip ICD-10 and move straight onto ICD-11 in 2014+, the US has been developing a modification of ICD 10 called ICD-10-CM which will replace ICD-9-CM.

ICD-10-CM is due for implementation in October 2013.

According to one report, the US should not expect to move on to ICD-11 (or a modification of ICD-11) until well after 2020, assuming that the ICD-11 Beta is published around the 2014-2015 projection:

Why move to ICD-10, if ICD-11 is on the horizon?
http://www.healthcarefinancenews.com/news/why-move-icd-10-if-icd-11-horizon

 

What are the proposed classifications and codings for PVFS, (Benign) ME and Chronic fatigue syndrome for ICD-10-CM?

In March 2001, the document:

“A Summary of Chronic Fatigue Syndrome and Its Classification in the International Classification of Diseases Prepared by the Centers for Disease Control and Prevention, National Center for Health Statistics, Office of the Center Director, Data Policy and Standards”

provided a concise “summary of the classification of Chronic Fatigue Syndrome in the International Classification of Diseases (ICD), ninth and tenth revisions, and their clinical modifications.”

That document is archived here: http://www.co-cure.org/ICD_code.pdf

In 2001, the proposal had been:

“In keeping with the placement in the ICD-10, chronic fatigue syndrome (and its synonymous terms) will remain at G93.3 in ICD-10-CM.”

So at that point, it was being proposed for the forthcoming US ICD-10-CM that PVFS, (Benign) ME and Chronic fatigue syndrome would be coded at G93.3, which would have placed all three terms in Chapter VI: Diseases of the nervous system (the Neurological chapter).

But the current proposals for ICD-10-CM propose classifying Chronic fatigue syndrome in Chapter 18, under R53 Malaise and fatigue, at R53.82.

The “R” codes are classified under

CHAPTER 18 (XVIII)
Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified (R00-R99)

This chapter includes symptoms, signs, abnormal results of clinical or other investigative procedures, and ill defined conditions regarding which no diagnosis classifiable elsewhere is recorded…

Note: this is not the ICD-10-CM Mental and Behavioural chapter, which is:

CHAPTER 5 (V)
Mental and behavioral disorders (F01-F99)
Includes: disorders of psychological development
Excludes2: symptoms, signs and abnormal clinical laboratory findings, not elsewhere classified (R00-R99)

which specifically excludes the R00-R99 codes.

So the current proposal for ICD-10-CM separates CFS and Postviral fatigue syndrome into mutually exclusive categories:

“Chronic fatigue, unspecified” and “Chronic fatigue syndrome not otherwise specified” appear in Chapter 18, under R53 Malaise and fatigue, at R53.82.

Whilst “Postviral fatigue syndrome” and “benign myalgic encephalomyelitis” appear in Chapter 6, under G93 Other disorders of brain, at G93.3.

At some point before October 2013, ICD-10-CM revision will be “frozen” for Centers for Medicare and Medicaid Services (CMS) and insurance companies to prepare for the October 1, 2013 implementation.

See Tom Sullivan at ICD10 Watch.com (no connection with my site) here:

CMS, CDC call for ICD-9 and ICD-10 code freeze
http://icd10watch.com/headline/cms-cdc-call-icd-9-and-icd-10-code-freeze

“CMS, the Centers for Medicare and Medicaid Services, along with CDC, the Centers for Disease Control and Prevention, proposed that both ICD-9-CM and ICD-10-CM/PCS code sets be frozen two years before the compliance deadline.

“What that means: As of October 1, 2011, only limited updates would be instituted into the code sets so that providers, payers, clearinghouses, and health IT vendors, will not have to simultaneously keep pace with code updates while also reconfiguring their existing systems for ICD-10-CM/PCS.” ICD10 Watch.com

During the last ten minutes of the CFSAC meeting on Monday, 10 May, Dr Lenny Jason raised his concerns with the committee that the placement of CFS in ICD-10-CM in the Chapter 18 “R” codes could be problematic.

Videocast of full CFSAC meeting here:
http://videocast.nih.gov/Summary.asp?File=15884

In August 2005, CFSAC had submitted the following recommendation to the Secretary:

http://www.hhs.gov/advcomcfs/recommendations/082005.html

“Recommendation 10: We would encourage the classification of CFS as a ‘Nervous System Disease,’ as worded in the ICD-10 G93.3.”

I suggest that US advocates with concerns about current proposals for the placement of CFS within ICD-10-CM keep a close eye on decisions about the date by which ICD-10-CM is to be frozen.

For the most recent ICD-10-CM proposals see:

http://www.cdc.gov/nchs/icd/icd10cm.htm

The 2010 update of ICD-10-CM is now available and replaces the July 2009 version.

The file for the Tabular List is in a Zipped file which is not that easy to locate on the site. A non Zipped PDF can be downloaded from this site:

http://www.cms.gov/ICD10/12_2010_ICD_10_CM.asp#TopOfPage
http://www.cms.gov/ICD10/Downloads/6_I10tab2010.pdf

or open the PDF on my Dx Revision Watch site, here
http://dxrevisionwatch.files.wordpress.com/2009/12/i10tab2010.pdf

ICD-10-CM CHAPTER 18

Tabular List of Diseases and Injuries Page 1165 (Update for 2010)

R53 Malaise and fatigue

[…]

R53.8 Other malaise and fatigue

Excludes1: combat exhaustion and fatigue (F43.0)
congenital debility (P96.9)
exhaustion and fatigue due to:
depressive episode (F32.-)
excessive exertion (T73.3)
exposure (T73.2)
heat (T67.-)
pregnancy (O26.8-)
recurrent depressive episode (F33)
senile debility (R54)

R53.81 Other malaise

Chronic debility
Debility NOS
General physical deterioration
Malaise NOS
Nervous debility
Excludes1: age-related physical debility (R54)

R53.82 Chronic fatigue, unspecified

Chronic fatigue syndrome NOS
Excludes1: postviral fatigue syndrome (G93.3)

R53.83 Other fatigue

Fatigue NOS
Lack of energy
Lethargy
Tiredness

 

ICD-10-CM CHAPTER 6 Page 325 (Update for 2010)

Diseases of the nervous system (G00-G99)

Excludes2:

[…]
symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified (R00-R94)

[…]

G93 Other disorders of brain

[…]

G93.3 Postviral fatigue syndrome

Benign myalgic encephalomyelitis
Excludes1: chronic fatigue syndrome NOS (R53.82)

For comparison:

German Modification ICD-10-GM
http://www.dimdi.de/static/de/klassi/diagnosen/icd10/htmlgm2010/block-g90-g99.htm

ICD-10-GM Version 2010

Kapitel VI
Krankheiten des Nervensystems
(G00-G99)

G93.- Sonstige Krankheiten des Gehirns

[…]

G93.3 Chronisches Müdigkeitssyndrom

Benigne myalgische Enzephalomyelitis
Chronisches Müdigkeitssyndrom bei Immundysfunktion
Postvirales Müdigkeitssyndrom

For comparison:

Canadian Modification ICD-10-CA

(Version 2009 of ICD-10-CA/CCI replaces version 2006)

http://secure.cihi.ca/cihiweb/dispPage.jsp?cw_page=codingclass_e

Version 2009 ICD-10-CA Tabular List, Volume 1 PDF (4.9MB)
http://secure.cihi.ca/cihiweb/en/downloads/ICD-10-CA_Vol1_2009.pdf

Version 2009 ICD-10-CA Alphabetical Index, Volume 2 PDF (4.3MB)
http://secure.cihi.ca/cihiweb/en/downloads/ICD-10-CA_Vol2_2009.pdf

Chapter VI

Diseases of the nervous system
(G00-G99)

Other disorders of the nervous system
(G90-99)

[…]

G93 Other disorders of brain

[…]

G93.3 Postviral fatigue syndrome

Includes: Benign myalgic encephalomyelitis
Chronic fatigue syndrome

Excludes: fatigue syndrome NOS (F48.0)

For comparison with WHO ICD-10:

Current ICD-10 codings for the three terms are set out on my site, here, together with extracts from Chapter V (the “F” codes) and Chapter XVIII (the “R” codes):

http://dxrevisionwatch.wordpress.com/icd-11-me-cfs/

or go here for the full ICD-10 Volume 1: Tabular List

http://apps.who.int/classifications/apps/icd/icd10online/

ICD-10 Version for 2007 online
http://apps.who.int/classifications/apps/icd/icd10online/?gg90.htm+g933

Chapter VI

Diseases of the nervous system
(G00-G99)

Other disorders of the nervous system
(G90-99)

[…]

G93 Other disorders of brain

[…]

G93.3 Postviral fatigue syndrome
Benign myalgic encephalomyelitis

Note that in ICD-10, Chronic fatigue syndrome is not included in Volume 1: The Tabular List, Chapter VI under the parent term:

G93 Other Disorders of brain

but “Chronic fatigue syndrome” does appear in Volume 3: The Alphabetical Index, where it is indexed to G93.3.

In a forthcoming post, I shall be publishing important information about proposals for parent terms, classifications and codings in the ICD-11 Alpha Draft.

 

Related material:

ICD-9-CM

For information on the current codings in ICD-9-CM (US Clinical Modification) see the NAME U.S. page: WHO ICD Codes section

American Psychiatric Association on DSM-5

In a 10 December Press Release, the American Psychiatric Association said:

“Extending the timeline [for DSM-5] will allow more time for public review, field trials and revisions”

and

“The extension will also permit the DSM-5 to better link with the U.S. implementation of the ICD-10-CM codes for all Medicare/Medicaid claims reporting, scheduled for October 1, 2013. Although ICD-10 was published by the WHO in 1990, the “Clinical Modification” version (ICD- 10-CM) authorized by the U.S. Centers for Medicare and Medicaid Services (CMS) and the Centers for Disease Control (CDC) is not being implemented in the U.S. until 23 years later.

“The ICD-10-CM includes disorder names, logical groupings of disorders and code numbers but not explicit diagnostic criteria. The APA has already worked with CMS and CDC to develop a common structure for the currently in-use DSM-IV and the mental disorders section of the ICD- 10-CM.

“The International Classification of Diseases (ICD) is published by the WHO for all member countries to classify diseases and medical conditions for international health care, public health, and statistical use. The WHO plans to release its next version of the ICD, the ICD-11, in 2014.

“APA will continue to work with the WHO to harmonize the DSM-5 with the mental and behavioral disorders section of the ICD-11. Given the timing of the release of both DSM-5 and ICD-11 in relation to the ICD-10-CM, the APA will also work with the CDC and CMS to propose a structure for the U.S. ICD-10 CM that is reflective of the DSM-5 and ICD-11 harmonization efforts. This will be done prior to the time when the ICD-10-CM revisions are “frozen” for CMS and insurance companies to prepare for the October 1, 2013, adoption.”

ICD-11 Alpha Draft, iCAT Collaborative Authoring Platform and PVFS, ME, CFS

ICD-11 Alpha Draft, iCAT Collaborative Authoring Platform and PVFS, ME, CFS

Shortlink: http://wp.me/p5foE-2Ui

The information in this report relates to proposals for ICD-11. It does not apply to ICD-10-CM, the forthcoming US “Clinical Modification” of ICD-10.

 

Whither the ICD-11 Alpha Draft?

According to documents published by the ICD Revision Steering Group (RSG) and the Agenda for the iCAMP2 and Revision Steering Group meeting on 19-23 April 2010, it was projected that an alpha draft for ICD-11 would be ready by 10 May 2010 [Key document 1a].

The RSG meeting Agenda proposed that the alpha draft should be presented to the World Health Assembly (WHA) between 17-25 May. A proposal for a press launch was also tabled for discussion.

It is understood that the ICD-11 alpha draft is being created for internal users, was not expected to be complete by May 2010, but released as a “work in progress” towards the beta stage. The beta draft for ICD-11 is scheduled for 2011, which will be subjected to systematic field trials and then made available for public comment.

10 May has come and gone, and there has been no public launch of an alpha draft or the iCAT – the wiki-like collaborative authoring platform through which ICD-11 is being drafted.

As the Minutes of the April RSG meeting are not yet available, it remains unclear how on target the alpha draft is or whether the goals for 2010 have had to be revised. (See Page 7, ICD-11 Revision Project Plan – Draft 2.0 for Project milestones and budget, and organizational overview.)

When the RSG does release information on the status of the alpha draft and the operational status of the iCAT, I will post an update.

In the meantime, I have raised a number of queries around the status of the alpha draft, whether the RSG intends to make a draft available for public viewing, at what point, and in what format(s). I have also asked for information about the availability of Topic Advisory Group proposal forms for stakeholder input, up to what stage in the development process timeline these might be used, and which stakeholders are going to be permitted to make use of proposal forms.

 

iCAT production server

In the posting ICD-11 Alpha Draft scheduled to launch between 10 and 17 May, 6 May, I reported that it is already possible to view a “Demo and Training iCAT Platform” and also access the iCAT production server.

I cautioned that until an official ICD-11 Alpha Draft is released, it cannot be determined how far the various Topic Advisory Groups have progressed with revising classifications and populating textual content according to a common “Content Model” for the ICD Chapters and categories of interest to us [Key document 1b].

I noted that the Demo and Training iCAT Platform, at that point, was sparsely populated for content and that the classifications and codings listed within the various chapters appeared to have been imported from ICD-10, with little discernable change – presumably as the starting point for the drafting process.

A revised Demo and Training iCAT Platform is now accessible, the content of which is also viewable on the iCAT production server and it is to these proposed revisions that I want to draw your attention.

Note that anyone can view the Demo and Training iCAT Platform and iCAT production server but only WHO, ICD Revision and IT personnel and the Managers and members of the various Topic Advisory Groups (TAGS)will have editorial access. External reviewers recruited by TAG Managers will also use the iCAT to upload reviews and comment on proposals and content.

I have compiled a series of screenshots and very brief notes on what is viewable at the moment for the chapters and categories of interest to us.

Note: Screenshots are taken from the Demo and Training iCAT Platform and iCAT production server as they stood at 24 May 2010. Alpha drafting is an ongoing process and what currently appears may be subject to revision, refinement and additions before an official Alpha Draft is released. Not all the classification and content work currently undertaken may have been entered into the iCAT.

Note also that when viewing the iCAT in your browser, the left hand side of the screen displays the ICD Categories listings with the category Definition, Term, Clinical Description, Diagnostic Criteria etc displaying on the right of the screen. Because this view is too wide to display on my website template, the screenshots have had to be split in two. On your screen the iCAT will look like this:

 

When you have read this report and familiarised yourself with the way the iCAT functions, I suggest you poke around – you can’t break anything as members of the public have no editing access.

All screenshots as they stood at 24 May 2010

A wiki-like Collaborative Authoring Tool (known as the iCAT)) is being used for the initial authoring of the alpha draft.

The iCAT production server and Demo and Training iCAT Platform can be accessed here:

https://sites.google.com/site/icd11revision/home/icat

iCAT production server at: http://icat.stanford.edu/

Demo and Training iCAT Platform at: http://icatdemo.stanford.edu/

Load either (they may take a minute or more to load and appear less inclined to hang in Firefox).

One loaded, you will be presented with an Entry Page – this is the My ICD Tab

Welcome to iCAT – the Initial ICD 11 Collaborative Authoring Tool!

Select the ICD Content Tab and ICD Categories by chapter will populate down the left side of the screen.

Scroll down and open up the + next to 06 VI Diseases of the nervous system

ICD Categories:

 

Scroll down and note that ICD-10 codings between G83.9 and G99.8 are being reorganised and have been assigned the labels GA thru GN (some of which, like GN, are parent categories with child and grandchildren categories).

Open up the + next to GN Other disorders of the nervous system

which is a parent to category Gj92 Chronic fatigue syndrome

(Note: Gj92 is known as a “Sorting label”. A Sorting label is a string that can be used to sort the children of a category. This is not the ICD code.)

Note that Postviral fatigue syndrome and Benign myalgic encephalomyelitis are not currently accounted for in the ICD Categories List as children of the parent category GN Other disorders of the nervous system. Only Chronic fatigue syndrome is listed and assigned the Sorting Label “Gj92”. [See Glossary: Inclusions]

 

 

Click on the double speech bubble icon next to Gj92 Chronic fatigue syndrome which will display 1 Category Discussion Note (Click Expand to display the full note. Discussion Notes can also be accessed via the Category Notes and Discussions Tab, from which the screenshot below, orginates).

Discussion Note for Gj92 Chronic fatigue syndrome:

This Discussion Note records a Change in hierarchy for class: G93.3 Postviral fatigue syndrome because its parent category (G93 Other disorders of brain) is removed.

Note that the removal of the parent G93 Other disorders of brain will affect other categories also classified under G93 in ICD-10, not just G93.3. Open up the double speech bubble icons next to other category listings and you can view the Discussion Notes on proposed restructuring for other G8x and G9x categories.

Next, with the ICD Content Tab selected, click on Gj92 Chronic fatigue syndrome and the Details for Gj92 Chronic fatigue syndrome will display on the right side of the screen. Allow a few moments for the text in the boxes to load.

With the Title & Definition Tab selected (the Tab may read Definition only, depending on whether you are viewing the iCAT production server or the Demo iCAT), you can view the

Details for Gj92 Chronic fatigue syndrome

To view a Glossary of Terms page, which defines the terms in the Tabs click on the blue question mark icons which will load the iCAT Glossary.

Content for Gj92 Chronic fatigue syndrome:

[See Glossary: Definition] The full text of External Definitions (imported from affiliate classification publications) which is partly hidden in the screenshot, is appended at end of this post. According to discussion on the iCAT Users Google Group, it is proposed that External Definitions might be given less prominence when displaying in the iCAT.

 

Now click on the Terms Tab.

Terms for Gj92 Chronic fatigue syndrome:

Benign myalagic encephalomyelitis currently appears listed under Inclusions to Gj92 Chronic fatigue syndrome.

Note that Postviral fatigue syndrome is not listed under Inclusions and that Synonyms and Exclusions for Gj92 Chronic fatigue syndrome have yet to be populated. [See Glossary: Synonyms, Inclusions, Exclusions]

Very few of the other Content Tabs have been populated but it is envisaged that they will be in due course.

I provide no screenshots for Benign myalagic encephalomyelitis or Postviral fatigue syndrome because these are not listed in the ICD Categories List. [See Glossary: ICD Title, Synonyms, Inclusions, Exclusions]

Extract from the iCAT Glossary

6. Inclusions

Short definition: Inclusion terms are either synonyms of the category titles or subclasses which are not represented in the classification hierarchy.

Details: Inclusion terms appear in the tabular list of the traditional print version and show users that entities are included in the relevant concept. All of the ICD-10 inclusion terms have been imported and accessible in the iCat. These are either synonyms of the category titles or subclasses which are not represented in the classification hierarchy. Since we have synonyms as a separate entity in our ICD-11 content model, the new synonyms suggested by the users should go into the synonyms section. In the future, iCat will provide a mechanism to identify whether an inclusion is a synonym or a subclass.

7. Exclusions

Short definition: Exclusion terms help users eliminate entities that should be assigned to a different ICD category because of differences in meaning or terminology.

Details: Exclusion terms help users eliminate entities that should be assigned to a different ICD category because of differences in meaning or terminology.

 

I am including some screenshots of other Chapters which will be of interest.

Chapter 5 (V) Somatoform Disorders at F45 (currently same as or near ICD-10):

 

Neurasthenia remains in Chapter 5 (V) at F48.0:

 

Inclusions and Exclusions for Neurasthenia:

 

Chapter 18 (XVIII) displaying R53 Malaise and fatigue (this is the Chapter under which the US Clinical Modification, ICD-10-CM, proposes classifying Chronic fatigue syndrome, at R53.82):

 

Inclusions and Exclusions for R53 Malaise and fatigue:

 

Here are the two Category discussion Notes that appear directly beneath 06 VI Diseases of the nervous system (no ICD10 concepts from Chapter 06 VI are currently moved into either of these “holding pens”).

1 Discussion Note for: Needing a decision to be made

 

1 Discussion Note for: To be retired

________________________________________________________________________

  

External Definitions: (Imported from affiliate classification publications, these remain the same as my 6 May posting.)

External Definitions for Gj92 Chronic fatigue syndrome

A syndrome of unknown etiology. Chronic fatigue syndrome (CFS) is a clinical diagnosis characterized by an unexplained persistent or relapsing chronic fatigue that is of at least six months duration, is not the result of ongoing exertion, is not substantially alleviated by rest, and results in substantial reduction of previous levels of occupational, educational, social or personal activities. Common concurrent symptoms of at least six months duration include impairment of memory or concentration, diffuse pain, sore throat, tender lymph nodes,headaches of a new type, pattern, or severity, and nonrestorative sleep. The etiology of CFS may be viral or immunologic. Neurasthenia and fibromyalgia may represent related disorders. Also known as myalgic encephalomyeltis.

Ontology ID UMLS/NC12007_05
E

distinctive syndrome characterized by chronic fatigue, mild fever, lymphadenopathy, headache, myalgia, arthralgia, depression, and memory loss: candidate eitiological agents include Epstein-Barr and other herpesviruses.

Ontology ID UMLS/CSP2006

A syndrome characterized by persistent or recurrent fatigue, diffuse musculoskeletal pain, sleep disturbances, and subjective cognitive impairment of 6 months duration or longer. Symptoms are not caused by ongoing exertion; are not relieved by rest; and result in a substantial reduction of previous levels of occupational, educational, social or personal activities. Minor alterations of immune, neuroendocrine, and automatic function may be associated with this syndrome. There is also considerable overlap between this condition and FIBROMYALGIA.
(From Semin Neurol 1998;18(2):237-42: Ann Intern Med 1994 Dec 15;121(12):953-9)

Ontology ID UMLS/MSH2008_2
008_02_04

 

Based only on the information visible in the iCAT as it stood at 24 May 2010, it appears that instead of:

ICD-10 (version for 2007) Tabular List

http://apps.who.int/classifications/apps/icd/icd10online/?gg90.htm+g933

Chapter VI (6)

Diseases of the nervous system
(G00-G99)

[…]

Other disorders of the nervous system
(G90-99)

[…]

G93 Other disorders of brain

[…]

G93.3 Postviral fatigue syndrome
Benign myalgic encephalomyelitis

(with Chronic fatigue syndrome indexed to G93.3 in Volume 3: The Alphabetical Index)

that what may be being proposed at this point is:

that G83.9-G99.8 codes in ICD-10 Chapter VI: Diseases of the nervous system are being restuctured;

that G93 Other disorders of brain is removed as a parent category for G93.x codings;

that GN Other disorders of the nervous system

is now the parent to a large number of categories previously classified between G83.9 and G99.8

that GN Other disorders of the nervous system is the parent to

Gj92 (Sorting label) Chronic fatigue syndrome

that Gj92 Chronic fatigue syndrome is included in ICD-11 Chapter 06 VI Diseases of the nervous system (Neurology chapter) in the ICD Categories list as an ICD Title term;

that there is currently displaying no Gj9x Sorting label (or any other Sorting label) listing for Postviral fatigue syndrome or Benign myalgic encephalomyelitis in ICD Categories list or any Category Details for either term;

(Whether this is because Inclusion terms appear in the tabular list of the traditional print version but not in the iCAT version, or because of proposed hierarchy changes to the relationship between these three terms or because text remains to be entered into the iCAT for these two terms, cannot be determined from the information available at 10 June – please refer to Glossary of Terms which sets out the relationships between an ICD Title and its inclusion in the iCAT Categories list and between an ICD Title and its Synonyms, Inclusions and Exclusions.)

that Gj92 Chronic fatigue syndrome is an ICD Title term with a Details page, a Definition and an Inclusion term (but with no Synonyms or Exclusions or other fields yet populated);

that Benign myalgic encephalomyelitis is listed as an Inclusion to Gj92 Chronic fatigue syndrome

that Chapter 5 V Details for F48.0 Neurasthenia specifies
“postviral fatigue syndrome” as an Exclusion with References

G93.3 -> Gj92 Chronic fatigue syndrome

that Chapter 18 XVIII Details for R53 Malaise and Fatigue specifies
“fatigue syndrome postviral” [sic] as an Exclusion with References

F48.0 -> F48.0 Neurasthenia,
G93.3 -> Gj92 Chronic fatigue syndrome

but that in the absence of further information, it is currently unclear what the proposed hierarchical status of Postviral fatigue syndrome and Benign myalgic encephalomyelitis will be in relation to Chronic fatigue syndrome, and in relation to each other.

I shall continue to monitor the iCAT production server closely and report on any changes to proposals for Category listings and on the progress of the population of content.

 

[1] Key documents:

a) ICD-11 Revision Project Plan – Draft 2.0 (v March 10) [PDF format]
Describes the ICD revision process as an overall project plan in terms of goals, key streams of work, activities, products, and key participants.

b) Content Model Specifications and User Guide (v April 10)
Identifies the basic properties needed to define any ICD concept (unit, entity or category) through the use of multiple parameters.

c) Alpha Drafting Workflow (v 06.10.09)
Sets out lines of responsibility between the various contributors for the alpha drafting phase.

d) Further documents eg Style Guide, ICD-11 Conventions:
ICD Revision Google site