• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Invest In Me 2013 conference speakers announced

SOC

Senior Member
Messages
7,849
Just a thought --
Could it be as simple as building evidence that Gerada knows that good scientific evidence exists that ME/CFS is a physiological illness? While it's only a tiny little step, it's still a first step in documenting an awareness of the facts among the BPS crowd. It's one thing to claim they are unaware of evidence contrary to their theories, it's another to have to admit they know and are ignoring it.
 

JayS

Senior Member
Messages
195
I don't think their model specifically excludes the possibility; they have created plenty of wiggle room to suggest, if need be, that severe ME is something that they don't even address. The CDC has done this: 'if you have symptom X, you do not have CFS.' This is why, if a longtime CFS patient develops a serious condition that is exclusionary for a CFS diagnosis...they don't have CFS anymore.

The 'abnormal illness beliefs' model may actually exist, but, regardless...do they know? It doesn't matter. If they do, they get to say 'we were not purporting to study CFS/ME' with a straight face, and if they don't, they can rationalize their ignorance by focusing only on their model, to the exclusion of all else.

If people cared about this disease, they wouldn't get away with it, but, generally, people don't, so they get to do and say whatever they want. The one thing that stands out is that Wessely is on record criticizing the Canadian Consensus. He may have created a conflict he would have been better off without, provided one day the CCC/ICC model is taken seriously by medical science.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
From MEA: http://www.meassociation.org.uk/?p=14274

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

by Tony Britton on January 27, 2013
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 to attend the conference.

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

:)
 

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
I'd have just one question for Dr Clare Gerada at the conference: Why do UK psychiatrists continue to make non evidence based claims about CBT, GET. Specifically :

The ideas that they can lead to recovery (or at the very least improved employment outcomes)?
Or the idea that these treatments are suitable for all patients, rather than a minority.

The evidence base does not support the above two claims, yet that is how it is practised.

I'm am not part of the anti-psych brigade. I do believe that some patients will benefit (in terms of quality of life) from either CBT or GET (depending on specific cases), but these are in the minority and moreover, the treatments should be targeted towards just these individuals rather than promoted as some sort of panacea for all.
 

Enid

Senior Member
Messages
3,309
Location
UK
Well IIMe have been trying to engage mainstream medicine for years - can this Gerada (married to SW - psycho) overcome her bias - we wait to find out.

Perhaps the medics hope we are idiots and cannot see their slimey, ignorant biasnesses. Boy oh boy may Gerada and her underlings get it and listen to patients they have always doubted. Yes Gerada your psychos.
 

barbc56

Senior Member
Messages
3,657
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.

I agree 100 per cent with the above statement. How can we complain about being ignored but then also complain if someone like Dr. Gerada attends? You can't have it both ways.

I think this is a step in a positive direction and could possibly help our situation.

Calling people psychos doesn't help and is the same thing we accuse Wessely et. al. of doing to patients with me/cfs.

Barb
 

ukxmrv

Senior Member
Messages
4,413
Location
London
Do any of the people who support Dr Gerada's attendance at the conference intend to pay and attend to hear her?
 

Mark

Senior Member
Messages
5,238
Location
Sofa, UK
Do any of the people who support Dr Gerada's attendance at the conference intend to pay and attend to hear her?
I'd already paid to attend before I heard the list of speakers: this is an event I book early for, now, without having to see who's going to be there. I'm sure it will be a fascinating conference as always and an opportunity to meet some of the best ME/CFS researchers and hear about the latest developments.

I'm not really paying to hear Dr Gerada, I'm there for the biomedical research (and to meet one or two friends and make new ones of course), but I'll listen with interest to what she has to say and I'll go with an open mind about why she's there. I think it's a good thing that somebody like Dr Gerada should be present in order to be more aware of the work of some of our best researchers, and I hope she stays all day and hears something of interest that changes her perspective. I know that's what I expect to happen to me, again - there is always something valuable to be learnt at IiME.

I'd like to hear something about some of the other researchers on this thread, rather than just Dr Gerada. There are a few on the list that I haven't heard of before and know nothing about. It would be nice to look forward to the conference here by sharing information about all the other speakers as well.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
Sorry Barb, it wasn't directed at you.

I'm just curious to know how many people commenting here are paying and attending the conference.
 

peggy-sue

Senior Member
Messages
2,623
Location
Scotland
I think it's brilliant that Gerada is attending.
I hope she gets absolutely swamped with information and evidence she cannot ignore and that she turns and becomes one of our greatest champions.
Or failing that, that she is shown up for denying evidence and becomes, very publicly, completely discredited.
 

Nielk

Senior Member
Messages
6,970
This is the Agenda:

CONFERENCE PROGRAMME
Start
Presenter
Presentation
from07.45
Registration - early morning coffee/tea available
08.55
Dr Ian Gibson
Welcome to the Conference
09:00
Dr Daniel Peterson
Key Note Speech: The Mainstreaming of ME Research
09:15
Dr Andreas Kogelnik
Key Note Speech: Making ME Mainstream: Strategies for ME Research and Collaboration
10:00
Dr Rakib Rayhan
The Role of the Brain and ME
10:40
Plenary
Questions
10.45
Refreshment Break
11:05
Professor Greg Towers Retroviruses and ME
11:35
Professor Mady Hornig Pathogen Discovery in ME
12:20
Plenary
Questions
12.25
Lunch
13:15
Dr Clare Gerada
Govt NHS Reforms: Implications for long term chronic conditions such as ME – for GPs and Patients
13:45
Professor Sonya Marshall-Gradisnik
Current Knowledge of Immunological Biomarkers
14:30
Dr Amolak Bansal
Clinical Immunology and Research on B-cell Abnormalities in ME Patients
15:00
Plenary
Questions
15.05
Refreshment Break
15:25
Professor Carmen Scheibenbogen
Immunological Basis of ME
16:05
Professor Olav Mella
B-cell Depletion Therapy Using Rituximab in ME/CFS - Part I
16:35
Dr Øystein Fluge
B-cell Depletion Therapy Using Rituximab in ME/CFS - Part II
17:05
Plenary & Summary
Dr Ian Gibson - Questions
17.30
Adjourn
 

sianrecovery

Senior Member
Messages
828
Location
Manchester UK
Sounds like it will an interesting conference. I look forward to hearing back. And from experience, just because you are presenting at a conference doesn't mean you are going to listen to a word of anyone else's papers. It's perfectly possible to parachute in and out and just do your thing.
Maybe its an invitation Dr Gerada would have felt a little awkward in refusing, given the history. On balance, I think it's a politically very astute invitation from whoever decided to extend it.
Those videos really are awful.
 

natasa778

Senior Member
Messages
1,774
Isn't Dr Gerada soon to be an ex-chair of RCGP anyway?


Dr Maureen Baker has been named as the next chair of the RCGP, following her election by council members today.
Dr Baker will take over from current chair, Professor Clare Gerada, in November and won the election by 37 votes against opponent Dr Steve Mowle’s 21 votes, out of a possible 67 votes

She will take up the role of RCGP chair elect at the council meeting in June before taking over from current chair Professor Gerada in November.

http://www.pulsetoday.co.uk/news/po...next-rcgp-chair/20002930.article#.UaPMkYIU7d0