de Meirleir's involvement in 'catastrophisation' studies

[NK17]

I have the suspicion that the psychologists who "explain" ME/CFS never actually see any patients, and base their opinion on questionnaires and imagination. That would explain why these theories are so out of touch.

Not Dr. Leonard Jason from De Paul University in Chicago.
Have you seen his recent video podcasts?

 

[A.B.]

Not Dr. Leonard Jason from De Paul University in Chicago.
Have you seen his recent video podcasts?

I haven't seen them. I'm guessing this is a subtle hint to generalize less. I'm aware that my critique doesn't apply to the entire profession, but the context here is a certain type of research .

 

[Gijs]

De Meirleir doesn' belive in 'catastrophisation', i knwo that for sure. He believes Borrelia and Bartonella are the main cause for ME.

 

[Gijs]

Sorry, Believe and Know.... pff

 

[Ren]

I wrote the following when the thread was in an earlier stage but will share anyway, though it's a bit long...

Several things come to mind (though I haven't read the paper either):

(1) Blame the victim

(2) Arrogance; (Are such psych theories more common in cultures (and/or cultural circles) where arrogance is a more accepted trait?)

(3) CDC (to some degree at least) has stated that the severity of the initial infection predicts the development of ME/CFS. CDC has also said (to my understanding) that racial/ethnic minorities and low-income individuals are disproportionately affected by ME/CFS (within a US context at least, I assume).

Additionally, and though ME/CFS was not particularly named, I know that a Swedish report on discrimination within healthcare stated that immigrants were less likely to be treated in a timely manner and that this delay in services contributed to worsened health outcomes.

In a US context, I'm assuming that racial/ethnic minorities and low-income individuals are those who might generally have the least access to healthcare and/or quality healthcare. Within European healthcare systems, I'm assuming that healthcare resources/rationing affect timely treatment (for everyone) but immigrant status (or any "negative" status marker, so to speak) can further negatively affect the quality of care received - and thus outcome.

I know also that at least one retired Swedish lawyer was working to help ME/CFS patients and that he said many-to-most of his clients were immigrant women with low Swedish-language skills. I believe as well that in at least one (UK I believe) ME/CFS literature review, one research gap was that studies excluded individuals with little-to-no English language skills.

I don't know the background of the researchers in question, and perhaps they came from very humble beginnings. But no matter where they came from, they are in a to-some-degree privileged position now. If nothing else, they (most likely at least) have the privilege of not having ME/CFS.

Long story short: It should be questioned as to what degree researchers who are most often privileged by social status, income, neighborhood, health, language ability, whatever - it should be questioned as to what degree such individuals can ethically/accurately define/identify/rate various forms of catastrophizing.

Maybe their research should be presented like this: Predominately middle upper-class and/or white male researchers assert that individuals (especially women, poor women, racial/ethnic women, immigrant (refugee?) women, and women with limited second-language ability) frequently exaggerate the pain they experience from untreated chronic disease. :/

(What happened to Use your power for good??)

--------

EDIT: Also to consider in regard to social inclusion/exclusion: I believe a well-recognized research gap has been that those too ill to travel or participate in clinic therapy sessions have been excluded from research. I would like to propose that those with low incomes - who may have financial difficulty in accessing appropriate transportation or who may not be able to afford a sitter (for children), for example - that these individuals may have also been excluded from studies. (Maybe study participants receive some kind of financial assistance??)

I recently also asked what rights persons with ME/CFS (should) have in accessing public meetings through audio/audio-visual archival*. This of course also affects those too ill to participate in person and/or those who can't afford to participate in person.

*http://forums.phoenixrising.me/inde...outreach-session-in-london-8-sept-2014.32346/

Consider also, please: UN Convention on the Rights of Persons with Disabilities

Recognizing that disability is an evolving concept and that disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others

http://www.un.org/disabilities/convention/conventionfull.shtml

 

[NK17]

I haven't seen them. I'm guessing this is a subtle hint to generalize less. I'm aware that my critique doesn't apply to the entire profession, but the context here is a certain type of research .

Subtle hint which is not in disagreement with this specific thread. I understand that we're not generalizing, on the contrary, we're shocked and surprised to see a certain name on this papers.

IMO this 2 studies on CFS are garbage, an awful lot of garbage.

I can't help but think that some of KDM's patients will feel a bit let down by him, for a lack of better words, I certainly would be.

I also want to make it clear that I don't want to start a polemic about KDM.

I also hope that other ME doctors will not stumble and fall on such slippery BPS's "research" ground .

Time will tell who is a real ally of ours ...

 

[Dolphin]

Maybe their research should be presented like this: Predominately middle upper-class and/or white male researchers assert that individuals (especially women, poor women, racial/ethnic women, immigrant (refugee?) women, and women with limited second-language ability) frequently exaggerate the pain they experience from untreated chronic disease. :/

Lots of the psychobabblers are female.

 

[Dolphin]

To see KDM linked with this nonsense seriously reduces his credibility.

Unfortunately over the years, I've seen a lot of experts make the odd spurious (IMO) claim. The ones least likely to I find are those who have the illness themselves and then people who live with the illness. With such a vacuum about what causes the condition to continue, psychological or patient-blaming views can easily occur.

 

[Martial]

What kind of specialism would be appropriate?

People that are well versed in research and treatment of said medical conditions. Something that gives results and with patients that are also properly diagnosed. Why would a psychologist be assigned to treat a physical illness? You wouldn't ask a psychiatrist to cure cancer or find better ways to kill the cancer in patients.

 

[Sasha]

Absolutely. If there were more venues that allowed patients to publicly discuss problems with researchers on an equal footing, a lot of the problems around CFS could have been avoided imo.

I could see some potential for problems when so many patients have had their lives made worse because of the work of certain researchers, but I'm sure that there could be a way of effectively moderating any discussion in a way that would be able to account for this.

This is a very interesting idea. A few years ago, I'd have said that PR wasn't ready for that, but over the last couple of years the policies and implementation on moderating have matured and this is now a very civilised place to be.

I can see some "hot button" topics attracting problems but a good way to pre-empt that might be to start such threads by specifying what's within the bounds and what isn't.

 

[Ren]

Lots of the psychobabblers are female.

My theory for that is that they are afraid of appearing weak and so they cannibalize those whom they think make them look weak. And some anti-ME/CFS women think that women with ME/CFS have been brainwashed by the patriarch to believe they are truly sick, and so I think they (the anti-ME/CFSers) think (at best) that they're saving these poor, brainwashed souls.

At the end of the day though, we still have a group of privileged individuals saying, I will judge and enforce what is best for you, no matter what you think/feel/know/have experienced/etc. And if this makes you feel powerless, I'll give you another psychological label...

Are the leading/more prominant psychobabblers men? -the ones that established the behavioral theory of ME/CFS? If so, it seems ironic that (some) female babblers have established themselves (gained their up-and-comings) by preying on disadvantaged women (and men, children/youths). This is why I said cannibalize other women.

Just "thinking out loud"... It's really hard to understand why people treat other people this way. It's not nice at all.

 

[snowathlete]

It is difficult trying to convince therapists of all sorts that they may be out of touch with reality. I had this problem with physiotherapists and occupational therapists wanting to treat arthritis with unproven modalities because of irrational beliefs popular with their communities. It is easier for doctors because they also have the job of diagnosing and explaining. Doctors can retain self-esteem even if having to say they have nothing to offer other than sympathy and hope. But if you say to a therapist that everything they do is unproven and we might as well close down their department you cannot blame then for trying not to believe you. And over the years it has always seemed to me that there are some therapists who ARE in touch with reality and can help patients a lot by using their common sense and experience rather than trendy beliefs.

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!

@Jonathan Edwards, I read the things you say and I THANK GOD you're involved in ME research and posting on here. I know you aren't the only professial to see the junk psychiatric research on ME for what it is, but it's so darn encouraging to hear it coming from someone highly respected in the medical community who isn't afraid to enage openly with patients. We need that. It has been all to easy for those producing this psychobabble to continue doing so without people calling them out on it because patient's voices are rarely taken seriously - especially when they start a smear campaign against you labeling it as 'harrasement' and the like.

 

[Dolphin]

My theory for that is that they are afraid of appearing weak and so they cannibalize those whom they think make them look weak. And some anti-ME/CFS women think that women with ME/CFS have been brainwashed by the patriarch to believe they are truly sick, and so I think they (the anti-ME/CFSers) think (at best) that they're saving these poor, brainwashed souls.

At the end of the day though, we still have a group of privileged individuals saying, I will judge and enforce what is best for you, no matter what you think/feel/know/have experienced/etc. And if this makes you feel powerless, I'll give you another psychological label...

Are the leading/more prominant psychobabblers men? -the ones that established the behavioral theory of ME/CFS? If so, it seems ironic that (some) female babblers have established themselves (gained their up-and-comings) by preying on disadvantaged women (and men, children/youths). This is why I said cannibalize other women.

Just "thinking out loud"... It's really hard to understand why people treat other people this way. It's not nice at all.

I remember reading a study of UK GPs and their attitudes to M.E. and female GPs were less sympathetic on average.

Perhaps there are complex reasons why this is but currently I remain to be convinced problematic attitudes about ME/CFS are mainly caused by men.

 

[Snow Leopard]

Not Dr. Leonard Jason from De Paul University in Chicago.
Have you seen his recent video podcasts?

No one is lumping Lenny in with a certain group of Dutch, Belgian and British psychiatrists...

Yes, Lenny is in touch with patients and doesn't write inappropriate conclusions to his studies. This is also why Lenny is well respected amongst the patient community, unlike the aforementioned psychiatrists.

Perhaps there are complex reasons why this is but currently I remain to be convinced problematic attitudes about ME/CFS are mainly caused by men.

When it comes to education, training, research focuses and funding, men are still the large majority who are making those decisions. Few of them really have the experience and education to make wise decisions about things like CFS.

I do believe it is a problem - specifically, CFS is deemed to be an 'women's disease', of the worst kind ('unexplained') with all the historical overhang of 'hysteria', 'neurasthenia' etc.

Likewise, 'women's diseases' in general receive less research attention and funding, with the notable exception of breast cancer of course - which shows you how important forging relationships to secure funding and lobbying really is.

 

[Daffodil]

I wouldn't read too much into this. Depressed patients DO indeed show physical differences..lower NK cell counts, lower secretory IgA, higher cytokines, etc....DeMeirleir just wants to cover all the bases. We all know DeMeirleir does not think any of this is psychological. He has spent his entire career fighting that idea!

 

[snowathlete]

Absolutely. If there were more venues that allowed patients to publicly discuss problems with researchers on an equal footing, a lot of the problems around CFS could have been avoided imo.

I could see some potential for problems when so many patients have had their lives made worse because of the work of certain researchers, but I'm sure that there could be a way of effectively moderating any discussion in a way that would be able to account for this.

Maybe we shoud set up some sort of an annual researcher and patient get together and invite people of all types of research to face questions and feedback about their research (In a factual, curteous and structured/organized way of course). Surely only those who feel their own research doesn't stand up to careful observation would decline the invite and that alone may provide it's own message. This might encourage more reasoned, and valuable, studies in the future.

 

[Ren]

I remember reading a study of UK GPs and their attitudes to M.E. and female GPs were less sympathetic on average.

Perhaps there are complex reasons why this is but currently I remain to be convinced problematic attitudes about ME/CFS are mainly caused by men.

I don't have an answer - I just wonder about the evolution and interplay of ideas and players and politics.

 

[Dolphin]

I remember reading a study of UK GPs and their attitudes to M.E. and female GPs were less sympathetic on average.

Perhaps there are complex reasons why this is but currently I remain to be convinced problematic attitudes about ME/CFS are mainly caused by men.

When it comes to education, training, research focuses and funding, men are still the large majority who are making those decisions. Few of them really have the experience and education to make wise decisions about things like CFS.

More decision makers may be male, but that doesn't mean their maleness means they are more likely to make worse decisions regarding ME/CFS which is what was being discussed. As I said, female GPs were found to be less sympathetic on average. 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.

 

[Snow Leopard]

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...

 

[MeSci]

People that are well versed in research and treatment of said medical conditions. Something that gives results and with patients that are also properly diagnosed. Why would a psychologist be assigned to treat a physical illness? You wouldn't ask a psychiatrist to cure cancer or find better ways to kill the cancer in patients.

From a quick look, (most of) the authors of the first study aren't psychologists - they seem to publish mostly in journals focused on physical illnesses. KDM seems to switch a lot between the two.

BTW, while checking that out, I found another paper about 'kinesiophobia' - KDM and co again.