Invest in ME defends invitation to Dr Clare Gerada to attend their annual conference

The chairman of the Royal College of GPs, Dr Clare Gerada, has accepted an invitation to speak at this year’s annual international conference of Invest in ME (IiME).

The charity say Dr Gerada – wife of Professor Sir Simon Wessely – has been invited to the London event on May 31 because it is important to have people in influential positions such as chair of the Royal College in the room.

In a statement placed on their website this weekend, IiME say:

Almost every patient in UK (and probably elsewhere) will be seen by their GP when they get ME. Often they will be diagnosed by a GP – before, if lucky, being referred to a consultant.

Whether they are referred to a consultant or not (and there are very, very few ME consultants in the UK) then the GP is likely still to play a large part in the continuing care and management of the ME patient.

So GPs will play an important role and we need to ensure that GPs are aware of the biomedical research being carried out into ME.

It is entirely fitting that we attempt to encourage GPs to attend and become more knowledgeable about ME and the biomedical research which is underway or planned.

This biomedical research conference would be the first occasion that the chair of one of the major establishment organisations has agreed to attend so it is a good thing and shows that biomedical ME is becoming part of mainstream medicine instead of being left at the fringes and being ignored.

We cannot try to change things if we ignore existing healthcare structures and GPs are the first port of call for all patients.

IiME add that the chair of the Royal College of GPs has been invited to explain the effects on GPs and their patients of NHS reforms into the way long term conditions, particularly ME, are managed.

The conference will have “Infection, Immunity and Myalgic Encephalomyelitis – Mainstreaming ME Research” as its theme. Booking for the event in Westminster opened a few days ago.

The statement continues:

We hope that all in the audience are able to use this opportunity wisely and politely to move the ME cause forward.

It is in nobody’s interests for patients continually to fight with healthcare professionals and resort to criticism and insults, any more than it is for patients to be denigrated and marginalised when all they wish for is to get better. There has to be a better way to ensure that we do not lose another generation to this disease.

Other conference speakers lined up so far, under the chairmanship of former Labour MP Dr Ian Gibson, are:

* Mady Hornig, associate professor at the Center for Infection and Immunity at Columbia University, New York

* Neuroimmunologist Professor Sonya Marshall–Gradisnik from Griffith University, Auatralia

* Carmen Scheibenbogen, professor of immunology at Berlin Charité, Germany

• Professor Olav Mella and Dr Øystein Fluge from Bergen University Hospital, Norway, who have raised the tantalising possibility that the cancer drug, ritixumab, may have a role in treating certain types of ME/CFS

* Dr Andreas Kogelnik, founding director of the US–based Open Medicine Institute which is intensely promoting translational research into ME/CFS

* Consultant immunologist Dr Amolak Bansal, clinical lead of the ME/CFS service run by the Epsom and St Helier University Hospitals NHS Trust in Surrey.

To book seats for the conference, click HERE

To read IiME’s full statement, click HERE

13 thoughts on “Invest in ME defends invitation to Dr Clare Gerada to attend their annual conference”

  1. GPs in the UK work to the NICE guidelines. These guidelines don’t recognise the neurological disease ME, they only recognise fatiguing disorders under the title CFS/ME. Although the UK Government is meant to adhere to the WHO classification system, without alteration. This classification system does not endorse the NICE guidelines. Therefore no NHS GP can diagnose ME or treat ME, and there are no systems in place to do so.

    It is a fabulous idea to have the head of any group attend, but it is hard to understand what Clare Gerada could speak about as she is only a GP under a system that wrongly rejects ME as a diagnostic category. It is well known that she does not recognise the WHO classified neuroimmune disease ME herself and is a proponent of CBT and GET, which have no scientific evidence base. As she is not a scientists and holds beliefs that directly oppose the scientific literature on ME, what would she be able to contribute to the conference Invest claim is for ME?

    It appears that Invest want those attending the conference, which will include scientists, doctors, patients, careers, and doctor/scientist patients, to discuss with Gerada the situation with ME, but considering her outright opposition to neurological ME and her beliefs in CBT and GET, and the format of the event, this would be impossible. The floor has been given to Gerada and patients interests have been abandoned. Inviting her to attend is one thing, but giving her a platform to promote GET and CBT mythology is quite another.

    Invest themselves have on many occasions criticised the flawed beliefs of the Wessely school of thought, so why are they suggesting that others cannot raise legitimate complaints that they have given a platform to those who deny the scientific evidence of neurological ME? Are they suggesting that everything they have complained about to NICE and others was incorrect?

    The conference should be a scientific conference, not a conference for the biomedical beliefs of those who don’t practice science.

  2. May I suggest, JoT, that you read IiME’s statement and then respond to what it says rather than what you fear it contains.

    If we are to make progress, we must communicate with the medical establishment; persuading the chairman of the Royal College of GP to attend IiME’s conference is a positive and constructive development. Well done IiME.

    I agree that CBT and GET do not treat ME (they may help some sufferers, though not by treating disease) but we will never change attitudes by shouting our opposition at people who disagree with us. If we can all take hold of an olive branch and engage in civilised discussion, so much the better.

    1. May I suggest Soloman that you read what I have said as it is relevant to the issue and clearly I have read the statement.

      Firstly as you will notice I said it was fabulous that the chair of the RCGPs is attending. Secondly you should note my issue is with the chair speaking at the conference. It is for those without scientific evidence to support their beliefs to offer an olive branch and begin to embrace the science. Others have no room to move.

  3. The list of researchers is mouthwatering! To be honest, I understand JoT’s *and* Soloman’s points of view and probably agree with both. I tend to think the olive branch should come from the side of Dr Gerada & co though, not the biomedical side. And while I may have some reservation about her appearance, I know for sure that IiME have our best interests at heart. We can only hope that Dr G learns something new from the other speakers and uses that information in a positive way.

    1. Biomedical is a term that has no specific meaning. It can mean medical research. Psychiatric research is form of medical research. Therefore Gerada would not be out of place speaking at a biomedical conference, but would if the conference was a scientific conference. However as the conference is meant to be about ME then as Gerada is someone who does not recognise the WHO neurological disease and only the UK created entity CFS/ME, which incorporates fatigue of a psychological origin and idiopathic chronic fatigue, then it is impossible to see what she would say that is relevant to ME patients? No services are provided in the UK specifically for neurological ME, they are based on CFS/ME being fatigue of a psychological origin and idiopathic chronic fatigue.

  4. understand your feelings & argument JoT but I agree with Soloman.
    The ‘branch’ *should* come from the other side, no question but it will be a very long time before that happens, if ever & i’m interested in results… asap ….since all the while we are arguing about who makes peace first… we all continue suffering while they are perfectly comfortable.
    The only way to change minds is by involving them… not just inviting them to ‘watch &learn’, which by any person in her position would be considered patronising.
    She and her husband, & White/Sharpe…all of them… are mistaken, in my view,…. but the past/current approach is only creating further entrenchment on both sides which is getting us nowhere.
    And although, i repeat, i completely understand the ‘why should the people who’ve been harmed be the ones to make peace’ POV… I feel it, it sticks in the craw…

    BUT I care much more about minds being opened to the fact & then changed, & getting better treatment….. than i do about my pride.

    I just hope she will be treated with respect by attendees while she is there… thats what worries me… i can just see the headline… ‘crazy patients threaten heroic but hated scientist’s wife’.
    8-(

    1. So you believe that after 25 years they are going to change their minds and denounce their own behaviour? Why would you think that?

      We need scientists investigating ME. The entrenched beliefs only exist on their side. The scientific evidence has disproven those beliefs. It is those who reject the scientific evidence who are getting us nowhere.

      I still see nothing that Gerada could talk about in relation to ME.

  5. I beleive that anybody who is interested in helping the ME/CFS cause is to be accepted with open arms.

    The general tone of the above article does however seem to relate to a rosy starry eyed picture of all-engaging GP’s in the UK. It does not take account of the “doubting and indeed scathing GP ME/CFS sceptics” who are totally oblivious to the WHO Guidelines, DWP & NHS listing of ME/CFS in the UK.

    Speaking as someone who has 26 years of personal experience of this, I hope that Dr Gerada and those in attendance may consider addressing this ongoing situation.

    PS: It should be an interesting conversation after the above meeting at the dinner table with Professor Sir Simon Wessely & Dr Gerada?

  6. Trust is always going to be an issue between ME patients and health professionals who have dismissed the illness as being purely psychological. Reading the above comments, most doctors would note the lack of patient trust which is something that must be earned.

    Within a democracy and within the context of debate it isn’t unreasonable to speak to people whose views you do not share and to be polite to them even if you dislike what they stand for. Disagreement with another person’s view is not harassment and constructive criticism is a positive force for change. The conduct of ME patients will be under scrutiny, but so will the conduct of their guests.

    I’m not sure there is anything to lose from this for ME sufferers who have pretty much lost everything, although from the point of view of posterity, it would be embarrasssing for the medical establishment if they fail to turn this opportunity into something useful for patients.

  7. JoT, Am well aware of Dr Gerada’s stance and well aware of lack of services for PWME, having had Ramsay defined ME for 30 years now. I think my use of biomedical is obvious from the context. I just want progress. The proof will be in the pudding. Maybe nothing will change. Or maybe Gerada will surprise us.

    1. I realise why you think that biomedical has a specific meaning, but in reality it does not and psychiatric research is also biomedical. The conference if for ME should be a scientific conference. We don’t need beliefs dragging this out and preventing scientific research for another 25 years.

  8. There is more potential for beneficial progress from attempting to change minds than from pulling up the drawbridge and hurling insults at the besieging forces.
    Our constructive approach may not bear fruit, but it’s better than the unproductive, unthinking alternative.

    1. I am not aware of any insult, from any person, anywhere. Could you indicate where you believe insults have been made and on which site?

      By having a person who doesn’t recognise the neurological disease ME and who supports the study of only fatiguing disorders, talk at conference, is not allowing for minds to be changed. Instead, they should be there to listen, especially as Gerada is not a scientist. However, regardless what a person thinks or believes, this shouldn’t be substituted for the scientific evidence that proves beyond a responsible doubt that ME is, as classified by the WHO, a discreet neurological disease.

      It would be more constructive to therefore have the ministers in charge of the NHS, MRC and NICE to be present. And for them to instruct their agencies that they can no longer ignore the scientific evidence.

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