ME/CFS Grand Challenge (MEGA)

[Sasha]

I find it incredibly difficult to get behind a study which involves people who's research is directly responsible for holding back science, treatment and progress for My illness.

I genuinely think they're going to be steamrollered as flat as pancakes, Comet. I think we should be cheering this on. It's clear that the biomedical scientists are going to be in charge.

 

[Comet]

I don't think it makes any sense to withhold support from the likes of George Davey Smith just because there are some BPS hangers-on. The BPS crowd are going to be so far out of their depth in this study that they'll need a submarine. They're going to be completely and utterly irrelevant, IMO.

I can only hope that you are right about the BPS crowd. There are a lot of letters in the alphabet...

 

[Esther12]

I don't think it makes any sense to withhold support from the likes of George Davey Smith just because there are some BPS hangers-on. The BPS crowd are going to be so far out of their depth in this study that they'll need a submarine. They're going to be completely and utterly irrelevant, IMO.

I'm not sure it will be irrelevent to their careers, or their ability to further influence future research in the UK.

I'm not withholding support from GDS, but his involvement isn't enough to have me support White, Crawley and Collin.

I genuinely think they're going to be steamrollered as flat as pancakes, Comet. I think we should be cheering this on. It's clear that the biomedical scientists are going to be in charge.

I'm not seeing any steamrollering so far.

 

[Comet]

I don't think it makes any sense to withhold support from the likes of George Davey Smith just because there are some BPS hangers-on. The BPS crowd are going to be so far out of their depth in this study that they'll need a submarine. They're going to be completely and utterly irrelevant, IMO.

Not meaning to withhold support from people like George Davy Smith. It's just that... well, you know...

 

[Sasha]

Not meaning to withhold support from people like George Davy Smith. It's just that... well, you know...

I know, I know... but...

 

[Comet]

I genuinely think they're going to be steamrollered as flat as pancakes, Comet. I think we should be cheering this on. It's clear that the biomedical scientists are going to be in charge.

Not arguing with you, @Sasha. Just expressing an opinion. But we have been steam rolled, and they're not stopping. They seem to be gaining steam.

 

[Sasha]

I'm not withholding support from GDS, but his involvement isn't enough to have me support White, Crawley and Collin.

I don't think it's about supporting individuals - it's about supporting the study. And, given that GDS is in charge of it and that there's a whole bunch of bioscience talent and that it's a bioscience study, that's enough to give me confidence in it. The BPS crew are irrelevant. They'll have zero influence.

I'm not seeing any steamrollering so far.

I doubt we'll ever see it, publicly. I don't think we should expect to. But I think it's going to happen, all the same.

 

[Comet]

I know, I know... but...

You're right, but...

 

[Sasha]

Not arguing with you, @Sasha. Just expressing an opinion. But we have been steam rolled, and they're not stopping. They seem to be gaining steam.

I don't see them gaining steam - quite the reverse. They're under huge pressure with PACE now.

We've been steamrolled, for sure, but I'd like to see them try to steamroll GDS.

 

[user9876]

I genuinely think they're going to be steamrollered as flat as pancakes, Comet. I think we should be cheering this on. It's clear that the biomedical scientists are going to be in charge.

I think we should be supportive. But we should also be constructively critical particularly around the information they collect about patients and who they include and how people are found. I think patients can make a real contribution here leading to a better study.

 

[Esther12]

I don't think it's about supporting individuals - it's about supporting the study.

Hold on... I was using your language!:

I don't think it makes any sense to withhold support from the likes of George Davey Smith

I doubt we'll ever see it, publicly. I don't think we should expect to. But I think it's going to happen, all the same.

The more knowledge we get of what is going on bheind the scenes, the more I think it's often worse than what's happening in public.

We've been steamrolled, for sure, but I'd like to see them try to steamroll GDS.

GDS was a signatory to that letter complaining about Wessely receiving too much criticism. I don't think that they're going to want to steam roll him.

 

[Comet]

I think we should be supportive. But we should also be constructively critical particularly around the information they collect about patients and who they include and how people are found. I think patients can make a real contribution here leading to a better study.

Let's hope so!

 

[ronddejambe]

I genuinely think they're going to be steamrollered as flat as pancakes, Comet. I think we should be cheering this on. It's clear that the biomedical scientists are going to be in charge.

I agree!

 

[Comet]

I'd like to be all for this study, it's just that I can't figure what would benefit the BPS crowd if non-psychiatric causes are found for our disease. Why would they be involved in a study that wants to shoot down the theory upon which their careers are based?

GDS was a signatory to that letter complaining about Wessely receiving too much criticism. I don't think that they're going to want to steam roll him.

This I did not know. This is significant, IMO.

 

[Comet]

I'm not sure what to think at this point. But I know I am developing a fear of acronyms.

 

[Sasha]

I think we should be supportive. But we should also be constructively critical particularly around the information they collect about patients and who they include and how people are found. I think patients can make a real contribution here leading to a better study.

Totally agree with that.

Hold on... I was using your language!

Oops! But still, I do think that, given that GDS is in charge and has made his views on the BPS model clear, and that he's got all those bioscientists around him and the other bunch appear to be mere onlookers, we can get behind this study - with the caution that @user9876 mentions.

GDS was a signatory to that letter complaining about Wessely receiving too much criticism. I don't think that they're going to want to steam roll him.

I suspect plenty of people will have provided context on that now.

 

[ronddejambe]

I imagine they believe in their theories. So really, to them you could find something in a blood test in M.E and they'll STILL be arguing that there's also a psychosomatic element and asking why people are stigmatising those with mental illnesses by arguing so vociferously against that. Now at that stage I don't think people will take much note, but they believe they're right to a degree and only trying to help.
They're not monsters. They're wrong and they've done harm, but I imagine they believe they're genuinely doing good research.

And I agree we should be constructively critical as far as MEGA goes. They have to get this right!

 

[Sasha]

I'd like to be all for this study, it's just that I can't figure what would benefit the BPS crowd if non-psychiatric causes are found for our disease. Why would they be involved in a study that wants to shoot down the theory upon which their careers are based?

They might not want to be on it: at the meeting, they seem to have been observers at the workshop. We don't know whether they'll be involved or not, at this point.

This I did not know. This is significant, IMO.

That was in December 2012:

http://www.meassociation.org.uk/2012/12/letter-in-the-independent-on-sunday-2-december-2012/

And there's been a lot of water under the bridge then - not least, he's met a lot of biomedical scientists who know the score, including @Jonathan Edwards, I believe.

We have to bear in mind that some people can be very convincing - until other people come along with the full story. Let's not hold it against GDS that he took the complaints of some fellow academics on good faith.

 

[Esther12]

This I did not know. This is significant, IMO.

In case of interest, here it is: http://www.independent.co.uk/voices...-online-postings-2-december-2012-8373777.html

 

[Sasha]

Note also this, from 2005:

http://forums.phoenixrising.me/inde...f-caution-george-davey-smith-2005-2006.38371/

The one dissenting voice at the conference was that of George Davey Smith, Professor of Clinical Epidemiology, Department of Social Medicine, University of Bristol, who in a presentation called “The biopsychosocial approach: a note of caution” carried the torch for intellectual integrity. His contribution showed that bias can generate spurious findings and that when interventional studies to examine the efficacy of a psychosocial approach have been used, the results have been disappointing.

To quote from Davey Smith’s contribution: “Over the past 50 years many psychosocial factors have been proposed and accepted as important aetiological agents for particular diseases and then they have quietly been dropped from consideration and discussion”. The illustrations he cited included cholera, pellagra, asthma and peptic ulcer. He went on to quote Susan Sontag’s well-known dictum: “Theories that diseases are caused by mental state and can be cured by willpower are always an index of how much is not understood about the physical basis of the disease” (Illness as a metaphor. New York: Random House; 1978).

[...]

In the discussion that followed Davey Smith’s presentation, Wessely appeared to be apoplectic: “That was a powerful and uncomfortable paper. There will undoubtedly be many people, including those who one might call CFS activists, who would have loved every word you were saying. There is a popular and seductive view of medical history in which we move implicitly from unknown diseases which are thought to be psychiatric, and as we become better, brighter scientists, they are finally accepted in the pantheon of real diseases. You should remember that there is an opposite trend as well, which you didn’t mention”.

Davey Smith’s response was succinct: he believed there is a need to distinguish association from actual causation: “My main point was about disease aetiology. As a disease epidemiologist I want to get the right answers about this. In my view, susceptibility has been overplayed and exposure has been under-appreciated in social epidemiology”.

[...]

Nevertheless, and perhaps unsurprisingly, Professor Sir Michael Marmot sprang to support Wessely: “I would emphasize Simon Wessely’s point. It is easy to look back and say, ‘Gosh, how silly they were in the past to think all these silly thoughts; aren’t we clever now!’. Research has advanced beyond the examples you cite because there have been many advances in conceptualisation and measurement of psychosocial factors”, to which Davey Smith replied: “We can get more robust evidence from observational studies, but these approaches have not really been utilized in the psychosocial field”.