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Invest In Me 2013 conference speakers announced

Discussion in 'General ME/CFS News' started by justy, Jan 23, 2013.

  1. justy

    justy Senior Member

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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.
    taniaaust1, SOC, merylg and 3 others like this.
  2. Enid

    Enid Senior Member

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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.
    Bob and justy like this.
  3. justy

    justy Senior Member

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    I wonder what she will bring. There can be no more denial.
  4. Sasha

    Sasha Fine, thank you

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    I'm pleased to see Fluge & Mella & Marshall-Granisnik on the bill, especially. Looking forward to seeing the full line-up.
    merylg, Enid and justy like this.
  5. In Vitro Infidelium

    In Vitro Infidelium Guest

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    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
    Firestormm and barbc56 like this.
  6. Valentijn

    Valentijn Activity Level: 3

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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.
    sianrecovery, Shell, alex3619 and 9 others like this.
  7. snowathlete

    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.
    barbc56 likes this.
  8. justy

    justy Senior Member

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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.
    Valentijn likes this.
  9. barbc56

    barbc56 Senior Member

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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
  10. self

    self

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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.
  11. barbc56

    barbc56 Senior Member

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    Self. Welcome to the board.
  12. ukxmrv

    ukxmrv Senior Member

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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?
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  13. Esther12

    Esther12 Senior Member

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    Maybe she'll say sorry?
  14. barbc56

    barbc56 Senior Member

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    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
  15. barbc56

    barbc56 Senior Member

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

    ETA I can't find the videos on YouTube
  16. Valentijn

    Valentijn Activity Level: 3

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    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:
    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.
  17. taniaaust1

    taniaaust1 Senior Member

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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.
  18. justy

    justy Senior Member

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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.
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  19. maryb

    maryb iherb code TAK122

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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.
    Valentijn and justy like this.
  20. Firestormm

    Firestormm Senior Member

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