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ME/CFS and the Magic of the Canine Factor
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Radio item about ME/CFS

Discussion in 'General ME/CFS News' started by Sherby, Nov 1, 2010.

  1. Wildcat

    Wildcat Senior Member

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    Phil Parker said he gave a seminar on Lightning at Bart’s Hospital in May this year.

    PhilParkerLP Tweeting on 19th May 2010:

    “enjoyed presenting a seminar about the Lightning Process to St Barts Hospital today” 1:35 PM May 19th via web

    http://twitter.com/philparkerLP


    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~


    Barts is home of PD White, though the other Barts ‘CFS’ clinic which is run by Maurice Murphy (where Professor Pinching used to be the lead) seems to be the treatment centre.
  2. Min

    Min Senior Member

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  3. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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  4. Wildcat

    Wildcat Senior Member

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    From Parker's Twitter site:
    http://www.thedolectures.com/speaker...10/phil-parker


    The tickets for that gig were 1,500 each - to sleep in tents in boggy wales and hear a number of speakers telling you that do-ing stuff is good. The gig was a kind of yuppie-hippified camp in wales for eco types and architects - and new groovy capitalist thinkers and do-ers (the 'organise-yourself' guru David Allen was there speaking too).
    A kind of up market rainbow Camp.
  5. Trooper

    Trooper Senior Member

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    This seem perfecting reasonable and professional to me.

    Phoning him up too.

    At the weekend.

    What a caring bunch. ;)
  6. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    You paint a wonderful picture, Wildcat.

    Yesterday's Radio Berkshire broadcast is now up on YouTube at:

    http://www.youtube.com/watch?v=9YX3wFkDlhI
  7. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    Transcript

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

    http://www.bbc.co.uk/iplayer/episod...Living_Longer_Investing_for_your_later_years/

    Item starts 2 hours 3 mins in from start of programme and is around 12 minutes long.

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

    --------------------------------------------

    Transcript 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.


    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 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, they're 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.

    ----------------------
  8. Sasha

    Sasha Fine, thank you

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    Thanks for putting all the hard work into doing this, Suzy. It must have taken a lot of time.

    I'd forgotten that Dr Shepherd said this about the MRC. I wonder when the announcement is due.
  9. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    Thank you very much Suzy. It was actually much easier for me to read this than listen strangely this time! Usually the other way around.

    I agree, with Sasha re the Medical Research Council. I found Dr Shepherd's comment about meeting with them for biomedical research discussions very encouraging. I'm sure he's mentioned this before, but when we don't hear anything about progress for TWO years, you tend to think nothing is happening.

    If they really are going to fund biomedical research (and not 'just' XMRV) I will be v happy. I think Stephen Holgate could be behind this, at least he may have been the one to encourage a more open and transparent environment for conversation. SH was connected with Dr Kerr's CFS Research Foundation when it was up and running. Hopefully then Dr Kerr & team's work will bear fruit in the end.
  10. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    @ pictureofhealth and Sasha,

    If you go to the MRC website here: http://www.mrc.ac.uk/Ourresearch/ResearchInitiatives/CFSME/index.htm

    You can read the Notes for the "MRC CFS/ME Expert Panel" meetings for:

    1st Meeting of the CFS/ME Expert Group – 15th December 2008
    2nd Meeting of the CFS/ME Expert Group – 30th March 2009
    3rd Meeting of the CFS/ME Expert Group – 1st March 2010


    also, last November, an MRC CFS/ME Research Workshop was held. On the MRC site (at the same URL as above) you can read:

    Agenda: MRC CFS/ME Research Workshop
    List of participants of the MRC CFS/ME Research Workshop
    Note of the MRC CFS/ME Research Workshop 19-20 November 2009
    [3.1 MB PDF]

    (For PDF of the Note: http://www.mrc.ac.uk/Utilities/Documentrecord/index.htm?d=MRC006813 )

    This was a locked PDF which also contains presentation slides.


    If you prefer a text version, the text of the summary Note of the Workshop is published on my website here but does not include the presentation slides.

    http://meagenda.wordpress.com/2010/05/14/mrc-cfsme-research-workshop-note-in-text-format/

    Yes, Prof Holgate, who chairs the MRC "Expert Panel", is a member of the CFS Research Foundation research committee and has also been a collaborating author of Kerr et al gene papers.

    The most recent Note is for the panel meeting that was held on 4 June:

    Note of the MRC CFS/ME Prioritisation Meeting 4th June 2010

    Suzy
  11. Sasha

    Sasha Fine, thank you

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    Thanks, Suzy - I've seen some of this stuff and it looked promising. I've got some hope that whatever the announcement that Dr Shepherd mentioned will hold something good for us. It won't be a day too soon!
  12. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    Well, ever cynical, I'm not holding my breath :eek:)

    Suzy
  13. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    Me too Suzy. There are still an uncomfortable number of CBT/GET proponents on this MRC group I've noticed, and some of the short term and medium term research suggestions look a bit fudgy to me, on close inspection. I just want to see biomedical research full stop now. We've had it with 'management' strategies - they've had their chance and its done nothing to help patients get well and back to work. If we need 'support' we can always go & see a counsellor like any patient with any other illness. Try healing cancer with graded frigging exercise & no chemo. If Peter White had had this much influence at the beginning of the AIDS epidemic, he'd be recommending 'mirror gazing' instead of ARV's, HIV would never have been discovered and the patient population would be decimated. There must be economic issues at stake here.
  14. Wildcat

    Wildcat Senior Member

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    The MRC have been talking for years. Stephen Holgate has been talking about bioresearch for nearly three years. We are still waiting for any action, let alone any meaningful action backed up by funding from the MRC..


    Professor Stephen Holgate "warned" us patients in 2009 that it was our fault (for being horrible and not "coming together") that the UK government and researchers had not actually funded or done any bioresarch.

    Since when has it been the case that the MRC and other research funders have been influenced by the unity of patient groups? Since when has the horribleness of the patient group put off researchers? Since when has it been the case that cancer, liver, kidney or heart research was dependent on patient groups "coming together" ????


    Professor Stephen Holgate also "warned": "that the hostile approach by some patient advocates has discouraged researchers from entering the field."


    Oh us British patient advocates are so nasty and hostile that we have actually held up the progress of medical science!


    A likely story!


    Obviously the very sick patients who want ME bioresearch rather than yet more CBT/GET psycho research are the very people to blame for the MRC failing to fund any bioresearch!


    The glowing picture of future ME research that Professor Holgate painted at the 2008 Royal Society of Medicine Conference of summer 2008 was a very beautiful one, very optimistic, and gave the impression that all the state of the art medical research facilities would be at the disposal of ME bio researchers. It was a very beautiful picture but not a very believable one.


    We are not surprised though that the Medcial Research Council are still talking. Their jaws must be seriously aching by now.



    If my evaluation is wrong I am prepared to eat all of my hats (several berets and a straw boater).



    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~


    Holgate: AYME LINK, Issue 32 June 2009

    AYME (Association of Young People with ME)

    LINK, Issue 32 June 2009


    A plea to the ME/CFS community to come together

    The CFS/ME community must come together or risk fragmented research, a lack of national resources and little progress.

    The warning was made by the Medical Research Council (MRC) Strategy Board Member, Professor Stephen Holgate, at a recent two-day conference attended by 150 of the UK's top CFS/ME experts. He added that the hostile approach by some patient advocates has discouraged researchers from entering the field.

    Prof Holgate pointed out that the divisions currently in the CFS/ME field are not dissimilar to those affecting the respiratory community five years ago. However, following a determined effort to move forward as one voice, respiratory research has made huge progress.

    Prof Holgate said CFS/ME could have more funding for research, more researchers interested in the field and an increased awareness if there was a national joined-up collaborative approach.

    "The most important driver will be a national joined-up collaborative research approach involving patients, NHS, charities and the research councils", said Prof Holgate.

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