Category: Professor Findley

Transcript: BBC Radio Berkshire, Anne Diamond, ME/CFS: Shepherd, Findley, Parker

Transcript of BBC Radio Berkshire Anne Diamond Show, broadcast 11 November 2010

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

On 11 November, Radio Berkshire presenter, Anne Diamond, interviewed Dr Charles Shepherd, Medical Adviser for the ME Association and Professor Leslie Findley, Clinical Director of the National ME Centre and Centre for Fatigue Syndromes. Towards the end of the item, Duncan McLarty spoke to Phil Parker, founder of the Lightning Process.

See also previous post: http://wp.me/p5foE-3dk

Within the UK, until 18 November, you can “Listen again” to the Radio Berkshire broadcast here on BBC iPlayer. The item starts 2 hours 3 mins in from the start of programme and is around 12 minutes long.

Or listen on YouTube here: http://www.youtube.com/watch?v=9YX3wFkDlhI

This transcript has been prepared by Suzy Chapman for ME agenda. Care has been taken in the preparation and proofreading of this transcript; some errors and omissions may remain.

The Anne Diamond Show, Thursday, 11 November 2010:

Anne Diamond: Last week on the show while Esther Rantzen was standing in, we looked at the subject of ME because people diagnosed with the condition are no longer able to give blood. Now we’ve had a huge response from people with experience of the condition and because this is such a controversial area we thought it might be a good idea to get some experts on to the show to deal with some of the points that have been raised.

Dr Charles Shepherd is Medical Adviser to the ME Association and Professor Leslie Findley is Clinical Director of the National ME Centre and the Centre for Fatigue Syndromes. I spoke to them both, earlier, and I asked Charles Shepherd just what is ME and are we any closer to knowing what causes it?

Dr Charles Shepherd: Well ME stands for “Myalgic Encephalomyelitis” and in very simple terms it’s an illness which often starts with a viral infection and people then have a range of symptoms, primarily muscle symptoms, muscle fatigue and also brain symptoms, problems with memory, concentration, balance, just generally feeling unwell. And these systems – I mean these symptoms – persist for a long period of time in many of these patients; it is a very disabling and has been recognised as a neurological illness.

Anne Diamond: Yes. Professor Findley, to be absolutely clear, nowadays there’s no longer any suggestion that it’s a psychological condition, is there?

Prof Findley: Erm, no, there’s no suggestion it’s a psychological condition but psychological factors can adversely influence the symptoms and they have to be taken into account when one’s planning a total management strategy for an individual patient.

Anne Diamond: Would you agree with that, Dr Shepherd, that nowadays we don’t look upon it as a psychological condition?

Dr Charles Shepherd: Well, I thoroughly agree, you know, the Department of Health, the World Health Organisation, classifies this as a neurological illness and you know, like with many chronic disabling illnesses, psychological factors, social factors, can sometimes play a role, that’s not disputed. But it is essentially a neurological illness with other factors involved.

Anne Diamond: Now you see, since Esther was talking about this last week we’ve had an email, for instance, which says that all the research and treatment funding then has inappropriately gone to the psychiatric profession since the 1980s. What do you say to that, both of you?

Dr Charles Shepherd: Well, to a certain extent well that is true. Certainly in the UK, the vast amount of government funded research has gone in to behavioural and psychological therapies and there has been a great deal of criticism about that. Fortunately, what we now have is the Medical Research Council [MRC] setting up an expert group which I am a member of, to look into research in this illness and we have been for the past two years looking at what needs to be done in the way of biomedical research and a list of priorities in biomedical research has now been sent to the board of the MRC – they are looking at these priorities and we are expecting an announcement very shortly on this.

Anne Diamond: Professor Findley, is it true then that we’ve been wasting money – directing the money towards the psychiatric profession?

Professor Findley: We….ell! Waste is a very, is a very strong word to use. The money, I agree with Charles, could have been used perhaps more wisely, but this is a complex illness and it represents, and the MRC would state this, that it represents a group of disorders, it is not a single entity and we’re still having great trouble defining within this large group of patients the individual types of Chronic Fatigue Syndrome/ME that exist and if one takes a group of patients the symptom complex that the individuals complain of vary enormously…

Anne Diamond: And yet…?

Professor Findley: …and the NICE Guidelines recognise complex and severe Chronic Fatigue Syndrome/ME to emphasise the complexity of this, this, this illness, it is not a simple entity it’s not like some tuberculosis where you have a defined marker and a defined organism and a defined treatment.

Anne Diamond: So and Dr Shepherd, you would agree that this a range of different conditions?

Dr Charles Shepherd: Yes, and I mean this is another key point, that we have renamed and redefined this illness from ME into what’s now called “Chronic Fatigue Syndrome”, the term that the medical profession tends to use and unfortunately this has now produced, it’s rather like dumping everyone with different types of arthritis, inflammatory arthritis, osteoarthritis, infective arthritis, under one umbrella and saying that they’ve all got the same cause, the same symptoms and the same treatments and that does not apply to arthritis, it does not apply to everyone who comes under this umbrella of Chronic Fatigue/Chronic Fatigue Syndrome.

This is one of the key points the MRC is addressing the need for sub grouping people under this umbrella, finding the different causative factors that are going on and then applying appropriate different forms of management to the different types of sub groups under this umbrella.

Anne Diamond: Now, I mean, you look at the situation – for instance here in Berkshire – where our Primary Care Trusts [PCTs] are offering Cognitive Behavioural Therapy [CBT]. Is that appropriate any longer?

Dr Charles Shepherd: It’s not appropriate as a one size fits all treatment and this is our big problem with the NICE Guideline, it’s why patients object to the NICE Guideline because the NICE Guideline recommends CBT and Graded Exercise Therapy [GET] should be offered to everyone with mild to moderate ME and this is not what we feel is appropriate one size fits all treatment. Many patients find these therapies either ineffective, around about 50% with CBT and in the case of Graded Exercise treatment, if you apply this wrongly you make these patients worse. That’s why there is terrific concern and anger amongst the patient community with the NICE Guideline.

Anne Diamond: Can I move on to the…this business of the Lightning Therapy, the Lightning Process? Because it was very controversial when Esther was talking about it last week. Her daughter went through it, but some listeners were angry that we even mentioned the Lightning Process. Why is it so controversial? Professor Findley, first…

Professor Findley: Erm, that’s a very straightforward question with a very complex answer. I think the Lightning Process has a part to play in the management of some patients. It is not a specific treatment for Chronic Fatigue Syndrome/ME, it’s used to treat a whole raft of conditions. But there are some patients that can be recognised who have factors which would lend themselves – factors which are perpetuating the illness – which would lend themselves to the Lightning Process.

Now these are, in my opinion, a very small group of patients overall, but because Lightning Process practitioners are often only experienced in that one technique they apply it to anybody who visits them with an objective of getting treatment, so their patients are treated in an unselected manner and therefore this has led to all sorts of complications and dissatisfaction.

Anne Diamond: Dr Shepherd?

Dr Charles Shepherd: Well, I have this strong objection to the Lightning Process – in particular the way it’s marketed to very vulnerable groups of people with adverts which are making unsubstantiated claims about success rates.

Professor Findley: Agreed…agreed.

Anne Diamond: But it clearly is true for some and as you both seem to be agreeing that this is multi-factorial, very complex, no one patient is exactly the same as the other.

Professor Findley: Well I think I absolutely agree with this, but erm… the…and I agree with Charles’ comments on the Lightning Process – 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.

Anne Diamond: Before we run out of time, can I finally ask both of you really ‘cos a lot of people who contacted us were asking about recovery rates from ME. What can you tell us about the numbers and are indeed there any robust figures on this? Dr Shepherd, first.

Dr Charles Shepherd: Well, I wouldn’t say there were really robust figures. I think its, a lot of it is clinical judgement from individuals, you know, that see patients with this and you know, a limited amount of epidemiological research.

Where I come in is I think we probably have three groups. We have a group at one end of the spectrum who are severely effected certainly at some stage in their illness and they probably account for about 25% of the total, I mean these are people who are bed-bound, wheelchair-bound, house-bound.

We have a large group in the middle who make some degree of, I think the word here is improvement, over the course of time but do not recover but they hit a glass ceiling, 50, 60, 70% of what they were normally like and then we have a small group at the other end of the spectrum who make a much more significant degree of improvement or may even finally recover – an example there is Yvette Cooper, a former government minister. I would add that the improvement/prognosis in children/adolescents with this disease does seem to be a lot better than it is in adults.

Anne Diamond: And Professor Findley?

Professor Findley: I would, there aren’t robust figures and I think Charles is right, we would normally say that the average duration taken across the group, the average duration of this type of illness is three to five years with at least 40% of patients never getting back to previous levels of functioning and I’d agree with Charles there is the very severe group and their prognosis is appalling and they very rarely get any proper management advice.

Anne Diamond: Well that was Dr Charles Shepherd and Professor Leslie Findley speaking to me a little earlier on. It’s a very important subject isn’t it?

It’s very important that we hear a balanced argument on it. So we put some of those issues to the founder of the Lightning Process, Phil Parker. Phil’s website calls the process “A non medical tool that is tailored to help people who are stuck in their life or health”. Well BBC Radio Berkshire’s Duncan McLarty, first asked him whether he agreed that the process is only appropriate in a small fraction of ME cases.

Phil Parker: You know that sounds like scientific data but it’s not science – there’s no evidence to say that, that’s just their opinion! First thing we do is have a chat with people and we assess them as to whether this is a really useful thing for them because obviously we want to see people who we think are going to get value from this.

Duncan McLarty: But if you’re not an ME specialist how would you know if it’s appropriate?

Phil Parker: Er, well we are specialists at the Lightning Process. We know more about the Lightning Process than these people because we designed it and trained in it. So what we are looking for is, do we think these people are likely to get benefit from the stuff that we do. What we’re really interested in is how can we help these people who, who’ve got stuck, where there aren’t many solutions, is there anything we can do to help them that’s really where we’re coming from.

Anne Diamond: Well can I just say thank you very much for all your emails on the subject of ME over the last week or so. I think we’ve certainly shown that it’s a complex area with plenty of strong and sometimes conflicting views. We also asked Phil Parker whether he agreed that the process was aggressively marketed as those two experts told me.

Phil Parker: Basically our practitioners, erm, don’t make claims. What they say is, that you know our experience is, that when some people use this they can make changes. That doesn’t guarantee change. If you…you know you have a business then you want to tell people about it that doesn’t make it aggressive marketing, that’s the thing I… deny and say that all we’re doing is, say look this is something that we’ve found is very useful, have a look at it and if you want to talk to us more about it then do, if you don’t that’s fine as well. We really don’t market it aggressively at all.

Anne Diamond: Well there you are, you see, that was Phil Parker, who is the founder of the Lightning Process, and earlier on I was talking to Dr Charles Shepherd, Medical Adviser to the ME Association, and Professor Leslie Findley who’s Clinical Director of the National ME Centre and the Centre for Fatigue Syndromes.

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/

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/

Dr William Reeves, head of CDC CFS Research Program to take up new position

Dr William C Reeves, head of the CDC CFS Research Program to take up new position

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

Facebook  |  29 January 2010

Change of leadership announced for CDC’s CFS Research Program

The U.S. Centers for Disease Control and Prevention (CDC) has announced that Dr. William C. Reeves, head of the agency’s CFS Research Program, will be taking a new position within the agency effective Feb. 14, 2010 and that he will no longer lead the agency’s CFS research. Dr. Elizabeth Unger will serve as acting chief of the Chronic Viral Diseases Branch, the unit within CDC that houses the CFS Research Program. On Feb. 14, Dr. Reeves will begin an assignment as Senior Advisor for Mental Health Surveillance in the Public Health Surveillance Program Office within the CDC’s Office of Surveillance, Epidemiology, and Laboratory Services.

The CFIDS Association of America, other organizations and advocates have vocally supported new program leadership to effect a more robust research effort at CDC. This staffing change has the potential to significantly advance CFS research beyond the agency’s intramural program and to seize scientific momentum generated by recent discoveries. We are fully dedicated to making rapid progress in this new era of collaboration and discovery in CFS research.

K. Kimberly McCleary
President & CEO
The CFIDS Association of America

Comment from Mary Schweitzer via Co-Cure mailing list

I have never met Elizabeth Unger, and until her appoinment as the new head of the CDC’s program on CFS, I was familiar with her name only in relation to the CDC’s genome project on CFS.

However, I think it worth pointing out that Dr. Elizabeth Unger has mainly worked as a virologist, specializing in HPV (Human Papilloma virus).

The HPV program has been one of the few real success stories at CDC since AIDS. A generation ago, nobody knew about this virus – but once it was discovered, followed by the realization of its role in causing uterine and other cancers, the CDC did a very good job getting information out to young women. Ultimately, the goal was to develop a vaccine.

The distribution of the HPV vaccine has been controversial, but that should not concern us.

I think it will be great to have a virologist who has experience working with a disease about which little is known heading the CDC’s program. I am looking forward to seeing what Dr. Unger can accomplish.

Mary Schweitzer

As reported by Kelly, via Co-Cure mailing list

Bio of Dr. Elizabeth R. Unger

Like Dr. Suzanne Vernon now with the CFIDS Association, Dr. Elizabeth (Beth) R. Unger PhD, MD was originally doing research for the CDC in Human Papillomavirus Program which was under Dr. William C. Reeves.

A native of Pennsylvania, Dr. Elizabeth R. Unger received her bachelor’s degree in chemistry from Lebanon Valley College (Annville, PA). She received her doctorate in experimental pathology and medical degree from The University of Chicago. After completing her residency in anatomic pathology at The University of Chicago and The Milton S. Hershey Medical Center, Pennsylvania State University, she was certified by the American Board of Pathology in Anatomic Pathology.

She was a post-doctoral research fellow of the American Cancer Society and The W.W. Smith Charitable Trust in the pathology department of The M.S. Hershey Medical Center and joined the faculty of the Emory University School of Medicine as an academic surgical pathologist in 1990. While there she was involved in several studies associating EBV with various cancers.

She accepted a position at the Centers for Disease Control and Prevention in 1994 and became the Team Leader of the Human Papillomavirus (HPV) Program in the Viral Exanthems and Herpesvirus Branch of the Division of Viral and Rickettsial Diseases, National Center for Infectious Diseases.

Dr. Unger’s research interests have been in molecular diagnostics, viral oncogenesis and molecular epidemiology and she pioneered colorimetric in situ hybridization methods for detection of HPV in diagnostic samples. The HPV program utilizes a multidisciplinary team to conduct laboratory-based epidemiologic research to inform control strategies to reduce the incidence of new HPV infections as well as the major HPV-associated chronic diseases such as cervical cancer and recurrent respiratory papillomatosis. They worked with the National Cancer Institute’s Early Detection Research Network to discover and validate novel molecular markers to improve cervical cancer screening.

In 2000, she first appeared as an author on a CFS study. Chronic fatigue syndrome is not associated with expression of endogenous retroviral p15E. Gelman IH, Unger ER, Mawle AC, Nisenbaum R, Reeves WC.Mol Diagn. 2000 Jun;5(2):155-6.

Dr. Unger is a member of the College of American Pathologist’s Committee on Molecular Pathology and a founding member of the Association for Molecular Pathology. She is on the Council of the American Society for Investigative Pathology and The Histochemical Society as well as a principle scientist with the American Society of Microbiology. She has served as an advisor to the FDA and WHO on HPV testing and vaccine issues. She is on the editorial board of four journals including Technology in Cancer Research and Treatment.

Centers for Disease Control and Prevention 1600 Clifton Rd Mail Stop G41, NE
Atlanta, GA 30333.
Div. of Viral and Rickettsial Diseases
E: eru0@cdc.gov

Update at 1 February:

Kelly notes via correction on Co-Cure (31.01.10)

Dr. Unger actually began work at Emory University in 1986 and for 11 years, where she was an assistant, then associate, professor in the department of pathology and laboratory medicine at Emory University. In 1997, she joined the CDC’s staff as section chief, molecular pathology laboratory in the Viral Exanthems and Herpesvirus Branch within the National Center for Infectious Diseases.

Thread here on Cort Johnson’s Bulletin Boards:
Dr. Reeves Removed from the CDC’s CFS Research Program

Also write-up here:
Dr. Reeves Removed from the CDC’s CFS Research Program

Sunday Times: Coping with ME article, “In Gear” section, 2 Sept 07

[Note: This lightweight article is accompanied by a stock photo of an attactive young woman in a business suit yawning at her desk, not by a photograph of a middle-aged male wheelchair user or a bedbound and tube fed child.]

“If you find yourself in pain while at your desk, this handy vibrating massage ball may help.”

“Simple lifestyle adjustments can have profound effects, like avoiding stress and looking at the work-life balance,” says [Professor L J] Findley.

Sunday Times, “In Gear” supplement, Health section, page 35
2 September 2007
Coping with me

Once dismissed as “yuppie flu”, chronic fatigue syndrome (CFS) or ME (myalgic encephalopathy) is now recognised by the World Health Organisation as a neurological illness. Sufferers complain that doctors fail to diagnose it properly and the government recently issued guidelines to GPs about proper treatment of the condition, whose symptoms include debilitating fatigue, pain and problems with sleep, memory and concentration.

 

An estimated 250,000 people in Britain suffer from ME, which can affect anyone but most commonly strikes people aged 20-40. The typical trigger is a combination of a viral infection and stress, but bacterial infections can also be the cause. It can develop slowly, over months or years, and people with asthma, eczema and hayfever, or sufferers of migraines, anxiety and depression seem also to be vulnerable…

Read full article Coping with ME  here

Read Kit Bag (related product promotions)  here

Response from editor, You and Yours: ME: 30 July 2007

Today’s edition of Radio 4’s You and Yours featured a brief follow up to Monday’s broadcast about ME – an item which had been billed as “ME latest knowledge” and itself, a follow up to the programme “Leo, Rusty and ME” [Friday, 27 July]. The production team had received a large response to Monday’s programme with complaints that too much time had been given over to Lightning Process. A couple of emails were read out – one claiming Lightning Process as a “cure”, another critical of therapies, the basis for which no underlying science could be provided.  A return to the subject of ME (no details given) is being planned by You and Yours for the Autumn.

Following the Your and Yours broadcast on Monday, I raised the following points by telephone and email with the production team:

1] At the start of today’s You and Yours strand on ME, presenter Peter White introduced the illness as “Myalgic encephalitis” (which is Phil Parker’s preferred term) and not as “Myalgic encephalomyelitis” which is the term more commonly used and the term under which ME is indexed in WHO ICD-10: G93.3. Why did You and Yours researchers elect not to use the term “Myalgic encephalomyelitis”?

2] Professor Findley referred to a pilot study into the “Lightning Process” but omitted to mention that he is currently undertaking a clinical study into the Lightning Process with colleague, Gerri de Vries, the LP practitioner and occupational therapist who also contributed to the programme. Professor Findley and Ms de Vries’ professional interest and personal involvement in this LP pilot study should have been disclosed.

3] This follow up item to Friday’s broadcast “Leo, Rusty and ME” was listed as “ME latest knowledge”. Why was no-one invited onto the programme to talk specifically about biomedical research into ME and recent UK and international developments or explore the controversy over the dearth of MRC funded biomedical research into this illness? This was disappointing coverage; rather than present a balanced overview of “latest knowledge” this follow up came across as little more than a promotion for NLP and Lightning Therapy – with Ms de Vries even getting in a plug for Phil Parker’s new book.

The following response has been received, today, from You and Yours editor, Andrew Smith:

I did acknowledge on today’s programme that Monday’s discussion was unsatisfactory. I thought we did a good job in exploring the Lightning Process – which has received a fair degree of media attention in recent months and I think that focus was justified. However in dealing with the wider issues of the various treatments for the condition we palpably failed – though only due to lack of airtime. We will be returning to the subject of ME in the autumn and one of our producers may contact you during the research process. I hope you will feel that you want to help.

On your first point regarding the term we used for ME. I did ask a few minutes before transmission that we use the full title for the condition. This was inevitably hastily researched by someone who hadn’t worked on researching the original item and who didn’t realise the existence of more than one full term for ME. While we didn’t use the more commonly used term, what we broadcast was not incorrect and I think unliklely to mislead a lay audience in any material way.

On your second point, we are satisfied that Professor Findley is an objective authority on all aspects of ME. If you have evidence to the contrary we will investigate. As I understand it the research he is undertaking on the LP attracts no extra funding and is not an endorsement of LP but simply illustrates a curiosity about it. He works on various approaches to treating ME. Gerri de Vries was cast as an advocate of LP, we made this clear to listeners and they were in a position to judge accordingly.

Andrew Smith
Editor
You and Yours
BBC Radio 4

Radio 4: Leo, Rusty and ME: You and Yours follow-up, July 2007

Radio 4: Leo, Rusty and ME: You and Yours follow-up

On Monday, 23 July, The Times published an article in the Health section of Times2 called “Mum, nothing works. I can’t move”. You can read and comment on the article here

This article was a tie in with the Radio 4 programme “Leo, Rusty and ME”, produced by Leo’s BBC radio producer mum, Jane Ray, and broadcast on Friday, 27 July.

The programme was structured around clips from audio “diaries” begun by the family following the onset of Leo’s illness, two years ago. When Leo was sufficiently recovered to undertake the travelling and cope with the length of the sessions, he was persuaded to try the “Lightning Process”. According to The Times article, Leo, now 13, has returned to school part-time. We wish him all the best for a complete recovery.

On Monday, 30 July, BBC Radio 4 presented a follow-up to this programme during their regular edition of You and Yours.

Professor Leslie Findley, Essex Neurosciences Unit and a medical adviser to AfME and Gerri de Vries, a Lightning Process practitioner, took part in this follow-up item along with Leo’s mother, Jane. Dr Trish Taylor of AfME contributed via a phone link. There were no contributions from any other organisations or individuals, although we were told that the ME Association had been approached for background information.

A large proportion of the slot allocated to Monday’s follow-up was given over to extracts from the previous Radio 4 programme “Leo, Rusty and ME”, including the section where child and adolescent psychiatrist, Dr Sebastian Kraemer, is quizzing Leo during a hospital appointment and the section where Leo’s friend encourages him to try Phil Parker’s “Lightning Process”.

Towards the end of Monday’s follow-up (billed as “ME latest knowledge”) You and Yours presenter, Peter White, raised the issue that in Friday’s broadcast of “Leo, Rusty and ME”, listeners did not hear anything about any other types of treatment for ME/CFS [other than LP].

Instead of picking up on Peter White’s lead and opening out the discussion by bringing in the lack of effective treatments and the urgent need for funding for biomedical research, Professor Findley says something about there being no controlled trials and anchors the topic firmly back to LP by introducing a reference to a pilot study being undertaken into the Lightning Process. No-one else has been invited onto the programme to talk specifically about ME research into causes and treatments, recent UK and international developments or to explore the controversy over the dearth of MRC funded biomedical research, and Findley has the floor.

Having already talked about how ME can be successfully “managed”, Professor Findley goes on to talk about physical and psychological “perpetuating factors”, citing anxiety, stress, depression, problems with relationships…

In March 2007, AfME’s magazine, InterAction, ran an article on the Lightning Process [Issue 59, page 39] in which Professor Findley states that he is “…undertaking a clinical study into the [LP] process”. In his contribution to this InterAction article, Professor Findley goes on to say:

Over recent months, Gerri de Vries, an LP practitioner and occupational therapist with huge experience in fatigue syndromes, and I have been assessing individuals and offering treatment to those we consider likely to benefit from the process. Each patient has been properly assessed in advance and is being followed up by a therapist and physician. This is an open clinical study to try and provide data to argue the case for a proper clinical trial in the conventional sense. We hope to have some data to publish over the next few months.

But Professor Findley omitted to disclose, in yesterday’s broadcast, that he is overseeing this LP trial. Nor was it disclosed that his colleague, Gerri de Vries, also taking part in the programme, is not just an LP practitioner but also working on this trial with Professor Findley. Their professional interest and their personal involvement with this pilot study using Lightning Process techniques should have been transparent. This issue has been raised with the You and Yours production team.

Who is funding this pilot study and how much is it costing?

The chances are, Phil Parker won’t be forthcoming. So we will rely on Professor Findley to supply this information and we’ll report back with his responses.

In February 2007, ME agenda had emailed Phil Parker with a number of questions after spotting the following on Phil Parker’s LP website:

We are pleased to report that we are currently undertaking research, using established scientifically valid research protocols, under the scrutiny of a leading authority in the field of M.E/CFS.

We asked Mr Parker:

Who is the Principal Investigator, please?
Who is the “leading authority” in ME/CFS who is supervising this research project?
Which research criteria are being used in order to select subjects, ie. Oxford, Fukuda, Canadian?
Myalgic encephalomyelitis is indexed in the WHO [ICD] under G93.3, what condition is myalgic encephalitis?

In his response, Mr Parker told us that the “leading authority” in the field had specifically asked that the details of the project should not be fully reported until the findings were in. Mr Parker also stated that it appeared that there was such interest and bias within the field that revealing too much at this stage would cause discussion that would be inappropriate to where the project was at that time.

In response to our question about criteria he responded that the diagnostic criteria used is Fukuda and that the data set uses a range of standard tests including HADS, SF-36 and VAS. Mr Parker ends by asking us if we could we let him know why we are asking these questions?

Why should Mr Parker be apparently so uncomfortable about releasing basic information about a research study and why did Professor Findley and Ms de Vries not disclose their interest in this trial in yesterday’s broadcast?

It was noted that the illness was introduced at the start of yesterday’s You and Yours item using the term “Myalgic encephalitis” (apparently Mr Parker’s preferred term) and not as “Myalgic encephalomyelitis”, as more commonly termed, and as indexed in WHO ICD: G93.3. This point has also been raised with the production team.

Rather than present a balanced overview of “latest knowledge” this follow-up came across as little more than a promotion for NLP and the “Lightning Process”; Ms De Vries also manages to slip in a plug for Phil Parker’s new book.

If you have concerns about the coverage of ME via this programme please contact the You and Yours production team.

You can listen again to Monday’s You and Yours here

[The ME section starts around 20-25 minutes into the programme.]

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