de Meirleir's involvement in 'catastrophisation' studies

[Dolphin]

And in the ME/CFS research field, I don't notice any difference in terms of gender in terms of who writes psychobabble/patient-blaming stuff/similar and who doesn't.

Yes and who are the leaders of those research groups and who is in charge of handing out the funding?

Please try to look at this in the big picture...

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.

In my opinion, people with ME/CFS have enough issues they could be deal with directly rather than trying to influence the gender breakdown of decision-makers in medicine esp., as I say, we have no idea it would make any difference (and could even make things worse). [And similarly psychobabble and patient-blaming seems just as likely to come from female researchers/clinicians].

 

[Ren]

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.

In my opinion, people with ME/CFS have enough issues they could be deal with directly than trying to influence the gender breakdown of decision-makers in medicine esp. as I say we have no idea it would make any difference (and could even make things worse).

Well I think it's part of trying to understand why things are so screwed up. I'd like to understand why my life was destroyed. My impression was that the roots of the behavioral theory were from certain men. And so it's not blaming contemporary men per se, it's just trying to understand the culture of power and its evolution.

Regarding contemporary whathaveyou, I also wonder if men will be more influential in breaking the cycle. If for whatever reason men are more likely to buck the system?

If the psych people are going to throw their crap theories at me though, I as an individual have a right to question their motivation. Nobody else in the whole world has to care, but I still have a right to question why person x,y,z has had a right to destroy my life.

-----------------

EDIT: Didn't want to break the flow of the thread so will just add thoughts here, though they're in response to comments below:

I don't think that women (as a group) are just going to be more positive toward ME/CFS patients. It could actually be the opposite.

I suspect there's a culture of power and that whoever wants to be part of that power toes the company line. The motivations for toeing the line may be changing/evolving (from those who invented the line), but we're still stuck with this company line, and that's ultimately what has to change--the message.

I think it's okay to wonder (to theorize) about motivations. I think grad students are going to write papers about all of this one day. (Maybe some already are.) I think people are going to look back and ask, How did that happen? Why did it go on for so long?

And I think that when we (humans) have clearer answers to these questions, we might have a better shot at this not happening again. Or at least not happening with the same severity, scale, length.

I don't think gender (or class or origin) has to be ad hominen. Maybe if the subject matter were corrugated cardboard, it wouldn't be relevant. But this is historically rooted social policy, and this is the biopsychosocial school.

Since certain researchers and the patient community have such vastly different views, I think sociologists have a responsibility to ask hard questions - to compare the social experiences/standing/origin/self-identity of those who created the behavioral theory, those who maintain the behavioral theory, those it's forced upon, and those who oppose it. This is social science.

It's not logical to address biology and psychology but ignore sociology.

If people aren't interested, that's fine, but I don't think individuals who do want to explore social issues should be discouraged. This just feels, to me, like having my voice further silenced.

In describing the culture of power: "Those with power are frequently least aware of, or least willing to acknowledge, its existence, and those with less power are often most aware of its existence." -- L. Delpit

 

[Dolphin]

Regarding contemporary whathaveyou, I also wonder if men will be more influential in breaking the cycle. If for whatever reason men are more likely to buck the system?

Who knows. I'll take whoever will help. The mast majority of men and women aren't doing much.

If the psych people are going to throw their crap theories at me though, I as an individual have a right to question their motivation. Nobody else in the whole world has to care, but I still have a right to question why person x,y,z has had a right to destroy my life.

You're certainly free to do whatever you want. I just am not convinced of the evidence for any model which suggests: women researchers/clinicians (or decision-makers) will be sympathetic/won't spout psychobabble/won't patient blame, male researchers/clinicians (or decision-makers) won't be sympathetic/will spout psychobabble/will patient blame based on the evidence I've seen over many years. I think men and women should equally be challenged on whatever rubbish views or decisions they give and I don't think one needs to bring in their gender to do it effectively - indeed I think it is likely to make it more ad hominem if gender is brought into it.

 

[Snowdrop]

Can't read the research papers (no time, energy, ability).
Perhaps someone could ask KDM what he was thinking regarding the research.

 

[Jonathan Edwards]

While surfing through some words on Google I came across ttp://www.meactionuk.org.uk/PROOF_POSITIVE.htm

The last strands of morning mist are clearing. This biopsychosocial really is a religion (it even more or less says that on Wikipedia). And I guess women and men play a role just as they do in all religions. Women go to churches to drum up support (apparently even if they are Jewish). Men write the sacred books of Bertalanffy. Women create forms to distribute to the needy. Men collect money on silver dishes from people who want to be important. And so it goes on, each fulfilling their biopsychosocial gender roles maybe.

I mustn't upset Sasha by being off topic but just this once I am tempted to say: 'Jeeesus wept ....
but perhaps I shouldn't, being a respectable professor.

 

[Sasha]

I mustn't upset Sasha by being off topic

That's the other thread - say what you like on this one!

 

[alex3619]

The last strands of morning mist are clearing. This biopsychosocial really is a religion (it even more or less says that on Wikipedia).

I have long considered it more a cult than anything else, just like Freudian psychoanalysis was. So it tends to revolve around small numbers of charismatic leaders, be big on dogma, and small on asking questions.

I avoid ascribing motivations to people though, that's dangerous ground. Describing what is wrong, using evidence and reason, is a much more substantive basis to criticize.

 

[A.B.]

While surfing through some words on Google I came across ttp://www.meactionuk.org.uk/PROOF_POSITIVE.htm

The last strands of morning mist are clearing. This biopsychosocial really is a religion (it even more or less says that on Wikipedia).

It does sound a lot like a religion, doesn't it? They don't care about the aetiology of ME, they don't care that patients reject this approach, they don't care about the inconsistencies and contradictions of their "model". It's all about promoting a belief (and themselves as "experts"), and involving as many patients as possible (by lumping everyone together). They're also promoting the idea that Fibro, CFS, IBS, whiplash, and many other unexplained health problems are all the same condition.

 

[Sushi]

No idea why KDM co-authored these papers? His Ph.D. dissertation was in some aspect of exercise physiology, I believe, so this might explain some of his connections.

In counter, here is a short video (in Flemish with English subtitles) where KDM discusses (2013) the various origins of pain in ME/CFS patients. He talks a lot about metabolic sources--no mention of any psychological factors.

All I can say is that there is no hint of this perspective in his interaction with patients.

Sushi

 

[NK17]

While surfing through some words on Google I came across ttp://www.meactionuk.org.uk/PROOF_POSITIVE.htm

The last strands of morning mist are clearing. This biopsychosocial really is a religion (it even more or less says that on Wikipedia). And I guess women and men play a role just as they do in all religions. Women go to churches to drum up support (apparently even if they are Jewish). Men write the sacred books of Bertalanffy. Women create forms to distribute to the needy. Men collect money on silver dishes from people who want to be important. And so it goes on, each fulfilling their biopsychosocial gender roles maybe.

I mustn't upset Sasha by being off topic but just this once I am tempted to say: 'Jeeesus wept ....
but perhaps I shouldn't, being a respectable professor.

Dear, dear, dear @Jonathan Edwards it's because you are a True Respectable Professor that you have the guts to say it like it is!

You must be certainly familiar with Prof. Malcolm Hooper magnificent rebuttal and analysis of the PACE trial and the BPS school of beliefs (can't call it school of thoughts, since it's not based on science , titled "MAGICAL MEDICINE: HOW TO MAKE A DISEASE DISAPPEAR". It's dated February 2010. I hope that we can now speed up the dismantling of the Church of BPS, with yours and many others help. We need to send out signals to the large public, to comfort patients, educate doctors (the ones who are educable and shame the governments (these are Llewellyn King's words).

I'm in a middle of a big bad flare up, courtesy of 2 CPETs, done to prove that I'm "severely limited to engage in both normal activities (doing the bed) and sustained full-time employment" and I can't seem to be able to upload the file of Prof. Hooper and Margaret Williams scientific paper ;(. Welcome to a life with ME, where everything you have been, all you have managed to achieve is wiped out in silence and terrible physical suffering. I don't mind the physical suffering, I can still put up with it, but I'm fed up by those who deny the true nature of an old physical illness.

 

[barbc56]

I've been meaning to post the following in its own thread but I think it's appropriate to post it here. I found the research fascinating but there are several parts that made me cringe mostly because they could be interpreted in several ways. The terminology used seems less than scientific but I'm hoping this is because it appears in a newspaper. It's also an animal model.


I would like to hear others take as I have not been well enough to look at this study further.

Now, a team of Stanford neurologists have found evidence that chronic pain triggers a series of molecular changes in the brain that may sap patients' motivation

"There is an actual physiologic change that happens," said Dr. Neil Schwartz, a post-doctoral scientist who helped lead the Stanford research. "The behavior changes seem quite primary to the pain itself. They're not just a consequence of living with it."

http://www.sfgate.com/health/articl...d-are-chemically-connected-5715445.php#page-1

Barb

ETA If this needs it's own thread, please move. Thanks!

 

[Esther12]

You must be certainly familiar with Prof. Malcolm Hooper magnificent rebuttal and analysis of the PACE trial and the BPS school of beliefs (can't call it school of thoughts, since it's not based on science , titled "MAGICAL MEDICINE: HOW TO MAKE A DISEASE DISAPPEAR".

I remember thinking that there were some problems with that document, and that some of it seemed to misrepresent some of what was been criticised. I'm afraid I can't remember the details now, but as with everything else, it's well worth double checking any of the claims being made.

 

[NK17]

I remember thinking that there were some problems with that document, and that some of it seemed to misrepresent some of what was been criticised. I'm afraid I can't remember the details now, but as with everything else, it's well worth double checking any of the claims being made.

As far as I'm concerned there seems to be no problems in Prof. Hooper's rebuttal. It's solidly based on Real Science. Please have a look at all the studies he cites and the fact that he makes a clear and distinct separation between ME as per CCC and ICC and WHO and CFS based on Oxford and Fukuda's criteria, amongst the many factors. The latter being a poor political construct, a deviation form true ME, or shall I call it an aberration for us patients and an accommodation for special interests.

I'd love to hear @Jonathan Edwards' opinion on Prof. Hooper's paper. I'm sure he will find the time to go look it up on the Invest in ME website .

 

[Jonathan Edwards]

I have had a look at Professor Hooper's document. I have seen some of it before but have not looked at it in this form before. I have not had time to read it all but have looked at a number of key sections.

My first impression is that it lays out, in useful detail, the reasons why the PACE trial cannot be considered of scientific value. As we have discussed before this was essentially the testing of a deliberate placebo exercise which tells us nothing at all about the value of what went with the placebo presentation (i.e. the CBT and GET).

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'. There is no evidence for people with CFS having the same problem, even at a psychological level. I think Dr Hooper is in danger of making the same mistake, if in a different form, by trying to find evidence of pathology attributable to 'the same disease'. What I think is the more important reality is that a significant proportion of people with a diagnosis of CFS or ME will have one or other sort of biological abnormality for which treatments like CBT are completely inappropriate. (Whether CBT is appropriate for anything is another matter.)

 

[user9876]

There needs to be a forum where there can be open criticism of research in ME. Peer reviewed journals are not much use these days because there are journals that will publish anything and I do not actually approve of peer review veto of publication anyway. What is needed is debate once things are published. You get that at a professional organisation like EULAR for arthritis (which is really a 'European College of Rheumatology') but ME needs a forum not tied to a particular professional discipline like neurology or rheumatology (or psychiatry). Some scientific meetings are growing up but they may not yet be at the stage of much open debate on new research.

The best forum for this may be something like PR, in fact. I suspect a lot more researchers read PR threads than let on. It would be good if they were prepared to defend their ideas on PR. Some people might feel a bit threatened by the prospect of not being protected by a gang of like minded chums, but then one might have to ask why they felt so threatened!

It always seems to me that research progresses as people discuss and criticise ideas. That's how holes in ideas are exposed and filled. That's where a good research group is necessary where people can bring a variety of different ideas but it can be a problem where there is group think. Its always fun to do research with people from different backgrounds as they challenge ideas in different ways. Misunderstandings can also be useful - I've filed a few patents from where someone has explained an idea and I haven't understood it correctly but come up with something different.

So yes the idea of scientific forums could be very good. Something like PR is good but serves multiple purposes as well as discussing scientific research it provides a place for patients (who can be very isolated) to socialise and let off steam and frustrations. It also provides a place to discuss symptoms. I think this latter point can be important to research because its easy for doctors to hear the symptoms they think characterise an illness and miss others. Sometimes there are papers, perhaps like the one being discussed here, where patients say that doesn't represent ME.

I think peer review is not the only problem with journals by the time something is published the authors have worked so hard on the paper that it is hard to accept criticism. Its the publication of interesting results rather then the hypothesis generation stage of science. But I wonder how many journal articles would have benefited by more discussion early on both to define the hypothesis and the methodology or experimental design.

 

[user9876]

No idea why KDM co-authored these papers? His Ph.D. dissertation was in some aspect of exercise physiology, I believe, so this might explain some of his connections.

In counter, here is a short video (in Flemish with English subtitles) where KDM discusses (2013) the various origins of pain in ME/CFS patients. He talks a lot about metabolic sources--no mention of any psychological factors.

All I can say is that there is no hint of this perspective in his interaction with patients.

Sushi

He may not have authored it but been involved with a wider bit of work that this came out of and made some contribution to the work and hence gets credited as an author.

 

[MeSci]

While surfing through some words on Google I came across ttp://www.meactionuk.org.uk/PROOF_POSITIVE.htm

The last strands of morning mist are clearing. This biopsychosocial really is a religion (it even more or less says that on Wikipedia). And I guess women and men play a role just as they do in all religions. Women go to churches to drum up support (apparently even if they are Jewish). Men write the sacred books of Bertalanffy. Women create forms to distribute to the needy. Men collect money on silver dishes from people who want to be important. And so it goes on, each fulfilling their biopsychosocial gender roles maybe.

I mustn't upset Sasha by being off topic but just this once I am tempted to say: 'Jeeesus wept ....
but perhaps I shouldn't, being a respectable professor.

Looks like no knighthood for you, Prof!

 

[MeSci]

Dear, dear, dear @Jonathan Edwards it's because you are a True Respectable Professor that you have the guts to say it like it is!

You must be certainly familiar with Prof. Malcolm Hooper magnificent rebuttal and analysis of the PACE trial and the BPS school of beliefs (can't call it school of thoughts, since it's not based on science , titled "MAGICAL MEDICINE: HOW TO MAKE A DISEASE DISAPPEAR". It's dated February 2010. I hope that we can now speed up the dismantling of , with yours and many others help. We need to send out signals to the large public, to comfort patients, educate doctors (the ones who are educable and shame the governments (these are Llewellyn King's words).

I'm in a middle of a big bad flare up, courtesy of 2 CPETs, done to prove that I'm "severely limited to engage in both normal activities (doing the bed) and sustained full-time employment" and I can't seem to be able to upload the file of Prof. Hooper and Margaret Williams scientific paper ;(. Welcome to a life with ME, where everything you have been, all you have managed to achieve is wiped out in silence and terrible physical suffering. I don't mind the physical suffering, I can still put up with it, but I'm fed up by those who deny the true nature of an old physical illness.

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.

 

[MeSci]

I've been meaning to post the following in its own thread but I think it's appropriate to post it here. I found the research fascinating but there are several parts that made me cringe mostly because they could be interpreted in several ways. The terminology used seems less than scientific but I'm hoping this is because it appears in a newspaper. It's also an animal model.


I would like to hear others take as I have not been well enough to look at this study further.



http://www.sfgate.com/health/articl...d-are-chemically-connected-5715445.php#page-1

Barb

ETA If this needs it's own thread, please move. Thanks!

I think that what would make me cringe most about this study is the extreme cruelty. Largely for that reason I am not going to look at it.

But it is well-known that everything that happens to us brings about biochemical changes, not least in the brain. The concept of 'learned helplessness' is also well known. You have a continuous or repeated bad experience, and you learn to behave in a way that hopefully minimises the risk of continuation and/or recurrence, which may include withdrawal from contact/exposure to potential risk. If pain or other stimulus is contemporaneous with, or closely precedes, damage, the sufferer will learn to associate the stimulus with damage (although there is also an instinctual 'knowledge' that pain needs to be avoided - even unicellular animals show reflex withdrawal from noxious stimuli).

And who didn't know that low mood made pain (feel) worse?

This sounds like a study by the school of 'stating the obvious' and 'let's torture animals in the process'.

 

[rosie26]

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