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Invest In Me 2013 conference speakers announced

justy

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8th Invest in ME conference – Friday 31st May 2013 - speakers announced.
The speakers will be:

Associate Professor Mady HornigCenter for Infection and Immunity (CII),
Columbia University Mailman School of Public Health
New York, USA

Professor Sonya Marshall-Gradisnik
School of Medical Sciences, Griffith University
Australia

Dr Carmen Scheibenbogen
Professor for Immunology and Deputy Chair
Institute of Medical Immunology
Berlin Charité, Germany

Dr Clare Gerada
Chair Royal College of GPs

Professor Olav Mella
Bergen University Hospital, Norway

Dr Øystein Fluge
Bergen University Hospital, Norway

Dr Andreas Kogelnik
Director of the Open Medicine Institute,
USA

Dr Amolak Bansal
Consultant Clinical Immunology and Immunopathology
Epsom and St Helier University Hospitals NSH Trust
Surrey, UK

And two more to be announced. The conference will be chaired by Dr Ian Gibson.
http://www.investinme.org/IiME Conference 2013/IIMEC8 Agenda.htm#CONFERENCE__PROGRAMME

Interesting to see Dr Clare Gerada in the list – she is Simon Wesley’s wife. It doesn’t specify what she will be speaking about. I think it’s a good thing that she will be there.

Times they are a changin’!
All the best, Justy.
 

Enid

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Thanks Justy - particulary impressed this year (not they have never not) the bringing together of researchers to exchange their findings for a whole day before - great stuff). Clare Gerada (wife SW) might even be educated more.

Tis a strange thing in life UK to have to wait for people like this (and all the psychos) to catch up.
 

justy

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I wonder what she will bring. There can be no more denial.
 
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I wonder what she will bring. There can be no more denial.
Dr Clare Gerada is the Chair of the Council of the Royal College General Practitioners http://www.rcgp.org.uk/about-us/governance-and-constitution/leadership-team.aspx amongst the Chair's other roles http://www.rcgp.org.uk/about-us/governance-and-constitution/council.aspx they are charged with representing the RCGP publicly.

Most medical Charities would welcome the presence of the RCGP Chair at their conferences as a means of establishing/maintaining dialogue with the RCGP - irrespective of the particular interests of the individual who holds the post, or of who they just happend to be married to.

(not addressing you Justy but the issue has come up before )- I find it a bit creepy that in 2013, that a woman who holds a position of of prominence entirely on her own merit, should be identified in her fulfilment of the position, on the basis of who her (male) domestic partner is. The important thing for IiME is to establish a working relationship with the RCGP that lasts far beyond the incumbancy of any of the current RCGP officers - being snide about a current officer whoever they are married to, is hardly likely to endear the RCGP to a patient group that is associated with the snideness.

I'd hope that Gerada would speak about how primary care services can better support M.E/CFS patients, about how the RCGP can improve the situation and, that she would listen to comment and criticisms about the inadeqacies of primary care for M.E/CFS patients in the UK. Asking her to be responsible for psychiatric modalities is to miss the significance of her presence at the IiME conference.

IVI
 
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I find it a bit creepy that in 2013, that a woman who holds a position of of prominence entirely on her own merit, should be identified in her fulfilment of the position, on the basis of who her (male) domestic partner is.

She's supported Wessely's psychological CFS work quite a bit. She stars in an unforgettable series of videos regarding how to "treat" CFS patients, which is rather disturbing once the hilarity wears off. She also wrote a letter essentially opposing the Scots using the CCC:
The introduction presents a very negative picture of the illness as neurological and permanent. This does not apply to the vast majority of people seen in medical practice with chronic fatigue syndrome and is likely to lead to alarm and therapeutic nihilism.

Not only are the Canadian criteria marginal and unused in research they are in places odd. For example, they list ataxia, muscle weakness, and fasciculation as common symptoms of this illness.
However, rather than discuss the differential diagnosis based on the symptoms the chapter moves straight into investigations and specialist referrals. There is no consideration given that the fact that by far the commonest differential diagnosis is with depression and anxiety.
This section moves into child protection and concludes that graded exercise and CBT are ‘controversial treatments’. These are the treatments for which are the most evidence supported by systematic reviews and meta-analysis and clearly advocating the NICE guidance. Statements like this remove this document from the area of scientific medicine.
The consensus approach to this condition which is acceptance of the problem and collaborative rehabilitation using graded increases in activity and cognitive behavioural techniques does not emerge from this document whereas lots of non-evidence base approaches such as various drug treatments for symptoms do. This is unhelpful and potentially harmful for patients.

Let's see. CFS is not neurological, and it's easy to make it go away. Telling people CFS is long-term and/or neurological will interfere with curing them. Investigations are pointless. Most people with CFS are probably just depressed or anxious (let's ignore that this criteria won't lump them in in the first place). CBT and GET are the only acceptable treatment. Stay away from pacing or drugs and supplements used to manage symptoms.

I think the label "Mrs Simon Wessely" fits quite well, based on her own statements and attempts to influence government policy regarding CFS, as they are virtually a mirror image of his own.
 

snowathlete

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I think it is relevant to point out and remember that someone is married to someone else and to accept that it is likely to carry an influence. But to see what that person says. They certainly should not be judged by another person's words.

I grew up with two parents who worked in the same field, they generally held the same proffesional views. Mind you that is just my one experience and doesnt mean every couple is like that necesarily.
 

justy

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Valentijin makes some very good points.
And it is for these reasons that i am glad she will be a speaker at the conference. I hope this means we are all moving on, and that the RCGP is going to start taking M.E more seriously.
 

barbc56

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I think we should give her a break and see what she has to say and stop using guilt by association nor judge her by her past quotations which could be taken out of context for all I know but hopefully they have not.

I am genuinely curious about what she has to say at this point in time. Don't know if I will like it but that is to be determined.

I am glad to see Mella and Fluge and hope someone asks them about doctor's prescribing Rituximab. Especially in light of them asking that this not happen. There are two trials being undertaken.

All in all, I think this might be a step in the right direction.

Barb
 
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Please forgive me if I let of a bit of steam here.
It is beyond me how a group who claim to want to raise money for biomedical research into ME can have a woman who advocates CBT speak at their conference. While we, are after more than 20 years still scratching around for money for research she has been diverting funding from biochemical research into a psychological treatment for the illness. Her ideas have caused a great deal of suffering and stress by convincing GPs that we the patients know nothing about our illness, and when we should or shouldn't excersise. I was not listened to by my GP for more than 20 years (Ive had ME 28 years) she never wanted to discuss the horrendous neurological symptoms and constantly tried to get me do do CBT. I never understood how a seemingly intelligent person could act so stupidly and arrogantly. I now of course know that this approach was recommended to GPs by Clare Gerada and her elk. Her record speaks for itself she needs no help from relatives. I sincerely hope that if she is at this conference she is questioned in detail about her beliefs and their effect on GPs treatment of long term and severe ME patients. We should demand an apology for the harm her psychological model of ME has caused. We, the patients know when the illness is far too serious to entertain a psychological cause. That is why we become so angry and some of us may even become unreasonable. How strange it is that these people who claim to be so good at psychology cant understand our hurt and anger after not being listened to for all these years, and so they continue, now at an invest in ME conference. I, to my amazement have recently read a 1992 research paper by a well known group of psychiatrists stating that association with self help organisations is associated with poor outcome. They are actually concluding that we ME patients who have been forced to seek support from online groups etc (as we get little support from anywhere else), are perpetuating our illness through seeking help from others who might understand. So its not bright or moral people we're up against here. We the patients must start to demand respect from these ridiculous amoral people who take their bad science and laugh at us all the way to the bank, while some of us are literally dying. I sincerely hope that Dr Gerada is not going to be paid for this appearance. I think that would leave the invest in ME conference with absolutely no credibility at all. Sorry that I wrote so much.
 

ukxmrv

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I was just wondering if the people who want to listen to Dr Clare Gerada or feel that they don't know what she will say/does think have seen the videos that were produced to educate UK GP's and feel that she will be open to other viewpoints and education about ME and CFS?
 

barbc56

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I was just wondering if the people who want to listen to Dr Clare Gerada or feel that they don't know what she will say/does think have seen the videos that were produced to educate UK GP's and feel that she will be open to other viewpoints and education about ME and CFS?

I haven't seen the videos and I don't necessarily want to. I don't want to "judge her". Yet!!!;)

As I said in a previous post, I want to hear what she says today or rather Saturday.

Can someone point me to the videos?

Thanks in advance.

Barb
 

barbc56

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She's supported Wessely's psychological CFS work quite a bit. She stars in an unforgettable series of videos regarding how to "treat" CFS patients, which is rather disturbing once the hilarity wears off. She also wrote a letter essentially opposing the Scots using the CCC:
Let's see. CFS is not neurological, and it's easy to make it go away. Telling people CFS is long-term and/or neurological will interfere with curing them. Investigations are pointless. Most people with CFS are probably just depressed or anxious (let's ignore that this criteria won't lump them in in the first place). CBT and GET are the only acceptable treatment. Stay away from pacing or drugs and supplements used to manage symptoms.

I think the label "Mrs Simon Wessely" fits quite well, based on her own statements and attempts to influence government policy regarding CFS, as they are virtually a mirror image of his own.

Val, would you mind citing the above quotes. Thanks.

ETA I can't find the videos on YouTube
 
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Val, would you mind citing the above quotes. Thanks.

ETA I can't find the videos on YouTube

The link to the letter is in the word "letter" :p But here's the full link again: http://www.cathcartmesupportgroup.org.uk/resources/ClareGeradaLETTER.pdf

The videos are discussed here at http://forums.phoenixrising.me/inde...-on-how-to-deal-with-cfs-patients.3079/page-2 . To quote Frank from that thread, the videos are at:
PART 1:
PART 2:
PART 3:
PART 4:
I think we should give her a break and see what she has to say and stop using guilt by association nor judge her by her past quotations which could be taken out of context for all I know but hopefully they have not.

The letter was written very recently. The date appears to be sometime in 2010, but it was certainly 2009 or later since that's the date of the document she was responding to. Far from ancient history.
 

taniaaust1

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I dont at all trust her and could almost bet that she's speaking at this conference just so the audience dont hear just the non psych side of things. She would want the audience to know that ME/CFS is "said" to often be treatable by GET and CBT. I think she's tthere for the RCGP to balance things in a way to make sure the psych views of this illness are coming into the conference too.

I do hope Im wrong and she isnt there to bring up about GET and CBT (I bet she will mention those in a positive way in whatever she says).

I believe the likihood of her saying sorry for the harm of the whole psych thing.. is about as likely as the sky raining cows.
 

justy

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Hi all, i think i am guilty of bringing this up, so i would like to clarify what i think. I HAVE seen the videos, and am horrified by them -everytime i watch them i am extremely angry and distressed. I do not recognise myself or my illness in any of them. I acknowledge that Dr Clare Gerada is one of those who is advocating these ridiculous views and harmful treatments for PWME/CFS.

However, i cannot imagine that the people behind Invest in ME do not know what they are doing. Things are moving on, Fluge and Mellas research has opened many peoples eyes. I'm not naive enough to think she (Dr Gerada) is suddenly going to change all her views, but i do hope that whatever she says at the conference, the research presented by the biomedical researchers will be there for her to see - she cannot sit with her eyes and ears closed.

I personally believe that at some point in time there will be a change in the attitude of Gp's towards this illness and the training they receive, and the tretamnents they give. In order for this to happen we need to have a dialogue with them. I am not interested in retaliation, i am interested in moving forwards constructively.

All the best, Justy.
 

maryb

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Ditto Justy - I hate these videos they make my blood boil. In no way do they represent the real symptoms we have, just shocking to a degree unimaginable that GP's have been taught in this way, is it any wonder we get short shrift from them? I just hope the conference doesn't give her a platform to put CBT and GET in a positive light.
 

Firestormm

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Facebook page 25 January 2013 one hour ago:


Iime Charity


Tony - we value all of the great support we have from all of our supporters such as yourself.
So the trustees wish to provide this message back quickly to you – although the charity will write something on this and publish it later.

Let’s be frank.

It would be easy, every year, for the charity to continue to keep doing the same thing – to keep the status quo, sit on the fence and take donations and do and say nothing as some charities do.

But we can’t- we have to try new initiatives.

The ethos of this charity, and all working with and for the charity, does not change.

We firmly believe that biomedical research is the only way to resolve this disease. But we also need to educate – one of our main objectives since we started.

Many people spend much time writing to ministers and officials, from the establishment – and nothing happens, nobody listens.

Ironically the charity was yesterday criticized by representatives from one organisation for inviting Dr Gerada. Yet that same organisation seems to have been involved in recent work which involves an ongoing email dialogue with Professor Wessely – isn’t that hypocrisy? It is, of course, easy for some just to criticize – and offer nothing as an alternative.

We invited the chair of the Royal College of GPs – not anyone’s wife.

We invited the chair of the RCGP to speak about the effects of the government’s healthcare changes on the NHS and especially GPs and their treatment/management of long term chronic illnesses such as ME.

GPs interact, and diagnose ME patients.

These coalition government reforms will affect everyone. It is important that we can discuss how primary care services need to support ME patients. It is important for GPs to know of the research.

As one enlightened commentator wrote on one forum – [IVI ;)]

“Most medical Charities would welcome the presence of the RCGP Chair at their conferences as a means of establishing/maintaining dialogue with the RCGP - irrespective of the particular interests of the individual who holds the post, or of who they just happened to be married to.”

This is the point.

We feel we need to look at the bigger picture.

Dr Gerada’s term as chair of RCGP ends in a year. Another person will take over that position in due course. Hopefully future IiME conferences can look forward to more participation from these organizations which affect ME patients and their families.

Our theme for the conference is Mainstreaming ME Research. To achieve that we need to ensure that the results from biomedical research actually reach healthcare professionals, such as GPs.

The charity has spent an enormous amount of time attempting to establish proper examinations and research, discussing with NHS officials.

We need to influence existing organizations – treatment and support should be free for ME patients within our NHS – not at the mercy of businesses and others who wish to make money.

Thanks to the great support and teamwork we have, together, affected how the MRC and others now view at ME and established biomedical research into ME at a major university.

We hope people will also see the rest of the conference programme – and acknowledge the wealth of biomedical research which is being presented from the major initiatives currently going on with ME research.

The charity is also, alone, organizing a major research meeting prior to the conference - http://www.investinme.org/IIME-Newslet-1301-07.htm

We are attempting to change things using the few resources we have – yet with the backing of fantastic supporters who also want to make change.

So we hope supporters can be assured of our motives – and our resolve.

Thanks again for all your support.