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Royal Society of Medicine (UK) meeting on ME/CFS

Sasha

Fine, thank you
Messages
17,863
Location
UK

Countrygirl

Senior Member
Messages
5,429
Location
UK
ME/CFS: Frontiers in research, clinical practice and public perception

Wednesday 18 March 2015
Royal Society of Medicine
1 Wimpole Street
London W1G 0AE

About this event

This afternoon meeting will focus on the various medical opinions
surrounding ME/Chronic Fatigue Syndrome. We would like to thank the
Wellcome Trust for their support of this meeting. Please note that
this meeting is open to RSM Members only.

Aims: Delegates will have a rare opportunity to learn about ME/CFS
from a clinical, scientific and political perspective. They will be
exposed to some of the contested ideas that have shaped the direction
of research and services and come to a more holistic understanding of
the illness and its social context.


Objectives: Delegates will learn about:
* Controversies regarding the aetiology of ME/CFS and the possible
consequences of this for management and research.
* The clinical impact of the illness and its management in the context
of child and adolescent services
* New directions in clinical research aimed at understanding and
treating the illness
* The political aspects of ME/CFSin the UK

Agenda

2.00 pm Registration
2.30 pm Welcome and introduction
Dr Fiona Godlee, Editor, BMJ

Session one

2.35 pm Theories and controversies in ME/CFS
Dr Charles Shepherd, Medical Adviser to the ME Association
and ME sufferer
3.05 pm ME/CFS: Clinical and patient realities
Ms Anna Gregorowski, Nurse Consultant, Great Ormond
Street Hospital
3.35 pm Tea and coffee break

Session two

3.50 pm Frontiers in ME/CFS research
Dr Luis Nacul , Member of the ME/CFS Biobank team,
London School of Hygiene and Tropical Medicine
4.20 pm The politics of ME/CFS
Countess of Mar, Member of the House of Lords, All Party
Parliamentary Group on ME and Chair of Forward ME Group of
Charities
4.30 pm Current models of care – do they work?
Dr Gabrielle Murphy, Clinical Lead for ME/CFS Service,
Department of Infection and Immunology, Royal Free Hospital
4.50 pm Panel discussion
5.20 pm Closing remarks
Dr Fiona Godlee
5.30 pm Completion of evaluation forms and close of meeting

Organiser’s details

For information on this event, contact
Carly Belchak
Tel: 020 7290 2984
Fax: 020 7290 2989
Email: open@…

I hope it will be possible for us to receive feedback from this meeting.

Apart from Dr Charles Shepherd and Lady Mar, the remaining speakers do not fill me with any degree of confidence.
 

eafw

Senior Member
Messages
936
Location
UK
Charles, do you know if anyone from the UK charities or research groups is attending BACME next week ? Would be interesting to know what goes on there and compare and contrast the two groups.
 

Roy S

former DC ME/CFS lobbyist
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1,376
Location
Illinois, USA
The politics of ME/CFS
Countess of Mar, Member of the House of Lords, All Party Parliamentary Group on ME and Chair of Forward ME Group of Charities
 
I would like to have a transcript of her remarks.
 
Messages
13,774
Good luck Charles. I hope that you're able to spend some time on the specifics of why patients are angry with the way PACE has been spun, the importance of informed consent, and the harm done by manipulation and the mispresentation of criticism of BPS approaches. It's important not to let them get away with this stuff.
 
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Messages
13,774
PS: Would be fun to slag off some of the BMJ's coverage in front of Godlee.

Their claim that PACE showed CBT and GET cured "only" 30% of patients, followed by their pretence that patient anger at the way PACE results were spun was driven by anti-psychiatry did a lot of harm.

It would be risky to bring this up, but @maxwhd recently pointed out that their example of a harassing e-mail was actually taken from a website, with the 'threatening' part being a quote of Bob Dylan's pacifist protest song 'Masters of War' which had the reference removed in the BMJ.

The website is from Maartens Maartensz, who used to post here, who I didn't have much respect for and who (I think) got banned [I thought wrongly], and he does say he thinks Wessely is 'an evident Dr Mengele in human form'.

B9CbrZUIAAEd-kt.jpg:large
 
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charles shepherd

Senior Member
Messages
2,239
Charles, do you know if anyone from the UK charities or research groups is attending BACME next week ? Would be interesting to know what goes on there and compare and contrast the two groups.
Charles, do you know if anyone from the UK charities or research groups is attending BACME next week ? Would be interesting to know what goes on there and compare and contrast the two groups.

No - I don't know anyone who is going to the BACME conference

I am not a member of BACME - so will not be going
 

xrunner

Senior Member
Messages
843
Location
Surrey
Apart from Dr Charles Shepherd and Lady Mar, the remaining speakers do not fill me with any degree of confidence.
Dr Murphy was one of the drs that initially diagnosed me. I remember her as a caring, thorough and understanding dr.
She prescribed all sorts of tests to rule out any obvious illness and eventually suggested trying cbt and graded exercise (and informally a couple of alternative treatments as well) but only if I wanted to, which I did.

The dr, she suggested for cbt and the rest was also quite good and made it clear to me that what I had was immune related and not just in my head.

Incidentally, at the time, both mentioned that a possible cause of symptoms in ME was an immune/cytokines dysregulation. That was eight years before this recent Lipkin's paper.
 

Cheshire

Senior Member
Messages
1,129
Dr Gabrielle Murphy seems to have a classical BPS view of ME.
http://www.amazon.co.uk/Chronic-Fatigue-Syndrome-Myalgic-Encephalomyelitis/dp/1855755378

You can look inside the book. To explain we don't need to know what triggered our illness, she takes the example of a broken leg. Ignoring the circumstances of the accident doesn't prevent the physician from curing the leg... Wessely has his own car metaphor, where knowing the kind of car that caused the accident is pointless. I recently came across a bird throwing a stone metaphor on a thread...
BS
 

Snowdrop

Rebel without a biscuit
Messages
2,933
To explain we don't need to know what triggered our illness, she takes the example of a broken leg. Ignoring the circumstances of the accident doesn't prevent the physician from curing the leg... Wessely has his own car metaphor, where knowing the kind of car that caused the accident is pointless. I recently came across a bird throwing a stone metaphor on a thread...

From Rational Wiki: Analogies and metaphors can be very useful to explain things to people and often play an important part in learning. However, because of the prevalence of false analogies they're much less useful in making arguments.

Specious argument from people with power and authority thinking their P&A protects them from reasonable scrutiny. :rolleyes:

Nigel Hawkes seems to gone off the radar since 2012. He was (at some point) the director of an organisation called 'straight statistics'.
Go figure. :eek: :rolleyes:
 

eafw

Senior Member
Messages
936
Location
UK
No - I don't know anyone who is going to the BACME conference

I am not a member of BACME - so will not be going

OK, was hoping someone from one of the charities or support groups would be there - you don't need to be a member to attend - and these people inform the practitioners that many of us have to deal with so it is useful to know what they're up to.

Hopefully your RSM conference is productive and gets good press anyway.
 

A.B.

Senior Member
Messages
3,780
Speaking of analogies, I think comparing the PACE trial to homeopathy is a pretty good one. Any treatment can look effective if poor research methods are applied. In the PACE they even intentionally introduced bias in two ways (by telling patients the treatment was highly effective, and by training them to change their views which will undoubtedly affect questionnaire answers).
 

Aurator

Senior Member
Messages
625
Yes, from what I can see in the preview, the book is a classic platitude-filled attempt to heap the burden of responsibility for remaining ill on to the patient; an approach that has done much damage over the years.
To explain we don't need to know what triggered our illness, she takes the example of a broken leg.
BS
That overworked and specious broken leg analogy, clearly designed to pour cold water on aetiological investigations (including funded biomedical research) wants putting down once and for all. When you have a broken leg the doctor treating you doesn't need to see the cause because he can see what is wrong with you; with ME he has no idea of the cause and no firm idea even of what is wrong with you.
Dr Murphy was one of the drs that initially diagnosed me. I remember her as a caring, thorough and understanding dr.
She prescribed all sorts of tests to rule out any obvious illness and eventually suggested trying cbt and graded exercise (and informally a couple of alternative treatments as well) but only if I wanted to, which I did.

The dr, she suggested for cbt and the rest was also quite good and made it clear to me that what I had was immune related and not just in my head.

Incidentally, at the time, both mentioned that a possible cause of symptoms in ME was an immune/cytokines dysregulation. That was eight years before this recent Lipkin's paper.
This gives me hope that Dr Murphy may have more oil in her can than the book preview allows me to suppose.
Icome to a more holistic understanding of
the illness and its social context
.
Now those two underlined words do not augur well for the triumph of sanity over cozenage.
 

xrunner

Senior Member
Messages
843
Location
Surrey
This gives me hope that Dr Murphy may have more oil in her can than the book preview allows me to suppose.
I had two lengthy consultations with her. What I wrote is only based on what she told me during those consults.
Of course she wasn't able to help in terms of suggesting treatments other than those that are legitimate under the NHS umbrella. She wouldn't last 5min longer in her job if she did things any other way.
 
Messages
5,238
Location
Sofa, UK
The website is from Maartens Maartensz, who used to post here, who I didn't have respect for and who (I think) got banned, and he does say he thinks Wessely is 'an evident Dr Mengele in human form'.
Just to clarify, in fairness to him, that Maarten was not banned from Phoenix Rising. He left of his own accord. I think all of his posts here were then deleted at his request, although this is not a policy we would follow in similar circumstances today. Forum moderation has changed a lot since those days - much for the better, in my opinion.

As a general note it's best not to speculate about whether/why people may have been banned from, or left, Phoenix Rising. They are free, of course, to comment on this themselves on their own blogs or elsewhere, but it is our policy never to comment on banned members and the reasons for their ban, out of fairness to them, because they are no longer able to answer here to anything we might say. Similarly we would not confirm to other members that a member has been banned...but I'm making an exception in this case to clarify that Maarten was not banned and I would ask that members avoid similar speculation in future to avoid putting us in a difficult position.
 

Aurator

Senior Member
Messages
625
I had two lengthy consultations with her. What I wrote is only based on what she told me during those consults.
Of course she wasn't able to help in terms of suggesting treatments other than those that are legitimate under the NHS umbrella. She wouldn't last 5min longer in her job if she did things any other way.
Listening to her presentation here (particularly the last half) is reassuring as well as very informative. She clearly has much she can contribute to research and potentially the treatment of CFS (or post-infectious fatigue, as she calls it near the end). If only the government/NICE/NHS would give her the resources to get on with it. Instead she's in the position of a heart surgeon having to perform operations armed only with the tools that come out of a Christmas cracker.