de Meirleir's involvement in 'catastrophisation' studies

[lansbergen]

I think the Church should be left out of it. It has helped me in bad times, a lot.

If it helped you, that is fine but I can not shut my eyes for the crimes that have been committed in the name of god.

Can't you see the psychs as false prophets ?

 

[MeSci]

I think the Church should be left out of it. It has helped me in bad times, a lot.

No one was knocking all churches, @rosie26 . (I was rather surprised when I did a quick internet search for 'church' as the hits almost all defined it as a Christian church, whereas I think of it more according to my Oxford dictionary's 3rd definition "organisation, clergy and other officers, of a religious society or corporation...")

There are numerous religious and pseudo-religious organisations that call themselves churches, for example the 'Church of Scientology', and I don't think any of us was thinking about the Christian church.

I'm glad yours has helped you.

 

[Snow Leopard]

You haven't proved that a decision makers' maleness/gender is causing worse decisions. The one thing I do recall from the research is that female GPs were less sympathetic.

This is getting way off topic, but how would I prove such a thing unless someone was willing to fund a study on it?

The sympathy of physicians itself does not necessarily prove anything unless deeper questions are asked - the medical establishment is more or less controlled by men and this is something that is only very slowly changing (women are now starting to reach equality in medical school). Those women who are practicing have been selected by men and play by the rules set by men.

There are demonstrated gender biases in medical practice, there are gender biases in science, there are gender biases in academia, why should I think that CFS is any different in susceptibility of bias?

I'm not trying to create an argument, I'm just suggesting that you look at this a little deeper before concluding anything.

 

[JoanDublin]

I've really found this thread very useful, veering as it does here and there into little gems of insight. I came across this little paper from 2009 which I found really useful (hope it wasn't posted already! If it was blame the fog )

http://bjp.rcpsych.org/content/195/1/3.long

In it it challenges the role of the biopsychosocial model and indeed it asks the very relevant question about priorities. Who prioritises which part? What emphasis is placed on the bio as opposed to the psych as opposed to the social? An interesting little read.

It also provides a good basis for challenging the 'doctor subjective' determinations of the causation and 'maintenance' of ME CFS.

 

[Snow Leopard]

I do have reservations, nevertheless, about the case that Hooper presents for there being a well documented 'disease called ME'. My understanding is that there are likely to be many different problems that will fall under 'ME'. Treating all of these as the same is actually the root of the problem. The most fundamental error (of several) made by the designers of PACE was to assume that you could usefully study one treatment applied to people with a wide range of problems, as if they all had 'the same disease'.

To me, there were two fundamental errors. The first is as you say, the assumption that if it works for a few people, then it must work for all. The PACE study if done properly could have led to data (or the very least, hypotheses) determining who would benefit from such therapies and who does not, saving much time and resources of the medical system.

The second is that there were no placebo controls and no objective evidence of improvement, so the results could simply be a matter of shifting perception, rather than an actual improvement in functioning. When I challenged them in the literature, they replied along the lines of 'oh, patients don't care about blood results, they care about subjective reports of fatigue'. Of course blood tests wasn't what I was referring to when I mentioned objective results - I was referring to actigraphy, performance on neuropsychological tests etc. I once again challenged them in a published commentary, emphasising the need of objective measurements to claim reduction of disability for non-pharmacological therapies due to the absence of a valid double blinded controlled trial. I know I am just one of many who has been stressing the importance of this. Naturally, those who I'd most like to take note have simply ignored such suggestions.

 

[alex3619]

The concept of a scientist discussion forum has come up many times. From about 1999 to date I have been on an email based discussion list, though it went quiet the last seven years or so, as I think we all moved to forums as primary discussion. There was brief talk a few years back of a scientist only forum being established, I think by Cort.

I think scientists need to get more into debate, including things published in other areas. I think poor science has an influence creep, and if its allowed in one place it spreads and stains others. I also think that brainstorming, and discussion of ideas, can be very useful. I am of two minds about general community involvement.

Three reasons for excluding the community are that scientists can be left to debate without being swamped in patient commentary. The second is that patients will not be at risk of confusing speculative debate with substantive debate. The third is that sensitive information might be revealed, which might keep the debate more open. I am sure I could come up with a lot more reasons.

On the other side there are strong reasons for more inclusive and open forums. This is where science needs to go. So a science debate forum that included patients would be good.

Then there are hybrid models. These might be pushing the capacity of forum software though. The old email system I was a part of was invitation only: scientists, medical professionals (not just doctors) and invited advocates. Another idea is to have a divided forum. Science section is read only except for registered researchers, but there is a commentary section. Or perhaps this can be done with linked threads, such that posting in the main thread is very strict, but general commentary can occur in the linked thread.

Just some ideas for people to think about.

 

[MeSci]

The old email system I was a part of was invitation only: scientists, medical professionals (not just doctors) and invited advocates.

How did they define 'scientist'?

 

[Sasha]

It's possible to have private threads on this forum - it requires a moderator to set them up and to give access to named individuals. I don't know whether there's a maximum number of participants.

That's another option if a closed thread is wanted. However, @Jonathan Edwards seems to be getting benefit from patients chipping in about symptoms, as well as the more biologically-minded of us being able to contribute. Of course, being a patient doesn't mean that one isn't a scientist - there are clearly plenty of scientist PWMEs here.

 

[alex3619]

How did they define 'scientist'?

Very broadly. The main screening mechanism was community invitation. I probably should not say more on an open post. I can say a little more on a private message. So I will start a conversation with you @MeSci.

 

[Jonathan Edwards]

I came across this little paper from 2009 which I found really useful (hope it wasn't posted already! If it was blame the fog )

http://bjp.rcpsych.org/content/195/1/3.long

In it it challenges the role of the biopsychosocial model and indeed it asks the very relevant question about priorities. Who prioritises which part? What emphasis is placed on the bio as opposed to the psych as opposed to the social? An interesting little read.

Another gem - really very nicely written. It becomes clear that biopsychosocial is an empty-headed muddle. And at least one psychiatrist thinks it is a dead duck.

 

[Jonathan Edwards]

Three reasons for excluding the community are that scientists can be left to debate without being swamped in patient commentary. The second is that patients will not be at risk of confusing speculative debate with substantive debate. The third is that sensitive information might be revealed, which might keep the debate more open. I am sure I could come up with a lot more reasons.

On the other side there are strong reasons for more inclusive and open forums. This is where science needs to go. So a science debate forum that included patients would be good.

I think the potential disadvantages of involving anyone who wants to join are unimportant and easily managed. I have contributed to several fora/forums. Invitation forums always fold after a while. Forums with 'pro' membership to post unvetted and 'guest' membership for 'non-professionals' are the worst. They are always set up to entrench a party line. Open forums seem to work perfectly well. Some moderation is needed but that is not hard.

The biggest problem is that scientists think they can do their job without having to debate. Most of them hate debating. Since science is all about knocking down hypotheses that don't fit debate should be the MAIN activity in science. If it was we would move forward much faster. But most people in science are really not very keen on having their ideas knocked down - i.e. they do not really want to know the right answer. But there are a few exceptions.

To my mind PR is a perfectly good place to have scientific debate. If not that many professional scientists want to say anything we can always say it for them by quoting their papers and arguing the case - as happens on PR all the time. A few will be taking a sneaky view of a few threads without letting on. I see no particular reason why PR should not invite scientists to share a thread on their work - perhaps for a ten day period if they do not have time for longer. Or there could be a call out for questions for a particular scientist with a moderator choosing the most salient ones in advance and the scientist could be invited to comment. It would be good to have at least some free exchange thereafter. Maybe if a few well chosen scientists show they are interested in engaging the others will get envious and want to have their turn!

 

[Sasha]

II see no particular reason why PR should not invite scientists to share a thread on their work - perhaps for a ten day period if they do not have time for longer. Or there could be a call out for questions for a particular scientist with a moderator choosing the most salient ones in advance and the scientist could be invited to comment. It would be good to have at least some free exchange thereafter. Maybe if a few well chosen scientists show they are interested in engaging the others will get envious and want to have their turn!

That's a really good idea (well, two really good ideas). A time-limited thing would be a really good way to get more scientists interested without feeling that they have to commit forever.

We've done at least one Q&A interview before, with questions gathered in advance via an open call to forum members, notably with you (by me, in fact!):

http://phoenixrising.me/archives/18701

 

[Jonathan Edwards]

That's a really good idea (well, two really good ideas). A time-limited thing would be a really good way to get more scientists interested without feeling that they have to commit forever.

We've done at least one Q&A interview before, with questions gathered in advance via an open call to forum members, notably with you (by me, in fact!):

http://phoenixrising.me/archives/18701

So you did!

 

[Sasha]

So you did!

Fundraising/crowdfunding groups are using Q&As with their scientists to keep attention on themselves, such as geneticist Ron Davis's CFS Research Research Center and Jen Brea's Canary in a Coalmine Documentary (she invited patients' questions for you, of course, and is doing so for her other scientist interviewees). It's a great way of generating engagement and making sure that scientists are addressing what is at the heart of the matter for patients.

This seems an excellent thing to me, not just for ME but for any disease.

 

[alex3619]

I see no reason why we cannot invite scientists here. They do not have to accept.

I have on occasion contacted scientists privately whose work was being discussed here, once to congratulate them on a great paper even though I was not convinced by their stand (it was a great paper, the problems I had were to do with the topic not the paper).

 

[NK17]

I like the term 'the Church of BPS'. Needs to be used more often IMO, ditto 'somatopsychic' (psychological/psychiatric problems caused by physical illness, in contrast to 'psychosomatic' and all its synonyms).

I agree with the sentiment and underlying truth in your last paragraph, but it's a bit too negative for me and risks encouraging despair. We haven't lost everything - just a lot. We still have our fighting spirit, our personalities, our knowledge (when we can drag it out of our foggy brains), and a lot more besides.

Didn't mean to sound desperate, just realistic @MeSci. How can I not be realistic? Who is going to give me back 30 years of my life? Who is going to make sure that the younger generation of ME patients will finally be listened to, taken care of and be medically and appropriately treated?
There!s a good portion of PWME whit more than one case of this plague in the family.
The tiME is NOW, tiME to act up, tiME to intelligently give the last kick to the many walls which have surrounded us. The very first one to be dismantled is the double shackle of CBT and GET .

 

[A.B.]

I see no reason why we cannot invite scientists here.

I would be happy to see this happening. Do you think that a new section would be useful? The discussion with Jonathan Edwards has taken place in various threads, and has often been decidedly off topic. Not that I mind, but it might be good if there was a place set up for this kind of discussion.

 

[MeSci]

Didn't mean to sound desperate, just realistic @MeSci. How can I not be realistic? Who is going to give me back 30 years of my life?

I'm with you on the rest of your message, but thinking of all those lost years is really, seriously depressing, and I have to avoid it. As soon as it pops into my mind I have to tell it to s*d off. It's too horrible.

OTOH we are alive and most of us are not on the verge of death, or living in a war zone with our loved ones being massacred around us, we have had the chance of some education, most of us have homes, running water, sanitation, and don't live under a brutal dictatorship, etc., etc. And we have Phoenix Rising!

I just can't risk dwelling on the negatives - and there are plenty. It would be hard to retain my (almost) irrepressible optimism and motivation if I allowed myself to think about it. It nearly killed me once, and it has killed some. It's partly about self-preservation.

 

[Bob]

Since science is all about knocking down hypotheses that don't fit debate should be the MAIN activity in science.

You have no idea how refreshing it is to read that, Jonathan! It's become clear to us on Phoenix Rising, that many researchers* in the field of CFS/ME have exactly the opposite approach to their research. i.e. their 'science' is all about protecting their interests no matter what, and knocking down any data that is inconvenient to their (questionable) favoured hypotheses! (*I'm referring to the bio-psycho-social research, of course.)

 

[Bob]

To me, there were two fundamental errors. The first is as you say, the assumption that if it works for a few people, then it must work for all. The PACE study if done properly could have led to data (or the very least, hypotheses) determining who would benefit from such therapies and who does not, saving much time and resources of the medical system.

Yep, there was absolutely no attempt to define subgroups in the PACE trial, but instead, the focus was on investigating the broadest category of fatigued patients using the Oxford CFS criteria. But the treatments were designed purely to treat and 'reverse' psychological and behavioural disorders, so one wonders why they are investigating patients with a biomedical illness in the first place.

The second is that there were no placebo controls and no objective evidence of improvement, so the results could simply be a matter of shifting perception, rather than an actual improvement in functioning. When I challenged them in the literature, they replied along the lines of 'oh, patients don't care about blood results, they care about subjective reports of fatigue'. Of course blood tests wasn't what I was referring to when I mentioned objective results - I was referring to actigraphy, performance on neuropsychological tests etc.

Another thing they said in their responses, re the use of subjective questionnaires, is that patients should be trusted to make assessments of their own health. Such a statement either displays incredible ignorance re the nature of the research, or a highly developed sense of irony. Considering that CBT, for the PACE trial, was designed solely to treat maladaptive cognition, it means that the premise of the trial was precisely that patients cannot be trusted to assess their own health, and that their 'faulty' thinking is pathological and should be treated. It's interesting that there was no way of telling whether the patients' beliefs were accurate when a patient reported an improvement; Patients' beliefs were just assumed to be accurate at the end of the trial (esp when reporting an improvement), whereas they were assumed to be maladaptive at the beginning of the trial. (Of course, if the CBT didn't work, then the patients' beliefs are still believed to be maladaptive, by those who promote the one model of illness for all CFS/ME patients.)