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/

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

Adjournment Debate: Myalgic encephalopathy Mrs Annette Brooke 23 February 10

Adjournment Debate: Myalgic encephalopathy Mrs Annette Brooke

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

Hansard transcript appended also available on They Work For You

Mr John Bercow, Speaker of the House of Commons, is a Patron to the ME Association.

In June 2002, Mr Bercow had spoken about the need for ME research in a Commons adjournment debate. Text appended below yesterday’s debate.

John Bercow, MP Speaker of the House of Commons        
Annette Brooke, MP       
ME Association

[In connection with the MRC: Yesterday, I contacted the MRC’s Ms Rosa Parker for an update on when the Note of the workshop held by the MRC CFS/ME Expert panel on 19 and 20 November 2009 is anticipated to be published.  It is understood that it is also intended to make available presentation slides from the workshop. I will update when I have a response.

Update @ 24 February  According to the response received from the MRC, this morning, it is understood that the note of the workshop is currently being finalised and will be available on the MRC’s website within the next few weeks and that copies of speakers’ presentations will be published at the same time.]

Adjournment Debate: Myalgic encephalopathy Mrs Annette Brooke (Liberal Democrat, Mid Dorset & North Poole)

Commons Chamber
Meeting started on Tuesday 23 February at 2.30pm
ended at 10.48pm

http://news.bbc.co.uk/democracylive/hi/house_of_commons/newsid_8529000/8529089.stm

“Liberal Democrat MP Annette Brooke led an adjournment debate on ME on 23 February 2010.

ME (Myalgic Encephalopathy) is a debilitating condition that affects an estimated 17 million people worldwide.

In October 2009, US scientists claimed to have made a potential breakthrough in understanding what causes the condition.

Their research in the journal, Science, suggests that a single retrovirus known as XMRV plays a key role in causing ME.”

Watch live video stream again at:

http://www.parliamentlive.tv/Main/Player.aspx?meetingId=5828

Pick up at 07:44:59

Hansard transcript  ( also available on They Work For You )

http://www.publications.parliament.uk/pa/cm200910/cmhansrd/cm100223/debtext/100223-0022.htm#1002244000002  

23 Feb 2010 : Column 272

Myalgic Encephalopathy

Motion made, and Question proposed, That this House do now adjourn. -(Mrs. Hodgson.)

10.18 pm
Annette Brooke (Mid-Dorset and North Poole) (LD): I am pleased to have been able to secure this Adjournment debate on behalf of my constituents. Over my years as an MP I have had contact with a number of people with myalgic encephalopathy-usually known as ME-from all age groups, who have raised a range of issues with me. A common point is their frustration in being unable to carry on with their lives as they would wish, and not being able to access a range of services that might be needed, including education, employment, benefits and health services. My most recent encounter has been with a young person who, at a critical point in her promising career, has been diagnosed with chronic fatigue syndrome-CFS-is now unable to work, and came to my surgery asking for action. I am going to reflect many of her concerns during this short debate.

I am also in touch with the Dorset ME support group, and would like first to reflect on some of its concerns. It is estimated that there are probably more than 2,000 people in Dorset with ME, and the Dorset ME support group has more than 500 members. A representative made the following points to me. In spite of the chief medical officer’s report five years ago, there are still too many GPs and other health professionals who do not recognise ME or sympathise with those with the condition. However, when they are good, they seem to be very good.

The representative said that the group’s members with a diagnosis still want a diagnostic test to prove it, because of the doubt and suspicion that they sense, or are faced with, in others. We hope that researchers will address the need for co-operation rather than competition, so that progress can be co-ordinated and funds allocated in the most effective way. The Government have not been seen to be supporting CFS/ME research as urgently as they could. The group’s representative says:

“I don’t know if anyone has produced figures for the cost to the nation’s coffers of the hours of work lost, the benefits paid out, and the cost of treatment for those fortunate enough to be able to access it. It does not appear to be being taken seriously enough…Having to cope with dealing with the benefits system is beyond many of our members which is why we have a full time benefits officer to assist them.”

My constituent points out that apart from the fatigue itself, problems with cognitive function make it hard, if not impossible, for many people to complete the complex forms required by the Department for Work and Pensions. Having to attend a medical, sometimes a considerable distance away within Dorset-for example, people from Gillingham have to travel to Salisbury-adds stress to an already stressed situation. Patients who are assessed by the DWP as fit for work, either before they start treatment or while receiving it, usually have their recovery period set back by nine months to a year, again at a cost to the NHS, never mind the cost to the individual.

The Dorset ME support group says that in its experience, the high number of people with CFS/ME being found fit for work under the employment and support allowance regulations leads to a high number of appeals, presumably at considerable cost to the taxpayer. It states:

“Within the Dorset ME Support Group, all our ESA Appeals so far have been successful suggesting that the assessment system

23 Feb 2010 : Column 273

is not fit for purpose where people with ME is concerned. Disability Analysts are trained to look at the disability and not the nature of the condition…Joined up government seems to be lacking.”

I therefore ask the Minister to liaise with her counterparts in the DWP.

In Dorset we have a CFS/ME service for children and young people, based in Dorset county hospital and Poole hospital, albeit with very limited funding. The Dorset ME support group secured funding from BBC Children in Need for a part-time child support worker to enhance that service by providing liaison between families, schools, out-of-school education providers and the clinic, and by providing continuing support to the child and family at home. That frees up health professionals’ time so that they can concentrate on treatment programmes for the continuing flow of young patients. It has been pointed out to me that with the limit on funding, access to a doctor is limited. I seek the Minister’s advice on that, because clearly the Children in Need funding will run out with important work still to be done. The Dorset ME support group says:

“We are aware that some patients feel neglected by the NHS once they have completed their course of treatment. If all patients ‘stayed on’, the service would grind to a halt.”

One of my constituents comments that

“we are lucky that we have a specialist unit for ME at Wareham Hospital but more funding is required for follow up sessions”.

I now turn to the core purpose of my debate, which is to highlight the views of a young person who has undertaken a considerable amount of personal research and has strong views on the way forward. She is concerned about some of the issues that I have already highlighted, and particularly about the use of the term “treatment”. She has drawn my attention to the differences between myalgic encephalopathy and myalgic encephalomyelitis-I am struggling to pronounce them. The former was the title given to my debate, although I originally specified just “ME” as the title. My constituent has drawn my attention to a source that defines myalgic encephalomyelitis as inflammation of the brain and spinal cord, and myalgic encephalopathy as any non-inflammatory disorder affecting the brain. The same source goes on to state that some doctors and certain charities claim that the problem with ME is that there is no brain inflammation, which is represented by the “-itis” in encephalomyelitis. Certain organisations have therefore decided to keep “ME” in their name, but with the “E” standing for encephalopathy, which, as that definition shows, means disease or dysfunction of the brain without inflammation.

Many distinguished scientists have questioned the abandonment of the “-itis” part of the word. Dr Bruce Carruthers, author of Canada’s guidelines on treating ME, wrote that

“-itis is well established in the name ME, and there is no good reason for changing it, since -opathy would not reduce our state of ignorance re ME but serve to further confuse everyone-perhaps that is one of the motives behind the suggestion.”

Professor Malcolm Hooper from Sunderland has explained the implications of changing the name of the illness, stating:

“Despite the claims of some psychiatrists, it is not true that there is no evidence of inflammation of the brain and spinal chord in ME; there is, but these psychiatrists ignore or deny that evidence”.

For the avoidance of doubt, I shall use the abbreviation ME to stand for myalgic encephalomyelitis.

23 Feb 2010 : Column 274

In general terms, it is suggested that up to 250,000 people are affected by the condition, and symptoms can vary from poor memory and concentration to debilitating fatigue and painful joints and muscles. It can affect all types of people and its causes are not fully understood. It is not a small problem. It is estimated that five times as many people in the UK are categorised as having CFS/ME as have HIV. More than 70,000 are so ill that they are bedbound and require round-the-clock care. The condition affects not only patients, but their families and friends. Schooling, higher education, employment, and subsequently income, social life and family life may all be affected.

Yet how much do we really know about the condition and effective treatment? What is currently on offer? The Gibson report way back in 2006 made many important points, including the fact that the World Health Organisation holds an internationally recognised classification of ME as a neurological illness. The report made many more points about the need for research and a serious examination of the international evidence. It said that the necessary research must be funded immediately, so why is that not happening?

My young constituent has been diagnosed with CFS, a complex disorder characterised by extreme fatigue that lasts for six months or longer. ME is a neurological condition as defined by the WHO. It can present with fatigue as a symptom, but that is not always the case. The causes of ME and CFS are currently unknown, although many scientific studies have shown links to viruses, immune deficiencies and exposure to chemicals.

My constituent has written to tell me that unfortunately, CFS and ME have become lumped together in the UK, allowing the medical profession to dismiss the neurological problems that ME sufferers face, and to deny access to tests that could allow more specific diagnoses. The problem with seeking medical advice on the subject of ME stems from the fact that doctors are under-educated in this area. Many still consider it a psychological condition-which, particularly in the light of recent research in other countries, is simply wrong.

My constituent points out that there are currently no treatments for patients categorised as having CFS/ME. Cognitive behavioural therapy and graded exercise therapy are offered as a means of managing the fatigue aspect of the illness. The Medical Research Council has to date funded research only into the psychosocial aspects of the illness and the management of fatigue: £3 million was spent on a recent pacing, activity and cognitive behaviour therapy randomised evaluation trial, which examined CBT, GET-graded exercise therapy-and other fatigue management techniques, and £8 million was granted to allow specialist CFS/ME centres whose treatments are based on such techniques to be set up around the country.

Those centres and general practitioners, guided by National Institute for Health and Clinical Excellence guidelines for CFS/ME, regard CBT as a treatment. However, my constituent believes that promoting CBT as a treatment is incorrect. If effectively delivered, it might help some people to manage their fatigue, but it cannot remove the cause of their illness. CBT is often used in assisting patients’ recovery from cancer and other serious illnesses, and is based on the principle that impairment in daily functioning is due to one’s distorted thinking or cognition, but in the case of ME, impairment

23 Feb 2010 : Column 275

in functioning is not due to those things. If medical tests are done on people with true ME, they would show many abnormalities and physical reasons for impairment in functioning. However, patients diagnosed with CFS/ME rarely get access to any kind of medical testing.

The Medical Research Council funding for biomedical research into ME is next to nothing in comparison with the funding provided for the perceived psychosocial aspects of the illness. The extent of biomedical research into ME has been questioned before. The Government have stated that the reason why the MRC has not funded any biomedical research is because there have not been any good or innovative applications. This is just not true: one scientist, who has applied for and been denied funding, says:

“We have applied several times to the MRC”.

This scientist has done some privately funded research into gene expression in CFS/ME.

I do not doubt that there are others who have tried and failed to gain MRC funding, but it is very difficult to find out precisely which applications have been refused. There have been freedom of information requests from patients to find out why the biomedical proposals were rejected, but they have not been successful. It is possible to see how many applications have been made and how many were accepted and refused, but it is not clear which of those were biomedical proposals. Why can the MRC not be more open about this?

My constituent tells me that since 2008 the MRC has set up a panel of experts to look into ME and the research on it. One problem with the panel is the wide range of disciplines covered by its members. It is difficult to see how that panel could work for the benefit of people with ME and their families if the members maintain such opposing views of the illness. As long as ME exists as a diagnosis, the range of conditions that probably come under this title cannot be addressed. It would seem to make more sense to distinguish sub-groups of ME and to acknowledge that research on those sub-groups is the logical way forward. Two years on, the expert panel has yet to take any visible action on the issue of biomedical research. That must raise the question of how urgent it feels the issue is.

For a balanced view of ME, the Government and the MRC should embark on a consultation of all interested parties. That would obviously include the patients themselves. The MRC and the Government currently get their information about patients from charities set up to help those with ME. However, my constituent believes that the two charities that the Government currently consult for advice on ME give particular emphasis to the need for care for, and support of, patients. She is concerned that that can only increase the misunderstandings about the illness, and in itself could suggest that all that patients need is support and sympathy. She feels that that need should go without saying, but that it should be acknowledged that until more is known about the biomedical aspects of ME, care for patients with the condition can not possibly be adequate or effective. In the short term, care is clearly very important, but for the benefit of future as well as current sufferers, new research must be done.

The main charities talk about biomedical research, but are they taking enough action to instigate such work? There are, however, other charities that represent

23 Feb 2010 : Column 276

the interest in research, and Invest in ME is one such charity. It holds an international conference every year-this year it will be on 24 May-whose aim is to highlight the need for a national strategy for biomedical research that will lead to treatment and a cure for this devastating illness. ME Research UK and the 25% ME Group-which represents the seriously afflicted-are two charities with similar mission statements.

My own view is that until we know more about the condition, management of the symptoms is an important process. However, it is clear to me that the way forward is to fund biomedical research to find causes and treatments. I believe that that would unite everybody concerned with this debilitating condition. Until that research is done, no one can possibly claim to understand the illness fully, so treatment cannot progress. On behalf of my constituents generally, I call for a complete review of research into ME.

To help address the unique challenges posed by a complex and poorly defined condition such as ME, I would like to call for the establishment of an independent scientific committee to oversee all aspects of ME research. I would like the Government and the Medical Research Council to work with ME sufferers and biomedical researchers to achieve a proper understanding of the condition, challenge unjust perceptions and consider the issue of research funding.

The current NICE guidelines, by recommending CBT and GET, do not follow World Health Organisation guidelines, which categorise ME as a neurological condition. In failing to recognise the biomedical problems of ME sufferers, the NICE guidelines also fail to recognise the needs of ME suffers. My young constituent is right to challenge the current establishment views, and I ask the Minister to take these issues forward.

10.35 pm

The Minister of State, Department of Health (Gillian Merron): I congratulate the hon. Member for Mid-Dorset and North Poole (Annette Brooke) on securing this important debate. As we all know, she has pursued a close interest in the subject on behalf of her constituents with the condition of myalgic encephalopathy. ME is a potentially severe and disabling illness, and most commonly affects people aged 20 to 40. I am not in the least surprised, therefore, that she reflects so well the comments of her young constituents.

The truth is that the causes of ME are unknown. However, I want first to put on the record that we accept the World Health Organisation’s classification of ME as a neurological condition of unknown cause. I realise from the hon. Lady’s comments that that is an important acknowledgment. I was interested to hear of the work of the Dorset ME society, and I congratulate it on its efforts. I was also interested to hear of the provision made by the local NHS trust and of the views and experiences of her constituents. All that helped to paint a clear picture.

I recognise how distressing ME can be to people living with the condition, their families and those who care for them. I know that much of the distress is caused by the difficulties of recognition, acknowledgment and acceptance of the condition and its impact. As with other chronic conditions, ME can significantly affect physical and emotional well-being, and can disrupt

23 Feb 2010 : Column 277

work and social and family life. I acknowledge the points that have been raised so clearly by the hon. Lady. The case was clearly made that enhanced research, better services and a better understanding of the condition would all make a huge difference to the quality of life of people with ME.

We know that care for people with ME has varied widely, and in the worst cases has sadly left some people with the condition feeling that their illness is not recognised by the health system. In particular, there is a need for them to have access to health professionals with an understanding of their needs, timely access to appropriate services and treatments, and more and better information, communicated in a more understanding and thorough way. It is clear to me that people with ME need and deserve better services, and over the past few years we have sought to address those concerns. The hon. Lady made some important points about the provision and availability of benefits, and I will draw those comments to the attention of the Secretary of State for Work and Pensions.

On the NICE guidance, the hon. Lady will be aware that the Department of Health commissioned NICE to produce a clinical guide for the diagnosis, management and treatment of ME. The publication of those guidelines in 2008 was an important opportunity to change the existing situation for the better, helping both health care professionals and patients by providing advice based on evidence on how to best manage the condition.

Having said that, I am very aware that there are concerns about some of the approaches used for managing ME outlined in the guidelines, and we have to work with patient groups, researchers and other stakeholders to establish what treatment, or combination of treatments, will best help patients to get better.

The hon. Lady referred to cognitive behavioural therapy and the concerns about it not being an effective treatment. Sadly, there is no cure as yet for ME, as we know. Treatment seeks to help people with the condition and their symptoms. I am aware that there are concerns about CBT, but I am also aware that it is known to be helpful to some patients, when applied appropriately and with mutually agreed goals and principles. As with many of the management strategies currently available, it is important that we test out the evidence base. That is why the clinical trial PACE-pacing, graded activity and cognitive behaviour therapy: a randomised evaluation-will be so important in testing the effectiveness of treatments, so that patients can make informed decisions about their care.

It is also important to emphasise that clinical guidelines are not mandatory. The purpose of such guidelines is to support clinical decision making. They are also intended to assist primary care trusts in service development and redesign, but ultimately health professionals are free to use their clinical judgement and, in consultation with their patients, to decide on the most appropriate treatment options, taking into account individual clinical factors. The guidelines recognise there is no one form of treatment to suit every patient, and emphasise that it is necessary to have a collaborative relationship between clinician and patient if success is to be realised. Although all patients want to get better, none should be coerced into accepting any particular form of treatment. Management should always be underpinned by an ethos of joint decision making and informed choice.

23 Feb 2010 : Column 278

The emphasis on empowering patients to become genuine and informed partners in their care is also a key theme of the national service framework for long-term conditions, which is a means to an end, the end being the improvement of services for people with neurological conditions across the country. People with those conditions will get faster diagnosis, more rapid treatment and a comprehensive package of care. We are now working with a range of key stakeholders-for example, the patient groups that represent those with neurological conditions-to identify and develop practical tools and advice that can help local services and organisations to deliver the national service framework. That means that services for people with conditions such as ME will progressively improve over the 10 years of its implementation, through to 2015.

As we know, it is important that the NHS sets its own priorities locally, in response to local need and local circumstances. We acknowledge that there have been many requests for national service frameworks or strategies for particular clinical areas, including ME, so we have established a national quality board to advise on future clinical priorities and the steps that might be taken to promote clinical quality in the identified priority areas. Improvement in the commissioning of local services is absolutely at the heart of our health service’s capacity to achieve better results for patients, as well as better value for money.

As part of that, local involvement networks are critical in improving the commissioning of the right services. They play a key role in encouraging and enabling people to influence the commissioning and the provision of health and social care, and bring real accountability to the system. Part of how we improve services is by giving a stronger collective voice to patients and local groups associated with specific conditions such as ME. They can influence the decision makers to ensure that services are more responsive to their needs. Going by the hon. Lady’s comments, I am sure that she is working closely with the relevant groups and people to ensure that voices are heard and responded to. The correspondence and representations that the Department of Health receives from patients and patient groups show clearly the determination to influence local decisions. I would encourage people to continue with that involvement.

The hon. Lady rightly referred to young people and children, who have particular needs when they have ME. That is why services for children have been given such prominence by this Government. Nearly all children who are severely affected by ME, as well as many who are moderately affected, will require the provision of home tuition and/or distance learning. A critical element of care will therefore be the assessment and provision of educational needs. Children should have access to as much education as their condition allows, and local authorities have an absolute responsibility to ensure that they do so. An educational plan for a child or young person with ME is not an optional extra but an integral part of their treatment. Educational needs should be identified in the diagnostic process, and adequate provision of continuing education demands close liaison between GPs, community paediatric services, education services and, of course, the young person and their family.

As the hon. Lady said, research is the key to developing new treatments, transforming care and finding a cure for this debilitating condition. Research into ME continues

23 Feb 2010 : Column 279

to be a strategic priority area for the Medical Research Council. The MRC is one of the main public funders of medical research, receiving its funding through grant-in-aid from the Department for Business, Innovation and Skills. The MRC remains committed to supporting scientific research into all aspects of ME, including evaluations of treatments and studies of the biological basis of the condition.

In 2008-09, the MRC spent £728,000 supporting four separate projects in this particular area. Nevertheless, we recognise there is scope for an expanded research programme for ME. The MRC has set up an expert group, chaired by Professor Stephen Holgate, to consider how best to encourage new research into ME, and how to bring researchers from associated areas into the field. The expert group arranged a small research workshop on ME at the end of last year, and the results will be published on the MRC website in due course. We also need to address the fact that not enough proposals for research are coming forward for consideration.

We are aware of a recent high-profile study that suggested that xenotropic murine leukaemia virus-related

23 Feb 2010 : Column 280

virus, or XMRV, is present in a large proportion of people with ME. These results have received widespread media attention. They are potentially exciting, but it is important to note that reports from two separate UK studies do not support the finding of a link between XMRV and ME. It is clear that further research will be required to replicate the original findings, and to show a causative link between XMRV and ME. The MRC’s National Institute for Medical Research has a research programme on infection and the replication of retroviruses, including XMRV.

I thank the hon. Lady for bringing this important subject to the attention of the House. I commend the efforts made by her and others to raise awareness of it, which I believe will contribute to a change for the better. I hope that she will agree that the Government recognise the importance of the issues that she has raised, while understanding the immense challenge of ME and taking steps to address it.

Question put and agreed to.

10.48 pm
House adjourned.

© Lord Hansard

http://www.publications.parliament.uk/pa/cm200102/cmhansrd/vo020612/debtext/20612-34.htm#column_973

12 Jun 2002 : Column 973

Myalgic Encephalopathy

Motion made, and Question proposed, That this House do now adjourn.—[Mr. Jim Murphy.]

10.28 pm

Mr. John Bercow (Buckingham): It is my pleasure and privilege to speak tonight on the subject of myalgic encephalopathy. I do so with enthusiasm and commitment, the more so because I know that the debate will be answered by the new Under-Secretary of State for Health, the hon. Member for Tottenham (Mr. Lammy). He has had a meteoric but thoroughly deserved rise to office. I wish him well in fulfilling his responsibilities, and in particular I look forward to what he has to say in response to my speech.

In the House since 1997, interest in ME, or chronic fatigue syndrome, has been manifested in no fewer than 116 written and oral parliamentary questions; a number of early-day motions—three, if I remember correctly, of which the most popular was the one tabled by the hon. Member for Brighton, Kemptown (Dr. Turner) in November 1997, which attracted no fewer than 164 signatures; and several Adjournment debates. Of the latter, two in particular stick in my mind. The first was initiated by the hon. Member for Great Yarmouth (Mr. Wright), whom I am pleased to see in his place tonight. The chairman of the all-party ME group, he has devoted himself to the issue with remarkable results, and his conscientiousness has earned him the justified respect of hon. Members on both sides of the House. The other debate was introduced by the right hon. Member for Coatbridge and Chryston (Mr. Clarke), who is not able to be with us tonight; he spoke on 6 February this year, to telling effect.

My motivation is straightforward: the ME Association, which is one of at least six such organisations and does pioneering and appreciated work in the field, recently moved its headquarters from Essex to my Buckingham constituency—a thoroughly judicious choice of location. Its offices are on the Buckingham industrial park. I said that I wanted to support the association in its work, and I meant it. I pay tribute to the efforts of its chairman, Ian Franklin, its new chief executive, Val Hockey, its public relations and communications manager, Tony Britton, and the excellent medical adviser to the association, Dr. Charles Shepherd.

There has been a long-standing argument about the cause of ME or chronic fatigue syndrome, but about its appalling symptoms and consequences there can be no doubt. Due not least to the work of the hon. Member for Great Yarmouth, it is now, I am pleased and relieved to be able to say, a clinically diagnosed condition. It is severe and potentially disabling, resulting in muscle and joint pain, sleep disorder, sore throat and enlarged glands, and loss of balance, concentration and memory; it can cause intolerance of food, alcohol and even light. The House and the wider public must understand that ME sufferers experience sheer exhaustion and excruciating pain. Those are often the daily endurance and harrowing ordeals of sufferers, who can be afflicted by the illness at any time of their lives. A quarter of ME sufferers suffer depression as a result of their affliction.

Mr. Laurence Robertson (Tewkesbury): My wife suffers from ME. In addition to the crippling illness and

12 Jun 2002 : Column 974

symptoms that my hon. Friend has graphically described, one of the problems that my wife faces is that it is not understood that ME is a disease that often affects highly capable and very active people. I am sure she would want me to emphasise that to the House tonight.

Mr. Bercow: My hon. Friend is absolutely right—ME can strike someone at any time of their life and its effects can be variable and unpredictable. People can be well one day, and the next day be incapable of performing the most personal and simple task. I am grateful to my hon. Friend for making that point.

It is estimated that there are about 4,000 cases of ME per million of the population. The Effective Health Care bulletin recently speculated, with some authority, that ME sufferers comprise between 0.4 and 2.6 per cent. of the UK population. Millions of days are lost to ME in the workplace each year. The monetary impact is estimated to be about £4 billion. A 1997 study relating to schoolchildren found that ME was the single most common cause of absence from school.

However, there have been good developments. The establishment of the working group on chronic fatigue syndrome or ME was one such positive development. Set up by the Department of Health in late 1998 and chaired by Professor Allen Hutchinson, director of public health at the school of health and related research at Sheffield university, the working group was given important duties and has discharged them to admirable effect. The working group’s terms of reference obliged it

“to review management and practice in the field of . . . ME with the aim of providing best practice guidance for professionals, patients and carers to improve the quality of care and treatment for people with . . . ME.”

The group produced its findings on 11 January this year in relation to the diagnosis of the disease, its management and its treatment. There were several conclusions, with which the Minister will be broadly familiar. It was concluded that health care professionals should recognise the chronic character of the disease and co-operate with affected parties. Early diagnosis, instead of a third of people having to wait 18 months or more to be diagnosed, is viewed as a priority. There is a crucial imperative for clinical evaluation and follow-up, preferably by multidisciplinary teams. The quality of support from GPs in co-ordinating strategies and then, where necessary, making appropriate referrals to specialists must be part of the mix.

The focus on domiciliary services should not be ignored either. There is a role for therapeutic strategies. Some of them—cognitive behaviour therapy and graded exercise—have come to be extremely controversial. That is why many experts think that there should be a new emphasis on pacing, which will require a commitment from Government and other agencies. There is a role for patients in the management and treatment of their condition. There is an overriding need, on which everybody, from whatever side of the argument, agrees, for more research, not least into the physical causes of the affliction. In relation to children, it is thought that care is best co-ordinated by an appropriate specialist—usually a paediatrician.

I think it is a positive development that that work has been done and that we now have the endorsement of the chief medical officer, Sir Liam Donaldson, for the

12 Jun 2002 : Column 975

proposition that this is a recognised disease. The days in which it was pejoratively and offensively dismissed as yuppie flu, and as something whose resolution required people simply to get their act together, are rapidly being consigned to the dustbin of history.
I hope, however, that the Minister will understand that I want to put a number of particular questions to him. I do so making it absolutely clear that this matter is not a party political football as far as I am concerned. The Government have done considerable good work on this subject, so I am not cavilling at them, but performing the proper role of a constituency Member of Parliament as well as an Opposition Member in seeking to encourage still greater efforts from the Administration.

Who is now on the scientific advisory panel established by the Medical Research Council? The chief medical officer and the Government want the MRC to have such an independent panel and to produce a strategy. I think it was originally expected that that strategy would be produced by the end of February. Later, in debates both in the other place and here, it was suggested that we would hear further from the MRC in spring this year. We are now, even by the most elastic definition, into the summer, and a good deal that we had expected has not yet been forthcoming.

What patient involvement will there be in the work of the MRC? When will its biomedical and health services research strategy be finalised, announced and started? Does the Minister agree with me—and, I suspect, other hon. Members in all parts of the House—that the matter is pressing because too little is known about the aetiology and pathogenesis of ME? What use are the Government making of the ME Association’s booklet “ME/CFS/PVFS: An Exploration of the Key Clinical Issues”, which is authoritative and is designed to be useful to them in communicating to all the agencies, including general practitioners, good and effective practice?

What assessment has the Minister made of the levels of primary, secondary and tertiary care, and what plans does he have, on the strength of his few days in his important post, for their improvement? In the light of the fact that another Under-Secretary of State for Health, the hon. Member for Salford (Ms Blears), declared at column 1008W on 12 March this year that there was merit in the development of clinical learning networks at local level, can he advise the House whether there has been any progress on that subject? Is it his judgment that such work should be undertaken before, after or concurrently with the formulation of the MRC strategy?

Has the incapacity benefit handbook for medical service doctors been changed? The Minister will know—if he does not, that is excusable and he will soon be informed about the matter—that there is great anxiety that, in the past, not recognising the disease meant unfairness for sufferers who tried to get the benefits to which most of us now believe they are entitled. Has the handbook been revised? Has the changed decision, the new attitude and the reformed culture been communicated to the people who determine whether sufferers get that to which they are entitled? Is the Minister satisfied that people are getting what they are due?

© Lord Hansard

Next meeting of the All Party Parliamentary Group on ME

From the ME Association

The next meeting of the All Party Parliamentary Group on ME will take place on Wednesday, July 2 – when there will be a presentation on child protection issues affecting families where there is a young person with ME.

The meeting will be held in Committee Room 19, House of Commons, between 1 and 3pm.

The meeting will be open to members of the public. Before they travel, visitors should check announcements at the Action for ME and ME Association websites as the meeting room may change at very short notice if it is required by a parliamentary committee.

The presentation on child protection issues will be given by Jane Colby, executive director of the Young ME Sufferers Trust, and Mary-Jane Willows, chief executive of the Association of Young People with ME.

The Minister responsible for these issues in the Department for Children, Schools and Families, Kevin Brennan MP, has been invited to attend.

The meeting will also be the group’s AGM when officers are elected for the coming year. Several other important issues for people with ME and their families will also be on the agenda.

Entrance to the meeting will at the St Stephen’s Door to the House of Commons, and then ask the way to Committee Room 19. Please allow sufficient time in case there are big queues waiting to go through the security gatehouse. There is separate access for people in wheelchairs.

Minutes of the last meeting of the APPG have also been published at the AfME and MEA websites.

Tony Britton
Publicity Manager, The ME Association

Home-based: 60 Broadgate, Weston, Spalding, PE12 6HY
Tel: 01406 370293 Mob: 07880 502927    Email  tbritton02@yahoo.com

ME Association website

ME in Parliament: 28 April, 29 April and 1 May

Circulated by Dr. Marc-Alexander Fluks

Source: UK House of Commons
Date: April 28, 2008

URL: http://www.publications.parliament.uk/pa/cm200708/cmhansrd/cm080428/text/80428w0010.htm
Ref: http://www.me-net.combidom.com/meweb/web1.4.htm#westminster

[Written Answers]

Incapacity Benefits: Medical Examinations
—————————————–

Dr. Gibson

To ask the Secretary of State for Work and Pensions what steps he is taking to ensure that employment and support allowance assessments take account of the characteristics of different health conditions, with particular reference to the fluctuations inherent in symptomatic severity of myalgic encephalopathy; and if he will make a statement. [201834]

Mr. Timms

The new Work Capability Assessment for Employment and Support Allowance will be a fair, robust and accurate assessment of limited capability for work which takes account of all conditions, including those that are long term and that fluctuate such as myalgic encephalopathy.

The Work Capability Assessment is not a snapshot of a person’s condition on the day of the assessment. In assessing whether a person can carry out any given activity, health care professionals must take into account the person’s condition over a reasonable period of time. They must take into account the effects of symptoms such as pain and fatigue. In this way the Work Capability  Assessment takes account of the effects of fluctuating conditions.

If there is a change in a person’s disabling condition, there will be a provision to refer the person to an approved healthcare professional so that we can determine afresh whether or not the person has limited capability for work, or limited capability for work-related activity.

——–
(c) 2008 Parliamentary copyright

Source: UK House of Commons
Date: April 29, 2008

URL: http://www.publications.parliament.uk/pa/cm200708/cmhansrd/cm080429/text/80429w0001.htm
Ref: http://www.me-net.combidom.com/meweb/web1.4.htm#westminster

[Written Answers]

Chronic Fatigue Syndrome
————————

Mr. Burstow

To ask the Secretary of State for Health what steps his Department plans to take to ensure that recommendations for research into myalgic encephalomyelitis/chronic fatigue syndrome set out in the National Institute for Health and Clinical Excellence guidelines are met in respect of (a) the causes of the illness, (b) the clinical and cost effectiveness of intervention strategies and (c) identifying efficient ways to deliver domiciliary care for people who are severely affected. [201793]
Dawn Primarolo

Research recommendations made in National Institute for Health and Clinical Excellence (NICE guidelines are considered on behalf of the Department by the National Institute for Health Research Health Technology Assessment programme (HTA). The director of the HTA programme meets annually with NICE for this purpose. The next of these joint meetings will be held in September.

——–
(c) 2008 Parliamentary copyright

Source: UK House of Commons
Date: May 1, 2008

URL: http://www.publications.parliament.uk/pa/cm200708/cmhansrd/cm080501/text/80501w0003.htm
Ref: http://www.me-net.combidom.com/meweb/web1.4.htm#westminster

[Written Answers]

Incapacity Benefits: Chronic Fatigue Syndrome
———————————————

Dr. Gibson

To ask the Secretary of State for Work and Pensions if he will review the process by which assessments are made of whether people with myalgic encephalopathy may receive benefits; what account the process takes of the rate of successful appeals against decisions to deny benefits in such cases; and if he will make a statement. [201837]

Mrs. McGuire

We have already reviewed the process for assessing whether people with medical conditions, including myalgic encephalopathy, may receive incapacity benefits.

The new work capability assessment for employment and support allowance will be a fair, robust and accurate assessment of limited capability for work which takes account of all conditions, including those that are long-term and that fluctuate such as myalgic encephalopathy.

Updated medical guidance on myalgic encephalopathy for disability living allowance decision makers was published in July 2007. There are no current plans for further revision of the process.

The process for employment and support allowance and disability living allowance does not take account of the rate of successful appeals. However, we will continue to monitor new research and evidence, including relevant case law, in this area.

——–
(c) 2008 Parliamentary copyright

 

Summary of MEA board of trustees meeting: 18 April 2008

ME Association

This is a summary of key issues that were discussed at three meetings of the ME Association.The first Board of Trustees meeting was held at the Whiteleaf Business Centre, Buckingham on Friday 18 April from 2pm to 5pm.

The second Board meeting was held at The Littlebury Hotel, Bicester on Saturday 19 April from 10am till 12.30pm.

The AGM and results of trustee elections took place at The Littlebury Hotel on the afternoon of Saturday 19 April.

Trustees also held informal discussions on the Friday evening.

As both Board meetings coincided with the move of our Head Office to new premises just outside Buckingham we were unable to hold these meetings in our normal office space.

And as a significant part of both Board meetings was taken up with administrative matters relating to our move to new premises, and preparations for the Annual General Meeting and Trustee Election, the summary of these two Board meetings is shorter than usual.

In view of the constraints on both time and facilities being imposed by the office move, a decision was made to defer a meeting with a local ME charity, to discuss how we might help with a specific project, to our next meeting.

PRESENT

Trustees:

Ewan Dale
Mark Douglas
Neil Riley (Chairman)
Charles Shepherd
Barbara Stafford

Staff:

Gill Briody (Company Secretary)
Tony Britton (Publicity Manager)

Apologies received from Rick Osman (Vice Chair)

FINANCES, STAFF AND PREMISES

The underlying financial situation continues to remain fairly stable and we are continuing to meet our medium term target of having sufficient funds in the unrestricted reserve account to cover all administrative and salary expenditure for at least a full financial year. But like many small charities our central problem remains the fact that income from membership fees only pays for about half of our total expenditure – which means that a significant part of staff and trustees time still has to be devoted to various fundraising initiatives.

The move to new premises, which are costing slightly less in rental than we were paying for our previous premises, will obviously involve some additional expenditure – ie for removal costs, legal fees etc – during this financial year. Overall, these plus and minus costs should balance out.

Gill Briody reported that the move had gone smoothly so far and that all our property had been safely transported to the new location. It is hoped that staff will be able to resume relatively normal working regarding emails, telephone contacts etc fairly soon. As we are the first tenants to move into a new building there are the inevitable teething problems – so it may take a week or so before we are operating at a completely normal level again. Trustees thanked Gill Briody, staff and volunteers for the way in which everyone had coped with what has been a difficult couple of months and a very busy week.

Our new address is:

The ME Association
7 Apollo Court
Radclive Road
Gawcott
Buckinghamshire MK18 4DF

Phone number and email contact details remain the same.

NB: Postage rates went up in April and we are now receiving a significant volume of post with the incorrect postage – which we have to make up with an expensive Royal Mail surcharge if the letter is going to be delivered. If you are writing to the MEA please make sure that the correct value stamp is being used.

No other significant developments to report.

FUNDRAISING

Walking the Amazon:

Ba Stafford reported on the latest news from this major fundraising initiative. The fundraising ‘send off’ party on the River Thames had raised over £7,000 for the MEA Ramsay Research Fund and Project Peru (roughly £3,500 each). The two explorers have now started their walk, and are making their way to the source of the Amazon. More updated information can be found on page 7 of the April issue of ME Essential magazine and on the Amazon blog of their expedition:

http://www.walkingtheamazon.com

Mobile phone returns:

Mark Douglas reported on a further good financial return from this fundraising initiative. There are now plans in place to introduce a computer ink cartridge recycling facility – more details and envelopes will appear in the July issue of ME Essential magazine.

Ba Stafford also reported on the work of the fundraising sub-group and trustees discussed a number of other new fundraising proposals. Details of this year’s Raffle will appear in the July issue of ME Essential.

MEA FUNDED RESEARCH AND OTHER RESEARCH ISSUES

Professor John Gow’s study into gene expression at Glasgow Caledonian University:

A short progress report from John Gow, along with a request for blood samples from volunteers with a consultant confirmed diagnosis who are willing to take part in this study into the role of abnormal gene expression in ME/CFS, can be found on page 8 of the April issue of ME Essential magazine.

ME Observatory:

Charles Shepherd reported on a meeting of the Steering Group that had taken place in London on 4 April. Verbal and written progress reports from the three academic institutions involved in all six epidemiological studies were reviewed.

PRIME Project:

Charles Shepherd reported that no firm meeting has been fixed for the next Steering Group meeting.

Correspondence with the Sir Leszec Borysiewicz, Chief Executive at the Medical Research Council:

The MEA Association has now received a reply from the MRC Chief Executive in which a meeting to discuss our continuing concerns about the lack of government funded research into the underlying physical cause of ME/CFS can be discussed. A date for this meeting has not yet been arranged. The exchange of correspondence will be placed on the news section of the MEA website: http://www.meassociation.org.uk  shortly. The letter from the Chief Executive also notes that a multidisciplinary MRC research group is being set up by Professor Stephen Holgate (University of Southampton) to look at research into aetiology and subgrouping.

New research proposal

Trustees discussed a new application for research funding. This relates to a small epidemiological study. Trustees agreed to hold further discussions with the research group involved. More information will follow if we decide to fund this proposal.

MEA MULTIDISCIPLINARY MANAGEMENT INITIATIVE AND QUESTIONNAIRE & ME AWARENESS WEEK

Trustees reviewed progress on the preparation of a questionnaire that has been designed to assess what forms of management people with ME/CFS have found to be effective/ineffective; what forms of management they want to have access to; who they want their management to be co-ordinated by, and where in the NHS they want it to take place. The results will then form the basis to our plan to produce an alternative approach to the NICE management guideline and one that would be welcomed by the patient community. The electronic version of the management questionnaire will be launched on the MEA website as part of our Awareness Week initiatives. A paper version will be included in the July issue of ME Essential. More information on ME Awareness Week will appear in the April issue of ME Essential magazine.

MEETINGS AND CONFERENCES

Southampton conference:

Charles Shepherd reported on this very successful biomedical conference that was held on 12 February. A detailed report on the presentations can be found on pages 16 – 17 of April ME Essential. A DVD of the meeting will be available in due course – see the April issue of ME Essential for more details.

Royal Society of Medicine meeting on 28 April:

After an exchange of correspondence with the Royal Society of Medicine it has now been decided that the MEA can have a stand at this meeting, which is being heavily criticised for its bias towards the mental health model of ME/CFS. The MEA will be represented by Neil Riley, Charles Shepherd and Tony Britton, and we intend to use this opportunity to explain to health professionals attending why people with ME are unable to agree with the NICE guideline on ME/CFS, and why they feel so unhappy with the current MRC research agenda. A member of the MEA has very generously agreed to cover all of our costs that will be involved.

Other medical meetings:

The MEA will be represented at the forthcoming MERUK conference in Cambridge. We hope to have a presence at the Invest in ME conference on 23 May.

MEA annual medical meeting:

Trustees discussed a number of options and possible venues for our annual medical meeting, which normally now takes place in September or October. The preferred option at present is to hold a Question and Answer session with a panel of speakers somewhere in the South East of England.

PARLIAMENTARY ACTIVITY

Adjournment debate:

John Bercow has informed the MEA that he is still attempting to obtain a place in the parliamentary ballot but has not been successful so far.

APPG:

We are still waiting to hear whether a meeting with Lord Darzi can be arranged to discuss our concerns over NHS services. A further reminder letter has just been sent from a group of ME charities. No date for the next APPG meeting has yet been fixed.

SCOTTISH ISSUES

Ewan Dale reported on the most recent meeting of the Scottish Cross Party Group and the six month extension relating to plans to publish clinical guidelines on ME/CFS for health professionals. Trustees agreed to the MEA booklet for health professionals – ‘ME/CFS/PVFS – An Exploration of the Key Clinical Issues’ – being used as a key source of information.

ME CONNECT TELEPHONE INFORMATION AND SUPPORT SERVICE

Trustees discussed the final 32 page report to the Department of Health on work relating to the Section 64 funding for this service. Trustees also finalised a new guideline on confidentiality for everyone involved with this service.

MEA LITERATURE, ME ESSENTIAL MAGAZINE AND MEA WEBSITE

Literature:

New MEA literature includes information sheets on CBT, counselling, the Blue Badge Scheme, and Holiday Health (including vaccinations). A new information sheet on Vitamin D deficiency is being prepared. A full list of MEA information literature and books can be found on the pdf ORDER FORM on the website or the insert in the April issue of ME Essential magazine.

ME Essential magazine:

Tony Britton reported that the April issue will be posted out to members next week. Once again, we have managed to produce a 44 page issue. Also included is an A4 sized ME Connect poster which we hope people will ask to be displayed in surgeries, hospitals etc during ME Awareness Week.

Website:

Trustees discussed the issue of website links to commercial companies and agreed to continue with the policy of allowing some paid advertising on the site.

DATE OF NEXT BOARD MEETING

This will be held on Tuesday 24 June 2008.
NB: This is a summary of the two Board meetings – not the actual minutes. It is not in the exact order that these subjects were discussed.

ANNUAL GENERAL MEETING: SATURDAY 19 APRIL AT THE LITTLEBURY HOTEL, BICESTER

Business consisted of:

  • Chairman’s Report
  • Financial Report for the year ending December 2006
  • Re-appointment of Larking Gowan as auditors

Trustee Elections:

Neil Riley 353 votes for; none against
Rick Osman 342 votes for; 7 against; 4 abstentions

Both trustees were re-elected

Neil Riley was unanimously re-appointed as Chair
Rick Osman was unanimously re-appointed as Vice Chair
Ewan Dale was unanimously re-appointed as Treasurer

A full report of the AGM, including the Chairman’s report, will appear in the July issue of ME Essential magazine.

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

Dr Charles Shepherd
Trustee

ENDS

 

Summary of MEA board of trustees meeting: Thursday 24 January 2008

NB: This is a summary of the Board meeting – not the actual minutes.
ME Association News page

This is a brief summary of key issues that were discussed at The ME Association Board of Trustees meeting held in Buckingham on Thursday 24 January 2008.

The summary also covers some matters that were discussed at an informal meeting of three trustees (NR; CS; BS), Gill Briody and Tony Britton the day before and over dinner the night before.

On Thursday trustees joined members of staff and office volunteers for a delayed Christmas lunch.

PRESENT

Trustees:
Ewan Dale
Mark Douglas
Rick Osman (Vice Chairman)
Charles Shepherd
Barbara Stafford

Neil Riley (Chairman) joined the meeting by telephone link up from home.

Staff:
Gill Briody (Company Secretary)
Tony Britton (Publicity Manager)

Apologies received from Vivienne Sutton (Associate Trustee)

FINANCES, STAFF AND PREMISES

Due to the likely termination of our current rental agreement there is a strong possibility that The MEA will have to relocate to new premises in Buckingham in the very near future. The previous day a small group looked at two possible locations and reported back. Trustees agreed that there were two options available at one of the premises that are appropriate to our needs and budget and agreed to pursue them further.

Otherwise, no significant developments to report.

The underlying financial situation continues to remain fairly stable and we are still meeting our medium term target of having sufficient funds in the unrestricted reserve account to cover all administrative and salary expenditure for at least a full financial year. We do, however, have just over 400 members who pay by standing order and no longer pay the current membership fee despite repeated reminders.

A summary of the audited accounts for the year ending December 2006 can be found in the January issue of ME Essential magazine. A full copy of the accounts can be sent to members on request. Trustees agreed that subject to expected changes to the legal status of charitable companies we should move from producing a full audit of the annual accounts to a simpler and slightly cheaper accountant’s report for the year ending December 2008.

Trustees completed work on new guidance relating to trustee expenses.

MEA ANNUAL GENERAL MEETING AND TRUSTEE ELECTIONS

Arrangements for the AGM on Saturday 19 April were formalised. This will take place at 2pm. The venue is once again The Littlebury Hotel, Bicester. Further details can be found in the January issue of ME Essential magazine.

Two current trustees – Neil Riley and Rick Osman – will be standing for re-election at the AGM. A voting paper can be found in the January issue of ME Essential magazine. Voting papers must be returned to Head Office by midday of Friday 11 April at the very latest.

FUNDRAISING

Walking The Amazon:

Barbara Stafford updated trustees on all the various initiatives being planned in association with Walking the Amazon – a two year event that is already raising funds for the MEA and five other national charities. Money raised for the MEA will be ring-fenced for research purposes and will be used to support our aim of setting up a national tissue bank and post mortem facility for ME/CFS. Tickets can still be purchased for the first event – a send off party for Ned and Luke that is going to be held on board HMS President, a large boat moored on the Thames Embankment – on the night of Saturday 2nd February. More details about this event can be found on the MEA website or in the January issue of ME Essential. Tickets for this event can be obtained from Barbara Stafford. The walk itself is due to start at the beginning of April.

Walking The Amazon website: www.walkingtheamazon.com

Mobile phone returns:

Mark Douglas reported that this new fundraising scheme is continuing to do well. Anyone with an unwanted mobile phone can still request a prepaid envelope from Head Office and then return their phone to Greener Solutions in Surrey. There is a free courier service available for 20 phones or more!.

A number of other possible fundraising initiatives for 2008 were discussed and trustees agreed to set up a small sub-group to concentrate on fundraising matters.

MEA FUNDED RESEARCH AND OTHER RESEARCH ISSUES

Professor John Gow’s study into gene expression at Glasgow Caledonian University:

A new research assistant has been appointed and work is running according to plan.

Collaboration with new research proposal:

Having been offered the opportunity to do so by an academic research team, trustees agreed that the MEA should collaborate in a new research proposal involving patient feedback that is being submitted for funding.

ME Observatory:

Charles Shepherd reported on a meeting of the ME Observatory Steering Group held on 11 January at which progress on the six research studies being carried out with funding from the National Lottery was discussed. There is still a need to recruit more people from minority ethnic communities to help with one of the studies. More information can be found in the ME Observatory announcement in the January news archive on the MEA website: http://www.meassociation.org.uk.

PRIME Project:

Charles Shepherd will be attending the next meeting of the Steering Group.

Research meetings

The MEA is adding its support and/or presence to research meetings in Southampton, Cambridge and London over the coming months that are designed to promote and explain the biomedical model of ME/CFS. Further details on these three conferences can be found on the MEA website (>> Events Calendar) and in the January issue of ME Essential. Most of these meetings are open to both health professionals and people with ME/CFS.

PARLIAMENTARY ACTIVITY

Adjournment debate on ME/CFS

The attempt by John Bercow MP to secure a place in the parliamentary ballot for adjournment debates has not yet been successful. John Bercow has informed us that he will continue to enter the ballots.

All Party Parliamentary Group (APPG) meeting on Tuesday 22 January

Charles Shepherd and Tony Britton reported on the APPG meeting held two days earlier.

The APPG received updated reports on a number of current issues of concern: DWP benefit guidance; NHS Plus literature, NHS services etc.

The main part of the meeting was devoted to a presentation from Ann Keen MP, Parliamentary Under Secretary at the Department of Health. Afterwards, Ann Keen answered questions from MPs and members of the public.

A summary on this meeting can be found on the MEA website (>> News). The MEA is also preparing the minutes this time and these will be published later.

Scottish Cross Party Group:

Ewan Dale reported on a meeting of the CPG that was held on Wednesday 23 January. Part of this meeting was devoted to discussion on proposed new guidance on ME/CFS for Scottish doctors that will cover diagnosis and management.

NHS PLUS:

Trustees discussed the outcome of correspondence that had been sent to Dr Ira Madan by Neil Riley on behalf of the various charities and groups that agreed a joint response to the content of the NHS Plus leaflets on occupational health issues. The outcome is that the points raised by the charities have been considered by Dr Madan and she is currently in the process of preparing revised versions of all the three leaflets. Further information on the revision will appear on the MEA website once we hear back again from Dr Madan.

NHS SERVICES

The MEA is keen to monitor the development of new clinical services that are being planned or brought into operation by PCTs as a result of the NICE guideline. We have prepared a pilot questionnaire to go out to those involved in the development process. Our first report back has come from the new service being planned for Portsmouth. A copy of the questionnaire can be found in the January issue of ME Essential.

MEDICAL RESEARCH COUNCIL (MRC)

As no reply has yet been received to the letter that was sent in December to Professor Leszec Borysiewicz – new Chief Executive at the MRC – regarding the absence of MRC funding for biomedical research, a further letter will be sent. A copy of the MEA letter can be found on the MEA website in the December news archive.

NICE GUIDELINE ON ME/CFS

Trustees discussed what form of multidisciplinary management option we might put forward as an alternative to the NICE management recommendations that are largely based around the use of cognitive behaviour therapy (CBT) and graded exercise. As part of this initiative a questionnaire on all aspects of management will be prepared for the April issue of ME Essential.

ME CONNECT TELEPHONE INFORMATION AND SUPPORT SERVICE

All is running smoothly with both the telephone and email service. Volunteers recently had a training session on CBT and a new ME Connect leaflet on Counselling is being produced. A new monitoring procedure for counsellors who advertise in ME Essential was also approved.

MEA LITERATURE, ME ESSENTIAL MAGAZINE AND MEA WEBSITE

New MEA literature now available includes leaflets on CBT and Employment. We have a revised version of ‘ME/CFS – Your Questions Answered’. and a revised Briefing Paper on Current Concerns’ for the benefit of the media and politicians. A new leaflet on Counselling is being prepared by ME Connect.

Trustees discussed the introduction of MEA website links to commercial companies.

DATE OF NEXT BOARD MEETING

This will be held on Friday 18 April 2008. A further short meeting will be held on the morning of Saturday 19 April – before the AGM takes place in the afternoon.

NB: This is a summary of the Board meeting – not the actual minutes.

29 January 2008

 

APPG on ME: Agenda for meeting 22 January 2008

Agenda APPG on ME meeting

Tuesday 22 January 2008
4.00pm-5.30pm
Committee Room 17, House of Commons

AGENDA

1. Welcome by the Chair, Dr Des Turner MP

2. Minutes of the last meeting

  • letter from Paul Davis, RiME
  • letter from Angela Kennedy/Ian McLachlan

3. Main speaker: Ann Keen MP, Parliamentary Under Secretary of State for Health Services

4. Matters arising

  • NHS services
  • NICE guideline
  • Adjournment debate and revised Early Day Motion
  • DWP guideline
  • Occupational Health Guideline
  • NHS Collaborative Conference 

6. Any Other Business

7. Date of Next Meeting

Issued on behalf of Des Turner MP, Constituency office: 179 Preston Road , Brighton BN1 6AG Tel: 01273-330610.

E-mail: turnerd@parliament.uk

Tony Britton
Publicity Manager, The ME Association

Home-based: 60 Broadgate, Weston, Spalding, PE12 6HY
Tel: 01406 370293 Mob: 07880 502927 Email tbritton02@yahoo.com
ME Association

ME Association: Summary of Board of Trustees Meeting: 13 November 2007

ME Association  
Summary of ME Association Board of Trustees meeting held on Tuesday 13th November 2007

This is a brief summary of key issues that were discussed at The ME Association Board of Trustees meeting held in Buckingham on Tuesday 13 November 2007. It also covers a few matters that were discussed at an informal meeting of trustees held over dinner the evening before.

PRESENT

Ewan Dale
Mark Douglas
Neil Riley (Chairman)
Charles Shepherd
Barbara Stafford

Gill Briody (Company Secretary)

Apologies received from:

Rick Osman (Vice Chairman)
Tony Britton (Publicity Manager) Continue reading