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/

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Dr Esther Crawley: Transcript of Presentation: The Future of Research in CFS/ME

Dr Esther Crawley: Transcript of Presentation: “The Future of Research in CFS/ME”

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

May be reposted in full or in part, provided it is reposted unedited and a link to source is given. When linking to this post please provide the specific post URL.

The Tiny URL link for this post is: http://tinyurl.com/Crawley-Presentation-March-10

The WordPress Shortlink is: http://wp.me/p5foE-3ay

 

In March, this year, Dr Esther Crawley gave a presentation to a Dorset patient support group entitled “The Future of Research in CFS/ME” during which she also spoke on XMRV research and delivered some very controversial comment on the operation and findings of the Whittemore Peterson Institute (WPI).

It is understood that the presentation was attended by Annette Brooke (MP for Mid Dorset and North Poole) and Vice-Chair of the re-formed APPG on ME.

Below is an unofficial transcript that has been provided to me to supplement the partial transcript ( Dr Esther Crawley discusses XMRV and Whittemore Peterson Institute (WPI), March 2010 ) which was first published on ME agenda, in August.

Care has been taken in the preparation and proofreading of this text; some transcription errors and ommissions may remain.

 

Dorset CFS/ME Society
Annual Medical Lecture

27th March 2010

The Future of Research in CFS/ME

Esther Crawley

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. Continue reading

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

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

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

ME Association report followed by full Hansard transcript

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

ME Association News page

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

————-

Full Hansard transcript

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

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

11 Oct 2010 : Column 379

Health: Neurological Conditions
Question for Short Debate

6.09 pm

Asked By Baroness Gardner of Parkes

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

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

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

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

RiME: Commentary on APPG on ME Inquiry into NHS Service Provision for ME/CFS, March 2010

RiME: Commentary on APPG on ME Inquiry into NHS Service Provision for ME/CFS, March 2010

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

From Paul Davis RiME Campaigning for Research into Myalgic Encephalomyelitis

16 September 2010

APPG on ME Inquiry into NHS Service Provision for ME/CFS March 2010

There is a link to the full Report on the RiME Website, see NHS Services Inquiry folder.

The Report was signed by five members of the APPG on ME: Des Turner MP (Chair), Tony Wright MP, Andrew Stunell MP, Peter Luff MP, Lady Mar.

Note: The Committee on Standards in Public Life promotes, ‘high standards in the public sphere through the seven principles… ‘: they include: objectivity and honesty. Have these criteria been met?

Paul Davis paul641@talktalk.net   www.rime.me.uk

RiME Condemns APPG Inquiry Report

Problems re. Nomenclature and Classification

In the Foreward P.3 Des Turner writes, ‘… The APPG accepts the WHO Classification of ME (ICD G93.3) as a neurological condition… ‘ However, if one flicks to the back of the Report, 14 out of the 24 sources refer to Government Reports (1), with the Royal College of GP’s Report, connected to CMO Report and NICE Guidelines, being used seven times; sources which are not about the illness described by G93.3. The Inquiry Group also received evidence from PCTs: but ME patients complain that clinics set up following the CMO Report are not about ME; the clinics in Kent, for example, exclude patients with neurological illness; so, is the evidence from PCTs accurate or relevant as far as ME is concerned?

The Terms of Reference say (P. 21):

ME is classified as a neurological illness under the World Health Organisation classification (ICD G93.3). However the NHS largely uses the term Chronic Fatigue Syndrome instead of ME or else adopts the hybrid CFS/ME in diagnosing and treating patients. Terminology is a contentious matter. It has some bearing on this inquiry because to only use the precise WHO classification of ME above will impede access to information from the NHS that is crucial to the success of this inquiry…

Continue reading

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

A question of ethics; Juvenile Treatment – Testing and LP – CBT/GET ethics

A question of ethics; Juvenile Treatment – Testing and LP – CBT/GET ethics – two views

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

“The first thing was to take responsibility for our illness. I had to stop saying I had M.E. Instead I have to say I am ‘doing M.E’, I wasn’t tired, I was ‘doing tired and doing muscle aches’. The implication being if I am doing it I can stop doing it.” [9]

20 July 2010

Published with kind permission of Karl Krysko.

A version of this commentary was published earlier today, on the Co-Cure Listserv mailing list.

Juvenile Treatment -Testing and LP-CBT/GET ethics

Recent attention has been drawn to the question of ethics in attempting a Lightning Process (LP) pilot study on children and juveniles suffering from ME. It is right to question such. The very nature and history of this pseudo-treatment approach should dictate against even entertaining the thought, yet alone dabbling in its dangerous claims.

It is obvious that some individuals in the LP, if they are lucky, do not actually have ME in the first place, while others who do, in fact, and show some ‘improvement’ are simply drawing on margins of redundancy for extra energy expenditure that patients automatically and unconsciously build into their cautious use of activity generally. The un-lucky ones, however, encouraged and lured with promises of ‘cure’ in the LP trespass these self-protection margins, and face precipitating a serious relapse.

The basic therapeutic ‘rationale’ for the LP has been around for many years during which time its foundations, essentially Neuro Linguistic Programming (NLP) and Affirmation therapy, have had plenty of time (and patient financing) to establish their scientific and medical validity. This they have failed to do long term.

Practitioners such as Leonard Orr, of ‘re-birthing’ fame, and others in the early 1980s motivated their newly diagnosed and pathetically desperate HIV patients, for example, to go jogging along the beaches of California (where else!) while affirming repeatedly to TV cameras, and all, that they were no longer ill, did not have a life threatening medical condition, and were in fact in perfect health. This claim they were directed to assert most emphatically, and especially so – no matter how unwell they felt or became, as if the ‘magic’ of insisting this to be the case could somehow make it so.

Then as now, patients were charged most handsomely for this treatment approach. Many such individuals back then, before the era of medical understanding and proper treatments for the AIDS virus, went to their early death still chanting and ‘affirming’ their pathetic mantras, in total denial. The modern versions of this nonsense, and it has various forms even among some charismatic ‘healing’ religions, just goes to show how difficult it is to kill off a good money making racket.

But the current discussion has missed one similar and important parallel to the question of ethics in treating and testing child victims of ME with the LP. The proposal has recently been made in Wales that the NHS should be petitioned for an essentially CBT and GET-GAT treatment service for ME youngsters, alongside the already existing services for adults here in the Principality.

But notice how the facts and ethics of the LP and CBT/GET link unmistakably:

Just as CBT thinking really began to replace the old ‘taking and insight therapy’ and catharsis types of approach to behavioural-psychological based problems, at the same time Affirmations and NLP appeared on the scene.

As with the LP, and after all this time since, the scientific and medical validity of CBT and de-conditioning therapy for ME is also lacking, despite early robust efforts, here for example, by the Welsh ME/CFS Service (with several others conducted in the UK at the time) over five years between 1999 and 2004 to establish its value, using the best methodological, statistical and University (Bangor) facilities available. After some attempted spin-up, those poor results were later sat on.

Like the LP also, the CBT approach obviates the patients’ instincts and intuitions concerning their health situation, as well as the views of their carers, friends and family. The patient in both paradigms has to denounce what they know they know, experience, and have learned about their illness and coping in order to, supposedly, get better. And both regimes thereby effectively downgrade or refute the genuine seriousness, gravity and clinical authenticity of ME.

Like the LP, CBT/GAT also make promises that cannot be substantiated or upheld, clearly so for our badly compromised patients; one nine year GP-diagnosed, for example, severely effected and bedridden ME patient near Flintshire north Wales, was told by her ME Clinic that she would be well and functioning within the year, if she maintained the methods propagated at their eight day training course. Meantime, similar attempts were made to overturn her longstanding ME diagnosis with her GP. Lightning Process patients are made equivalent promises, and are similarly encouraged to anathematise their ‘ME title and patient ‘role’.

Most seriously and least obviously, both the LP and CBT/GAT approaches irresponsibly reject, ignore, are indifferent to, or deny the existence of (already) serious ongoing molecular and organic damage that will be exacerbated over time by inappropriate, incremented, upward gradations of kinetic load, in the name and claim of ‘improvement.’ The compounding of this molecular damage could have mortal consequences for many ME patients, at least over the long-term and wherein, temporally, this therapy is exactly designed to operate.

In their most recent and comprehensive Review of the Research to date, for example, Twisk and Maes (2009 – 10) refer in this regard to forms of bio-chemical long-term damage that CBT and methods like Graded Activity/Exercise for ME patients could produce, stating that the therapy ‘is not only ineffective and not evidence based, but also potentially harmful for many patients with ME.’

The question of ethics, of placing ME children in the direct oncoming hit-path of a Lightning Process treatment and assessment – in a ‘test to destruction’ fashion – potentially a consequence in the short or long term – is therefore as unethical as doing so in its other latest crack-pot analogue recently announced here in the Principality as ‘a new campaign’; for yet another, this time specifically child and juvenile, CBT/GAT Service for Wales.

Rejecting the Lightning Process and its flawed manifestations down the decades, it is for the same parallel reasons here given between the two treatments, that we also reject and will actively campaign against such an irresponsible, scientifically indefensible and, yes, unethical NHS development for our young ME victims living here in North Wales.

Karl Krysko  BA (hons), BSc.

 

Although Ms Jacqui Footman signs herself, in this Co-Cure opinion piece, as a “Mother and Information Officer, South Molton ME Support Group”, Ms Footman fails to disclose a conflict of interest.

Ms Footman is a provider of EFT and similar therapies and advertises her business in the magazines of national patient organisations.

Advert from an ME Association magazine – ME Essential

“Jacqui’s EFT practice combines aspects of counselling, life-coaching, NLP and psychotherapies such as CBT and solution-focussed therapy with the powerful new energy-psychology technique EFT, which involves tapping acupuncture points to bring about dramatic personal change and healing. EFT is available by phone.

“Jacqui Footman BA (Hon), PGCE, Member National Council of Psychotherapists, Practitioner of Emotional Freedom Techniques (EFT), NLP, EMDR, WHEE, EmoTrance and Reiki. Registered (General Regulatory Council for Complimentary Therapies). Trained by Dr Myhill to support her ME/CFS treatment programme. Info Officer, South Molton ME Support Group with extensive experience of ME/CFS at many levels.”

Published on the Co-Cure Listserv mailing list  |  20 July 2010

From Jacqui Footman

[CO-CURE] NOT, MED, ACT: A question of ethics

Speaking of ethics, my question – is it ethical to attempt to deny 90 children/young people the opportunity to have their young lives back? or to try to persuade others to rescind that opportunity?

My 12-year-old was diagnosed with ME 3 months after glandular fever. The diagnosis was confirmed by our two UK best-known paediatricians in the field, Drs Speight and Crawley. She definitely had ME/CFS. She went from active swimmer and gymnast to wheelchair. She missed a year of school. Out of desperation with an NHS strict activity management approach which was driving her to distraction and starting to cause her to feel miserable she reached out to Lightning Process(LP) … and was back to enjoying an active life within weeks.

The LP Practitioner she saw has worked with many teenagers and has 100% success rate with teenagers so far.

Because of the obvious change when my daughter did LP, notably that she immediately went from so often looking deathly pale to having a constant healthy rosy complexion, someone in our local ME support group who had been bedbound for 10 years since being made dreadfully worse with CBT/GET decided there must be something to LP and it must have some sort of capacity to directly affect the physiology. She mustered the courage to try LP herself and the same practitioner went to her house to do it with her as she wasn’t well enough to get to a LP course. She was walking round her garden by the third day of the LP course and has gone from strength to strength since. That was over a year ago. She has just won a design competition and is to start the high profile design course in Oxford for which she won the fees in September this year. She has a life again after 17 years of existence in a bed. She had ME/CFS too, no question.

LP is nothing like the NHS CBT/GET/GAT treatments. I’ve detailed knowledge of both. LP bears no relationship to the deconditioning theories etc upon which CBT treatments have been based.

When LP first came out I was sceptical. After this personal experience and observation I don’t hesitate to recommend this LP Practitioner who once had ME/CFS herself and has a brilliant understanding of what people need to get well and gives all the support and follow-up needed. Although I don’t recommend LP per se without qualification. I do believe there should be further research. LP seems to work best with young people.

Jacqui Footman
Mother and
Information Officer, South Molton ME Support Group
info@mecfssupportdevon.org.uk
(please note, long and negative anti-LP emails will not be answered, so save your energy)

Related material:

Press Release issued 2 March 2010: Research study to investigate a chronic childhood condition
 

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

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

Poll: Do you think it is ethical to undertake a pilot study looking at the feasibility of recruiting children aged 8 to 18 with CFS and ME into a randomised controlled trial (RCT) comparing Lightning Process and specialist medical care when no rigorous RCTs into the application of LP in adults have been undertaken? 

Register your opinion here: http://tinyurl.com/LightningProcessPilotStudyPoll 

References:    

[1] Press Release, University of Bristol, 2 March 2010:
http://www.bristol.ac.uk/news/2010/6866.html   
Media article: Chronic fatigue syndrome study Mineral Water Hospital 

[2] ME Association position statement on Lightning Process, February 2007  

[3] Action for M.E. article on Lightning Process, InterAction magazine, March 2007:
http://www.afme.org.uk/res/img/resources/IA%2059%20lightning%20process.pdf    

[4] Patient Survey 2008, Action for M.E. and AYME:
http://www.afme.org.uk/res/img/resources/Survey%20Summary%20Report%202008.pdf    

Patient Survey May 2010, ME Association:
http://www.meassociation.org.uk/images/stories/2010_survey_report_lo-res.pdf   

[5] Minutes, Forward-ME meeting, House of Lords, 8 July 2009:
http://www.forward-me.org.uk/8th%20July%202009.htm    

[6] MRC Guidelines Medical Research Involving Children (Nov 2004, revised Aug 2007):
http://www.mrc.ac.uk/Utilities/Documentrecord/index.htm?d=MRC002430    

[7] Request for information under FOI and FOI Office responses: 
FOI – Lightning Study Chapman 17.06.10  

[8] Lightning Process website
http://www.lightningprocess.com/ 

[9] LP Doesn’t Work for ME: Personal accounts from LP “trainees”:
http://www.sayer.abel.co.uk/LP.html 

Letter: Lightning process for ME didn’t work for me:
http://www.thisisnorthdevon.co.uk/news/Lightning-process-didn-t-work/article-613394-detail/article.html    

Personal account of Lightning Process technique as applied to patient with ME: 
http://www.forums.aboutmecfs.org/showthread.php?4687-Article-An-MD-on-the-Lightning-Process&p=77679&viewfull=1#post77679 

Personal account of Lightning Process as applied to patients with ME and MS:
http://forums.randi.org/showpost.php?p=4293368&postcount=1   

[10] Sample Lightning Process application form:
http://www.changeworksforyou.com/applicationform.htm 

[11] ASA adjudication against “Withinspiration”, June 2010:
http://www.asa.org.uk/Complaints-and-ASA-action/Adjudications/2010/6/Withinspiration/TF_ADJ_48612.aspx   

[12] Withinspiration “NHS and Lightning Process research collaboration”:
http://www.withinspiration.co.uk/lightning_process_NHS_research.php    

[13] Radio 4 Case Notes: Dr Crawley on CFS clinic approach, November 2007 
http://www.bbc.co.uk/radio4/science/casenotes_tr_20071106.shtml 

[14] RNHRD Bath Chronic Fatigue Syndrome/ME Service for Children & Young People
http://www.rnhrd.nhs.uk/departments/chronic_fatigue_syndrome_children.htm

DSM-5 submissions collated on Dx Revision Watch site

DSM-5 submissions collated on Dx Revision Watch site

Shortlink: http://wp.me/p5foE-2S0

The American Psychiatric Association (APA) public review and comment period on its draft proposals for diagnostic criteria for DSM-5 closed on 20 April.

I have been collating copies of submissions on a dedicated page on my Dx Revision Watch site, here:

http://wp.me/PKrrB-AQ

Patient organisations, professionals and advocates who submitted comments and responses to the draft proposals are invited to provide copies of their submissions for publication.  Forward copies to me.agenda@virgin.net or via the Dx Revision Watch Contact form.

International patient organisations submissions:

Whittemore Peterson Institute, Steungroep CFS Netherlands, CFS Associazione Italiana, ME Association, Action for M.E., Invest in ME, Mass. CFIDS/ME & FM, The CFIDS Association of America, Vermont CFIDS Association, IACFSME, The 25% ME Group

Patient advocate submissions:

Suzy Chapman UK (2), Tammie Page M.A. US, LH Seth US, Patient advocate US, John Mizelle, Therapist US, Peter Kemp UK, Ian McLachlan UK, Andrew US, Mary M. Schweitzer PhD US

On 20 April, the APA issued this News Release:

http://tinyurl.com/DSM5reviewcloses

or open PDF here:  APA Closes Public Comment Period for DSM-5 Release No. 10-31

For Information Contact:

Eve Herold, 703-907-8640

press@psych.org  Release No. 10-31

Jaime Valora, 703-907-8562

jvalora@psych.org

EMBARGOED For Release Until: April 20, 2010, 12:01 AM EDT

APA Closes Public Comment Period for Draft Diagnostic Criteria for DSM-5

DSM-5 Work Groups to Review Comments

ARLINGTON, Va. (April 20, 2010) -The American Psychiatric Association received 6,400 comments on a draft of the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders during a 2½ month public comment period, which ends today.

“This period of public review and comment of diagnostic criteria is unprecedented in both the field of psychiatry and in medicine,” said Alan F. Schatzberg, M.D., president of the American Psychiatric Association. “It demonstrates the APA’s commitment to an inclusive and transparent process of development for DSM-5.”

The criteria have been available for comment since they were published online on Feb. 10. The draft criteria will continue to be available for review on the DSM-5 Web site, www.dsm5.org , and updates to the draft will be posted on an ongoing basis. The public will have another opportunity to comment on the criteria and any changes after the first round of field trials.

A number of clinicians, researchers and family and patient advocates participated in the public comment period, contributing more than 6,400 comments on various aspects of DSM-5.

All comments submitted via the Web site were assigned to a topic-specific expert from one of the thirteen DSM-5 work groups for review. In their review, work group members will note submissions that need additional consideration from the work group as a whole. Upon evaluation from the entire work group, draft criteria may be revised.

For example, the Eating Disorders Work Group has proposed additional revisions to criteria for Anorexia Nervosa and Bulimia Nervosa based on comments received.

“The goal of DSM-5 is to create an evidence-based manual that is useful to clinicians and represents the best science available,” said David J. Kupfer, M.D., DSM-5 Task Force chair.

“The comments we received provide the task force and work groups with additional information and perspectives, ensuring that we have fully considered the impact any changes would have on clinical practice and disorder prevalence, as well as other real-world implications of revised criteria.”

Most of the comments that were submitted were diagnosis-specific, while nearly one-fourth were general. Distribution of the comments varied across the 13 work groups.

The work groups with the largest number of submitted comments include:

. Neurodevelopmental Disorders Work Group (23% of comments)

. Anxiety Disorders Work Group (15% of comments)

. Psychosis Disorder Work Group (11% of comments)

. Sexual and Gender Identity Disorders (10% of comments)

Following a review of all submitted comments and possible revisions to the draft criteria, the APA will begin a series of field trials to test some of the proposed diagnostic criteria in clinical settings. The proposed criteria will continue to be reviewed and refined over the next two years.

Final publication of DSM-5 is planned for May 2013

[Ends]

RiME Notice: 15/03/10

RiME Notice: 15/03/10

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

RiME Campaigning for Research into Myalgic Encephalomyelitis  www.rime.me.uk 

RiME Notice

I wanted to let supporters know that I got Shingles 3-4 weeks ago. Unpleasant and I have to rest.

Frustrating… Much going on and much to do.

I had intended to attend the final meeting of the APPG on ME March 10 and make some points about the deeply flawed draft Report on the Inquiry into NHS Service Provision for ME/CFS (the one handed out at the previous meeting), notably:

1. What is this Inquiry really about? The description of ‘ME/CFS’ on Page 2 of the draft Report mentioned above is not about the neurological illness described by ICD 10 G93.3 or the Canadian Criteria.

2. That significant evidence submitted to the Inquiry (over 50 copies were sent to RiME) is not accurately reflected in the draft Report. Time and again ME parties say (A) the clinics set up following the CMO Report are not about the neurological illness Myalgic Encephalomyelitis (B) why is the APPG on ME (it recognises ICD G93.3 in its Code of Conduct) investigating these clinics?

That it is not reinforces the view that the APPG on ME is not for ME patients but about them; and that it is primarily about promoting Government policy (not about G93.3 ME).

I haven’t yet been able to read the Report handed out on March 10 but if it is anything like the last it is totally unacceptable and will need challenging.

If you’re not happy with it, let the politicians know – Dr Des Turner MP, Lady Mar, your own MP… (please send us copies).

If there are a few who still think the likes of Dr Turner and Lady Mar are, overall, helping ME patients – two words: Prove it.

Good Wishes, Paul

Paul Davis

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

Former ME Association Chair, Chris Ellis, writes to Chair, APPG on ME

Former ME Association Chair, Chris Ellis, writes to Chair, APPG on ME

Shortlink: http://wp.me/p5foE-2Q3

Mr Ellis, who resigned as Chair and Trustee of the ME Association Board of Trustees in February 2004, wrote to Dr Des Turner, MP, a few weeks ago, after reading the Minutes of the December meeting of the All Party Parliamentary Group on ME.

Mr Ellis has kindly given permission for his letter to be published on ME agenda and Co-Cure mailing list and is to be commended for speaking out so passionately in support of those members of the ME community who struggle to attend these meetings and who represent the interests of those unable to participate.

Des Turner MP
APPG ON CFS/ME
House of Commons
London

08 February 2010

Dear Mr Turner

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

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

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

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

– 2 –

Turning now to the APPG report itself, the hotly disputed subject of CBT and GET treatments receives a bias which is unacceptable to the RIME faction I would think The minutes themselves show that the Minister himself has some reservations when he says “concerns have been expressed about the acceptability, efficiency and safety of several treatments including CBT and GET”. The report finds that these objections “might relate to the fact that they are not being delivered by properly trained healthcare workers”. Indeed a plausible concern and yet the obvious possibility that they just do not work and are dangerous when applied to M.E. sufferers (as distinct from the CFS hotchpotch) is not expressed. (Could it possibly be that I might be able to use the Psychiatric terminology that some people are “in denial” about such a hypothesis?). I would like to have been better informed about the submissions behind the report’s words “in part due to the fixed attitudes about causation by some health professionals”.

I would like to think that a more sympathetic manner will prevail towards Mr Davis and RIME in the future. I do believe that it is quite possible to remove most of the rancour if one simple action is taken.

And now I must offer you MY OWN APOLOGIES for the vehemence of the above words addressed to yourself. As the father of a young woman who, in her early twenties, contracted ME, who has continued to suffer a variety of severe symptoms (chronic “fatigue” indeed) for around 15 or so years AND has had to bear the “yuppie flue” stigma and the outrageous statements made by certain so-called eminent psychiatrists in the early years, I ask for your forgiveness. Yours is not an easy job, indeed.

Let us rid ourselves of much of the disputation at APPG meetings; let us achieve a more unified approach by ME organizations; just one simple and, what is more, virtually costless manoeuvre might well do the trick. Let us take the SPECIFIC application of the psychiatric initiatives out of the SPECIFIC ME equation. Let us simply re–name the local area clinics and associated baggage, which have hitherto been designated to ME, and let the new name reflect a comprehensive application of psychiatric treatments to any number of appropriate medical conditions. Given that it must be assumed that the medical profession approve of the likes of CBT and GET and must also be satisfied of the cost effectiveness of the present setup, surely it cannot be that such treatments would not benefit the recovery in a wide variety of illnesses.

Once removed from the equation SPECIFICALLY currently applied to ME, the hotly disputed psychiatric contribution to the subject would no longer be pivotal in causing such havoc in the realms of ME politics. You and the APPG would have a far quieter life, the Minister would have a much smaller angry postbag, the medical establishment would not I feel be terribly aroused and the cost would be minimal. Any mileage in this?

Yours sincerely

C R ELLIS

Related material

RiME response to APPG on ME Legacy Paper

APPG Legacy Paper 26.02.10

Minutes and Verbatim Transcript meeting of the APPG on ME held 2 December 2009

BMJ: Issue 6 March 10: Focus on “CFS” and XMRV

BMJ: Issue 6 March 10: Focus on “CFS” and XMRV

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

The 6 March issue of the BMJ includes seven XMRV and “CFS” related items.  There is also a Podcast which can be listened to on the BMJ site or downloaded here:

http://podcasts.bmj.com/bmj/2010/03/05/chronic-fatigue-syndrome/ 

The section on CFS and XMRV is 4.25 mins in from the start.

Contributions in the Podcast from Professor Simon Wessely on “CFS”, XMRV and the WPI paper, references to UK XMRV studies, the recent Dutch XMRV study and contribution from Jos W M van der Meer, professor of internal medicine, Department of Internal Medicine, Radboud University Nijmegen Medical Centre and Nijmegen Institute for Infection, Inflammation, and Immunity.

BMJ 6 March 2010 (Vol 340, No 7745)

http://www.bmj.com/current.dtl

1 Editor’s choice: ‘Let’s proceed with caution’ by Fiona Godlee.
Free full text: http://www.bmj.com/cgi/content/full/340/mar04_1/c1266

2 Editorial: ‘Chronic fatigue syndrome and human retrovirus XMRV’ by Simon Wessely and Myra McClure (p489)
Free full text http://www.bmj.com/cgi/content/full/340/feb25_1/c1099

3 Letter: ‘More than defeatism greets patients with ME’ from Stephanie Munn (p495)

4 Letter: ‘Severely affected, severely neglected’ from Charles Shepherd (p495)

5 Observations/Medicine and the media: Science, chronic fatigue syndrome, and ME by Cathie Sudlow (p510)
Extract: http://www.bmj.com/cgi/content/extract/340/mar03_3/c1260

6 Research highlights: Chronic fatigue syndrome and XMRV – reasons why the BMJ fast tracked the Dutch XMRV study and critical comments about the media publicity that accompanied publication of the Science paper in October 2009 (p516)

7 Fast Track Research: Prevalence of XMRV in patients with chronic fatigue syndrome in the Netherlands: retrospective analysis of samples from an established cohort (summary of key points (p520)
Free full text: http://www.bmj.com/cgi/content/full/340/feb25_1/c1018