Ian Swales, MP amends his understanding of government policy on CFS and ME

Ian Swales, MP amends his understanding of government policy on CFS and ME terminology (Three Parliamentary errors)

Shortlink Post: http://wp.me/p5foE-3hH

On 2 February 2011, Ian Swales (Lib Dem, Redcar) addressed a Parliamentary Adjournment Debate on ME. During that debate, the Health Minister, Paul Burstow, had stated that the World Health Organisation (WHO) uses the composite term CFS/ME for this condition.

This was incorrect. The WHO does not use the composite terms “CFS/ME” or “ME/CFS”.

In a Parliamentary Written Answer to Mr Swales, dated 16 February, the Health Minister corrected his error [1].

Mr Burstow had clarified:

“…During the Westminster Hall debate, on 4 February 2011, I said that the World Health Organisation uses the composite term CFS/ME for this condition. This was incorrect.

“The World Health Organisation classes benign myalgic encephalomyelitis and post viral fatigue syndrome under the same classification G93.3 ‘diseases of the nervous system’; subheading ‘other disorders of the brain’.

“The report of the CFS/ME Working Group to the Chief Medical Officer, in January in 2002, suggested that the composite term CFS/ME be used as an umbrella term for this condition, or spectrum of disease. This term is also used by the National Institute for Health and Clinical Excellence for their clinical guidelines.

“We do, however, intend to seek further advice on our classification and will update the hon. Member in due course.”

[Note that although Health Minister, Paul Burstow, gave the date of Ian Swales’ Adjournment Debate as “4 February” in his Written Answer of 16 February, the Debate took place on 2 February 2011.]

On 17 February, Mr Swales published a report on his website which went out under the title “Swales wins battle with Government on ME”. This report had claimed:

“Ian Swales MP’s fight for better treatment of myalgic encephalomyelitis (ME) continues as he succeeds in getting the Government to recognise ME and Chronic Fatigue Syndrome (CFS) as different illnesses.”

But Mr Swales had misinterpreted the content of the Written Answer he had received from the Health Minister.

This has caused much confusion amongst ME and CFS patients.

Advocates have raised this misunderstanding with Mr Swales and with his Parliamentary Researcher.

Today, an amended report has been published on Mr Swales’ website under the same URL and date, but with a new title – this time it is called:

“Swales corrects Minister on World Health Organisation definition of ME”

I am appending both versions.

To recap, because this is important, and because there is a further error:

Paul Burstow, Health Minister, incorrectly stated on 2 February, during an Adjournment Debate, that the WHO uses the composite term CFS/ME for this condition. That error was corrected by Mr Burstow in his Written Answer of 17 February.

Ian Swales, MP, then claimed in a website report that he had succeeded in getting the government to recognise ME and Chronic Fatigue Syndrome (CFS) as different illnesses. This was a misinterpretation of Mr Burstow’s own correction and clarification. Mr Swales’ Parliamentary Office has now amended his report.

The Countess of Mar, meanwhile, tabled a Written Question of her own for which a response was provided on 1 March, by Earl Howe [3].

The Countess of Mar had tabled:

“To ask Her Majesty’s Government, further to the statement by the Minister of State for Health, Paul Burstow, on 2 February (Official Report, Commons, col. 327) that the World Health Organisation (WHO) described myalgic encephalomyelitis (ME) as Chronic Fatigue Syndrome/myalgic encephalomyelitis (CFS/ME) and that this was the convention followed by the Department, in light of the fact that the WHO International Classification of Diseases 10 lists ME as a neurological disease with post viral fatigue syndrome (PVFS) under G93.3 and CFS as a mental health condition under F48.0 and that the latter specifically excludes PVFS, whether they will adhere to that classification.”

The response received on 1 March, was:

Earl Howe (Parliamentary Under Secretary of State (Quality), Health; Conservative)

“The department will continue to use the composite term chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) for this condition, or spectrum of disease, as suggested by the Chief Medical Officer in his 2002 report. We recognise the condition as neurological in nature.”

But the Countess of Mar’s Written Question also contains an error.

In the International version of ICD-10 (the version used in the UK and over 110 other countries, but not in the US which uses a “Clinical Modification” of ICD-9), CFS is not classified as a mental health condition under F48.0.

Chronic fatigue syndrome is listed in ICD-10 Volume 3: The Alphabetical Index, where it is indexed to G93.3, the same code as Postviral fatigue syndrome.

So in International ICD-10, Postviral fatigue syndrome, Benign myalgic encephalomyelitis and Chronic fatigue syndrome are all three coded or indexed to G93.3 under “G93 Other disorders of brain”, in Chapter VI (6): Diseases of the nervous system.

In International ICD-10, the Mental and behavioural disorders chapter is Chapter V (5).

http://www.who.int/classifications/apps/icd/icd10online/?gf40.htm+f480

Chapter V (5) Mental and behavioural disorders

Neurotic, stress-related and somatoform disorders are coded between (F40-F48)

Neurasthenia
Fatigue syndrome

are classified under (F40-F48) at F48.0, which specifically Excludes

malaise and fatigue ( R53 )

and

postviral fatigue syndrome ( G93.3 )

So now you know what UK government policy is and that Mr Swales had misled himself.

The forthcoming US specific ICD-10-CM

Perhaps the focus can now return to more pressing issues – like the fact that in the US, a Partial Code Freeze is looming for the forthcoming US specific version of ICD-10, known as “ICD-10-CM”.

Under longstanding proposals, the committees developing ICD-10-CM intend to retain Chronic fatigue syndrome in the R codes, and code it under R53 Malaise and fatigue, at R53.82 Chronic fatigue syndrome (NOS), but propose to code for PVFS and ME in Chapter 6, under G93.3.

The R codes chapter (which will be Chapter 18 in ICD-10-CM) is the chapter for

“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.”

Coding CFS patients under R53.82 will consign them to a dustbin diagnosis: there are no guarantees that clinicians will use the unfamiliar ME code or that insurance companies will reimburse for G93.3. It will make patients more vulnerable to the proposals of the DSM-5 Somatic Symptom Disorders Work Group. It will mean that ICD-10-CM will be out of line with at least four versions of ICD-10, including the Canadian “Clinical Modification”, and also out of line with the forthcoming ICD-11, where all three terms are proposed to be coded in Chapter 6 Diseases of the nervous system.

There are only seven months left before the 1 October Code Freeze and the clock is ticking.

 

Here is the first version of Mr Swales’ website report, followed by his amended version.

Version One:

http://ianswales.com/en/article/2011/455560/swales-wins-battle-with-government-on-me

Swales wins battle with Government on ME

February 17, 2011 3:45 PM

Ian Swales MP’s fight for better treatment of myalgic encephalomyelitis (ME) continues as he succeeds in getting the Government to recognise ME and Chronic Fatigue Syndrome (CFS) as different illnesses.

During Ian’s recent parliamentary debate on ME he argued that the Government needs to distinguish between Chronic Fatigue Syndrome and ME to provide better treatment for the different illnesses.

However, Health Minister Paul Burstow MP responded by saying that the World Health Organisation classifies Chronic Fatigue Syndrome and ME as the same illness.

Following an outcry from the ME community about this statement, Ian challenged the Minister on his definition of CFS/ME. The Minister admitted that the definition he used in the debate was “incorrect”.

Commenting, Ian Swales MP said:

“I am pleased that the Government has now recognised that ME and Chronic Fatigue Syndrome are two different illnesses.

“After the debate I received a lot of correspondence from the ME community about the Government’s definition of CFS/ME, so after doing some more research on the matter I decided it was right to clarify this point with the Minister. I know they will be reassured by this news.

“I hope that approaching ME as a distinct condition will help lead to better, more effective treatment for sufferers through better analysis of their possible different causes and symptoms.”

[Ends]

Version Two:

http://ianswales.com/en/article/2011/455560/swales-wins-battle-with-government-on-me

Swales corrects Minister on World Health Organisation definition of ME

February 17, 2011 3:45 PM

Ian Swales MP’s fight for better treatment of myalgic encephalomyelitis (ME) continues as he succeeds in getting the Government to acknowledge that the World Health Organisation does not use the composite term CFS/ME for the condition.

During Ian’s recent parliamentary debate on ME he argued that the Government needs to distinguish between Chronic Fatigue Syndrome and ME to provide better treatment for the different illnesses.

However, Health Minister Paul Burstow MP responded by saying that the World Health Organisation “uses the composite term CFS/ME for the condition”.

Following an outcry from the ME community about this statement, Ian challenged the Minister on his definition of CFS/ME. The Minister admitted that his statement was “incorrect”.

Commenting, Ian Swales MP said:

“I am pleased that the Minister has acknowledged the error he made in the debate.

“After the debate I received a lot of correspondence from the ME community about the Government’s definition of CFS/ME, so after doing some more research on the matter I decided it was right to clarify this point with the Minister. I know they will be reassured by this news.

“I will continue my campaign to get more effective treatment for sufferers of ME through better analysis of its causes and symptoms.”

[Ends]

The text of the Adjournment Debate can be read here, on Hansard
2 Feb 2011 : Column 323WH

Myalgic Encephalomyelitis
4.13 pm

Watch video, here, on BBC News:

http://news.bbc.co.uk/democracylive/hi/house_of_commons/newsid_9382000/9382412.stm

 

References:

[1] Written Answer: Paul Burstow to Ian Swales, 16 February 2011, 16 Feb 2011 : Column 864W:
http://www.publications.parliament.uk/pa/cm201011/cmhansrd/cm110216/text/110216w0004.htm

[2] Amended Ian Swales website report:
http://ianswales.com/en/article/2011/455560/swales-wins-battle-with-government-on-me

[3] Written Answer: Earl Howe to The Countess of Mar, 01 March 2011:
http://www.theyworkforyou.com/wrans/?id=2011-03-01a.297.1

Hansard for above:
http://www.publications.parliament.uk/pa/ld201011/ldhansrd/text/110301w0001.htm#11030162000766

[4] Hansard, House of Lords Debate: Myalgic Encephalomyelitis, 22 January 2004:
http://www.publications.parliament.uk/pa/ld200304/ldhansrd/vo040122/text/40122-12.htm

[5] Current codings in ICD-10 for Postviral fatigue syndrome; [Benign] myalgic encephalomyelitis and Chronic fatigue syndrome:
http://dxrevisionwatch.wordpress.com/icd-11-me-cfs/

Minutes Forward-ME meeting, 26 October 2010: Lightning Process trial involving children

Minutes Forward-ME meeting, 26 October 2010: Lightning Process trial involving children

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

Forward-ME is a caucus group to the All Party Parliamentary Group on ME (APPG on ME) convened and chaired by the Countess of Mar.

The most recent meeting of the group was held in October in a meeting room within the House of Lords and the issue of the SMILE Lighting Process pilot trial was tabled on the Agenda at Item 6.2. The following is an extract from the Minutes of that meeting:

http://www.forward-me.org.uk/26th%20October%202010.htm

Minutes of the meeting held on

TUESDAY 26 OCTOBER 2010

1.00 PM

HOUSE OF LORDS.

1. Present:

Jane Colby – TYMES Trust
Christine Harrison – BRAME
Bill and Janice Kent – ReMEmber
Peter Spencer – AfME
Charles Shepherd – MEA
Sue Waddle – MERUK

Margaret Mar – Chairman

Mary-Jane Willows – AYME

2. Apologies:

Tanya Harrison – BRAME

[…]

6.2 Lightning Process trial involving children

The Group were informed that MEA and Tymes Trust had provided a joint statement on the SMILE Trial to Richard Ashby, Chair of the South West ethics Committee, saying that they felt the trial was unethical and that the ethics committee had probably not been made aware that the Advertising Standards Agency had ruled against a claim made by a Lightning Process Practitioner and that trading standards departments had been taking action in relation to misleading therapeutic claims. Concerns about the trial were being assessed by the National Research Ethics Service, headed by Joan Kirkbride.

It was said that an increasing number of individuals were contacting ethics bodies to express concerns about the trial.

The Group was told of a commentary in the Church Times by Prof Robin Gill, Chair of the BMA Ethics Committee, in which he criticised the research, and that Prof Gill planned to take this up with the BMA.

The Chairman had tabled a question asking what the Government’s opinion is on this matter.

(Hansard text)

Christine Harrison asked whether a complaint had been made to the NSPCC regarding the SMILE Trial. Charles Shepherd replied that it had and the content of this could be viewed on the internet.

A discussion followed. Concern was expressed regarding the fact that the study involves research being conducted on children before it was tested on adults. It was recognised that the MRC guidelines stated circumstances under which it would be acceptable to perform a study on children in the first instance. The feasibility study would need to prove that these conditions were satisfied in order to achieve ethical clearance of the actual trial. The Principal Investigator would also have to prove that a robust risk management strategy had been developed to minimise any harm to participants.

Another concern was that the ethics committee seemed not to have been made aware of the ruling made by the Advertising Standards Agency in relation to claims made by a practitioner of the Lightning Process.

The point was made that 250 children a year undergo this treatment and a paediatrician had been approached and asked whether the treatment was safe. However there was a concern that parents who believed they must try everything that might be of benefit to their child could feel pressurised to try the treatment. Children could be very vulnerable to inappropriate pressure to say they felt better.

The Group was told that Dr Esther Crawley, the lead for the LP research, had received a large volume of malicious correspondence about her proposals. The Group agreed that this was not an appropriate or acceptable manner in which to demonstrate opposition and confirmed that none of them had been involved. It was suggested that it was activities such as this that drove young researchers from the field.

The Group was told that the research ethics papers submitted for the feasibility study were on the Bristol University website. Some of these papers made the case that M.E. in children was a different illness from M.E. in adults. It was drawn to the Group’s attention that Dundee University (in a biomedical study co-funded by Tymes Trust and Meruk) had discovered the same abnormalities in the blood of children that they had previously found in adults, so in this respect, ME in children was not a different illness from ME in adults. (See item 11)

The Chairman suggested that it was important to look at the recovery period covered by the study because M.E. was a relapsing condition.

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

3] All posts on Lightning Process pilot study in children issue: 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)

Countess of Mar: Questions for Written Answer: Lightning Process pilot study ethical approval

Countess of Mar: Parliamentary Questions for Written Answer: Lightning Process pilot study ethical approval

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

http://www.publications.parliament.uk/pa/ld201011/minutes/101022/ldordpap.htm

House of Lords Business

Questions for Written Answer [House of Lords]

Tabled on 21 October and due for answer by 4 November.

[…]

The Countess of Mar to ask Her Majesty’s Government what assessment they have made of whether the decision by the South-West Research Ethics Committee to approve a pilot research study into the effects of the Lightning Process on children is consistent with the ethical guidance issued by the Medical Research Council to the effect that clinical trials should only include children where the relevant knowledge cannot be obtained by research on adults, and that research involving adults cannot provide the same benefits. HL3014

 

Related material

Children should not be used as guinea pigs: Prof Robin Gill, Church Times (Lightning Process Pilot study): http://wp.me/p5foE-3ak

House of Commons: Written answers and statements: Phil Parker Lightning Process: http://wp.me/p5foE-39J

Hansard Citation: HC Deb, 11 October 2010, c87W

11 Oct 2010 : Column 87W

Health
Phil Parker Lightning Process

Written answers and statements, 11 October 2010

Annette Brooke [Mid Dorset and North Poole, Liberal Democrat]: To ask the Secretary of State for Health what representations he has received on the research and development of the Phil Parker Lightning Process.[15725]

Paul Burstow [Minister of State (Care Services), Health; Sutton and Cheam, Liberal Democrat]: The Department has received representations, from individual members of the public and on behalf of chronic fatigue syndrome/myalgic encephalomylitis stakeholder groups, on research proposals associated with the Lightning Process.

————–

Annette Brooke, MP, is Vice-chair of the newly reformed APPG on ME and has been active in a number of Parliamentary Public Bill Committees (formerly known as “Standing Committees”) representing the rights of children and families:

http://www.theyworkforyou.com/mp/annette_brooke/mid_dorset_and_north_poole

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”.

Lightning Process pilot: Update and response from Research Governance Manager, DoH

Lightning Process pilot for children with CFS and ME aged 8 to 18: Update and a response from Research Governance Manager, Department of Health

Shortlink: http://wp.me/p5foE-30G

For background to this issue see ME agenda 5 July report:

Advertising Standards Authority (ASA) Adjudication: Withinspiration (Lightning Process)

For joint ME charity statement and press release see:

Joint Press Release and statement: ME Association and The Young ME Sufferers Trust

Update

It’s now five and a half months since the RNHRD NHS FT Bath/University of Bristol announced its intention to undertake a pilot study looking into the application of the Lightning Process in children aged 8 to 18. The press release issued 2 March can be read here:  Press Release, a media article here: Media article.

Joint charity press release

On 4 August, the ME Association and The Young ME Sufferers Trust issued a joint statement and press release strongly opposing the pilot study and calling for it to be abandoned. Their joint press release can be read here.

The press release was issued too late for inclusion in the ME Association’s Autumn issue of ME Essential. But the magazine does include a write up, on Page 4, of the Advertising Standards Authority (ASA) adjudication against Lightning Process company “Withinspiration”.

ASA adjudication against Lightning Process company

In June, the ASA upheld a complaint against an advertisement in which unsubstantiated claims had been made about the efficacy of the Lightning Process for CFS and ME.

Read the full ASA adjudication against “Withinspiration” here. 

Alastair Gibson, the Lightning Process practitioner associated with the company, had let it be known in March that he was one of two Lightning Process practitioners involved with this controversial NHS study. This information no longer appears on the “Withinspiration” website and the current status of his involvement in this pilot study is unknown.

25% ME Group position

On 11 August, Simon Lawrence, Chair of the 25% ME Group Management Committee, confirmed that the 25% Group is intending to issue a position statement shortly and that my concerns and documents sent to them have now been passed on to their medical advisors, Dr Byron Hyde, Canada, and Dr Nigel Speight (former NHS paediatrician with a special interest in ME in children).

Requests for information under the Freedom of Information Act

On 22 July, I submitted a formal request to the University of Bristol’s Director of Legal Services for an internal review of their decision to withhold nearly all information around the study under FOIA Clause 22(1)(a). A response is due on or before 19 August. My request for an internal review can be read here.

On 3 August, I submitted a request for information to the National Research Ethics Service (NRES). This is due for fulfilment on or before 31 August. Questions submitted under FOIA around the application for ethics approval and the application timeline can be read here.

Responses from parliamentarians and government departments

In July, I approached my MP, Annette Brooke (Lib Dem, Mid Dorset and North Poole), for her involvement with this issue. (Mrs Brooke is the MP who gave the adjournment debate speech on ME before Parliament dissolved prior to the election and is now Vice-chair of the recently reformed APPG on ME.)

On 31 July, I received a copy of a paper letter from the Parliamentary Office of Annette Brooke to the Rt Hon Andrew Lansley MP, Secretary of State for Health, Department of Health, dated 29 July. Mrs Brooke has requested that the Secretary of State for Health look into this matter. A response is pending.

I also raised my concerns with the Countess of Mar, Lord Clement-Jones and Earl Freddie Howe, all three being Patrons to the Young ME Sufferers Trust. Earl Howe is the Parliamentary Under-Secretary of State for Quality.

My communication was forwarded by Earl Howe to Matthew Harpur, Department of Health.  Mr Harpur forwarded it to Bill Davidson, Research Governance Manager, Department of Health, who has responded on behalf of Earl Howe.

Response from  Bill Davidson, Research Governance Manager, Department of Health on behalf of the Parliamentary Under-Secretary of State for Quality:

30 July 2010

Thank you for your e-mail of 16th July to the Parliamentary Under-Secretary of State for Quality regarding a research project involving the “Lightning Process” in 8- to 18-year-olds with myalgic encephalomyelitis. Earl Howe has asked me to reply.

You are quite right that new treatments should be compared with current standards to see which is better. You are also right that this comparison should be made in appropriate participant groups.

New treatments are not generally tried out first in children before there is evidence of their safety and efficacy in adults, but sometimes it is appropriate to do so. It is a matter for a research ethics committee to be assured that the evidence supports the extension of the new treatment to children.

We require the decisions of research ethics committees to be independent and free from bias and particular stakeholder interests. It would therefore be inappropriate to have a mechanism through which particular stakeholders might seek to affect a research ethics committee’s decision. We require research ethics committees that become aware of a possible breach of good practice in research to inform the relevant authorities so that they can take appropriate action.

Our National Research Ethics Service publishes lay summaries of the research approved by research ethics committees. It is normal practice for researchers also to put details of interventional studies on an open-access register, before the first participant is recruited, unless there is very good reason for delaying disclosure.

I note that the outcome of the research ethics committee review of the proposal for this project has not yet been reached. I expect it will, in accordance with Department of Health policy, come to a decision that takes account of all the ethical issues, including the appropriateness of the proposed participant group.

Yours sincerely,

Bill Davidson
Research Governance Manager
Department of Health
Quarry House
Quarry Hill
Leeds LS2 7UE
Tel: 0113 254 6184 / 07900 164755
Fax: 0113 254 6174
E-mail: bill.davidson@dh.gsi.gov.uk
Web: www.dh.gov.uk

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

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/

Inaugural meeting of the APPG for ME: Wednesday 30th June

Inaugural meeting of the APPG for ME: Wednesday 30th June

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

Update: On Friday, 25 June, the ME Association announced a change of date.  Please note that the APPG on ME inaugural meeting is now scheduled for Wednesday, 7 July.

Change of date for APPG on ME reformation meeting – now July 7

“Unfortunately, the Westminster meeting to reform the All Party Parliamentary Group on ME has had to be moved forward a week – to Wednesday, July 7. On the bright side, this does mean that there is more time to encourage your own MP to attend.”

Action for M.E. and the ME Association have published the following information:

Help make sure the All-Party Parliamentary Group for ME reforms

Tuesday, 22 June 2010

The All Party Parliamentary Group for M.E. (Myalgic Encephalomyelitis) strives to support the improvement of health and social care of all people with M.E. in the UK. All APPGs were dissolved at the end of the last Parliament before the general election. Arrangements are being made to re-register this group as a matter of urgency.

An inaugural meeting of the APPG for ME will be held by David Amess MP on Wednesday 30th June, at Westminster.

The agenda will deal with appointment of office holders and members only and due to limitations of time and space it will not be possible to open the meeting to the public on this occasion. This is in order to ensure that the vital work required to re-register the APPG is carried out in a timely manner for the 13th July deadline.

It is vital that as many MPs as possible join the group as we need to identify at least 20 Parliamentarians to act as qualifying members. These must include at least ten who are not part of the government and of which at least six are members of the main opposition party i.e. Labour.

If you would like to help please send your local MP an email or letter asking them to join the APPG. There is a draft letter here to help get you started.

Open Word document here on ME Agenda: Example letter

or here on the ME Association’s website or here on Action for M.E.’s website

Dear __________________

As one of your constituents, I sincerely hope you will strongly support the interests of people with Myalgic Encephalomyelitis (M.E.), the long-term fluctuating illness also known as Chronic Fatigue Syndrome (CFS), which is sometimes diagnosed as Post Viral Fatigue Syndrome (PVFS).

M.E. affects 250,000 people in the UK and is recognised by the NHS and National Institute for Health and Clinical Excellence to be as disabling as multiple sclerosis, rheumatoid arthritis, congestive heart failure, and other chronic conditions yet it receives nowhere near the same degree of recognition or funding.

A very powerful way of demonstrating this to your constituents would be to join the All Party Parliamentary Group for M.E. and to help it to re-register in the new Parliament.

An inaugural election of officers at a meeting of the APPG for M.E. to be held by David Amess MP on Wednesday 30th June. This will not be a long affair but is a necessary preliminary to re-registration before the 13 July deadline.

I do hope that you will be able to attend but if this is not possible, could you please join the group anyway. We need to identify at least 20 Parliamentarians to act as “qualifying members” in order to remain on the approved list.

Yours sincerely

 

Ed: Note that this meeting is not a public meeting and the room number and time are not being publicised. If your MP expresses an interest in attending the inaugural meeting you may need to contact Action for ME’s Policy Officer, Tristana Rodriguez (tristana.rodriguez@afme.org.uk) and ask for details of the meeting to be forwarded directly to your MP.  Alternatively, refer your MP to David Amess, MP, outgoing APPG for ME Treasurer, who is convening this inaugural meeting.

Minutes of previous APPG for ME Meetings and Legacy document

The APPG for ME website has PDF copies of Minutes of meetings going back to 31 January 2001 collated at: http://www.appgme.org.uk/minutes/mintues.html

APPG Legacy Paper 26.02.10

 

Clarification regarding membership of the APPG for ME

There have been misunderstandings on some forums that AfME (Action for M.E.), the MEA (The ME Association), AYME (Association of Young People with ME), TYMES Trust (The Young ME Sufferers Trust), The 25% ME Group, ME Research UK, BRAME (Blue Ribbon for Awareness of ME) and RiME (Campaigning for Research into ME) are all members of the All-Party Parliamentary Group for ME.

None of the above are members of the APPG on ME.

In the case of Associate Parliamentary groups, applications for membership may be considered by the group’s officers from organisations, interest groups, commercial concerns and individuals other than MPs or Members of the House of Lords.

But the All-Party Parliamentary Group for ME is not constituted as an Associate Parliamentary Group and therefore only Members of the House of Commons or the House of Lords are permitted membership of the APPG for ME, and only Members of the House of Commons or Lords have voting rights at its meetings.

So the only members of the APPG for ME are parliamentarians.

From the office of the Parliamentary Commissioner:

“Groups are only required to register with us the names of their officers and of 20 ‘qualifying members’. The full membership list, including names over and above that, resides with the group and it is for them to ensure that it is comprehensive and up to date. […] Any MP (ie not just signed up members of the group) is entitled to turn up at any meeting of the group, and to speak and vote at the meeting – unless a subscription is charged in which case voting may be restricted to paid-up members of the group.”

At the time of publication, the House of Commons Session 2009-10, Register of All-Party Groups [As at 12 April 2010] can be accessed here:

http://www.publications.parliament.uk/pa/cm/cmallparty/register/memi01.htm

INTRODUCTION

The Nature of All-Party Groups
Purpose and Form of the ‘Register of All-Party Groups’
Purpose and Form of the ‘Approved List’ of Groups
Administration of the Register and Approved List

At the time of publication, the Registry entry for the outgoing APPG for ME group could be viewed here:

http://www.publications.parliament.uk/pa/cm/cmallparty/register/memi422.htm

Under “BENEFITS RECEIVED BY GROUP FROM SOURCES OUTSIDE PARLIAMENT” Action for M.E. and the ME Association are listed as jointly providing the secretariat to the Group.

“Action for ME and The ME Association both provides secretarial support (addressing and stuffing envelopes, taking minutes, photocopying).”

In the past, AfME and the MEA have alternated the task of minute taking and the preparation and circulation of minutes and agendas for these meetings but they are not members of the APPG Group and their status as organisations and that of their representatives in relation to the Group is no different to that of any other organisation that sends a representative to attend these meetings.

Although APPG groups are not permitted to advertise their meetings as “Public Meetings”, meetings of the APPG on ME are held in House of Commons committee rooms and have been opened up to members of the public, that is, national ME patient organisations, representatives of the committees of “local” and regional ME support groups and other interested parties. 

They are also open to members of the ME community and their carers, who can and do regularly attend and contribute to these meetings. This has not always been the case and the presence of members of the public is at the discretion of the APPG chair and committee.

So none of the following five national registered membership ME patient organisations are members of the APPG for ME but they attend APPG meetings, send their representives to meetings, and in the case of AfME and the MEA, have provide the secretariat function: AfME (Action for M.E.), the MEA (The ME Association), AYME (Association of Young People with ME), TYMES Trust (The Young ME Sufferers Trust), The 25% ME Group.

ME Research UK : a research organisation and registered charity (Scotland), represented at APPG on ME meetings by Mrs Sue Waddle, a former trustee of Invest in ME.

BRAME : unregistered, non membership, run by Christine Harrison and her daughter, Tanya. Both Christine and Tanya attend APPG on ME meetings.

RiME : unregistered, non membership, run by Paul Davies. Paul Davies attends APPG on ME meetings, sometimes supported by other individuals.

The names of ME patients and carers attending meetings are recorded in the minutes of meetings and their contributions to these meetings are minuted.

For the past couple of meetings, an official verbatim transcript has been prepared from an audio recording of the procedings and this has been published alongside briefer minutes. This parliamentary service has been funded by Action for M.E. and the ME Association.

It is not known whether transcripts will continue to be provided for the meetings of any new group that may be convened. It is unconfirmed whether minutes will be published for the inaugural meeting or whether representatives of the outgoing group’s secretariat will be present.

I hope this clarifies any misconceptions about policy and proceedings at these meetings and the status of the organisations and individuals who attend them.

A Guide to the Rules on All Party Groups can be downloaded here:

http://www.parliament.uk/documents/upload/PCFSGroupsRules.pdf

or opened here on ME agenda

APPG Groups Rules

Summary ME Association Board of Trustees meetings 14, 15 June 2010

Summary of ME Association Board of Trustees meetings 14 and 15 June 2010

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

ME Association  |  17 June 2010

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, June 14th and on Tuesday morning, June 15th 2010.

This is a summary of the Board meetings – not the official minutes.

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

MEA website: http://www.meassociation.org.uk

PRESENT

Trustees:

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

MEA Officials:

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

Apologies:

Rick Osman (RO)
Janet Thomas (JT)

FINANCES, ADMINISTRATION, PREMISES AND STAFF

ED updated trustees on the current financial situation. This was followed by a discussion on the monthly management accounts for the period up to the end of April 2010. There has been a drop in some areas of income during the past few months when compared to the same period in 2009 – unrestricted donations and bank interest in particular. As a result, general expenditure is currently running slightly ahead of unrestricted income.

However, income from fundraising has shown a significant and welcome increase over the same period in 2009 and in order to cope with the increased demand on fundraising support services it was decided to create a new part-time post to deal with fundraising administration with immediate effect. Details about this new post will be placed on the MEA website when trustees have agreed the job description.

There has also been a significant increase over the past twelve months in the ring fenced funding held by the Ramsay Research Fund for research purposes.

Trustees once again reviewed the current ‘best buys’ for interest-gaining options in relation to money kept in the business and Ramsay Research Fund deposit accounts.

The new computer equipment for Head Office staff is now fully installed and working in a satisfactory manner. GB reported that a few minor problems have still to be resolved.

Trustees discussed some possible changes to The MEA Memorandum and Articles of Association to take account of expected new charity legislation.

Trustees passed on best wishes to Lucy Kingham, at Head Office, who will be taking maternity leave in October.

FORWARD PLANNING

Trustees held a further discussion on the future growth of the MEA. This work includes looking at areas of priority for expansion of the services we already provide and new services that we would like to provide if/when the financial situation allows us to do so.

RiME: Notice and Letters 11/5/10

Campaigning for Research into ME (RiME):  Notice and Letters 11/5/10

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

www.rime.me.uk

From Paul Davies

11 May 2010

Campaigning for Research into ME (RiME)

Hi,

Thanks to those who have sent good wishes re. my bout of shingles. Slow progress…

Trying to catch up on correspondence… Because of increased and increasing support for RiME it gets increasingly difficult to reply to everthing. If you have sent a letter/email recently which you feel warrants a reply, please try again.

Good Wishes, Paul rimexx@tiscali.co.uk  www.rime.me.uk

Selected Letters Oct. 2009 – April 2010

Views expressed in the letters do not necessarily reflect those of RiME.

Ref: 799 Grampian

Thank you for sending me the latest newsletter. As always, the newsletter is realistic with regard to all aspects of the ME situation. When will this change in the UK?

The leading ME charities seem to go round in never ending circles achieving very little for neurological ME patients. It is as though they are reluctant to admit that they are representing both G93.3 patients and F.48 patients at the same time. Is this because they don’t want to choose between the two groups? Is this why they still back the ludicrous CFS clinics dolling out CBT/GET? Who profits from this approach?

Worryingly these are the groups who supposedly “represent” neurological ME patients in the UK. They should truthfully state which group of patients they represent. Or perhaps it is time for a new ME Group which truly represents neurological ME patients. Perhaps an alliance between some of the already existing smaller pro-neurological ME groups? I like the idea of one “UK ME Society” representing G93.3 patients only. Sounds quite a good name too because it incorporates all sufferers the length and breadth of the UK.*

It is incredible that following the latest XMRV research results the MEA is not recommending that research scientists should adhere to the stricter Canadian Clinical Guidelines for research patient selection. This says it all. Why does the MEA wish to leave the research door wide open to include F48.8 patients?** Do they really want both G93.3 and F48.8 patients to continue to be lumped together, thus watering down research results? Don’t they want to find a diagnostic test, followed by appropriate treatment? Or do they want ME patients to remain in the Chronic Fatigue/F48.8 mire for all time? If this is the case then a new UK ME Group is sorely needed…

Ref: 804 London

Thank you for the last Newsletter. Excellent. Yes, how we do get rid of AfME + MEA? Perhaps it’s something that needs to be discussed on the internet. Would you consider putting this letter on message boards? The point is: If the vast majority don’t feel the above are acting in their interests (indeed, many feel they are acting against them in that they are not really about G93.3 ME) then let’s robustly discuss that knotty problem ‘how do we get rid of them’?

1. It’s excellent to see their respective memberships nose-diving but the trouble is, will they not be propped up by Government funding? Could we petition the Health Department asking that Section 64 funding be withdrawn?

2. I find it difficult to think of anyone now who genuinely supports them. I know a few who still get their awful rags because ‘they want to know what’s going on’. Is there a way that more people can access their information but without subscribing ie share-swaps or info. being circulated via ‘net.

3. Challenge those groups who still support them – it never ceases to annoy me when I see a Local Newsletter which says at back ‘useful addresses – AfME, MEA… ‘ Too often the wrong people get to run local groups – there seems to be so many troglodytes and blissninnies who feebly accept the status quo; sadly, too few challenge what they do re. the larger picture.

4. The obvious way to get rid of the above is for us to start a new national ME Society*. But without the backing of a wealthy philanthropist, it won’t be easy… If the philanthropist doesn’t materialise, could one have a process where ME patients pledged money as they did re. the Judicial Review. Tricky. Would people be prepared to do it without knowing exactly what the end product would be?

Food for thought…

Ref: 806 Lincs

I wish I had the energy to write a long post about my NHS experience however to summarize:

I had similar experiences as people here.
Each session of the NHS CFS group was 2 hours long, this was at least 1hr too long. It made it a 3-4hr event.
They made us sit on school class room style chair, agony.
If/when you left they blamed you for not cooperating so it didn’t go into any statistics I went to 6 out of 8 sessions. When I left half had gone already. The ones that stayed seemed to have other conditions.
It sent me into a bad relapse.
It was even suggested I leave my wife and children to avoid stress.
It was horrendous, I didn’t get to see a consultant or even a doctor.
I had my initial assessment with a nurse and the sessions were run by an OT.
No tests or specialist help just relaxation and exercises to stop my negative thinking.

Bad bad bad…

Ref: 810 Glamorgan

APPG Legacy Document… This is a deeply depressing document.

Can we get anywhere while the Group pretends its remit is ME, but acts as if it’s CFS?

Perhaps the answer is to split it into two separate Groups. Those who favour the psychiatric clinics to call themselves APPG on CFS. Those who commit themselves only to ICD-10 G93.3 ME to use the existing name, the Canadian Consensus Criteria &/or the Nightingale definition of ME, and pursue biomedical research and treatments specifically for ME and provision by the DWP appropriate to a disabling neuroimmune disease?

You deserve several medals for plugging away at this so faithfully…

Ref: 813 Norfolk

… Just want to register at this point my ongoing gratitude and continuing support for your efforts to make us heard!
and also to applaud those efforts of the other-equally beleaguered-ME sufferers at these meetings – please don’t let them silence any of you – I only wish I was well enough to attend myself; alas have now been housebound for months
But you need to continue to speak up because you are just about the only people there who are actually stating the facts and representing the true needs of ME patients. Without your voices we will all be gagged.

Lady Mar should step down in my opinion, since she seems completely unable to control her temper it follows that she is hardly a suitable person to act as Chair…

Ref: 816 Yorks

… I must congratulate you. When you first notified me about the Inquiry, the common question was “will it try to concoct a favourable report and publish it in the run up to the next election?”

I think your actions have helped ensure that did not happen. It sounds quite awful what happened to you at the last meeting. The current APPG does not appear to be fit for purpose. Let’s hope after the election, the situation will improve.

A big “THANK YOU” for your sterling efforts, which hopefully is a step towards stopping the abuse of patients, given the unsupported diagnosis of ME/CFS.

I discovered the report on 10th January; it was unacceptable the way it was presented to the APPG. It was also very discourteous that Dr Turner did not even acknowledge receipt of papers people sent in. We were not told when the hearings took place. We were not told the Interim Report had been issued….

Ref: 822 Birmingham to Parliamentary Commissioner

… I understand that you have been contacted recently by ME sufferers who attended the APPG meeting for ME held on the 2nd of December last year. I wish to add my support to their complaint.

I think it may help if I give you some background information that has given rise to unhappiness that is surfacing at meetings. Currently there is tension amongst the ME community due to the fact that they feel their illness is not being taken seriously at Westminster. Part of the blame for this stems from what sufferers see as a failure of ME charities and their supporters to adequately represent them. Because of this, some feel they have no choice but to struggle to meetings in the hopes of trying to educate politicians as to how dire their situation is. People such as I who have been ill for twenty- two years cannot make the trip to London and are extremely grateful to sufferers who do make an effort; aware that many do so at a cost to their own health. Nevertheless and regardless of their efforts, politicians still only see ME charities as being representative of all sufferers and show favourable bias towards them. Whilst recognising that meetings only have a limited time in which to conduct business it needs to be borne in mind that the APPG for ME has been in existence for just over a decade, yet not one success can be pointed at to justify its cost to the taxpayer. The equivalent of a business plan has never been put forward. Had politicians developed one it would have shown a real commitment on their part, and gone some way to show to the public what expectations they should have, and what can reasonably be achieved by a group having APPG status. As a result dissatisfaction with the APPG group has steadily grown.

At the moment it is far too easy for group politicians to portray the public as being awkward or aggressive when the group’s lack of progress is being brought to their attention, but unfortunately that is what is now happening. In my view politicians appear to feel that just showing a willingness to be involved with ME, is in itself enough for nothing other than gratitude to be shown towards them. Whilst I and many others are grateful if a politician shows an interest, there seems little point if nothing of any substance ever materialises. As you know yourself living in a democracy allows people, if unhappy, every right to say so without fear. This ought to be obvious to the politicians involved. They should also be aware that they are displaying poor judgment when they show not only an unwillingness to listen, but believe it acceptable conduct to flounce out of meetings. Their actions only feed into underlying concerns the public in general have regarding the standard of politics in the UK. Concerns that are understandable given what is being currently being said in the media.

I am also worried that – as an election is on the horizon – there may have been some manipulation of events at the last few APPG meetings, in order to try to justify the current APPG not being reformed when a new Parliament reconvenes. This would leave only ForwardME as the only ME lobby group within Westminster; a group in which it has been made quite clear to the ME community that only people acceptable to it are allowed to attend…

(Ed. copies to RiME of letters sent to Parliamentary Commissioner go into double figures).

Ref: 830 Kent

Thank you for the summary of the APPG meeting, and for standing up for ME patients. I hope it didn’t take too much of your energy, it’s appalling that they respond in the way they do. R says don’t let the xs get you down….

Thank you again for your email. Surely there will be a breakthrough in someone’s research somewhere in the world and the politicos and Wesselyites will have to eat mounds of humble pie. Won’t that be bliss!

Ref: 832 Yorks to Daily Telegraph

A letter appeared Feb. 6 entitled ‘Breaking the ME Enigma’, which says in para. 4 ‘it is time the nation started taking ME seriously’. I wish to comment on the said letter by pointing out the following:

The rank and file have been trying to get the nation to do this since 1997… Often it has been done without any support from the main groups who seem content to let things ride referring to any such attempt as counter productive, and sitting on the side lines… Some representatives from these groups have even signed the letter.

Any progress in the nation becoming aware of ME of which there are many enlightened citizens has been done by the rank and file going among them, it is a sad fact that the establishment is not as enlightened, a point which the general public have often commented on at fundraising and awareness events.

Other signatories are members of the APPG on ME, which when it was formed as a result of action taken again by the rank and file between 1997 and 1998. In eleven years the APPG has not once championed the cause of ME biomedical research, but have debated other issues and when complaints have been made at meetings have threatened to evict anyone who disagrees, as a result of this dictatorial behaviour they have been reported to the Parliamentary Commissioners for Standards….

Yes ME has needed the enigma to have been broken and resolved but this should have been done long ago, by those whom we looked to for leadership but were sadly let down…

Ref: 835 Dorset

I hope you don’t mind me emailing you but x y posted your message about the latest APPG debacle on Facebook. Firstly, thank you for all you do. I am in agreement with your comments regarding certain members of the APPG. They seem to be conducting highly irrelevant investigations into what amount to highly irrelevant NHS services. I have pointed this out to many people including CS of the MEA but there seems to be a reluctance to admit any fault….

Anyway, I understand that Des Turner is stepping down as chairperson so it could be an opportunity for some new blood in the group. My MP, Annette Brooke (Lib Dem) might be somebody to approach about this. She has shown a lot of concern towards me and my worries about the lack of research into ME. You may have seen the adjournment debate she led in parliament a few weeks ago. I was partially responsible for this although I wasn’t entirely happy with the early part of the speech (I wrote the second half!) as it was rather too complementary about our local ME clinic/support group which quite frankly are a disgrace….

Ref: 837 London

… The Internet is a powerful tool which can work to ME patients advantage, especially in terms of exposing the national ME Charities’ errant ways. Running Internet Services is not an easy job, and there can be a fine line between freedom of speech and moderation. However, if a person makes accusations which are inaccurate and unfair, then one wonders if a line has been crossed. Critical comments have been made recently about persons attending the Dec. 2 2009 APPG meeting, with words such as ‘rude’, ‘aggressive’ and ‘disruptive’ being used.

I was there that day. For the record: No ME patient acted rudely. No ME patient acted aggressively. The only rude and aggressive behaviour came from politicians. Consequently, several have complained to the Parliamentary Commissioner.

Distorted and exaggerated accounts are too readily accepted by a few Internet users, and they need to be more careful what they write.

Disruption? That is a moot point. If there was, fine with me. The way the APPG Inquiry into ME/CFS Services was set up certainly needed challenging (with only AfME and MEA being consulted re. writing of Report). Moreover, if ME patients hadn’t spoken up at the start of the meeting, I dare say they wouldn’t have been given the chance.

The whole thing stinks. Talking to friends around England, I don’t get any good reports on the clinics set up following the CMO Report; indeed, the opposite – more GET, CBT… Yet the APPG, in conjunction with AfME and MEA, has published a Report which does not accurately reflect how ME patients feel…

‘Relax, we’re winning, XMRV… ‘ I don’t subscribe to that view; it smacks of complacency, if not Micawberism. The Government in cahoots with ‘Wesselyites’ will hold out for as long as they can. Why? Money, of course. If replicated test results from ME patients show anomalies, we still have a mountain to climb.

Note the evolution of the Wesselyite argument: First, didn’t they say ME doesn’t exist? Now, are they not saying that there is a biological element but it is still largely psychosocial; treat the latter, and ME patients will improve/recover? Their studies (not about strictly defined ME) provide the Government with a cheap option which I think they will cling to for as long as possible.

So, we must challenge clinics set up following the CMO Report upon the ‘Wessely model’. Congratulations to those who had the courage to speak out on Dec. 2; they deserve our loyalty and support…

Ref: 842 Lancs

Dear Mr Turner

You are to be commended for your courage in taking the chair at any meeting concerning ME. Obviously you must have been aware previously that there is a sizeable bone of contention between certain factions of those people who are focused on progressing the interests of ME sufferers. That such a rift exists, reflects the wide variations in the severity of the condition (a variety mentioned by the Minister himself) and is a considerable factor behind such bitter disagreement.

From the minutes of the last APPG meeting it seems patently clear to me that you (and the Countess) do not acknowledge a similar act of courage to your own from ME sufferer Mr Paul Davis and some of his supporters given the severity of the condition encountered by these people. Merely attending the meeting is in itself an ordeal which prevents others with similar problems from playing any part in fighting their corner. Mr. Davis’s efforts are truly Herculean and the Chair, whatever the difficulties, must recognise this and, on all occasions, give respect, at least, to his views. Mr Davis and his supporters are fighting for their very lives and this cannot be said, with the best will in the world, in respect of the “professionals” who represent the large charities. Mr Davis does indeed carry the hopes of many sufferers of severe ME who, however, are effectively disenfranchised by the fact that government and the APPG meetings both operate from a far corner of the UK so that, given their debilitating illness, they find the time and distance to be problems which they are completely unable to endure. Let this never be forgotten.

Quite frankly, your treatment of Mr Davis was nothing less than appalling and revealed a complete lack of skill for anyone acting as Chair. You openly admit, as reported in the minutes, that AFME and MEA were the only groups consulted, a fact which needed to be brought to attention at the outset. Your “reason” for carrying out this act of impartiality being “because they are the only people who assist with the running of the Group” (APPG) is completely outrageous and does not bear thinking about. (I trust that this is not a usual Parliamentary practice). Given the widely known polarised views on ME, this impartiality is a blatant slap in the face for Mr Davis and his supporters in RIME.

To the injury supplied to Mr Davis above you then had the audacity to add insult. Your recorded stab at Mr Davis “I know you feel that you represent MILLIONS of patients” was unacceptably contemptuous. (It is, however, pertinent to state what the Minister himself said, that the number of ME sufferers is not actually verifiable, which is a comment in itself about the progress made with M.E.). To cap it all, the minutes record that, in repost to a supporter of Mr Davis that “important points” had been made by Mr Davis and his colleagues, you retorted “I have yet to hear one.” Bias, Mr Chairman? You supply any synonym you like….

Ref: 844 Kent

… I’m so sorry to hear that you’ve got shingles; really nasty. I hope it soon abates. It was a great pity that you had to miss the latest APPG meeting; I’ve been trying to get there for the past year or so, but it’s still beyond me at the moment.

Was really glad, though, to see – on ME Agenda – Chris Ellis’s excellent letter condemning the treatment you were afforded at the previous meeting, behaviour which was truly appalling and at the same time cutting to the chase on what the APPG should really be about. Will they take notice I wonder…

Not a lot of hope out there for us at the moment with the conflicting XMRV test results floating about. Have just finished reading Hillary Johnson’s Osler’s Web… fascinating and illuminating, bringing home how serendipitously ME (or CFS as it was in the States) became ‘associated’ with psychological problems, and in such a cynical way.

Have just read the APPG Governance procedures, which seem to indicate that the Chairman is always right…

Please don’t respond, you’ll have enough on your plate coping with yet another painful and debilitating symptom; just wanted to get in touch to give you my support. Will try to take some action on the Report.

Ref: 846 Surrey

To RiME,

Letter to Lady Mar… Don’t let the Blissninnies and PollyAnnas get you down.

Dear Lady Mar,

I have read the full transcript of this meeting (APPG on ME Dec. 2 2009).

Myself and others associated with ME congratulate Paul Davis RiME on the points he made at the beginning of the meeting. He was quite right to ask who was consulted regarding the writing of the Report on ME/CFS Service Provision, and to raise concerns in that respect.

These were valid and legitimate points.

I don’t know anyone, incidentally, who is attending the clinics set up following the CMO Report 2002.

Can I ask, therefore, why you asked for him to be evicted? …

Ref: 851 Leader of Manchester Group

Charles. Yes it is a funny old world. The whole scenario reminds me of the fable of the Emperor’s new clothes. A case of collective denial. I don’t know where you’re getting your feedback from maybe you could share it with us.

There is not one single children’s NHS clinic that doesn’t treat ME as a psychosocial illness. The APPG report doesn’t see this as a problem. It ‘accidentally’ omits the advice of the TYMES Trust and repeatedly quotes Esther Crawley, the staunch Wessely School specialist. If Des Turner gets his wish and CFS/ME children’s clinics are funded throughout the UK we will almost definitely see more of the same. The number of children being forced into harmful/abusive psychosocial treatments will dramatically increase. Why on earth would people with ME want to thank Des Turner for that?

The MEA’s repeated excuse of supposed ‘feedback’ to try and justify their atrocious position on the clinics is beginning to grate.

The MEA justify their backing of the clinic (which almost entirely consist of psychosocial treatments) by quoting feedback of those who most probably have psychological chronic fatigue.

*Ed: The ME Association has already registered “The ME Society” with the Charity Commission as an alternative name to its operating name.

**Ed: If the author is referring to ICD-10 Neurasthenia, the ICD-10 code is F48.0, not F48.8.