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/

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

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

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

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

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

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

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

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

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

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

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

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

One poster on Facebook wrote:

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

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

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

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

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

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

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

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

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

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

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

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

 

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

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

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

 

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

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

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

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

 

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

Radio Berkshire 11 November Anne Diamond

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

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

Or listen on YouTube, here:

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

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

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

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

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

I have the following concerns:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I would welcome your responses.

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

Sincerely, etc

Related material:

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

2] ASA adjudication against “Withinspiration”, June 2010

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

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

MEA statements: Review of NICE guideline CG53 and PACE Trial results

MEA statements: Review of NICE guideline CG53 and PACE Trial results [and BACME (British Association of CFS/ME) 2010 Conference Programme]

Shortlink: http://wp.me/p5foE-35V

The British Association of CFS/ME (BACME) appears to have taken over some of the functions of the CFS/ME Clinical and Research Network and Collaborative (CCRNC). There is no website for BACME and very little information available about the role and operation of this organisation.

BACME is chaired by consultant paediatrician, Dr Esther Crawley (lead researcher, Lightning Process pilot study in children). Assistant Chair is Alison Wearden PhD, CPsychol (lead researcher, FINE Trial).

Related information from the News section of the ME Association website (which includes extracts from BACME’s Constitution for which I do not have access to a full copy):

Questions raised over training role of new body for ME/CFS professionals

‘Parliamentarians should examine role of new NHS training forum for ME/CFS’

1] ME Association statement: NICE Guideline on ME/CFS – 2010 review process (UK)

2] ME Association statement: PACE Trial results in October (UK)

ME Association statement: NICE Guideline on ME/CFS – 2010 review process (UK)

1 September 2010

Having been led to believe that the proposed review of the 2007 NICE guideline on ME/CFS would be starting in August 2010 The ME Association wrote to NICE to seek clarification in the absence of any official announcement being made during August.

We received the following reply on 24 August:

Thank you for contacting the National Institute for Health and Clinical Excellence (NICE).

The review date which you refer to is the date at which we plan to begin the review process. We are currently beginning to gather evidence and opinions to inform our review proposal. If there has been a large amount of new evidence produced since the original guidance was produced, the review proposal may be to conduct a full review, which can take over a year. On the other hand, if there has not been very much new evidence produced, we may propose to delay the review.

The review proposal will be posted on our website for consultation in the months following the ‘review date’ listed in the guidance. To be notified of additions to web pages relating to your area of interest, including review proposals, you may like to sign up for our web alert system. You can do this via the following page of our website:

http://www.nice.org.uk/registration/index.jsp?action=registration

I am sorry that I do not have any more definitive information at this stage.

Regards

Carla Springl

Communications Administrator (Enquiry Handling)
National Institute for Health and Clinical Excellence

Level 1A | City Tower | Piccadilly Plaza | Manchester M1 4BD | United Kingdom

Web: http://nice.org.uk

We also know that members of the original guideline development group have been asked for their opinion as to whether there is sufficient new evidence to justify a review at this time.

The important phrase here is large amount of new evidence produced since the original guidance was produced.

In NICE-speak this means results from randomised controlled trials into any aspect of management that have been published in reputable peer-reviewed medical journals since August 2007. The NICE guideline is primarily concerned with the clinical assessment and management of ME/CFS and does not get involved in coming to conclusions about causation – although NICE obviously has to take note of developments relating to causation, including the findings relating to XMRV and MLVs.

Having managed to fight off a Judicial Review of the ME/CFS guideline, NICE will be feeling confident that its guidance is sound and acceptable to both patients and doctors – a position which many patient support organisations, including the MEA, obviously strongly disagree with. And with very little in the way of new evidence being published in relation to the treatment of ME/CFS, and the fact that results from the PACE trial are fast approaching, it seems likely that NICE may decide to defer this review until later in the year, or even 2011, when they have this information – which could well strengthen their controversial recommendations regarding cognitive behaviour therapy (CBT) and graded exercise therapy (GET).

It should also be noted that NICE will not want to re-open the debate about existing evidence (ie results from clinical trials that were published up to the time of the 2007 guideline) – they want to look at new evidence.

The ME Association will obviously be challenging the current recommendations regarding the use of CBT and GET and to support out case we will be making use of the patient evidence (approx 4,500 respondents) from our 2010 Management Report – the largest ever survey of patient opinion ever carried out in the UK, probably in the world. This report can be accessed on-line here:

http://www.meassociation.org.uk/index.php?option=com_content&view=article&id=1283&Itemid=223

We are also consulting with various experts, including those with statistical knowledge, about how best to present our case to the review.

For information purposes the following explanation of how recommendations contained in a NICE guideline should be interpreted by clinicians when making decisions about patient management is worth noting. It clearly contradicts the mistaken view of some doctors that NICE guidelines are almost mandatory and as a result they are no longer able to exercise their clinical judgement where this is may not be entirely consistent with a guideline position.

NICE clinical guidelines are recommendations about the treatment and care of people with specific diseases and conditions in the NHS in England and Wales. Clinical guidelines represent the view of NICE, and are arrived at after careful consideration of the evidence available. Healthcare professionals are expected to take it fully into account when exercising their clinical judgement. However, the guidance does not override the individual responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or guardian or carer, and informed by the summary of product characteristics of any drugs they are considering.

Implementation of this guidance is the responsibility of local commissioners and/or providers. Commissioners and providers are reminded that it is their responsibility to implement the guidance, in their local context, in light of their duties to avoid unlawful discrimination and to have regard to promoting equality of opportunity. Nothing in this guidance should be interpreted in a way that would be inconsistent with compliance with those duties.

With regards to technology appraisal guidance, this type of guidance contains recommendations on the use of new and existing medicines and treatments within the NHS. The NHS is legally obliged to fund and resource medicines and treatments recommended by NICE’s technology appraisals, usually within 3 months of guidance being published.

ME Association
1 September 2010

http://www.meassociation.org.uk

ENDS

Ed: This BACME conference and AGM is being held in Milton Keynes on 13 and 14 October and is faciliated by AYME who have collaborated in CCRNC conferences.

Download PDFs for BACME Provisional Programme and Registration Form here:

BACME 2010 Conference Programme

BACME CFS ME CCRNC conference 2010 Registration Form

 

2] ME Association statement: PACE Trial results in October (UK)

3 September 2010

It is being reported today in Link magazine (issue 39, September 2010) that:

Data collected for the one year follow up of the PACE trial is currently being analysed in preparation for publication of the findings.

Professor Peter White of St Bartholomew’s Hospital, London will report on the most up-to-date progress and baseline data from the PACE trial to delegates at the British Association of CFS/ME (BACME) October conference.

The release of this PACE trial information may well have an effect on a decision by NICE as to when they commence a review of the 2007 Guideline on ME/CFS.

A statement and more information on the NICE Guideline review can be found in the September news section on the MEA website.

Information supplied by ME Association: http://www.meassociation.org.uk

ENDS

BACME CFS ME CCRNC conference 2010 Registration Form

BACME 2010 Conference Programme

Provisional Programme

British Association of CFS/ME (BACME)
2010 Conference

Draft Program – please note there may be changes before final program

Milton Keynes 13-14 October
Wednesday 13 October

9.30 -10.30  Registration and coffee

10.30-11.00  Opening Address:

Prof Stephen Holgate  MRC (Medical Research Council)  Clinical Professor of Immunopharmacology. 

“The time has at last arrived to strengthen research into CFS and ME”

11.00 – 12.00  Keynote Speaker: Professor Daniel J. Clauw MD Division of Rheumatology University Michigan

“Advances in Our Understanding of CFS and Overlapping Conditions”

12.00 – 1.30  Lunch Hot and Cold Buffett (preference to be booked)

1.30 -2.15  Dr Alison Wearden Reader in Psychology: FINE Trial

“Pragmatic rehabilitation for Chronic Fatigue Syndrome/ME”

2.15 – 3.00  Judith Harding:
The Role of Diet Management in CFS/ME

3.00 – 3.30  Comfort Break

3.30 – 5.00  Uni – professional Networking Groups.
To be facilitated please contact maryjane@ayme.org.uk asp if you would like to request a specific group e.g physiotherapists, nurses, paediatricians

5.00 – 6.00  BACME AGM Chairperson: Gill Walsh
(for existing and new members)

7.30  Conference Dinner (to be pre-booked separately)

Thursday 14 October

9.00 Registration & Coffee

9.30 – 10.45  Workshop 1

10.45 – 11.15  Coffee & Comfort Break

11.15 – 12.30  Workshop 2

12.30 – 1.45
Lunch Hot and Cold Buffett (preference to be booked)

1.45 – 2.15  Poster Presentations – Organiser Gabrielle Murphy
Posters will be on display for the whole 2 days

2.15 – 2.45  Coffee & Comfort Break

2.45 – 3.30  Diane Cox & Heather Garry
Video Conferencing for delivery of CFS/ME Interventions at Home (Tele-rehabilitation)

3.30 – 4.30  Professor Peter White
St Bartholomew’s Hospital London

“PACE trial: so near yet so far”

(If outcome results are not yet published, Peter White will present the design, progress and baseline data from the trial)

4.30 – 5pm  Closing Address – To be announced

WORKSHOPS

1. Working with the Severely Affected – Leeds Service

2. Mindfullness and ME –The Mindfull Approach to Chronic Illnesses Steve Johnson, Director of the Breathworks Foundation

3. Review of Literature and Clinical Implications on Sleep (please note this is not a workshop) Gabrielle Murphy & Alex Westcombe

4. To Be Announced

5. Research workshop – How to do research successfully when you are a busy clinician – Professor Peter White

6. Group work – Michelle Selby and Helen Chub

 

Additional information on selected presenters:

Breathworks
http://breathworks-mindfulness.org.uk/the-breathworks-foundation.html

Gabrielle Murphy
Physician working in the Fatigue Service at the Royal Free Hospital and Clinical Lead. She also works in the Department of HIV medicine. Her interests include medically unexplained symptoms MUS). Also involved in local and national organisations promoting access to CFS/ME services and ongoing research.

Coping Better With Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: Cognitive Behaviour Therapy for CFS/ME
http://www.karnacbooks.com/Author.asp?AID=13770

Alex Westcombe
North Bristol NHS Clinical Psychologist
http://www.nbt.nhs.uk/services/criticalcare/painmanagement/who_is_who.htm

Michelle Selby
OT lead Dorset CFS Service (formerly “The Wareham Clinic”); Clinical Co-ordinator, Southampton CFS/ME Clinic
http://www.meactionuk.org.uk/RiME_CFSME_Centres_Condemned.html

Dr Helen Chubb
Senior Registrar, Whitchurch Hospital
Chronic Fatigue Syndrome – personality and attributional style of patients in comparison to healthy controls and depressed individuals: Helen. L. Chubb; Irene Jones; Janice Hillier; Christopher Moyle; Stephanie Sadler; Tanya Cole; Kate Redman; Anne Farmer
DOI: 10.1080/09638239917274 Journal of Mental Health, Volume 8, Issue 4 August 1999 , pages 351 – 359
http://www.informaworld.com/index/T32L42TTQ9N74DN3.pdf

ME Association Summary and Statement on Lo et al paper

ME ASSOCIATION SUMMARY AND STATEMENT ON LO et al PAPER:

Detection of MLV-related virus gene sequences in blood of patients with chronic fatigue syndrome and healthy blood donors

Shortlink: http://wp.me/p5foE-33G

Issued 25 August 2010

ME ASSOCIATION SUMMARY AND STATEMENT ON LO et al PAPER:

Detection of MLV-related virus gene sequences in blood of patients with chronic fatigue syndrome and healthy blood donors

Authors: Shyh-Ching Lo (US Food and Drug Administration) et al.

Published in the Proceedings of the National Academy of Sciences (PNAS) on August 23rd 2010.

Pdf available on-line: http://www.pnas.org/content/early/2010/08/16/1006901107.full.pdf+html

Accompanying commentary by Valerie Courgnaud et al: http://www.pnas.org/content/early/2010/08/16/1007944107.full.pdf+html

BACKGROUND:

Murine leukaemia viruses (MLV) are retroviruses known to cause cancer in certain mice. In 2006, investigators found that a type of MLV, called xenotropic murine leukaemia virus-related virus (XMRV), could potentially infect humans after finding it in tissue samples from men with prostate cancer. XMRV is one of a number of MLVs that appear to be transmitted to humans.

In October 2009, Lombardi et al published the results of study in Science which contained evidence that XMRV was present in a high percentage (67%) of people with ME/CFS and in a small percentage of healthy controls.

Since then there has been a great deal of interest from researchers in a number of countries where ME/CFS is recognised. A number of research groups have attempted (or are still attempting) to repeat these positive XMRV findings.

Confirming or refuting new findings is a vital part of the scientific evaluation process and involves other independent research groups trying to either replicate or validate the results.

In relation to XMRV, a true replication study should involve exactly the same laboratory methods and same type of patients that were used in the original Science study. A validation study gives scientists a degree of flexibility. In particular, it provides the opportunity for other research groups to try and repeat the findings using what they feel are the most sensitive and accurate laboratory methods they have access to for testing for XMRV.

In the case of XMRV almost all of the first wave of research has involved validation studies. Firstly, because there is no international agreement about the most accurate and sensitive way of detecting XMRV in blood samples. Secondly, because these research groups all wanted to move quickly, and the easiest way to do so was to use stored blood samples from people who had been diagnosed with CFS in the past according to Fukuda research criteria. Stored blood samples from people who met both Fukuda and Canadian criteria (which were used in the original study) are not readily available.

Results from four emphatically negative validation studies of varying quality – three carried out in Europe and one carried out by the CDC in America – have now been published in scientific journals. Results from a further (so far unpublished) study, carried out by Professor Brigette Huber, were presented at the Invest in ME conference in May 2010 (report available on MEA website and in the August 2010 of ME Essential).

None of these five research groups – which in the case of the UK included Professor John Gow, Dr Kate Bishop, Dr Jonathan Kerr and Dr Jonathan Stoye and used patient samples supplied by physicians and neurologists including Dr Abhijit Chaudhuri and Professor Peter Behan – have been able to find evidence of XMRV in blood samples from ME/CFS patients, or in the healthy controls.

Although some very valid criticisms have been made about all of the XMRV negative studies, in particular the most recently reported one from America, a number of distinguished virologists who work with retroviruses and XMRV have been involved – so these XMRV negative results have to be taken seriously as well.

THE LO et al STUDY

On 23 August 2010 the results from the first follow up study to firmly support a link between a retroviral infection and ME/CFS were published.

This study is clearly an important contribution to the XMRV debate in that it fully supports a link between ME/CFS and retroviral infection. In this respect it also supports the findings in the Lombardi paper.

However, it is not a true replication study, and in the words of the authors they have not attempted to fully replicate the Lombardi et al findings.

Lo et al have used different laboratory methods and different patient criteria and their findings relate to what are called MLV-related viruses.

The research group have found segments of genetic material (not whole virus) from what they term a genetically diverse group of MLV-related viruses. These sequences are more closely related to those of polytropic mouse endogenous (=arising within or derived from the body) retroviruses than to those of XMRVs – hence the use of the term MLV (murine = mouse leukaemia virus) in the title. But they all belong to a closely related family of retroviruses.

PATIENT SELECTION

In contrast to the Lombardi et al study, which involved patients who met both Fukuda research criteria and Canadian Clinical Criteria for CFS, this research used stored blood samples from ME/CFS patients who had been diagnosed using either the 1988 Holmes research criteria or the 1994 Fukuda research criteria. The patients were diagnosed with CFS from the mid 1990s onwards and most of the frozen blood samples were supplied by Professor Tony Komaroff at Harvard Medical School, Boston. Professor Tony Komaroff is a well respected physician with a longstanding interest in ME/CFS. In addition, 12 patient samples came from other US physicians whose diagnostic criteria for ME/CFS is not stated.

The numbers involved were surprisingly small for a study of this nature: 37 patients with CFS and 44 healthy controls.

The healthy control samples came from Washington DC blood donors recruited between 2003 and 2006.

So these results apply to a rather broader group of ME/CFS patients than was used in the Lombardi et al study and the patient sample is probably very similar to at least one of the other validation studies that produced negative findings in relation to XMRV. As with some of the other validation studies, it is highly likely that a significant number of people who also meet Canadian Clinical Criteria will have been included in this study.

RESULTS

MLV-like virus gag gene sequences (in simple terms segments of viral genetic material) were found in 32 out of 37 (86.5%) of the ME/CFS patients compared to only 3 out of 44 (6.8%) of the (blood donor) healthy controls.

Follow-up samples were collected from 8 of the CFS patients in 2010, and 7 of these again tested positive for MLV-like gene sequences.

As already pointed out, the evidence in this paper relates to a genetically diverse group of MLV- related viruses with gene sequences that are more closely related to those of polytropic mouse endogenous retroviruses (mERVs) than to those of XMRV. XMRV is a genetic variant of MLV-like viruses – so this is a subtle but relevant distinction.

The authors point out that they have taken exhaustive steps to try and ensure that they have not produced false positive results as a result of mouse DNA contamination, or any of the other potential laboratory problems that come when working with retroviral infections.

CORRELATION, INFECTION AND POSSIBLE CAUSATION

The authors point out (p5) that the finding of XMRV or MLV genetic sequences in people with ME/CFS, or any other disease, does not constitute definite proof of viral infection.

They then go on to make it clear that further research will be required before any definite conclusion can be drawn as to whether MLV-related viruses play a role in the causation of ME/CFS. This is a process that is going to take time and further research.

They also state (p6), as has been pointed out in previous MEA summaries on XMRV, that a high frequency of MLV-related viruses (or XMRV) in ME/CFS patients could reflect an increased susceptibility to viral infections due to the underlying immune dysfunction found in ME/CFS rather than a primary disease causing role in the pathogenesis of ME/CFS. In other words the retrovirus could just be there as a ‘harmless passenger’.

COMMERCIAL TESTING FOR MCVs and XMRV

The MEA continues to believe that there is no point in spending very large sums of money on arranging blood tests, which may not have been properly validated, for XMRV (or MCVs) outside the UK. Having a positive result is not, in our present state of knowledge, a diagnostic marker for ME/CFS. Equally, having a negative result does not mean that you do not have ME/CFS. Having a positive result will not affect ME/CFS management at present and if this information is inserted into medical records it could in due course cause problems with other health matters such as applications for insurance policies or travel abroad.

The way in which these viruses might be transmitted from person to person also remains uncertain and sexual transmission is one possibility – as in the case of HIV. However, if this is a disease causing virus like HIV, sexual transmission appears very unlikely given the fact that ME/CFS appears to be very rare in sexual partners of people with ME/CFS, even after long periods of time.

BLOOD DONATION

The MEA continues to believe that the current uncertainty over transmission of these viruses/viral segments means that people with a current or past history of ME/CFS should not be donating blood and we have recently written to the acting Chief Medical Officer at the Department of Health to seek clarification on what appears to be a recent decision to extend the UK ban to people who have recovered from ME/CFS. Copy of this correspondence [here]

We find it surprising that the American authorities responsible for blood safety have not followed the UK lead here.

ANTIVIRAL TREATMENT

The authors of this paper make no comment or recommendations regarding the use of antiviral drugs. However, others (including the authors of the accompanying commentary) are now suggesting that it is time to assess the use of antiretroviral therapy (ART) in ME/CFS in some clinical trials. It is well accepted that one way of examining the possible cause of a disease is to assess the response to specific forms of treatment.

The MEA has already pointed out on several occasions that this type of clinical trial would have to proceed with great care given the fact that ARTs can have serious side-effects. In the case of AZT, this drug can cause mitochondrial damage – which is obviously very relevant in ME/CFS. But there are other ARTs becoming available that appear to be active against XMRV and may be much safer to use (eg reverse-transcriptase inhibitors such as tenofovir and emtracitabine).

We have also pointed out that ARTs appear to have very limited effect in reducing fatigue in HIV/AIDS, and that this may be due to the immune system activation that is occurring in this situation rather than any direct effect on reducing the viral load of the HIV infection. So drugs that dampen down immune activity (eg a tumour necrosis factor inhibitor such as etanercept) may be a more appropriate route to follow. More information [here]

In the UK doctors are very unlikely to be willing to prescribe any type of antiviral treatment on an individual (ie non research) basis. This is because the 2007 NICE guideline on ME/CFS specifically recommends that antiviral drugs should not be used to treat ME/CFS. And if anything goes wrong through the use of a potentially toxic antiviral drug, that is in effect banned by NICE, and has not been assessed in a proper clinical trial, the doctor responsible could face legal action even though the patient accepted the risk.

FURTHER RESEARCH AND THE ROLE OF MEA RAMSAY RESEARCH FUND

Investigators at FDA, NIH, CDC and other scientific institutions are in the process of conducting studies to verify the capabilities of the tests used by the different laboratories for the detection of XMRV or MLV-related viruses in blood. These studies are intended to develop and standardise a highly sensitive and specific XMRV test to better study its association with disease, as well as the possibility that XMRV can be transmitted to blood or tissue recipients.

The UK Medical Research Council’s Expert Group on ME/CFS research (of which CS is a member) has identified all aspects of viral infection in ME/CFS (including carefully targeted use of antiviral agents) as a priority item for further UK research and we expect that this recommendation will now be translated into action.

The MEA is again making it clear to UK research groups with expertise in retrovirology, and access to reliable patient samples, that we would very much welcome good quality research applications relating to any aspect of XMRV or MLVs. The MEA is also willing to consider co-funding research applications in this area.

We are in contact with most of the key UK researchers working on XMRV and we are also assisting with a small UK study that is intending to retest people who already have a positive XMRV result as a result of having this test done in America.

We also need to find out how common these new retroviruses are in people with other chronic disabling conditions, especially those that involve immune system dysfunction.

MEDIA REACTION

In America, the paper has been quite widely reported with most of the coverage being supportive. In the UK there has been very little interest in the press release – apart from the Daily Mail (which carried an on-line story) and the New Scientist:

http://www.newscientist.com/article/dn19361-virus-link-with-chronic-fatigue-syndrome-resurfaces.html  

which includes quotes from Professor Myra McClure, one of the UK virologists involved in a negative validation study.

Lack of coverage in the UK is partly because selected health journalists, who might have reported the story, like to have access to a new research paper well before the information enters the public domain – so they have a day or two to chase around and obtain informed comment on the story. Health reporters have finished writing their copy for the next days paper well before 8pm in the evening – so unless there is a real breakthrough news item they are not at their desks in the evening. The US press conference at 8pm UK time did not fit in with their working arrangements for printing something on Tuesday and the findings would be ‘old news’ by Wednesday. In addition, they also had a good headline health scare story for Tuesday morning relating to people being refused an anti-cancer drug due to a NICE ruling.

Unfortunately, there are health correspondents that I speak to on the more influential papers and journals who are now very cautious about covering ME/CFS stories.

OVERALL CONCLUSIONS

In very simple terms the clinical and scientific community regards published papers rather like goals (of varying quality) in a football match. So the current score is XMRV and MLV positive 2 (with a spectacular first goal!): XMRV negative 4 (of varying quality) with plenty of time left before the final score.

The comments so far that I have read, or been given, by experts in this area of virology indicate that everything has been done correctly in this study and that this is a sound piece of laboratory research. However, with differing results from differing well respected retroviral laboratories, the clinical and scientific community is likely remain uncertain or sceptical about the link between retroviral infection and ME/CFS.

Another analogy is fitting pieces into a jigsaw puzzle with a lot of blue sky. We now have six pieces (ie published papers of varying quality) in place and some strong opinions on either side. But a lot of pieces have still to be fitted into the picture.

Overall, there is no sign of any real scientific consensus emerging as to whether XMRV and/or MLVs are playing a significant role in ME/CFS and many key questions regarding prevalence, transmission and pathogenesis remain unanswered. Things may become a bit clearer as a result on the international meeting on XMRV in September, which will include a session on ME/CFS. Proposals for further research may also emerge after this meeting.

This uncertainty and scientific disagreement seems likely to continue until well into 2011 and the current findings are unlikely to have any significant influence on the forthcoming review of the NICE guideline or the increasingly difficult position faced by people with ME/CFS in relation to sickness and disability benefits. [Our most recent correspondence on 24 August from NICE indicates that they have still to decide on the date at which the review will take place, whether it will be a full review – which could take up to a year, or whether they might delay the review to await the results of further research from clinical trials.

More top quality research is clearly needed here in the UK and the MEA is very willing to consider funding it.

ADDITIONAL INFORMATION FROM US FDA:

FDA Question and Answer on the paper: http://www.fda.gov/BiologicsBloodVaccines/SafetyAvailability/ucm223232.htm

Answers to the final three questions, which are of importance to US readers:

9. Does FDA agree with the AABB recommendation to discourage donation by people with history of CFS?

FDA does not object to the AABB recommendation. The AABB recommendation is consistent with a long-standing position of the Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) Association of America that individuals with CFS voluntarily should not donate blood.

10. How are the differences between the CDC and FDA study results being evaluated?

Differences in the results could reflect differences in the patient populations that provided the samples. Alternatively, undefined differences in the method of sample preparation could be contributing to the discordant test results. All of the scientists involved are working collaboratively to design experiments to quickly answer this scientifically puzzling question. An independent investigator at the National Heart, Lung, and Blood Institute (NHLBI) set up a test set of 36 samples, including known positives and presumed negatives. Both the FDA/NIH and CDC labs participated in this test, and the results showed that both labs were able to detect XMRV present at low levels in blinded samples. Additionally, the CDC laboratory provided 82 samples from their published negative study to FDA, who tested the samples blindly. Initial analysis shows that the FDA test results are generally consistent with CDC, with no XMRV-positive results in the CFS samples CDC provided (34 samples were tested, 31 were negative, 3 were indeterminate).

11. What do these findings mean to CFS patients and clinicians who treat them?

Although this study found MLV-like viral gene sequences in a high percentage of CFS patients, this does not prove that these retroviruses are the cause of CFS or of any other disease. Moreover, other studies have not found evidence of such retroviruses in patients with CFS. Further studies are necessary to determine if XMRV or other MLV-like viruses are reproducibly associated with CFS, and if so whether the virus is a causative agent or a harmless co-traveler. The different findings from various studies reinforce the need for more research–including careful analysis of other cohorts of CFS patients from different geographic regions, studies of larger populations of healthy people, and testing of transmissibility of the agents through blood transfusions in animal models. FDA, NIH, and CDC have and will continue to collaborate with other agencies and groups involved in this research.

Summary prepared by Dr Charles Shepherd
Hon Medical Adviser, MEA

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

NB: There will be a delay in placing this item on the MEA website because our webmaster is away on holiday for the next few days.

25 August 2010

ENDS

Dr Esther Crawley discusses XMRV and WPI, March 2010

Dr Esther Crawley discusses XMRV and Whittemore Peterson Institute (WPI), March 2010

Part transcript: Presentation to the Dorset CFS/ME Society Annual Medical Lecture: section on XMRV.

Shortlink: http://wp.me/p5foE-31g

XMRV: Whittemore Peterson Institute (WPI)  Opens on campus of University of Nevada (Parts 1 and 2)

Sam Shad for Nevada Newsmakers

Part 1

Part 2

 

Update: This transcript was revised on 20 August and supersedes previous versions.

May be reposted if posted in full, unedited and a link to source is given.

Dorset CFS/ME Society
Annual Medical Lecture

27th March 2010

The Future of Research in CFS/ME

Esther Crawley

Intro:

It’s a great pleasure to be here, everybody, and I’m really glad actually that my talk actually fits in very nicely with what William’s just said – Phew!

I’m going to be talking a lot about the collaborative research and the first half of my talk actually was given to the MRC Working Group at the end of last year. So you’ll actually see what we were talking about where the MRC gathered lots and lots of researchers together to discuss a way forward with chronic fatigue [sic] and I did the talk on Epidemiology.

[...]

[Slide]

I couldn’t resist talking about XMRV. I think we have to know about what’s actually happened and I will discuss that as well and what the implications are.

[...]

[Rest of intro and presentation skipped.]

Approx 27 mins in from start of presentation:

[Slide]

XMRV. OK, so in the next, last, remaining bit of the talk I want to summarise what’s happened about the XMRV story for you. I think it’s really important that we’re all informed about it.

Many of you will have woken up and read this story, in fact I knew about it 24 hours before it was about to break – “Has science found the cause of chronic fatigue syndrome?” – we’re all very excited and hopeful this might give us something we can treat. Great.

[Slide]

Don’t you think this is the most beautiful picture? That’s the XMRV virus. I don’t know how they get those colours on them – very beautiful.

Now this is the Centre that reported it. Do any of you notice anything about that picture? XXXX you’re not allowed to say.

Sorry?

Member of the audience: Sunshiny?

EC: Sunshiny, yeah. It’s in Reno, yeah, yeah. Anything else? It’s a bit far away.

Has anyone looked at the website? Isn’t that interesting? That doesn’t exist. That’s a fake picture – it’s what they would like to exist, when you donate money, when you go on the website. I thought everybody knew that! Yeah, sorry? This is Dorset.

OK. The Centre isn’t built. That’s their picture of what they would like to build and when you go on the website it has “Please donate.”

OK. What do the Lombardi group originally show?

[Slide]

OK. This is a complicated slide. I’m just going to take you through bit by bit because it’s really important when we look at all the research evidence.

OK. The gag sequences – the DNA that’s associated with these particular type of viruses – so they use PCR. PCR is basically when you get a tiny bit of DNA and you multiply and multiply and multiply and then you run it on a gel and see if it’s there. And what they found, and you’ll all remember these figures, I’m sure, is that they found it in 68 out of 100 [Ed: 101 on slide] chronic fatigue [sic] patients and 8 out of 218 controls.

They then looked in the cells and they found the protein in the cells and then they looked at whether it’s infectious. Now I have to say, this bit made me slightly worried – so they looked to see whether this virus could infect other cells within the lab and they showed that it’s infectious and they also looked at what happened if you put the virus with other cells in terms of did it develop an immune response?

[Slide]

And these are some of the pictures they showed. So when you multiply out the DNA, you then run it on a gel and you tag it with a thing that shines – I did my PhD doing this, I can tell you all sorts of awful stories of gels breaking and all sorts of other things going wrong. But these are the chronic fatigue [sic] patients – you see all these lines, here? That’s that gag sequence - here and here – that’s the end of the line and these are the controls.

Then they looked at the expression in cells and you could see it. And then they looked at the infection and this is the infection happening here.

Now this paper went out for review by virologists – not by clinicians and that’s a very important point and it was passed and it was published.

[Slide]

And this is what they said on their website and I think this is kind of interesting: “

“We have detected the retroviral infection XMRV is greater than 95%…”

Where did the 95% come from? Did anybody notice the 95%? Can anybody remember the percentage they found it in? Yeah, 66% [sic], slightly less.

OK. Says on the website “…95%…The current [working] hypothesis is that [XMRV]…” infects these cells…and I found this absolutely terrifying…viral chronic fatigue syndrome “causes the chronic inflammation and immune deficiency resulting in an inability to mount an effective immune response to opportunistic infections”.

OK. Have they shown any of that? Have they shown increased risk of opportunist infections? Have they shown a defect in the immune system that’s actually going to affect someone rather than just in a cell lab plate?

[Slide]

No. But that’s what’s on their website. That’s what they say they’ve found. So what happens? The research community runs to replicate the work.

[Slide]

OK. And you’ll all remember when this first paper came out “Failure to replicate…” – this is an English paper [Ed: the McClure PLoS ONE paper]. Well obviously this is wrong because they didn’t use the same techniques and it wasn’t the same patient group.

[Slide]

So in this particular experiment, they actually characterised the patients.

Now on the original paper, they say that the chronic fatigue [sic] patients were well-characterised but they do not describe them at all. We don’t know how many were girls – we don’t know how many…girls! – I’m such a paediatrician – we don’t know how many were female. We don’t know how long they had had the illness for. We don’t know who diagnosed them and we don’t know whether they had any blood tests to exclude other illnesses.

In this one, [Ed: the McClure paper], they actually had all the exclusion stuff excluded, they then used the DNA sequence. They had positive and negative controls. Why do you need positive and negative controls? Yes, so you’re worried that maybe when you do PCR it’ll pick up…you’ve all seen crime scenes, right? So PCR will pick up one bit of DNA, so if you’ve got a bit of DNA in your solution or something like that, you must have negative controls because you need to be certain that the DNA has come from the samples - not from your lab solutions.

Yes. OK. And you must have positive controls to make sure your experiments work.

They used a virus free laboratory. So they did it in a laboratory that had not had the virus in the past and they blinded the person doing the PCR. Does everyone know about “blinding”? So what they did, was that the person that was reading the gels didn’t know whether they were patients or not, because it’s really easy on those gels to over-interpret what you see.

OK and their results, you might all remember, they didn’t find any out of 186 patients – none of them had chronic fatigue [Ed: corrects herself] – XMRV.

[Slide]

And then a few days later, this one came out. This one had several people from England – Jonathan Kerr and so on. And they’re very open – they said, John Gow – these are all people that we’re collaborating with – they said we wanted to find chronic fatigue syndrome – we wanted to find the XMRV virus. We wanted to – we looked hard.

Now the criticism of the previous paper was that they hadn’t used the same techniques, so in this one they used the same techniques. They had 170 patients, 395 controls. You can already see the sample size is much bigger and they did both PCR and looked at the serology.

They found none in 299 samples of patients – had chronic fatigue [Ed: corrects herself] – had XMRV. And although they found what’s called “neutralising activity” they looked at this further and suggested that the immune response was actually related to other viruses and not to the XMRV.

[Slide]

And then this was published a couple of weeks later [Ed: BMJ paper] – from the Dutch group. Again, a very well described Dutch cohort – smaller, 76 patients 69 controls. And what they did, they actually went completely overboard with trying to find it. They used very, very sensitive techniques that should have detected – if any was there at all, they should have detected it – much more sensitive than the original paper and they looked at a variety of DNA and they tried several times to improve the sensitivity – all samples were negative for XMRV.

So what do you think’s going on?

Member of the audience: Publicity.

EC: Publicity…

….I have actually given a clue.

Member of the audience: Money?

EC: Sorry. Money…money…money…

Member of the audience: XXXX wants to tell us.

EC: OK, go on, XXXX…

EC’s young son (in front row): Did they all do it from one place?

[Slide]

EC: Ye…es! The first group – actually, the question is, was the first group chronic fatigue syndrome? And eventually, when they were asked, they told the research community that, this is in Lisbon, at the end of last year, that all the samples came from an outbreak of chronic fatigue syndrome in one village in Lake Tahoe.

And when you actually go and have a look at all the research data around that outbreak, everybody at that time thought it was a viral infection. And nobody could find the virus.

So most of us think that that was probably the issue – it was probably a viral outbreak that has certainly caused chronic fatigue syndrome but is not necessarily going to be relevant for us here in the UK.

[Slide]

It’s not clear about the PCR operator, the person that looks – it’s not clear from the paper, whether they were blinded. There might be issues about whether you work in a virus free lab, remember they showed that this was infectious.

And there’s a big question here [Ed: indicates on slide] – this XMRV virus was initially described with prostate cancer and the prostate research community has shown this in prostate cancer in two studies in the USA. These are different labs in different studies but no association in Europe.

So maybe this is a virus that’s important in America but not important in this country – it’s not clear.

And I think this is of interest. Within a week of their paper being published they produced a test for the XMRV virus at $650 a test. [Ed: Slide reads, at point 4: Conflict of interest?].

And if I was developing a test, I would declare that as a conflict of interest on the paper – “I’m developing a test for this.” Then people can make up their mind about whether it has affected the results. We don’t know, it wasn’t declared they’d produced a test.

[Slide]

Why are patients so upset?

OK, well I don’t know and you’ll probably be able to tell me more than I can tell. But I think when they first publicised this they went on everything, lots and lots of American television.

[Slide]

[Reads from slide]

“Vindication” they said, “This “[new] report has intrigued scientists, been seen as vindication by some parents [Ed: corrects herself] – patients and inspired hope for treatment.”

Well you know, the history of this condition is that patients have not been listened to, they’ve been dismissed, they’ve had a terrible time and if a virus comes along as a cause, that is going to be seen as a vindication – I can understand that.

And it’s very disappointing, isn’t it, the negative replications?

[Slide]

But I do think that there’s been other stuff that’s been going on that I have particular difficulties with. When I prepared this talk for an infectious diseases conference, I went through and I just got some quotes off the web from the research team.

[Slide]

Look at this:

[Reads from slide]

“Here you’ve got your immune system working well and the virus and the immune system are coexisting just fine and then some other bug, whether it be Lyme, a flu, anything gets you…and then you’ve just tipped the scale to where your immune system can’t handle [XMRV] or anything, and every day you’re seeing new infections.”

[Slide]

And then at one point, rumour has it (and I couldn’t find any evidence for this) that they started to suggest that patients with chronic fatigue syndrome should have anti-retrovirals, ie HIV drugs.

They’ve taken that back, and this is all I could find:

[Slide]

[Reads from slide quoting Dr Judy Mikovits; the "she says" refers to Dr Mikovits]:

“While it’s not advisable to take highly toxic anti-retrovirals [without tests confirming effectiveness], she says some available therapies may help, including: immune modulators; anti-inflammatories, because inflammation activates XMRV, things that improve natural killer cell function; medications that help [level progesterone levels, because progesterone up-regulates XMRV in lab tests]; avoiding stress.”

It appears – and this really upset me, OK. All of their studies are in adults. OK, all in adults. And then they say:

[Reads from slide]

“Early infection in children can lead to more severe disease later on.”

Early detection?

Oh, that’ll be that test that they produced for $605 [sic] a pop.

[Reads from slide]

“and intervention important to keep viral loads from getting high.”

I find that really frightening. If I had a child with chronic fatigue syndrome and I read that on the web, the first thing I’d do, I’d go and buy the test, and the second thing I’d be doing would be phoning an infectious disease doctor which is what’s happened and ask about anti-retrovirals for my child, having read that.

So I do feel as researchers, we do take some responsibility for saying “This is a first paper! Let’s wait and see what happens.”

You know, I think it’s really interesting, it look likes they did find something in a group of patients and we haven’t found it here. That’s really interesting and is deserving of more research. But let’s just say, it’s interesting at the moment, rather than all of this speculation, which I think can be very harmful for patients.

[Slide]

The future for infection

OK, I gather that this may well already have happened, not been published, the way forward in these things is to replicate the studies in both labs and try and look at why there are differences.

I think it may be important for a subtype of chronic fatigue syndrome.

I very much doubt it effects all of them, as they claim.

It doesn’t appear to be important in this country.

And there’s actually very beautiful research which we need to understand more, looking at the relationship between genetics, infection and other things like mood.

OK. After a whistle-stop tour of most research on chronic fatigue syndrome, this is now my summary slide – this is what I’ve talked about.

[Slide]

There are two arms for research in chronic fatigue syndrome and I don’t believe that one replaces the other. The funding for both arms is different in this country and they both need to be done together and both influence the other.

[Slide]

The first is important for providing services and treatment:

We need to know more about how common this is.

We need to understand who it affects.

And we need to know about the different types of chronic fatigue syndrome.

We need to understand how the different types influence treatment.

We need to know much, much more about the impact of this devastating condition on patients and carers.

The second one is that we need to know more about the aetiology, about the causes of this condition and in my view, the fastest way forward is to use the large, very large sample sizes that we have available in this country to conduct rigorous genome-wide association studies and I’m not so certain about the role of infection but I do think there is an interesting story with XMRV that we need to get to the bottom of.

And it just remains for me to thank my funders – I’m funded by the National Institute of Health Research and my Clinician Scientists Fellowship, the Linbury Trust, Action for M.E. and I’m the Medical Adviser for AYME.

[Slide]

And this is where I work.

Thank you very much.

——-

There was a Q and A session which included questions about the RNHRD NHS FT/University of Bristol Lightning Process pilot.

House of Commons Debate: Health: Lightning Process

House of Commons Debate: Oral Answers to Questions, Health: Lightning Process

Shortlink: http://wp.me/p5foE-30p 

Reports are coming in that NHS GPs and CFS service therapists are already recommending the untrialled and unregulated Lightning Process to patients. If your GP, hospital consultant or CFS clinic staff have recommended the Lightning Process to you or to a child or young person with ME or CFS I would be pleased to hear from you. 

Contact ME agenda via the Contact Form or E-mail Suzy Chapman in confidence.

On 10 February 2009, Ms Celia Barlow, former MP for Hove (Labour), asked the Minister of State, Department of Health (Phil Hope) what guidance the Department of Health has issued to NHS trusts on the use of the Lightning Process in the treatment of people diagnosed with chronic fatigue syndrome:

Hansard

http://www.publications.parliament.uk/pa/cm200809/cmhansrd/cm090210/debtext/90210-0002.htm#09021037000735 

10 Feb 2009 : Column 1235

House of Commons
Tuesday 10 February 2009

The House met at half-past Two o’clock
Prayers

[Mr. Speaker in the Chair]

Business before Questions

[...]

Oral Answers to Questions
Health
The Secretary of State was asked—

10 Feb 2009 : Column 1243

Lightning Process

8. Ms Celia Barlow (Hove) (Lab): What guidance his Department has issued to NHS trusts on the use of the lightning process in the treatment of people diagnosed with chronic fatigue syndrome. [255402]

The Minister of State, Department of Health (Phil Hope): The Department has issued no guidance on this process, because we expect decisions on clinical interventions, whether they involve complementary or alternative treatments, to be made by front-line clinicians. In making such decisions, clinicians will take into account evidence for the safety and clinical and cost-effectiveness of the treatment concerned.

Ms Barlow: I thank my hon. Friend for his reply. Sussex ME and Chronic Fatigue Society works tirelessly to assist the 6,000 adults and children across the county who suffer from the disease, and several of those people have been contacted about the success of the lightning treatment. Will he assess that treatment, in conjunction with the bodies that he has mentioned, and monitor how successful it is?

Phil Hope: It is not for the Department to undertake that activity. The National Institute for Health and Clinical Excellence, the independent body, issues guidance on the use of such treatments, and that guidance is the subject of a judicial review this week. It is to that independent body that those patients and organisations should make their representations, so that it can make the appropriate recommendations on the use of such treatments.

Mr. Graham Stuart (Beverley and Holderness) (Con): I agree with the Minister that treatments such as these should not be performed on the NHS until independent

10 Feb 2009 : Column 1249

medical evidence has been obtained to show their efficacy. Will he tell the House how much is spent by the NHS on chronic fatigue syndrome?

Phil Hope: I am grateful for the hon. Gentleman’s support for a way of working in the national health service that has widespread support on both sides of the House and throughout the country. I do not have the figures that he requests to hand, but I will write to him in due course.

 

National Institute for Health and Clinical Excellence (NICE)

Chronic fatigue syndrome / Myalgic encephalomyelitis (or encephalopathy); diagnosis and management  (CG53)

Issued: August 2007   Expected review date: August 2010

http://guidance.nice.org.uk/CG53

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

Invest in ME Decline BACME Invitation

Invest in ME Decline BACME Invitation

Shortlink: http://wp.me/p5foE-2Z2

Invest in ME has issued a statement around its decision to decline an invitation to become a member of BACME (British Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis).

For Invest in ME’s position statement on the proposed Bath/Bristol pilot study to investigate how to recruit to a randomised controlled trial looking at the Phil Parker Lightning Process and specialist medical care in CFS/ME in children as young as eight, go here Invest in ME March 2010 Newsletter.

 

Invest in ME Decline BACME Invitation

Invest in ME recently received an invitation from the British Association for Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis (BACME) inviting us to apply to become an executive member of that organisation.

BACME is chaired by consultant paediatrician Dr Esther Crawley – who was recently awarded a grant to do a clinical trial on the Lightning process (funded with £164,000 from the Linbury Trust and the Ashden Trust) – a business which assumes that no matter what is causing an ME patient’s illness it will help cure a patient from them.

With cases of people with ME being made worse from this business the recent Norwegian film by Paal Winsents (“Make Me Well”) illustrates the danger of people with no medical training attempting to treat a neurological illness such as ME. A telling quote from a LP practitioner in that film says it all -

“…. It does not matter how it started. Sometimes people had a bacterial infection, sometimes people had a viral infection. It does not matter how it started. The Lightning Process works equally well”.

Such uninformed, non-clinical and dangerous statements being used by people promoting businesses without any medical training, at a time when the need for more funding for biomedical research into ME and the evidence to support that funding requirement is overwhelming, is symptomatic of the problems on a non-strategic, non-biomedical approach to diagnosing and treating people with ME. Meanwhile ME patients and their families have to witness this absurd waste of money.

Dr. Crawley’s views on ME aren’t those of Invest in ME’s and we have serious concerns about her position as chair of an organisation such as this.

The Assistant Chair of BACME is Alison Wearden, who is Reader in Psychology at the University of Manchester, Chair Elect of British Psychological Society’s Division of Health Psychology and Associate Editor of British Journal of Health Psychology and whose studies include “Illness cognitions and diabetes – how the beliefs which patients hold about their diabetes impact on their attempts to manage it, their adjustment and well-being”. Wearden was head of the FINE trials (click here) – a waste of taxpayers’ money which resulted in nothing of value for people with ME.

BACME has a constitution to which members have to sign up. In this constitution, which BACME requires its members to support, it includes the following-

2.2 Objectives

2.2.1 To champion evidence-based approaches to the treatment of CFS/ME, such as those provided in the NICE guidelines

2.2.4 To support the delivery of services and to enable services to maintain standards of care in the treatment of CFS/ME as set out in the NICE guidelines

4. The Executive

4.1.4 The BACME Executive will invite no more than four people drawn from National UK CFS/ME organisations which explicitly support the aims and constitution of the organisation to sit on the Executive committee as either observers or members

Invest in ME rejected the NICE Guidelines and therefore cannot agree to endorse a constitution which lists among other things the above objectives.

Invest in ME endorse the critique set out by Twisk FNM, Maes M. in their review of CBT/GET in which they state

“So, it can be concluded that the efficacy claim for CBT/GET is false. But what is more important, is the fact that numerous studies support the thesis that exertion, and thus GET, can physically harm the majority of the ME/CFS patients.

This assertion is confirmed by the outcomes of two large patient surveys in the UK and Norway, and two smaller surveys in Scotland and the Netherlands.”

(A review on Cognitive Behavorial Therapy (CBT) and Graded Exercise Therapy (GET) in Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS): CBT/GET is not only ineffective and not evidence based, but also potentially harmful for many patients with ME/CFS. Neuro Endocrinol Lett. 2009 Aug 26;30(3):284-299.) click here

The NICE guidelines need complete revision* as their current version is far from evidence-based.

The NICE guidelines have been shown to be ineffectual, biased, unusable, with ME patients eventually taking NICE to a judicial review.

For an organisation to support NICE, and require members to abide by them, let alone “champion” them illustrates a flawed and damaging basis for any claim to represent people with ME and their families. Such an organisation is likely to continue to force a continuing approach of going round in circles, obfuscating the true requirements for ME patients and achieving little of real value for people with ME and their families.

With BACME maintaining its present structure, current chairman and constitution then Invest in ME will decline any offer to apply for membership of this organisation.

It would be unethical of Invest in ME to sign up to such a constitution and Invest in ME’s aim remains to find ways other than those set out in the NICE guidelines to treat patients diagnosed with ME according to the Canadian Clinical Consensus guidelines.

Further Reading: (links provided by Invest in ME)

Magical Medicine: How to Make a Disease Disappear – click here

Lightning Process – The Falsehood of Magical Medicine – IiME Newsletter March 2010 – click here

Can the MRC PACE Trial be justified? – click here

Wessely’s Way: Rhetoric or reason? – click here

Invest in ME – Communications with the UK Chief Medical Officer – click here

Agenda: APPG on ME meeting Wednesday, 10 March 2010

Agenda: APPG on ME meeting Wednesday, 10 March 2010

Shortlink: http://wp.me/p5foE-2P4

APPG Legacy Paper 26.02.10

Agenda meeting 10 March 2010

Next APPG

The next All Party Parliamentary Group on M.E. will meet in Committee Room 18, House of Commons, between 1.30 and 3pm, Wednesday 10 March 2010.

AGENDA

1. Welcome by the Chairman

2. Minutes of the last meeting

3. Speaker: Vanessa Stanislas, CEO, Disability Alliance, Tackling Disability Poverty

4. APPG Report on the Inquiry into NHS Services

5. APPG Legacy paper (attached) to be formally approved

5. Matters arising

- Review of NICE guidelines

7. Any other business

8. Date of next meeting

Changes to the minutes of the last meeting (attached) should be e-mailed to the Secretariat (tristana.rodriguez@afme.org.uk , 0117 9301325) by 5pm 3 March please.

Please note:
It has been known for committee rooms to be taken over for other pressing parliamentary events and/or for parliamentarians to be called away at short notice. To avoid disappointment, those planning to attend are advised to check this website where we will post a cancellation notice should this be necessary

Tristana Rodriguez
Policy Officer
Action for M.E.
Direct Dial 0117 930 1325

Registered charity number: 1036419. Registered in Scotland: SCO40452

www.afme.org.uk

Times: ME coverage 30 January 10

Media coverage 30 January 10

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

Update @ 31 January

News of the World  |  Carole Malone  |  31 January 2010

Mother’s courage betrayed by law

BBC News: Poll ‘support for mercy killings’: http://news.bbc.co.uk/1/hi/uk/8489744.stm

There will be a ‘Panorama’ special on the Kay Gilderdale case tomorrow, Monday, 1 February.

Panorama

 

http://www.bbc.co.uk/programmes/b00qs930

I Helped My Daughter Die

Broadcasts

BBC One  |  Monday, 1 Feb 2010  20:30

Next on:  |  BBC News Channel  |  Thursday 4 Feb 2010  04:30

Synopsis

What drives a mother to help her child die? For almost a year, Panorama cameras have been following Kay Gilderdale – the woman at the centre of the recent Assisted Suicide trial – as she faced a possible life sentence over her part in the death of her daughter Lynn.

She talks exclusively to Jeremy Vine about the night she helped her bedridden daughter kill herself and explores whether the law should be changed with those on both sides of the debate, including Debbie Purdey and Baroness Campbell.

Update @ 31 January

Daily Mail  |  Anne Atkins  |  31 January 2010

ANNE ATKINS: I know the curse of ME well but I’m sorry, it was wrong to let Lynn die

Times  |  Dr Martyn Lobley: Commentary  |  30 January 2010

‘ME is a diagnosis only reached by excluding other possibilities’

Dr Martyn Lobley is a GP in southeast London

freefoto

Postings on ME agenda site for media coverage of the death of Lynn Gilderdale and the legal case are identified by the Freefoto.com image above and archived in Categories under Gilderdale case. ME agenda is unable to respond to enquiries in connection with the case from members of the public or the media.

TimesSteve Bird  |  3o January 2010

They told dying daughter she was lying, says ME mother Criona Wilson

As Criona Wilson knelt beside her dying daughter’s bedside, she promised her that her death would not be in vain. Before the frail body of 32-year-old Sophia finally succumbed to the medical complications and ravages of ME, she replied in a whisper: “Then it’s all worth it.”

In the years that followed, Mrs Wilson, 66, a former midwife, dedicated her life to proving that her daughter’s condition was not a figment of imagination, nor one that merited her youngest child’s incarceration in a mental hospital.

Her battle saw her take on the medical profession and accepted thinking about the diagnosis and treatment of ME, also known as chronic fatigue syndrome. Eventually, in 2006, a coroner ruled that Sophia’s death was the result of myalgic encephalomyelitis — the first such ruling at an English inquest.

The fierce debate over ME has been highlighted once again by the case of Kay Gilderdale, who admitted assisting her daughter, Lynn, to kill herself after suffering from ME for 17 years. When she walked free from Lewes Crown Court on Monday, having been cleared of murder, Mrs Wilson was among those cheering her from the public gallery.

Related Links
No blood test to diagnose if a patient has ME
DPP defends murder charge against ME mother

“I had to be there,” said Mrs Wilson yesterday. “It was such an important case. And the verdict was a vote for common sense in a trial that highlighted what people suffering ME and their carers have to face.”

Her daughter, Sophia Mirza, was a talented and popular arts graduate living with her mother in Brighton in 1999 when she contracted ME at the age of 25. She became confined to her bedroom and, just as Miss Gilderdale had, needed round-the-clock care.

In 2003 she was visited by a psychiatrist, even though Miss Mirza complained only of physical discomfort. The psychiatrist told her that she was making up her symptoms and if she continued to pretend to be ill he would section her under the Mental Health Act. Mrs Wilson said: “I knew my daughter. There was no way she was mentally ill or pretending.”

When the dread knock on her door finally came in 2003, there was little she could do. A policeman forced the door open and the psychiatrist and a social worker locked themselves into Miss Mirza’s room to prepare her for her trip to a psychiatric ward.

Her condition took a dramatic turn for the worse. After 13 days she was released and taken back to the care of her mother. “That spell in a mental hospital set her back terribly. We lost all faith in medical professionals. We were alone,” said Mrs Wilson.

In 2005 Miss Mirza could barely muster the energy to speak, eat or drink. She and her mother had already agreed that no doctors should be called in case she would be sectioned again. On November 25, 2005, Miss Mirza died in her bed at home.

Wiping tears from her eyes, Mrs Wilson said: “We did everything we could.” Determined to get to the bottom of why her daughter’s treatment had been so bad, she got hold of her medical records. After being contacted by the 25 Per Cent ME Group, which campaigns for those with the most acute form of ME, she agreed to her daughter’s body being examined.

At the inquest the next year a neuropathologist told the court that Miss Mirza’s spinal cord was inflamed and three quarters of her sensory cells had abnormalities. It was, the court heard, a clear physical manifestation of ME. The coroner ruled that she had died from “acute renal failures as a result of chronic fatigue syndrome”.

A year later, the National Institute of Clinical Excellence (NICE) issued its first guidelines on the diagnosis and treatment of the illness, describing it as “relatively common”, affecting up to 193,000 people in Britain. At the heart of that guidance is the need to take into account the opinions of the patients.Mrs Wilson is campaigning to get the Government to fund research into ME. “It’s not over yet.”

Documented involvement of viruses in ME/CFS: M Williams 30 December 09

Documented involvement of viruses in ME/CFS by Margaret Williams

One of a series – see notice below

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

Full text here in MS Word format: Documented involvement of viruses in ME 30.12.09

and at:

http://www.meactionuk.org.uk/Documented-involvement-of-viruses-in-ME.htm

http://www.meactionuk.org.uk/Documented-involvement-of-viruses-in-ME.pdf

Documented involvement of viruses in ME/CFS

by Margaret Williams

30 December 2009

For decades it has been known and shown that viruses play a role in ME/CFS. Now there is evidence of a direct association with a gamma retrovirus – XMRV – that disables the immune system in ME/CFS, thus allowing numerous latent viruses to re-activate, which could result in the protean symptomatology…

NOTICE

Magical Medicine: How to make a disease disappear – Hooper and Williams – Spring 2010

Prior to the publication of the MRC PACE Trial results in the Spring of 2010, Professor Malcolm Hooper and Margaret Williams will be releasing a series of linked documents addressing central flaws in the PACE Trial.

These documents form part of a more substantial document that has the provisional title

Magical Medicine: How to make a disease disappear

This document has a dedicated web page at:

http://www.meactionuk.org.uk/Magical-Medicine.htm

This web page will contain an easily accessible Contents page so that people can surf and then select whatever section (or part of a section) they may wish to look at.

Although he and Margaret Williams have previously addressed some of the issues contained in the substantial document, Professor Hooper thinks it essential for there to be a single, comprehensive narrative of events and information leading up to and involving the PACE Trial.

Magical Medicine: How to make a disease disappear

Professor Malcolm Hooper and Margaret Williams

Spring 2010

http://www.meactionuk.org.uk/Magical-Medicine.htm

Documents already published that form part of the larger PACE Response document:-

1. Interstitial cystitis and CFS (26th August 2009)

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

2. More evidence of inflammation in ME/CFS (14th November 2009)

http://www.meactionuk.org.uk/More-evidence-of-inflammation-in-(ME)CFS.htm

3. The role of viruses in ME/CFS // XMRV (21st November 2009)

http://www.meactionuk.org.uk/The-role-of-viruses-in-ME.htm

4. The MRC’s secret files on ME/CFS (10th December 2009)

http://www.meactionuk.org.uk/The-MRC-secret-files-on-ME.htm

5. Statements of concern about CBT/GET for the Judicial Review (12th December 2009)

http://www.meactionuk.org.uk/Statements-of-Concern-for-High-Court.htm

6. Can the MRC PACE Trial be justified? (17th December 2009)

http://www.meactionuk.org.uk/Can-the-MRC-PACE-Trial-be-justified.htm

and now this latest one:

7. Documented involvement of viruses in ME/CFS (30th December 2009)

http://www.meactionuk.org.uk/Documented-involvement-of-viruses-in-ME.htm

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