MEGA research for M.E./CFS: White & Crawley listed as involved

Research 1st

Severe ME, POTS & MCAS.
Messages
762
Likes
2,540
No, "Mady Hornig, MD, MA, is Associate Professor of Epidemiology and Director of Translational Research in the Jerome L. and Dawn Greene Infectious Disease Laboratory at the Mailman School of Public Health, Columbia University. A physician-scientist, she is widely recognized for her animal model and clinical research on the role of microbial, immune, and toxicologic factors in neuropsychiatric disorders..."
https://www.mailman.columbia.edu/people/our-faculty/mh2092
.
Nearly right. She's is a psychiatrist and a neuroimmunologist & epidemiologist. :thumbsup:
''Hi I'm Mady Hornig a psychiatrist who also a neuroimmunologist and epidimiologist''
Source: Reddit, r/Science., Chronic Fatigue Science AMA Series
https://www.reddit.com/r/science/comments/2y4ph4/science_ama_series_im_professor_mady_hornig_at/
 
Messages
62
Likes
428
People don't always practice what their qualification implies in. Esther Crawley is a typical example. She clearly doesn't belong in the biomedical world but the psychiatric. For years, her studies have been behavioural, non-biological and pubished in psychosomatic journals etc. In practice, she is not a biomedical researcher, so that's what defines her, not her once upon a time qualification. It's the biomedical/psychiatric practices in researchers that's clearly at issue, not necessarily their qualification.

People are sick to the back teeth of psychiatric practices hindering biomedical progress or harming sufferers. Psychiatric practices have no part in any ME studies given the years the've had to prove their use, the lack of any possibility of any likely relief to people's suffering and given that there are now so many potentially fruitful biomedical avenues where answers could be found.

Why is my question. Why the insistance on psychiatric based researchers, particularly one not trusted by clearly a vast number of ME sufferers. It seem Action for M.E. have avoided the question.

This whole situation, including the funding Action for M.E. have been involved with for White and Crawley and their support for PACE does make one wonder whether the MEGA insistance for psychiatrists is perhaps due to friendships between them and/or that funding is being secured by one of them. It may be worth asking the questions because if there's nothing to hide, they should be able to give straight answers. It would clarify things for everyone. So far, everything is hidden and that's causing a lot of public concern and opinions which may or may not be correct but people rightly have concerns over the inclusion of researchers many simply do not trust.
 

Yogi

Senior Member
Messages
1,132
Likes
6,879
Hi Dr Shepherd

Thanks for your communication. Sorry to hear about the abusive emails that you are getting. That is unacceptable.

Hopefully we should be able to have a robust constructive discussion on PR.

You said regarding counter petition that it is not a good idea. I think all options should remain on the table if communication from the CMRC is not immediately improved and if communication doesn't achieve anything.

Clearly the original petition is a very bad idea given all the issues described in the MEGA threads!

Can that original petition be removed until these issues are all clarified as it is quite deceptive to gather support for MEGA in its current state?

As has been said we are grateful for you coming on to here to explain things but surely as the patient representative that is AFME's duty which they are neglecting to fulfill?

@charles shepherd I appreciate you are very busy and may have missed this but I was wondering if you could respond to the question regarding the original petition? Thanks
 

Esther12

Senior Member
Messages
13,774
Likes
28,359
Whether someone is a psychiatrist or not doesn't matter. Whether they're competent and trustworthy does.

We've had to deal with a lot of rubbish psychiatrists, but complaining about a researcher's profession rather than their behaviour as an individual, is not a good look and will make people assume you're being unreasonable. In this case, the fact that so much of the concern is about Crawley, makes it clear that patients' concern is not just about people's backgrounds and training.
 
Messages
62
Likes
428
Esther12. Apologies if you took my comment that way. It's not a complaint about psychiatry but a complaint about how psychiatry has been applied to ME, which is a biological condition and so innappropriate unless there's a comorbid psychiatric condition. So for that reason, it is my firm view that psychiatry has no place in the research of ME. No offence to the profession as a whole was intended. Hopefully this clarifies my point.
 

Esther12

Senior Member
Messages
13,774
Likes
28,359
Esther12. Apologies if you took my comment that way. It's not a complaint about psychiatry but a complaint about how psychiatry has been applied to ME, which is a biological condition and so innappropriate unless there's a comorbid psychiatric condition. So for that reason, it is my firm view that psychiatry has no place in the research of ME. No offence to the profession as a whole was intended. Hopefully this clarifies my point.
No problem - sorry if it sounded like I was having a go. I was mainly posting in response to the Q& A, and then your post may have just fit in to my concerns.

I don't think one can say that 'psychiatry' has no place in the research of ME. 'Psychiatry' can include a pretty wide range of things, some of which may be useful for researching ME. I really think it's best to focus on the problems with how some individual researchers have behaved, and push to raise standards that way, rather than argue that no-one from an entire field could make a worthwhile contribution.

In practical terms, unless they had a history of speaking out about things like the PACE trial, I probably would be suspicious of someone coming to research ME from UK psychiatry... but I think it's worth playing down those broad concerns which can easily seem (and be) unreasonable.
 

JES

Senior Member
Messages
1,164
Likes
2,712
I don't think one can say that 'psychiatry' has no place in the research of ME. 'Psychiatry' can include a pretty wide range of things, some of which may be useful for researching ME. I really think it's best to focus on the problems with how some individual researchers have behaved, and push to raise standards that way, rather than argue that no-one from an entire field could make a worthwhile contribution.
I agree, we have to remember that a big contribution to CFS/ME research has come e.g. from Jay Goldstein, who was a psychiatrist and wrote the book Betrayal by the Brain. His theory about CFS/ME and disrupted blood flow or hypoperfusion in the brain and the treatment with various vasodilators was at least 30 years ahead of its time. Only very recently has interest in these things re-emerged with Fluge/Mella experimenting with nitric oxide donors etc. If there were people like Goldstein involved with the MEGA study, I don't think anyone here would object to this.
 
Messages
62
Likes
428
I understand the issue. I know they're not comparable by a long shot and that's the point but Mady Hornig and Esther Crawly are both qualified in epidemiology. I'd jump at the chance of having Mady invoved but very much oppose Crawley having any involvement. The difference is in how they treat medicine. Crawley pushes behavioral therapies like GET and CBT, whereas Mady works on underlying biomedical abnormalities. Both very different approaches.
So how would you proposed to make such a distinction?
 

Esther12

Senior Member
Messages
13,774
Likes
28,359
So how would you proposed to make such a distinction?
Focussing on the specific reasons for concern with the individual researchers work. Patients raising concerns about researchers in this way is pretty unusual, and there are already a lot of prejudices about ME patients amongst the research community, so there's good reason for us to be cautious in the way we do things.
 

thegodofpleasure

Player in a Greek Tragedy
Messages
205
Likes
403
Location
Matlock, Derbyshire, Uk
@charles shepherd may not be able to discuss why the involvement of White, Crawley and other dubious psych lobby team members.

He may not even be at liberty to criticize the PACE trial and highlight the fact that these folks are not in to apologize or even recognizing that PACE was a complete flop, a fraud and a complete waste of taxpayers money.

However involving the PACE authors to a biomedical study and strongly encouraging patients to endorse it through a petition tells me that the british psych lobby still wants a say in the design of the study and choice of cohort, and perhaps in priming the biomedical researchers on the nature of the disease, which is very, very concerning.

Moreover, the patients are still perceived as being vexatious when asking the tough questions and I believe we are witnessing people from our community protecting White and his colleagues.

It is very concerning to me.
Exactly. That's why so many people were appalled that the MEA signed up to the CMRC, together with their quasi gagging order rules of membership.
The MEA therefore lack the ability to properly represent their membership while ever they remain part of that tainted organisation.
Every day that @charles shepherd fails to state the blindingly obvious and speak out robustly against this nonsense is another day lost and is a further erosion of his credibility as a patient representative.

We aren't naive children who will be told what to think and do.

If Dr Shepherd wonders why so many people who aren't members of his organisation are commenting on the MEA Facebook page, it's because most of them have graduated beyond M.E. kindergarten and now have the knowledge to see through the ineptitude, the politics and the lack of incisive action, and to therefore understand the science and what really needs to be done.
 
Messages
62
Likes
428
Patients raising concerns about researchers in this way is pretty unusual
I don't see why, when there's clearly an issue, that one should not try and tackle that issue just because it's not the norm. Would you say the same for ME and GET?
Why are people scared of telling it how it is and tackling it head on?
As for
prejudices about ME patients amongst the research community
, what prejudices and from where? If you refer to those by the researchers who are criticised by sufferers, then that's understandable. As for other researchers, I can see no reason why they would have prejudice.
 
Messages
841
Likes
2,982
The least MEA could do is hand out sticking plasters to sooth patient's heads from all the brick walls we have to bang them against.

Here is why the psycho quacks are involved... it's quite simple really...

They are co-authors of the largest public funded research into CFS/ME to date.

As such, they are the foremost British experts in treating ME/CFS available, and their insights should prove invaluable yada yada.

PACE lives on and is influencing policy as strongly as ever.

End of.

Ps, they also have the benefit of attracting funding like flies to horse dung.
 

Ysabelle-S

Highly Vexatious
Messages
524
Likes
3,901
On the subject of psychiatry, there are psychiatrists who've seen ME patients and identified the illness as not being psychiatric. I seem to recall at least one switching to prescribing anti-virals for their patients, and getting some positive results. I've no doubt some of them could also identify the trauma ME sufferers have endured at the hands of other psychiatrists. But the BPS crowd are beyond the pale.
 
Messages
841
Likes
2,982
On the subject of psychiatry, there are psychiatrists who've seen ME patients and identified the illness as not being psychiatric. I seem to recall at least one switching to prescribing anti-virals for their patients, and getting some positive results. I've no doubt some of them could also identify the trauma ME sufferers have endured at the hands of other psychiatrists. But the BPS crowd are beyond the pale.
I myself had the fortune of seeing one on the NHS so hats off to her... sad the other four or five I saw just wanted to pump me full of increased doses of SSRIs.
 

Esther12

Senior Member
Messages
13,774
Likes
28,359
I don't see why, when there's clearly an issue, that one should not try and tackle that issue just because it's not the norm. Would you say the same for ME and GET?
Why are people scared of telling it how it is and tackling it head on?
...
As for , what prejudices and from where? If you refer to those by the researchers who are criticised by sufferers, then that's understandable. As for other researchers, I can see no reason why they would have prejudice.
In the UK research community people like Wessely, White and Crawley are trusted. Their smears of patients have spread, and it's been going on for a long time now.

I'm not saying that we should not try to tackle this issue, or tell it like it is, but I am saying that there are good reasons for being particularly cautious in how we do so.
 

Yogi

Senior Member
Messages
1,132
Likes
6,879
Here are defenders of Sir Simon Wessely getting the Sense about Science award for bravery against the "harassment" by Countess of Mar, Prof Hooper and Dr Weir.

Quick Quiz: How many of the BPS school and how many in the CMRC/MEGA team can you spot in this letter?

I am so confident of this MEGA project and so glad that our ME charities are now looking after their patients interests with their close involvement in it.



http://www.independent.co.uk/voices...-online-postings-2-december-2012-8373777.html


Chronic Fatigue Syndrome/ME is a debilitating condition affecting some 1 per cent of the UK population (“ME: bitterest row yet in a long saga”, 25 November). We believe this serious illness needs improved treatments and care, and that research is central to making this happen.

However, researchers in the field have been the target of a campaign to undermine their work and professional credibility. This harassment risks undermining research in the field, preventing the development of new treatments and discouraging specialist clinicians from entering the field. We fear that this may have resulted in patients not receiving the best treatments or care – staying ill for longer and not being able to live their life to its full potential.

So it is with sadness that we read in The Independent on Sundayreports of false allegations made against Simon Wessely - one of the few UK clinicians with a specialist interest in treating CFS/ME and someone who has done pioneering research in the field. Ironically, it was because of accusations like this that Professor Wessely received the award in the first place.

Professor Peter White, Professor of Psychological Medicine, Queen Mary University of London

Professor Michael Sharpe, Professor of Psychological Medicine, University of Oxford

Dr Esther Crawley, Reader in Child Health, University of Bristol

Professor Stephen Holgate CBE, MRC Clinical Professor of Immunopharmacology, University of Southampton

Professor Rona Moss-Morris, Head of Health Psychology, King’s College London

Dr Charlotte Feinmann, Reader , UCL

Professor Hugo Critchley, Chair in Psychiatry, Brighton and Sussex Medical School

Dr Brian Angus, Reader in Infectious Diseases, Nuffield Department of Medicine, University of oxford

Dr Steven Reid, Clinical Director for Psychological Medicine, Central and North West London NHS Foundation Trust

Professor Patrick Doherty, Professor of Rehabilitation, York St John University

Professor Paul Little, Professor of Primary Care Research, University of Southampton

Dr Maurice Murphy, HIV Consultant, Barts Health NHS Trust

Professor Tim Peto, Consultant in Infectious Diseases and General Medicine, Nuffield Department of Medicine, University of Oxford

Professor Sir Mansel Aylward, Chair, Public Health Wales, Cardiff University

Dr Alastair Miller, Consultant Physician, Royal Liverpool University Hospital

Professor Diane Cox, Professor of Occupational Therapy, University of Cumbria

Professor Jonathan Sterne, Professor of Medical Statistics and Epidemiology, University of Bristol

Dr Margaret May, Reader in Medical Statistics, University of Bristol

Professor George Davey-Smith, Professor of Clinical Epidemiology, University of Bristol

Dr Jade Thai, Senior Research Fellow, University of Bristol

Dr Gabrielle Murphy, Clinical Lead Physician, Fatigue Service, Royal Free London NHS Foundation Trust

Dr Hazel O'Dowd, Consultant Clinical Psychologist and CFS/ME Team Leader, Frenchay Hospital Bristol

Dr Brian Marien, Director, Positive Health

Professor Willie Hamilton, Professor of Primary Care Diagnostics, University of Exeter

Dr Selwyn Richards, Consultant Rheumatologist, Poole Hospital NHS Trust

Professor Alison Wearden, Professor of Health Psychology, University of Manchester

Professor Trudie Chalder, Department of Psychological Medicine, King’s College London.
 

TiredSam

The wise nematode hibernates
Messages
2,677
Likes
21,245
Location
Germany
This harassment risks undermining research in the field, preventing the development of new treatments and discouraging specialist clinicians from entering the field.
Heard that somewhere before. Only in the context of objections to the BPS brigade though, happily. Did I mention that somewhere today?

Dr Zaher Nahle's No Spin Zone slides

In answer to your question, I make it 5:

Professor Peter White
Dr Esther Crawley
Professor Stephen Holgate
Professor Paul Little
Professor George Davey-Smith


Funny how none of them got scared off in the following 4 years, even though they must have been aware of what they're up against militant patient-wise for all that time (Although maybe fear did finally get the better of Peter White and that's why he resigned?). It's obviously their less courageous colleages they're worried about.

So who are the potential scaredy-cats? Of the people listed on the petition, if we remove those mentioned above because they are obviously battle-hardened and have a skin thick enough to ignore anything coming from patients (and I think we can remove Sonya Chowdhury for the same reason), we are left with:

Prof Chris Ponting, University of Edinburgh;
Prof Colin Smith, University of Brighton;
Prof Caroline Relton, University of Bristol;
Tony Bartlett, Somalogic;
Dr Rick Dunn, University of Birmingham;
Prof Julia Newton, University of Newcastle;
Prof Andrew Morris, University of Edinburgh;
Prof David Ford, SwanseaUniversity;
Prof Paul Moss, University of Birmingham;
Prof Jim Horne, LoughboroughUniversity;
Prof Maria Fitzgerald, UniversityCollegeLondon;

So which of these are we not allowed to mention the war to?