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Dutch News: "Recognized or Misunderstood Disease: Suffering is the Same"

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15,786
This was briefly and positively mentioned in the Dutch morning news on TV, which pretty much everyone sees. The TV coverage only mentioned the bit about the gross disparity in funding and treatment, despite similar severity between the misunderstood and recognized disease. Their source for it was this article:
http://www.trouw.nl/tr/nl/4516/Gezo...-onbegrepen-ziekte-lijden-is-even-groot.dhtml

The article is mostly about the impact of CFS, FM, and IBS (misunderstood) versus RA and MS (recognized). It also looks like there were some head-to-head comparisons between CFS and MS, and between FM and RA, due to the similar symptoms, and the quoted research found that the impacts were the same for both diseases in each pair in regards to limitations and interfering with work.

But the researcher also points out that despite the similar levels of suffering, there is much more money and attention given to the better understood diseases. As a result, doctors find patients with the unexplained diseases to be troublesome and have no treatments for them. She says that CFS patients have more psychological problems than MS patients, but suggests that it is due to lack of recognition and disbelief from the doctors.

The director of an ME/CFS patient organization was interviewed, and is glad that attention is being brought to the issues, but would prefer that research was investigating the medical cause of the disease.

The Health Council will be looking into the issues, commissioned by the Dutch House of Representatives following a petition by patients and supporters. That should happen after the summer.

Then there's a really stupid excerpt about "Barbara" being diagnosed with CFS and being oh so very lucky to get referred to a psychosomatic CBT clinic, where GET saved her! :vomit:
 
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Messages
15,786
I looked into the researchers a bit, and they're pretty interesting. They are involved in psychosomatic research, and refer to CFS, FM, and IBS as functional somatic syndromes, but define that merely as being illnesses where the cause is not yet understood. There's no real implication that they consider the disease to actually be psychosomatic. I also don't see any indication that they're using their results as a platform to demand more funding for CBT clinics, unlike what the BPS groups tend to do in the UK when patient services are shown to be inadequate.

Most of their publications are behind paywalls, but they really don't seem to engage in the usual spin, and they seem to confine their research to actual psychological and social issues, instead of trying to explain the diseases in psychosomatic terms. They also don't seem at all inclined to spin results ... for example, concluding that there's no consistent association between stress and symptoms, instead of bending reality to support the hypothesis, as other Dutch researchers have been known to do :rolleyes:

At any rate, they aren't a hardline BPS group, and are probably annoying the hell out of the hardline Dutch group :thumbsup:
 

Sean

Senior Member
Messages
7,378
She says that CFS patients have more psychological problems than MS patients, but suggests that it is due to lack of recognition and disbelief from the doctors.
That is an important point to get across.

A huge chunk, even the majority, of psychosocial problems we have arise from how the medical system (and hence broader society) treats us.

They are iatrogenic.

This is the ugly truth psychiatry and medicine has to deal with. Good to see they are starting to grapple with it.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Prof Julia Newton also (robustly - I think) made a similar point in her recent presentation - that any mental health problems seen in ME patients are secondary to dealing with a severely incapacitating disease.
Prof Julia Newton said:
It is important to recognise that medically unexplained does not mean that it is not real or that the patients is mad or bad. CFS/ME is recognised as a real illness and it is only when you meet somebody who has been affected by this condition that you realise it is not something that you would wish on your worst enemy. Almost all patients are devastated by their illness and suffer depression and anxiety as a consequence of their life being taken away from them.

It is difficult to imagine how patients would wish to continue in this state, and when you meet somebody you realise that there is nothing to be gained for them as an individual from this diagnosis. In addition there is emerging scientific evidence that now points to underlying physiological abnormalities in those with CFS/ME, and that the any anger, frustration, depression and anxiety are secondary to those s physiological symptoms experienced by individuals.
 

Sean

Senior Member
Messages
7,378
What really shits me is that we already know the general outcome of treating humans like this, particularly when imposing double-bind 'choices'. There is nothing unique to ME/CFS in this regard, we are just another in a long line of shabby examples.

Yet they still keep doing it. :mad:
 
Messages
15,786
The same story was picked up by nu.nl, a more mainstream publication, but their coverage is based on the trouw.nl coverage. It works better with Google Translate, however, and doesn't include Barbara's fairy tale recovery. http://www.nu.nl/gezondheid/4058122...et-onbekende-ziektes-als-erkende-ziektes.html

The comments at nu.nl are all sympathetic or neutral, though it's not getting a lot of comments for that site. There are extremely good and well-informed comments on the trouw.nl site now. One mentioned that the quoted researcher, Rosmalen, is involved with http://www.gripopklachten.nl/ .

The link for doctors ( http://www.gripopklachten.nl/informatie-voor-artsbehandelaar/ ) indicates that they use CBT and address BPS concerns, in an online format. But there's no clarification on the type of CBT used, and they mention the need to refer patients to specialists for some complaints, which is an absolute no-no according to the typical psychobabblers. GET isn't mentioned, and the context in which they refer to CBT doesn't seem to promise a cure or exclude the possibility of pacing. I'm a bit tempted to ask my GP to sign me up just so I can see if it's a quackfest, mildly clueless, or potentially useful for new patients.

So basically it seems like the researchers in this group have a milder false illness belief than the hardcore psychobabblers, but still think that there's stress, childhood abuse, poor coping, etc involved. But they also seem more willing to suggest an ongoing intermediate physical cause (HPA axis dysfunction resulting from an illness or abuse), and completely unwilling to spin their own results in accordance with an agenda. They also might be another case of researchers who are unable or unwilling to question the conclusions drawn by "authorities": CBT works, psychosomatic diseases exist, etc.

Nonetheless, with their BPS focus I doubt they'll ever find anything useful or original. But at least they aren't as overtly harmful as the Nijmegen group in the Netherlands.
 

Asa

Senior Member
Messages
179
Sorry, I'm not up to reading all the text, but I believe Cort Johnson recently wrote about this Dutch info too: http://www.cortjohnson.org/blog/201...jor-diseases-in-medical-world/#comment-650740

Should it not have been named elsewhere (and for reference), the study is: Functional limitations in functional somatic syndromes and well-defined medical diseases. Results from the general population cohort LifeLines Monica L. Joustra a , Karin A.M. Janssens a, Ute Bültmann b , Judith G.M. Rosmalen. Journal of Psychosomatic Research(2015).

http://www.sciencedirect.com/science/article/pii/S0022399915004390
 

Clodomir

Where is the sun?
Messages
212
Location
Belgium
Hi,

I just read the article and found the Barbara story so unbelievable:bang-head:....
I read also the comments and I can add some more informations: In Belgium, we had a GET program, who was abandoned (2012-2013) because it doesn't work (follow the AA comment in deutsch).
Now the program is back: it is paid by the government and all the hospital can ask money to have a special place, doctors, psychologists, nurses for CFS patient!!!!!
There is a big difference between the 2 parts of the country: the french part (Wallonia and Brussel) didn't ask any money and don't want to have specialized center, but the flemish well??? Isn't that strange? :woot:
And the funniest thing is that the french GP's do not know that and still send you to a no more existant center!!!!
Belgium is a very strange country...;)

Have a nice day

Clodomir