RiME: NHS Services Inquiry Notice 6 26 June 2009

Campaigning for Research into Myalgic Encephalomyelitis (RiME)

NHS Services Inquiry

I received the email (below) form Des Turner’s pa on Wed. June 24. It might help if you are scrambling to get something in.

Please note that there are different deadlines:

(1) for written evidence it is June 30 2009
(2) for questionnaire it is July 20 2009.

If you are sending evidence throught the post, Des Turner’s address at Westminster is:

Dr Des Turner MP, House of Commons, London, SW1A OAA.
Website address for Inquiry   www.appgme.org.uk
______________________________________________________________________

Dear Paul,

My apologies for not contacting you sooner however I only volunteer with the ME APPG once a week and was unable to attend last week. In regards to your question, we will be more than happy to accept submissions without an executive summary and numbered paragraphs. These are the rules for submission used by House of Commons Select Committees and is often used for APPG inquiries as it is a tried and true method. As APPGs are not stringently required to work along these lines, we are happy for ME patients to submit their evidence in a way best suited to them as long as they are able to answer each question that is relevant to them. This is so we can get as detailed a picture as possible. We also don’t need a phone number – inclusion of names and details are generally simply for our records and also to invite witnesses to give oral evidence if their written evidence raises a number of pertinent questions that the Group feels would be worth follow-up.

As long as we have a physical or email address to invite any patients to give oral evidence, we won’t need a phone number. I hope this answers your questions and please feel free to distribute my answer to your friends and colleagues. The Group is only too aware of the damage and drain that ME has on patients, so we very much appreciate the amount of effort this questionnaire requires and hopefully the Group can work with sufferers and support groups to ensure that the best treatment possible is on offer to everyone.
Regards,

Nick

——————————

Have you submitted evidence to the Inquiry? If so, please send us copy for RiME Evidence Bank (anonymity respected).

RiME Evidence Bank:

http://www.rime.me.uk/NHS_SERVICES_INQUIRY.htm

Paul Davis 10 Carters Hill Close, Mottingham, London SE9 4RS  rimexx@tiscali.co.uk  

www.rime.me.uk

ME in Westminster: Debate: Welfare Reform Bill 18 June 2009

Source: UK House of Lords
Date: June 18, 2009
URL: 
http://www.publications.parliament.uk/pa/ld200809/ldhansrd/text/90618-gc0003.htm

Ref: 
http://www.me-net.combidom.com/meweb/web1.4.htm#westminster
 

[Debates]

Welfare Reform Bill

Amendment 55 – Moved by The Countess of Mar

55: Clause 2, page 7, line 5, at end insert -
‘( ) must be reasonable, having regard to whether the person has a condition with fluctuating signs and symptoms, and the nature of that condition;’

The Countess of Mar

I shall also speak to Amendments 90 and 93. In doing so, I declare a non-pecuniary interest as chairman of Forward ME and patron of a number of ME charities. The amendment moved by the noble Lord, Lord Rix, was about people  who want to go to work and are sometimes not thought fit to do so. I want to discuss people who are deemed fit to go to work but who are not fit to do so. The Minister will understand from long experience why I am concerned about this particular group of people. I explained in some detail at Second Reading the problems that they have when encountering the benefits system.

ME, or CFS/ME as it is known by some, is a condition that affects approximately 250,000 people. Many are young and a majority are women. Some who developed the illness in their teenage years have never been able to work; they have not qualified for contribution- based benefits and are totally dependent on income support. I wish that I did not have to say it again, but I feel that I must. CFS/ME is recognised by the World Health Organisation and the Department of Health as a neurological disease of unknown aetiology. Some 5,000 peer-reviewed and published scientific papers indicating various aspects of the central nervous, immune and hormone systems that are affected go some way to explaining the fluctuating nature of the condition. Yet, the view persists that this is a psychosomatic illness that is easily cured by a course of CBT and GET.

In 1994 I met Dr Aylwood when he was head of the Benefits Agency medical services. At that stage, he arranged for the doctors? training manual to be rewritten to take into account people with fluctuating illnesses. Fifteen years on, the message has still not been received. I do not know whether the noble Lord has received a copy of the letter that I left for him yesterday. It is a letter from a lady called Jayne Thomas who wrote:

‘Dear Countess,
I am enclosing, for your information, a copy of an appeal letter that I have just sent to the Department of Work & Pensions/Job Centre as they seem to think that my condition has no impact on my ability to work’.

I have no compunction about reading this letter because it says exactly what I have been trying to say for years. This is her appeal letter:

‘With reference to your decision to stop the above’

- her ESA claim -

‘I am writing to appeal against this decision as I believe it is wrong and was stunned to see that you have given me 0 (ZERO) points for my claim. Firstly, please note that you sent the ESA65 to the wrong address’

- we go back to the comments of the noble Lord, Lord Rix, earlier this week -

‘(I advised you at the end of April and many times since of my new address), the letter advising your refusal to continue to pay me arrived at the right address at the top of this letter. Both these letters had the same date on them and I would appreciate it if all future correspondence has the right address (as at the top of this letter). This may explain why a cheque went missing at the beginning of May (I am still awaiting reimbursement for this missing cheque). I would like to appeal on the following grounds;

1. At the medical assessment the Doctor from your contractor, ATOS, saw me for just 20 minutes and assured me that NO decision would be made to stop my ESA without full consultation with my GP/specialists who have been seeing me since my illness began. I spoke to my GP/ Specialist yesterday and they confirm that they have had no correspondence with yourselves.
2. With reference to your ?point scoring?, I disagree as follows;
a. Walking 0 points
I have explained to you that I am unable to walk any distance without exacerbating my condition and increasing the pain in legs. At times, I am unable to walk even short distances and a specialist only recently suggested that I may have to ask the school, where I take my son, that I get special permission to drive onto the school site to avoid the walk from the car to the school.
b. Standing & Sitting 0 points
Again, I have already explained that I cannot stand in one position for very long at all and if I sit down for too long, the pain in my legs becomes intolerable.
c. Bending & Kneeling 0 points
Again, I explained that I am totally unable to kneel or squat. When your Doctor at the assessment asked me to squat, I was unable to do this and he urged me to stop when he could see I was in pain.
d. Remaining Conscious 0 points
The extreme fatigue I suffer from can cause periods of debilitating tiredness.
e. Memory & Concentration 0 points
My condition causes short-term memory loss and if I push beyond my boundaries, concentration can become very difficult. If I try to read a novel, I am restricted to only a couple of pages where I can concentrate on the plot, if I push on I end up in pain (this was explained to your Doctor)
f. Starting Jobs & Keeping on with them AND Doing & Finishing Jobs 0 points
I have explained to you that I am unable to start some tasks, let alone finish them. The debilitating fatigue and pain I suffer from can make performing a task such a cooking a meal very difficult and I quite often rely on my husband for this as I do for other household tasks’.

She then says – and this is significant:

‘By refusing to continue giving me benefit, you are saying that I am fit for work. I had held down a very responsible job, which I thoroughly enjoyed, for 10 years until I was dismissed on grounds of ill health on 27 February 2009. Both my employer and myself made every effort to get me back to work last year. I entered a long period of rehabilitation with them from July? the end of September where I gradually returned to work. I went back to work properly at the end of September but was unfortunately only able to sustain this return for 6 weeks. At this point, I suffered a terrible relapse which left me unable to cope with the most basic of tasks’.

I will not go on. I think that I have said enough to make it clear what is going on. I am aware that benefits claimants who have CFS/ME, when called for a medical examination or interview, will do their best to perform the tasks given to them. They will have rested for the day prior to their encounter. They may find it difficult to describe their illness or what they are feeling at the time because they have recognised cognitive problems. They may omit to reveal important factors because they are tired after travel. They will often be able to do what is asked of them physically but very soon afterwards they will collapse from their exertions and may take several days to recover.

I know that the noble Lord is aware of this. However, unless all DWP staff, including the agency medical practitioners and the contractors, are convinced that ME/CFS sufferers are not inadequate attention seekers looking for sympathy and are trained and made thoroughly aware of the nature of this illness, there is a risk that people with ME/CFS are going to be harassed and distressed and made more sick than they already are. Who will be legally responsible if a claimant complies with nstructions for fear of losing benefits and is made seriously or irreversibly more ill?

I have come across none who are not eager to be able to lead a normal life. They desperately want to be able to rejoin society and to become financially independent. Most have tried repeatedly to return to a normal life only to suffer repeated setbacks. This is why they are so strident in their requests to Her Majesty’s Government for funding for biomedical, rather than psychiatric, research into their illness. At the moment there is no definite cause or cure. This is not a reason to penalise sufferers or even to frighten them with threats of benefit cuts if they do not comply. I am not suggesting that everyone in this group should be left to moulder in their illness and not be offered assistance in an attempt to resume a normal life. I am asking that they are not penalised if they fail to meet the expectations of their adviser or cannot maintain a consistent work pattern.

There are a number of other illnesses in this group, such as irritable bowel syndrome, fibromyalgia and multiple chemical sensitivity, which equally should be recognised and their sufferers treated with sensitivity. I beg to move.

Baroness Thomas of Winchester

We are assured at every turn that those with fluctuating health conditions, such as ME, MS, rheumatoid arthritis and mental health problems, who are in the employment group of ESA, and therefore in the progression-to-work group, will be considered sympathetically by Jobcentre Plus staff before being directed to work-related activity. The now former Minister in the other place said that, ‘a person’s health is always considered, so there is no need for that to be prescribed in the Bill’. – [Official Report, Commons, Public Bill Committee, 24/2/09; col. 140.]
However, that is not the experience of many people with fluctuating conditions, as the noble Countess, Lady Mar, has so powerfully said today and on many occasions. It is all too possible for someone who is experiencing a good day when they see either a disability benefits adviser or a personal adviser for their condition not to be recognised adequately. The adviser should have a report following a work-related health assessment about a person’s condition, which indicates whether it is a fluctuating condition. I would be interested to hear if this is always the case. However, this assessment would not include any report from a person’s GP or consultant which might confirm the fluctuating nature of the condition. I wonder why that is so. It is a matter of public record that the new Secretary of State for Work and Pensions has suffered from ME. We therefore hope that she will be sympathetic to this point, if not to the wording of the amendment.

(…)

Lord Skelmersdale

(…)

Again, I have to declare an interest in that I have a son-in-law with severe ME. He finds that at moments he is able to do quite normal things. But then, a few hours later, he will collapse for another two, three, four or five days. If you have an assessment in a good period, it is extremely difficult- this was the point made by the noble Baroness, Lady Ashfar – to come to a realistic conclusion of what may happen in the rest of the week or month. How you train people to have proper observation or realisation of that fact is beyond me. But there must be better brains than mine around the system who could get to the bottom of it. Until we do, all hope for the people whom the noble Countess has been talking about is lost.

(…)

[Amendment 55 withdrawn].
(c) 2009 Parliamentary copyright

The Elephant in the Room Series Two: ICD-10 Version for 2006 Volume 3 Alphabetical Index

Image | belgianchocolate | Creative Commons

Keywords

APA    DSM    DSM-IV    DSM-V    WHO    ICD    ICD-10    ICD-11    American Psychiatric Association    Diagnostic and Statistical Manual of Mental Disorders    World Health Organization    Classifications    DSM Revision Process    DSM-V Task Force    DSM-V Somatic Distress Disorders Work Group    Somatic Symptom Disorders Work Group    DSM-ICD Harmonization Coordination Group    International Advisory Group    Revision of ICD Mental and Behavioural Disorders    Global Scientific Partnership Coordination Group    ICD Update and Revision Platform    WHO Collaborating Centre    CISSD Project    MUPSS Project    Somatoform    Somatisation    Somatization    Functional Somatic Syndromes    FSS    MUS    Myalgic encephalomyelitis    ME    Chronic fatigue syndrome    CFS    Fibromyalgia    FM    IBS    CS    CI    GWS

 

The Elephant in the Room Series Two:

ICD-10, 10th Revision Version for 2006, Volume 3 Alphabetical Index

On 17 June, I received a communication from the Legal Compliance Officer for the Institute of Psychiatry, King’s College London, in which I was advised:

“Dr Sykes’ original report, which was submitted to Action for ME and the Hugh and Ruby Sykes Charitable Trust, contained an inaccuracy, as has been previously discussed (since Chronic Fatigue Syndrome [CFS] is not listed in the main list of neurological disorders in Vol. I of ICD-10, the original report stated, wrongly, that there was no mention of CFS in ICD-10. In fact there is a mention of CFS in Vol.3, the Index).”

“…This inaccuracy was brought to the attention of Action for ME and the Hugh and Ruby Sykes Charitable Trust. The summary report (sent to you on 2 June) corrects the inaccuracy, and has been communicated to them. Dr Sykes believes that this inaccuracy makes no substantial difference to the conclusions of the report.”

This statement from Legal Compliance confirms that the unofficial CISSD Project was initiated, funded, administered and supported by Action for M.E. and co-ordinated by Dr Richard Sykes on the premise that there was no mention of Chronic Fatigue Syndrome in ICD-10.

A copy of ICD-10 Volume 3 Alphabetical Index, to which the Institute of Psychiatry’s Legal Compliance Officer refers, can be accessed, via Scribd at:

ICD-10

International Statistical Classification of Diseases and Related Health Problems

10th Revision Version for 2006

Volume 3 Alphabetical Index

(770 pages For the entry in question, see page 528, top right hand column)

The following documents are also available from the same page:

ICD 9-CM 2005

ICD-10 2006 Tabular List

Standard Coding Guideline ICD-10-TM 2006

ICD-10 [Update 2007]

———————

This statement in the original December 2007 CISSD Project report:

“Despite claims to the contrary, the classification of CFS is still an open issue. CFS and CFS/ME are not mentioned either in the latest edition of ICD (ICD-10), or in the latest edition of DSM (DSM-IV).”

was amended in the “Summary report” provided by Dr Sykes to the ME Association (published 3 June 2009) to read:

“2.2 Somatoform Disorders, the International Classifications and CFS

There are still problems associated with the classification of CFS. It is true that CFS is listed under “syndrome” in Volume III, the Index, of ICD-10 and placed in G93.3, a category of neurological illness. But there remain the problems:

“(1) some psychiatrists and others contest this classification of CFS as a neurological disorder,

(2) “fatigue syndrome” is listed in ICD-10 as F48, a mental disorder – which creates the apparent anomaly that “fatigue syndrome” is a mental disorder, but “chronic fatigue syndrome” is a neurological disorder, and

(3) the classification of CFS as a neurological disorder does not seem to be fully integrated into ICD-10.

As far as I have discovered this seems to be the only reference to CFS in all the relevant ICD -10 volumes. For example, CFS is not mentioned in main Volume 1, the Tabular List, of ICD-10 – where one would expect it to be – nor is it included in the current (2007) online version of ICD-10.

It is also true that the WHO gave permission in 2004 for the UK adaptation of the WHO primary care management and diagnostic guidelines on mental health, which in this edition expanded to include some common neurological conditions. This edition of the good practice diagnostic and management guidelines follows the ICD-10 Index code for CFS as G93. It remains to be seen, however, whether this practice will be followed in ICD-11.”

The “Summary report” on the CISSD Project, published by the ME Association on 3 June, can be read here:

http://meagenda.wordpress.com/2009/06/03/cissd-project-report-from-dr-richard-sykes/

———————

The “Summary report” drew upon content in the December 2007 report provided to Action for M.E. at the end of the Project’s life. But some sections are worded differently and Appendix B in the December 2007 report does not appear at all in the document that has been published by the ME Association.

The full December 2007 report for Action for M.E. can be read here:

http://meagenda.wordpress.com/2009/06/08/the-redacted-bits-sykes-cissd-report-for-the-mea/

The CISSD Project and CFS/ME, Report on the CISSD Project (Conceptual Issues in Somatoform and Similar Disorders) for Action for ME Richard Sykes
December 2007

———————

I include some extracts, below, including the missing Appendix B, followed by a brief commentary:

[...]

CFS and the International Classifications

[...]

Despite claims to the contrary, the classification of CFS is still an open issue. CFS and CFS/ME* are not mentioned either in the latest edition of ICD (ICD-10), or in the latest edition of DSM (DSM-IV).**

[*Ed: The WHO does not use the composite term "CFS/ME" and describes NICE's use of this term as "unfortunate". **This statement was revised in the "Summary report" published by the ME Association, as set out, above.]

[...]

It is true that in 2004 permission was given by the WHO for the UK to adapt the WHO classification for the purposes of Primary Care in the UK and that on this basis a classification has been produced for use in the UK which lists CFS and CFS/ME as a neurological disorder. While many consider that this is a step in the right direction, this classification is a UK adaptation only and has not been formally adopted by the WHO. It has no validity in other countries. No formal decision has yet been made by the WHO and it is still an open question what the official WHO classification of CFS and CFS/ME will be in the next revision. (See also App B.)

[Ed: This statement was also revised in the "Summary report" published by the ME Association, see above.]

[...]

In addition to coordinating the CISSD project and taking part in the CISSD workshops, my own activities have included travel to meet the main international figures involved in these issues and the organization of a separate workshop on CISSD topics as part of an international conference in Croatia. In addition I gave two presentations at that workshop and further presentations at two other international conferences (in Germany and The Netherlands) and at professional conferences in London*, Oxford and Leeds (See App C). I have also produced the co-ordinator’s report on the project.

[Ed: *Melvin Ramsay Society Meeting, April 2007, attended by Dr Charles Shepherd, ME Association, who also gave a presentation. The presentation given by Dr Richard Sykes: "Conceptual Issues in the Classification of ME/CFS" and the Meeting Agenda were advertised by the ME Association on their website.]

[...]

While it is not a foregone conclusion that in the next international revisions CFS will be classified as a “general medical condition” or physical disorder and not as a mental disorder, the CISSD project will increased the likelihood that CFS and CFS/ME* will be so classified.

[*Ed: WHO ICD does not use the composite term CFS/ME.]

[...]

[Ed: Notes 1-3 do appear in the June '09 "Summary report" published by the ME Association but are included here, for context.]

Notes

Note 1, I am most appreciative of the help given by Professor John Bradfield, former Professor of Histopathology at Bristol University, in compiling this report. In addition, he has made numerous other most valuable contributions as Project Advisor to the CISSD Project.

Note 2. There are, most confusingly, a few exceptions to this rule in ICD-10. For example, Irritable Bowel Syndrome is classified both as a disorder of the Digestive System (K 58) and as a Somatoform Autonomic Function Disorder (F45.32) – a mental disorder.

Note 3. The situation is more complex in ICD-10, since ICD-10 includes, besides Somatoform Disorders, a further possible pigeonhole for CFS/ME. This is the subcategory of “Neurasthenia” which ICD-10 includes in addition to the category of Somatoform Disorders. While the project did not specifically address the problems associated with Neurasthenia, there are some strong objections to the subcategory of Neurasthenia and it is possible that this subcategory will be omitted in the next revision of ICD-10.

CFS and CFS/ME are not listed in ICD-10* and of the 4 related conditions that are listed (post-viral fatigue syndrome, benign myalgic encephalomyelitis, neurasthenia, fatigue syndrome), 2 are listed as neurological disorders and 2 as mental disorders. On the one hand “post-viral fatigue syndrome” is classified as a neurological disorder with the code number G33.3 [sic]. In CDDG this is said to include “benign myalgic encephalomyelitis”. Although the adjective  “benign” has long since been dropped and although most users of the term ME now say that ME should stand for Myalgic Encephalopathy, rather than Myalgic Encephalomyelitis** (since there is no evidence of encephalomyelitis), this would appear to be a good reason for saying that ME is implicitly classified as a neurological disorder. (Since G33.4 [sic] is the code for encephalopathy, it would seem that this code rather than G33.3 [sic] is now the more appropriate code for ME.***)

[...]

Appendix B How does the WHO currently classify CFS/ME?

“CFS/ME” (Chronic Fatigue Syndrome/Myalgic Encephalomyelitis or Myalgic Encephalopathy) is the composite name used by the UK Department of Health and other organizations to refer to a condition that has been named and defined in a variety of ways. Generally speaking, “CFS” tends to be preferred by health professionals, “ME” by patients.

Background

The main WHO (World Health Organization) classification of diseases and disorders is the International Statistical Classification of Diseases and related Health Problems (ICD). This classification is a classification of all disorders and related health problems and contains one chapter, chapter V, which is concerned solely with “mental and behavioural disorders”. The classification is revised periodically: the latest revision is the tenth revision (ICD-10) which was published in 3 volumes; Vol P A Tabular List in 1992, Vol 2: Instruction Manual in 1993 and Vol 3: Index in 1994.

Also produced from 1992 onwards was a separate series of volumes that dealt solely with mental and behavioural disorders, the subject of chapter V of ICD. Although the glossary provided by chapter V of ICD was considered adequate for use by coders or clerical workers, it was not recommended for use by health professionals. The first and central volume of the additional series was The ICD-10 Classification of Mental and Behavioural Disorders. Clinical descriptions and diagnostic guidelines (CDDG), produced in 1992, which was intended for general clinical, educational and service use. (Other volumes in this series included The ICD-10 Classification of Mental and Behavioural Disorders. Diagnostic Criteria for Research (DCR), and Diagnostic and Management Guidelines for Mental Disorders in Primary Care; ICD-10 Chapter V Primary Care Version.)

Is CFS/ME classified as a neurological or as a mental disorder in ICD-10?

[Ed: *This statement has been corrected in the "Summary report" published by the ME Association.

**Dr Sykes provides no supporting evidence for this statement.

***Dr Sykes provides no medical evidence to support his proposal that it would be more appropriate for "Myalgic Encephalopathy" to be classified at the same coding as "Encephalopathy" (G93.4), rather than at G93.3, where "Benign myalgic encephalomyelitis" has been coded for many years.]

On the other hand “neurasthenia” is classified as a neurotic disorder with the code number F48.0 and CDDG states that this includes “fatigue syndrome”. So it could be argued that CFS should be classified as a neurotic, and hence, a mental disorder. A case could also be made for coding some cases of CFS as F45 Somatoform Disorders, either as F45.1, the code for Undifferentiated Somatoform Disorder or as F45:3, the code for Somatoform Autonomic Dysfunction, or as F45.9, the code for Somatoform Disorder, Unspecified. All these are codes for mental disorders.

This presents a problem for CFS/ME. If ME is stressed, then it could be argued that CFS/ME should be classified as a physical disorder, since benign myalgic encephalomyelitis is classified as a neurological disorder. On the other hand, if Chronic Fatigue Syndrome is stressed then it could be argued that CFS/ME should be classified as a mental disorder, since fatigue syndrome is classified as a neurotic disorder.

Developments since 1992

In 2004 the WHO Guide to Mental and Neurological Health in Primary Care, Second Edition, was published by the Royal Society of Medicine Press. This was described on the cover and in the frontispiece as “Adapted for the UK, with permission, from Diagnostic and Management Guidelines for Mental Disorders in Primary Care: ICD-10 Chapter V Primary Care Version”.

In this volume the main term used is Chronic Fatigue Syndrome (CFS), which is said to be also referred to as ME (Myalgic Encephalomyelitis or Myalgic Encephalopathy) or as CFS/ME, and this is coded as G93.3. G.93.3 is the code for post-viral fatigue syndrome, a neurological disorder.

So does this settle the matter? Is CFS/ME now officially classified by the WHO as a neurological, not as a mental disorder?

Unfortunately the matter is not quite so simple, for a number of reasons. In the first place the 2004 publication is described as “adapted for the UK, with permission”. This means that it is not applicable in countries outside the UK, in Germany or France etc.. It does not have international applicability. Secondly, even in the UK it applies only to Primary Care (GP level). It does not claim to be applicable to Secondary Care (hospital level).

Thirdly, even in the UK it does not claim to be an official WHO classification. It is an initiative of the UK WHO Collaborating Centre, one of many of the Collaborating Centres worldwide, and is backed by the English Department of Health and a number of other organizations and individuals. It is not an authoritative WHO classification but is intended simply to provide helpful recommendations which UK GPs may use or not use as they wish. In the UK a GP may use any of a number of competing classifications. These include the International Classification of Health Problems in Primary Care (ICHPPP), the Read Codes, and a triaxial classification. They can also choose not to use a classification system at all.

Summary

“CFS” and “CFS/ME” are not listed in ICD-10 and this leaves room for debate as to how they should be listed. The UK WHO Collaborating Centre, with the support of the Department of Health and other organizations, proposed in 2004 that they should be coded as G33.3 [sic], the code for a neurological disorder. These proposals are undoubtedly encouraging for the ME patients’ organizations, who will hope that this initiative will be confirmed in the next revision of ICD-10, but they are not yet official recommendations by the WHO. There remains confusion and debate about how CFS/ME fits in to the official WHO classification.

A note on DSM-IV.

DSM-IV is the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, produced by the American Psychiatric Association. It has been extensively researched and is in widespread use worldwide.

In DSM-IV there is equally no mention of CFS, but neurasthenia is mentioned and is subsumed under Undifferentiated Somatoform Disorder, one of the Somatoform  Disorders. There is an extensive overlap between the symptoms of neurasthenia and of CFS and consequently some argue that this is where CFS should be placed. Against this it could be argued that CFS or ME or CFS/ME should be classified as G93.3 in ICD and hence should not have a place in a manual of mental disorders at all.

So for DSM-IV, too, there is the same uncertainty as to how CFS/ME should be classified.

[Extracts end]

Since the WHO doesn’t use and doesn’t like the composite term “CFS/ME” – it’s all rather muddled, isn’t it? And when presenting to the Ramsay Society meeting, in 2007, around the work of the CISSD Project, Dr Sykes used “ME/CFS”.

Read the review paper published by the CISSD Project leads in July 2007 (Psychosomatics) and you would not know that ME existed as a term in ICD; there is not a single mention of “CFS/ME” or “ME/CFS” or of existing ME and PVFS codings, because ICD and ICD codings are not mentioned at all, and “chronic fatigue syndrome” is only mentioned in passing as one of the so-called “Functional Somatic Syndromes”.

But the Project was described by Action for M.E. in 2006 as the “WHO Somatisation Project” and that “This grant is provided to help lobby the World Health Organisation for the recognition of M.E. and its re-catergorisation as a physical illness”.

What did Action for M.E. understand by that statement? What does it understand, now?

Dr Sykes has published no commentary on the most recent proposals of the DSM-V Somatic Symptoms Disorders Work Group.

In addition to the misconception around Volume 3, there are also other errors in the December 2007 report to Action for M.E. There are several instances in Appendix B where “G33.3″ and “G33.4″ have been used where this should have been “G93.3″ and (presumably) “G93.4″ (the classification code for Encephalopathy).

When Dr Sykes provides the Institute of Psychiatry’s Legal Compliance Officer with an authorised version of the text of the December 2007 report in order to  fulfil my outstanding request for information under the FOI Act, it is hoped that Dr Sykes will have acted on my suggestion that the document is accompanied by a Erratum Notice which addresses the errors and misconceptions in his original report.

One of the recommendations of the CISSD Project workgroup was support for the APA and WHO’s commitment “…to facilitate the achievement of the highest possible extent of uniformity and harmonization between ICD-11 mental and behavioural disorders and DSM-V disorders and their diagnostic criteria” with the objective that “the WHO and APA should make all attempts to ensure that in their core versions, the category names, glossary descriptions and criteria are  identical for ICD and DSM.”

It is worth noting that alliances of rare diseases patient organisations are already actively engaged in dialogue with  the ICD Rare Diseases Topic Advisory Group as it works on its proposals towards ICD-11.

But we have two chapters of ICD-11 to monitor – Chapter VI (G93.3 codes) and Chapter V: Mental and Behavioural Disorders (F45-F48 codes).

The chapter on ICD Mental and Behavioural Disorders is to be harmonized with DSM-V.

The target date for the release of DSM-V is 2012 and some field trials are expected to start this summer.

How many of our UK and international ME advocacy groups, patient organisations,  ME clinicians and researchers are currently engaged in dialogue with the APA and the WHO over the revisions of these complex and enmeshed classification systems?

———————

For the most recent update on the progress of the DSM-V Somatic Symptom Disorders Work Group:

http://tinyurl.com/DSMSDDWGApril09

For a more expansive report on the progress of this Work Group:

The proposed diagnosis of somatic symptom disorders in DSM-V to replace somatoform disorders in DSM-IV – a preliminary report  Journal of Psychosomatic Research, Editorial: June 2009
Joel Dimsdale and Francis Creed on behalf of the DSM Workgroup on Somatic Symptom Disorders

http://www.jpsychores.com/article/S0022-3999(09)00088-9/fulltext

(See section: “Psychological factor affecting general medical condition”)

For The Status of the CISSD Project unscrambled:

http://meagenda.wordpress.com/2009/06/10/the-elephant-in-the-room-series-two-status-of-the-cissd-project-unscrambled
/

For WHO statement on the use of the composite term “CFS/ME” see paragraph eight:
ME/CFS: TERMINOLOGY, Margaret Williams, 27 April 2009

http://www.meactionuk.org.uk/ME_CFS_TERMINOLOGY.htm

Psychiatric Times  maintains a page of resources for the current edition of DSM, DSM-IV, with updates, articles and commentary around the development of DSM-V.

MEA: Summary Board of Trustees meeting 15 and 16 June 2008

Summary of ME Association Board of Trustees meetings held on Mon 15 June and Tues 16 June, 2009

http://www.meassociation.org.uk/content/view/893/161/

This is a summary of key points to emerge from two meetings of The ME Association Board of Trustees. These meetings took place at our Head Office in Buckingham on Monday afternoon 15 June 2009 and on Tuesday morning 16 June 2009. Informal discussions also took place on a number of issues on the Monday evening.

After the Board meeting on Tuesday the charity’s AGM was held in the afternoon. Results of trustee elections were also announced. A brief summary of the AGM, along with the election results, and a short post-AGM Board meeting, is included at the end of this summary.

Please note that this is a summary of the Board meetings and AGM – not the official minutes.

The order of subjects below is not necessarily in the order that they were discussed.

PRESENT

Trustees:

Ewan Dale (ED) – Honorary Treasurer
Mark Douglas (MD)
Neil Riley (NR) – Chairman
Charles Shepherd (CS) – Honorary Medical Adviser
Barbara Stafford (BS)

Officials:

Gill Briody (GB) – Company Secretary
Tony Britton (TB) – Publicity Manager

Apologies:

Rick Osman (RO) – Vice Chairman

FINANCES

ED updated trustees on the current financial situation. Trustees then discussed the monthly accounts for the period up to April 2009. All of our main sources of income are holding steady and in some cases – ie donations and fundraising, literature sales, membership subscriptions – are slightly or significantly up on the same period last year. This is reassuring news given the difficult economic climate and the effect that this is having on the charity sector in general. Income for general funds is continuing to remain roughly in line with expenditure, despite the fall in interest rates on funds held. Trustees made some minor changes to banking arrangements in order to maximise interest rates on the various bank balances.

ME in Westminster, 5 May, 6 May, 13 May 2009

Source: UK House of Lords
Date: May 5, 2009
URL: 
http://www.publications.parliament.uk/pa/ld200809/ldhansrd/text/90505w0003.htm
 
Ref: 
http://www.me-net.combidom.com/meweb/web1.4.htm#westminster
 

[Written Questions]

Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

The Countess of Mar

To ask Her Majesty’s Government whether the National Institute for Health and Clinical Excellence guidelines on chronic fatigue syndrome/myalgic encephalomyelitis are to be reviewed; and, if so, when. [HL3075]

The Parliamentary Under-Secretary of State, Department of Health (Lord Darzi of Denham)

The National Institute for Health and Clinical Excellence will consider in August 2010 whether there is a need to review its clinical guideline on chronic fatigue syndrome/myalgic encephalomyelitis.

—————————-

Source: UK House of Lords
Date: May 6, 2009
URL: 
http://www.publications.parliament.uk/pa/ld200809/ldhansrd/text/90506w0001.htm

Ref:  
http://www.me-net.combidom.com/meweb/web1.4.htm#westminster

[Written Questions]

Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

The Countess of Mar

To ask Her Majesty’s Government whether the Clinical Network Collaborative Consortium for chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is fulfilling the purposes for which it was set up following the Chief Medical Officer’s 2002 report on CFS/ME; whether regional specialist services for patients with CFS/ME are appropriately funded and are operating in all English regions; and whether there are sufficient trained specialist practitioners to meet the needs of patients in each region. [HL3076]

The Parliamentary Under-Secretary of State, Department of Health (Lord Darzi of Denham)

We have made no assessment on whether the Clinical Network Collaborative Consortium is fulfilling the purposes for which it was set up.

It is the responsibility of strategic health authorities to ensure that services are available, and sufficiently funded and staffed with appropriately trained staff, to meet the health and social care needs of those of their local population diagnosed with chronic fatigue syndrome/myalgic encephalomyelitis.

—————————-

Source: UK House of Commons
Date: May 13, 2009
URL:
http://www.publications.parliament.uk/pa/cm200809/cmhansrd/cm090513/debtext/90513-0024.htm

Ref:  
http://www.me-net.combidom.com/meweb/web1.4.htm#westminster

[Debates]

Cervical Cancer Vaccination

(…)

Mr. Crispin Blunt (Reigate)

I only became concerned about the possible side effects of the Cervarix vaccine-and, I confess, aware of the vaccine itself when the experience of one of my constituents, Rebecca Ramagge, was brought to my attention. Rebecca’s mother came to see me at my surgery 12 days ago and told me how her daughter had fallen ill shortly after her first injection with Cervarix. Over the full course of the injections, she has gone from being a healthy sports-loving teenager who was a high achiever at school and a tournament-level tennis player, to being crippled by chronic fatigue syndrome, unable to attend school regularly and in need of help with basic tasks such as walking and eating because of the exhaustion and the muscular and joint pain from which she is now suffering.

(…)

Rebecca’s case is not an isolated one. Similar stories of severe  reactions resulting in partial paralysis, seizures and chronic fatigue have been well featured in the national press. The vaccine support group JABS-Justice Awareness and Basic Support-has nine girls registered as suffering from severe adverse reactions to Cervarix. A solicitor who  specialises in representing vaccine victims is representing six girls who are suing the makers of the vaccine, GlaxoSmithKline, under the Consumer Protection Act 1987. Yesterday however, the Minister gave me a parliamentary answer that included the following: To date almost one million doses of Cervarix have been given in the UK and there is no evidence to suggest that Cervarix vaccine has caused chronic fatigue syndrome, paralytic disorders or any other serious or long-term side effects.” [Official Report, 12 May 2009; Vol. 492, c. 706W.]

(…)

The Minister of State, Department of Health (Dawn Primarolo)

In the remaining 10 per cent of cases let us remember that we are talking about 0.00017 per cent. of the total vaccines there is good reason to think that the reported symptoms were associated with an underlying condition or illness that the person was suffering from at the time they had their vaccination. That, in fact, appears to be the most likely interpretation for the cases reported in the media recently, including the cases in the Daily Express and Daily Mail of the young girls who were reported as suffering from partial paralysis, chronic fatigue syndrome and fits since having their vaccination. The MHRA is fully aware of those cases, several of which were reported via the yellow card scheme, and is investigating them.

As we vaccinated such a large cohort of young people, it was inevitable that a few cases would come forward where other conditions were reported as suspected side-effects even if the vaccine played no part. Indeed, the MHRA’s statistical analysis of paralytic disorders and chronic fatigue syndrome shows that the reported frequency of such cases is no more than, or should I say the same as, would have been expected among a similar cohort of unvaccinated teenagers. In addition, the Government’s independent advisory body, the Commission on Human Medicines, looked into the reports not just in the UK, but across the world and concluded that there are no new safety issues associated with the vaccine.

(c) 2009 Parliamentary copyright

Dr Ian Gibson, former MP for Norwich North, former Secretary to the APPG on ME has been a champion of the mass vaccination of young girls with the cervical cancer vaccine. 

In its 2006 report, the “Gibson Inquiry” (which had been chaired by Dr Gibson) reported:

“Vaccination is often blamed for unexplained outbreaks of illness and regularly appears in the media being accused of such. The Group found that there is no strong evidence to link CFS/ME to vaccination and it is unlikely to be a cause.”

RiME: NHS Services Inquiry Notice 5 June 2009

ME agenda: Position on the unofficial APPG on ME inquiry into NHS service provision for people with ME

Given the apparent lack of funding and resources to support the undertaking of an inquiry; given the APPG on ME’s failure to properly consult with the ME community (other than with the APPG on ME Secretariat) over the inquiry’s remit and before publishing its Terms of Reference; given the many concerns that were expressed to Dr Turner in October and November, last year, and given continued concerns over the Terms of Reference, the tightness of deadlines and the administrative procedures for the collection of evidence and data, I cannot support this inquiry.

I consider that Dr Turner should have postponed taking this initiative forward until proper consultation has taken place over what the aims and objectives of any inquiry carried out in the name of the ME community should be, and how the APPG on ME might best set about achieving those objectives within the limited resources available to the committee.

In failing to recognise this inquiry’s shortcomings and in failing to acknowledge and respond to the levels of concern, our national patient organisation cannot be said to acting in the interests of their membership and the wider ME patient community. 

 

RiME: NHS Services Inquiry Notice 5 June 2009

Campaigning for Research into ME (RiME)  www.rime.me.uk  

NHS Services Inquiry

RiME is about the neurological illness Myalgic Encephalomyelitis (ME) as described by ICD G93.3 ME and the Canadian Criteria.

The Inquiry: Is it not about something else?

It would appear that the clinics set up following the CMO Report 2002 are opening their doors to patients with a range of illnesses and conditions. This is apparent from referral criteria (see RiME Website, Clinics Folder) and feedback from people who have attended.

In some cases eg clinics in Kent, according ot the referral criteria patients with neurological illness ie ME should actually be excluded.

ME patients are boycotting the centres; not only because they feel they are irrelevant to their illness but because they deem treatments inappropriate and/or harmful eg: The Sussex service says patients need to be ‘willing to have a biopsychosocial and management assessment’. Barts London uses GET and CBT.

Consequently, is the Inquiry not flawed? And its results – will they not be skewed and misleading as far as G93.3 ME is concerned?

We have a dilemma. Do we:

(1) Boycott the Inquiry? To take that route I feel one would need to be confident that one had widespread support; this does not seem to be the case.

(2) Submit evidence (but with qualification)?

Having given the matter considerable thought and consulted widely, I say 2. But I would make the following suggestions:

If you deem the project flawed then make this clear in the opening statement of your evidence.

Then, if you have criticism of your local clinic(s), make those points.

Setting up a Bank

The Terms of Reference which are on the new Inquiry website – www.appgme.org.uk  - say that written evidence has to be submitted by June 30 (for details see end of piece).

On the website is also a questionnaire which people who have attended services can fill in.

Please send us a copy of whatever you submit.

We feel it useful that a ‘bank’ of evidence is set up. If the Inquiry was to report favorably on the clinics 2010 saying along the lines that ‘there were few, if any, adverse comments’ that statement could then be rebutted (if substantial evidence from ME patients had been collated to the contrary).

Copies of evidence sent to RiME would be stored away while the Inquiry is in process. RiME guarantees anonymity. If the evidence was published after the Inquiry reports, one would ask for people’s consent and maintain patient anonymity.

NB Note that they ask for addresses on evidence. Dr Des Turner MP guaranteed anonymity at the APPG meeting April 1 2009 saying, ‘Yes. I can give the assurance that we will not name anybody’. But I would make it clear still that you want your details treated confidentially, if that is the case.

—————————-

Evidence (last part of Terms of Reference)

Organisations and individuals are invited to submit written evidence. The strong preference is for written evidence to be in Word format-not PDF format-and sent by e-mail to info@appgme.org.uk

However it recognised that many people with ME will not have the use of computers or internet facilities and so typewritten scripts and legible hand written scripts will also be accepted.

The body of the e-mail or covering letter must include a contact name, telephone number and postal address. The e-mail/covering letter should also make clear if the submission is from an individual or on behalf of an organisation. The deadline is 30 June 2009.

Submissions must address the terms of reference. They should be in the format of a self-contained memorandum and should be no more than 3,000 words. Paragraphs should be numbered for ease of reference, and the document must include an executive summary. Submissions should be original work, not previously published or circulated elsewhere, though previously published work can be referred to in a submission and submitted as supplementary material. Once submitted, your submission becomes the property of the APPG. The APPG will expect to publish the written evidence it receives.

Evidence sessions are likely to commence 14 July 2009 and a later notice will give details of these.

Paul Davis 10 Carters Hill Close, Mottingham, London SE9 4RS  rimexx@tiscali.co.uk  

www.rime.me.uk

APPG on ME: Agenda for next meeting Wednesday 8 July 2009

The next meeting of the APPG on ME will be held on Wednesday 8 July.  Members of the public are able to attend these meetings. 

The website of the APPG on ME is here:
http://www.appgme.org.uk/

Minutes and full, verbatim transcript of the 1 April meeting here:

http://meagenda.wordpress.com/2009/06/15/appg-on-me-minutes-and-transcript-meeting-1-april-2009/

 

1.30 – 3pm, Wednesday 8 July 2009

Committee Room 19*, House of Commons

See latest update for a further room change

*Please note this change of venue – previously Committee Room 20

The meeting will be the Annual General Meeting and the future work of the APPG will be discussed.

AGENDA

1. Welcome by the Chairman

2. Minutes of the last meeting – available at:

http://www.afme.org.uk/res/img/resources/FINAL%20APPROVED%20%20MINUTES%20APPG%20on%20ME%201%20April%2009.pdf

3. Matters arising

- Update on the APPG Inquiry into NHS Services

- Statement from WMMEG (West Midlands ME Groups) Consortium on ME/CFS – Education and Training in the NHS

4. AGM

i. Election of Chairman

ii. Election of Vice-Chairman

iii. Election of Secretary

iv. Election of Treasurer

5. Future of the APPG

i. Future work

ii. APPG legacy paper (in preparation for a General Election)

iii. APPG website

6. Speaker to be confirmed

7. Any Other Business

8. Date of Next Meeting

 

Heather Walker, Action for M.E., Secretariat, APPG on ME

Or contact: Des Turner MP, 179 Preston Road, Brighton BN1 6AG

Tel: 01273-330610. E-mail: turnerd@parliament.uk

*It has been agreed that amendments to minutes should be put in writing to the Secretariat one week before the meeting. Please e-mail heather.walker@afme.org.uk

APPG on ME: Minutes and transcript, meeting 1 April 2009

The Minutes and a verbatim transcript of the APPG on ME meeting held on 1 April 2009 were published on 3 June by the APPG on ME secretariat.

The Minutes of the meeting of the All Party Parliamentary Group on ME dated 1 April 2009 can be viewed as a Word document here on ME agenda and are appended:

MINUTES APPG on ME 1 April 09

For a trial period, a verbatim transcript ofmeetings by a Hansard transcriber is also being made available. The transcript of the 1 April 2009 meeting can be read here (17 pages):

VERBATIM TRANSCRIPT APPG on ME 1 APRIL 2009

 

Note: Change of date for next meeting of the APPG on ME.

The date given at the end of the Minutes of the 1 April 2009 meeting was 24 June 2009.  This has since been changed to:

Wednesday, 8 July 2008

The next business meeting – and Annual General Meeting – of the All Party Parliamentary Group on ME at Westminster will be held be held on Wednesday July 8. It will take place in Committee Room 20, House of Commons, between 1.30pm and 3pm. Please watch the ME Association website for further details.

Minutes

All Party Parliamentary Group on M.E.

Chair: Des Turner MP
Vice-Chairs: Andrew Stunell MP
Tony Wright MP
Secretary: Ian Gibson MP (Ed: since stood down as MP for Norwich North)
Treasurer: David Amess MP

Minutes of the meeting of the All Party Parliamentary Group on M.E. held at 1.30-3pm, Wednesday 1 April 2009  Committee Room 20, House of Commons

Present

Parliamentarians
Dr Desmond Turner MP (Chair)
Andrew Stunell MP (Vice Chair)
Peter Luff MP

Parliamentary office representatives
Koyes Ahmed, office of Dr Turner MP
Ceri Finnayson, office of Edward Davey MP

Secretariat
Sir Peter Spencer (Action for ME)
Heather Walker (Action for ME)
Tony Britton (MEA)

Organisations and individuals
Dr Derek Pheby (ME Research Observatory)
Kirsty Haywood (Royal College of Nursing)
Sue Waddle (MERUK)
Paul Davis (RiME)
Jane Colby (Tymes Trust)
Doris Jones (25% Group)
Joy Birdsey (K&SAME)
Jill Cooper, Warks
Stephen Jones
Augustin Ryan
Alan Gold
Annette Barclay
Joan Duvey
Michelle Goldberg
Jill Cooper
Samantha Brown with Max Cotton (BBC Politics Show)

Apologies:

Parliamentarians: Anne Begg MP, Angela Browning MP, Andrew Dismore MP, William Etherington MP, Kelvin Hopkins MP, Dr Brian Iddon MP, Ann Keen MP, Kerry McCarthy MP, Iris Robinson MP, Rudi Vis MP, Countess of Mar, Lord Puttnam

Non-parliamentarians: Dr Charles Shepherd, MEA, Christine and Tanya Harrison, BRAME, Janice and Bill Kent, Member, Janet Taylor (Kirklees Independent ME Support Group), Ciaran Farrell.

1. Welcome

The Chairman welcomed those present and explained that the meeting was joined by Max Cotton, BBC Politics Show, who was filming for a future programme featuring a person with M.E., plus a transcriber from Hansard, who would produce a verbatim note of the meeting. The verbatim note would be made available in addition to more concise business minutes produced by the Secretariat.

2. Minutes of the last meeting

The meeting agreed to:

i. Delete from item iii.f: “He also asked if the services inquiry would cover research”, as this was not said by Paul Davis.

ii. State that the Strategic Framework Document that Nicky Zussman referred to at the APPG of 8th July 2008 was: “Children and Young People’s Emotional and Mental Health in East Sussex 2005 – 08. The Strategic Framework for Commissioning and Planning Services. Appendix 4: Mental health of children and young people – classifications and definition.”

3. Matters arising

The meeting agreed to:

i. note that the Welfare Reform Bill was proceeding through the House of Lords

4. APPG Inquiry on NHS service provision for people with ME

i. Committee: The Chair announced that the Parliamentarians who will be considering evidence would be: Dr Ian Gibson MP, Tony Wright MP, Andrew Stunell MP, the Countess of Mar, Baroness Finlay and the Chair, Dr Des Turner.

Later in the meeting (under Terms of Reference), Peter Luff MP said he would like to be party to the process of obtaining information from health authorities, at which point the Chair invited him to join the inquiry group.

ii. Terms of Reference: The Terms of Reference (ToR), amended following feedback after the last meeting, were circulated.

The amended ToR were discussed in detail. It was decided that: while the APPG accepted the WHO definition of ME, the inquiry recognised but could not be delayed by debates about terminology and would look at services on offer to people classified as having either ME or CFS (but see below). There would be no further consultation on the amended terms of reference.

iii. Inquiry questionnaires and submissions of written evidence:

a. There would be two questionnaires: one for people with M.E./carers, one for PCTs.

b. Questionnaires to PCTs would ask questions about the criteria for diagnosis and ask about the basis of estimates of people with M.E.

c. There would also be a patient survey.

d. People who were not at the APPG meeting would have a chance to give evidence.

e. Anonymity would be granted to people who are prepared to give evidence. No individual would be named in the inquiry report without their express consent.

f. The way in which patient outcomes are measured will include adverse reactions to treatment and people dropping out of treatments.

g. To capture current USFDA guidance on how the inquiry measures and understands patient outcomes, it should refer to the term “patient-reported outcome.”

h. Kirsty Haywood would provide the Chair with an advance copy of her paper on patient reported outcomes, as submitted to the journal of the Royal Society of Medicine.

i. ME sufferers, carers or professionals were all welcome to submit suggestions for specific questions that could be asked in the survey. The deadline for receiving ideas was 5 May.

j. It was recognised that the timetable was demanding and the scope of the inquiry was limited by lack of time and resources but the parliamentarians present agreed that such a timetable was necessary if the inquiry was to complete the evidence-taking process before the summer recess and publish a report before the run-up to the next general election.

k. A press release about the launch of the inquiry would be issued straight away.

iv. Inquiry website: it was hoped that a website, with full timetable details of the inquiry, would be up and running shortly.

5. Any Other Business

Two documents were tabled by the Secretariat on behalf of organisations who were not able to attend the meeting.

i. The first document tabled should have been a statement by the West Midlands ME Groups Consortium (WMMEG), entitled ME/CFS – Education and training in the NHS / NHS CCRNC conference. However, a supplementary WMMEG statement from 2007 was tabled instead, in error. The correct statement was circulated electronically, with apologies, the following day.

ii. The second document tabled related to Care Quality Commission proposals to make NICE recommendations (for all conditions) mandatory. This matter was brought to the attention of the APPG by BRAME.

It was suggested that a representative from the Care Quality Commission should be invited to address the next meeting.

6. Date of Next Meeting

24 June 2009 (subject to speaker availability)  (Ed: Since changed to Wednesday, 8 July)

APPG on ME Inquiry into NHS services: Patient Questionnaire

The Patient Questionnaire for the APPG on ME Inquiry into services for people with ME has now been posted on the APPG on ME website.  Please note that one of the panel members for the Inquiry, Dr Ian Gibson MP, will presumably have withdrawn from involvement in the Inquiry and also resigned as Secretary to the APPG on ME having recently stood down as MP for Norwich North.

Please note that ME agenda does not support the undertaking of this Inquiry due to its being under resourced and due to issues around its Terms of Reference.

The questionnaire can be downloaded in Word and PDF format from the APPG on ME website.  All enquiries in connection with the Inquiry, itself, or with the Questionnaires to turnerd@parliament.uk .  ME agenda cannot enter into correspondence around any aspect of this Inquiry.  If you don’t understand the instructions please contact Dr Turner.

http://www.appgme.org.uk
/

PATIENT QUESTIONNAIRE

APPG INQUIRY INTO NHS SERVICES FOR PEOPLE WITH M.E. / CFS

Please respond to each of the following questions. Answers should be in the format of a self-contained memorandum and the entire response should be no more than 3,000 words.

Respondents typing their submission may answer by filling in this questionnaire and including any detailed answers immediately after each question. If the response is hand-written, each question should be clearly re-stated in the response, with answers immediately following each particular question.

The document must include a very brief executive summary about yourself of approximately 200-300 words. Once submitted, your submission becomes the property of the APPG. The APPG will expect to publish the written evidence it receives. Please notify us if you wish your statement to be anonymous.

Please ensure that your questionnaire is submitted by the 20th of July 2009 to either turnerd@parliament.uk  or

Dr Desmond Turner MP
House of Commons
London
SW1A OAA

(Please go to the APPG on ME website at
http://www.appgme.org.uk
/ for the Word and PDF questionnaires)

RiME: Sussex Services June 2009

RiME: Sussex Services 13 June 2009

Campaigning for Research into ME (RiME)  www.rime.me.uk

Sussex Services

Sussex wide CFS/ME MDT service
http://rwstgp.org.uk/site/cfs.html

Referral criteria

Patients accepted as referrals into the Sussex CFS/ME MDT need to fulfil the following criteria;

• Aged 16 or above, but no upper age limit
• Under 16s should be referred to Acute or Community Paediatrics or CAMHS
• A primary complaint of unexplained fatigue which is disabling and affects physical and mental functioning.
• No clear alternative medical or psychiatric diagnosis has been made 
•  The duration is at least 4 months
• There are copies or reports of normal or negative investigations, as described below (see notes on medical screening), performed in the previous three months
• The patient is willing to have a biopsychosocial and management assessment
• The GP or referring doctor is responsible for providing reports for benefits/employment/insurance purposes as appropriate, which will not be provided by LMDT staff.

Notes on Medical Screening

Assessment

All patients will be assessed by a doctor experienced or trained in the diagnosis and management of CFS/ME. The assessment process is intended to determine whether the diagnosis of CFS/ME is appropriate and what further management is indicated

N.B. The medical assessment here is designed to be done by the LMDT doctor, but it may be possible in the future to give this responsibility to the GP or other referring doctor, with appropriate protocols and training.

Medical assessment will include :

History

Particular emphasis should be placed on:

History of present complaint

Any atypical features suggesting alternative diagnoses

Current activity level/pattern

Mood disorders (including both depressive and anxiety disorders)

Illness beliefs

Sleep pattern

Common medical and psychiatric exclusions

Examination

All patients will undergo a physical examination. The extent of this examination is at the discretion of the examining doctor, and will be influenced by the history.

All patients will undergo a mental state examination.

Investigations

Prior to Referral – all patients will have the following investigations performed: Full blood count, ESR or C-reactive protein, urea and electrolytes, liver function tests, calcium, albumin, creatine kinase, thyroid function (TSH and free T4), coeliac screen, random blood glucose, urinalysis for blood, sugar and protein.

(NB these tests are to be completed by the referrer, before a referral is accepted. Depending on the length of history and age of the patient, these tests should normally be done within three months of referral.)

The history may suggest the need for other tests (e.g. ANA, Lyme serology) but in the absence of a suggestive history no further tests are mandatory.

The multi-disciplinary team will be based at

Chronic Fatigue Syndrome Service

Sidney West Primary Care Centre

Leylands Road

Burgess Hill

West Sussex RH15 8HS

Tel: 01444 238870

Fax: 01444 238889

Referral Proforma  PDF

April 4, 2009

————————

Link to Barts

The CNCC for the Sussex Wide CFS/ME Service is Barts, London. The minutes of a West Sussex PCT Meeting 24/5/07 say:

… The Sussex MTD will be linked to Barts’ who will provide consultation and training support in its role as CNCC. The support provided by the CNCC will be mainly in terms of education and advice to the Local Multi Cisciplinary Team, in order to enable patients to receive their care locally. The Barts’ CNCC will also offer one-off consultation on more complex cases where this is appropriate…

Ed. the Barts CNCC has been condemend by ME patients in London (see www.rime.me.uk   – Clinics, London file).

————————

Selected Comments

Brighton 2008

… The rationale for the Sussex CFS Services seems confused – they are supposed to be specialised ME services, but fatigue is the only symptom listed in the referral criteria. The hallmark signs and symptoms of Myalgic Encephalomyelitis, which include Immune, Neuro and neuro cognitive and neuro endocrine in addition to PEM (Post Exertional Malaise), are missing from the Sussex CFS referral, assessment, and treatment criteria. So the Services don’t seem to be about ME.

The crux of the problem is that the Sussex referral criteria select patients with fatigue, and GPs see a lot of patients with fatigue from numerous different causes; most of the causes are not ME…

We should definitely now be using the Canadian Criteria to identify ICD G93.3 ME. To think of all the wasted years and wasted £millions since the CMO’s working group was convened in 1998, and we have been landed with CBT/GET, which has been discredited in so many ways, and has no scientific basis…

Why was the first Clinical Lead of the Sussex CFS Services a doctor described as a ‘specialist in psychological medicine’ and a ‘specialist in corporate CBT Training’, who describes ME as “medically unexplained”? Then the CFS Services Leads were doctors whose background is General Practice…

I wish the £11 million earmarked for ME had been spent on relevant biomedical research….

Brighton 2009

… The Sussex ME/CFS Society did not win my heart and mind in the years I was a member. I left after a few years in sheer frustration as the officials did not seem to be speaking about the disease I live with – yet they assured me that they were representing people with ME; they then went ahead and accepted CBT/GET ‘management’ for local NHS services. The actual ME patients didn’t have any say in the matter. It now turns out the Kent and Sussex ME/CFS Society is also involved in a pilot trial of the Lightning Process…. Lightning is an unproven NLP process that puts the onus on the patients by claiming that if the sick patients doesn’t recover its because they didn’t ”do the work”…

The Chronic Fatigue Society, also called reMEmber, say they were closely involved in the planning stage of the Sussex CFS CBT/GET services. reMEmber seem to put their resources into running self-management courses which they say are open to all people suffering from ‘chronic fatigue’….

I would like representation by a patient charity that is compatible with the multisystem organic seriousness of Canadian Definition ME.

The referral criteria for the Sussex CFS Services relies too much on vague fatigue and does not mention the WHO ICD G93.3 classification of Myalgic Encephalomyelitis or the Canadian Definition of ME…. what do so called “illness beliefs” have to do with ME?…

Mid-Sussex 2009

I attended the Chronic Fatigue Unit when it was at the Princess Royal Hospital in Haywards Heath. High expectations fell to total disillusionment. The treatment didn’t help me; based on CBT, I failed to understand how it related to my illness – Myalgic Encephalomyelitis (ME). Subsequently, I knew someone with ME who described the CF Unit as a sham. Effective treatment for sufferers of this dreadful, neurological illness, in my opinion, will only come through properly funded biomedical research which is clearly lacking in the United Kingdom at this time.

Seaford Letter in Sussex Argus 2007

… Most people with ME in Sussex are.. not happy with the services on offer.. at the clinic Haywards Heath… They seem to offer only psychologically based interventions that have been shown to often cause people to become worse, not better. This is because the assumption made at clincs such as these is that ME is a psychological condition perpetuated by psychological factors. It is not.

It is time funds were instead given to.. physically based research studies….

AfME and the Sussex Group do not represent the great majority… with ME in this country.

Eastbourne Letter to APPG Chair 2005

… People I know with ME do not support the NHS ‘CFS/ME’ clinics which are currently being set up around the country and which offer psychiatric/psychological models of treatment. Someone with ME who attended the Maidstone CBT clinic claims that they were subjected to a lecture by a psychologist who talked about issues such as low self-esteem, negative thoughts, abnormal illness beliefs… They didn’t return. And I think these clinics will be generally boycotted by ME patients. People with other conditions, though, that would fit a loose CFS definition will probably attend and some of these might benefit > skewed results.

…. the number of people with ME who subscribe to the Sussex/Kent Group would be a small minority… in both counties. Those I know with ME want nothing to do with this Group.

Continuing on the issue of fairness, you (APPG Chair) have invited Prof. Pinching to address the APPG next Tuesday re. the NHS Clinics. He will most probably tell the attendees that everything is going swimmingly well. Have you also invited a party or parties who will put the other side of the coin eg RiME, the 25% Group… or someone from a local Group who opposes the new ‘CFS/ME’ unit in their area eg the neighbouring Winchester + Eastleigh Group…

Haywards Heath 2006

It is v important that money allocated to… ME be used to diagnose the physical causes of this v serious illness. It is entirely evident that the present forms based on psychological causes/treatment is just not working. The latest span of clinics are an off-shoot of the already well-established under the guidance of the ‘global expert on ME’ – Prof. SW…

.. there is not a shred of evidence there has been any benefit whatever to these individuals… patients are known to be coming out of these clinics with a different name to their serious symptoms…

My treatment as a nurse… instilled in us that patient needs come first. This clearly is not happening.. Not only are patients’ needs not being met, these ill people are being brandished – bullied – intimidated in the most pernicious way, by the profession trained at the expense of the public purse…

Wadhurst 2005

… my daughter has been chronically affected with ME and bed-ridden for fourteen years now. These new clinics have nothing to offer people like her. We would much prefer that public money was spent on biomedical research into ME …

2009

… having discussed the Clinics with ME friends in Brighton and Haywards Heath (who sent me the description of the Haywards Heath service), I certainly wouldn’t attend such clinics. What has this got to do with G93.3 ME? That the Sussex/Kent Group is supporting the ‘CFS/ME’ services begs questions as to who that Group actually represents? The same question, it would seem, could be asked of the Chronic Fatigue Society based in Sussex, also known as reMember? x,y was a member of the CMO’s Working Group and supported its 2002 Report. Their courses which last two-and-a-half hours, include ‘drawing up action plans, setting goals, problem solving and decision making…. ‘ (x,y 2003). If the courses are ‘tremendously successful’, one wonders who attends, exactly?

I have no faith in the APPG Inquiry Panel which will be assessing the clinics. If they go to providers such as the Sussex Clinics, I suspect the response will be skewed and misleading in that they are most probably attracting patients with a range of conditions, some of which might respond to psychiatric/psychological models of treatment. And if they go to the Sussex/Kent Group, it would appear they will get a favorable response…

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Leader of Sussex and Kent ME/CFS Society, InterAction Christmas 2008:

… we have noticed in our area.. that more people with ME/CFS these days are falling into the mild to moderate category and improving with the help of various approaches more quickly than previously.

As more professionals are recognising the illness sooner and administering symptom control along with sensible management advice, less people seem likely to slip into the chronic more severe illness.

In areas such as ours where there are specialist NHS Services, people are being diagnosed sooner and more GPs giving good early advice…

We are starting to see with ME/CFS… that it makes sense to intervene earlier rather than later to prevent chronicity and severity of illness.

Whilst aware… that the situation is far from perfect, things are improving and it’s great to see more of our members moving on and being able to take up active lives again.

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Ed. – Sussex could be a litmus test to see from whom exactly the Inquiry Panel takes evidence and to whom it listens. If it was to exclusivey or largely consider evidence from the NHS Service Providers in Sussex and the Sussex and Kent ME/CFS Society, then it would lay itself open to accusations of bias and stacking the deck.

There would appear to be similar concerns in other areas.

Paul Davis    rimexx@tiscali.co.uk    www.rime.me.uk