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Dutch ME/CFS survey 2016 (600 patients)

Effi

Senior Member
Messages
1,496
Location
Europe
[Not sure if this is the right subforum, as it is technically not a scientific study.]
http://www.me-cvsvereniging.nl/sites/default/files/Rapport.pdf
press release through Google Translate said:
Report "Care for ME" comes with shocking results

Press Release ----- -----

Utrecht - It is very bad for the care of ME patients in the Netherlands. This is clear from the report "Care for Me" presented today at Dianda Veldman, director of the Federation of Patients Netherlands in Utrecht. ME / CFS Association wrote the report to draw attention to the extremely difficult situation of care for chronic disease.

Care for ME gets of the Dutch patients a 2.3 rating. An astonishingly low figure - according to a major survey - mainly due to a lack of knowledge about the disease among physicians and lack of effective treatments.

Improper doctors

The experience of GPs and specialists are often very poor. Two-thirds of patients experience a significant lack of expertise in the field of ME by general practitioners and specialists.

Moreover, it often takes a very long time before it is diagnosed. Nearly half of the patients had more than four years waiting for a diagnosis.

Pathogenic treatments

Just as shocking are the effects of the standard treatments cognitive behavioral therapy (CBT) and graded exercise therapy (GET).

In 52% of patients CGT has a negative effect on their health. Combined with this GET was 63% even at the case.

Randomness for disability

Many patients are uncapable to work in a position or have to drastically curtail their hours. It is based on pure randomness if ME patients receive incapacity benefit. Half the bed bound patients receive no benefit. This is also true for patients with a mild form of ME.

Call for recognition

The patients expressed the same wish unanimously regarding care.

- Recognition of ME as a biomedical disease

- Funding for biomedical research into the causes and effective treatments

- Training of doctors



Myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), is a severe, chronic and complex multisystem disease. The disease creates serious limitations in daily life.

I haven't read it yet (it's 50 pages), but Frank Twisk posted this overview of the results regarding CBT/GET vs pacing etc.
Frank Twisk on FB said:
Of the respondents who were subjected to CBT
37 (11,38%) qualified CBT as (very) positive
with regard to the effects on their health,
while the majority (171 patients, 52,62%)
rated the effect of CBT as (strongly) negative.

221 (50,80%) of the 435 patients
were subjected to the combination CBT and GET.

Of those patients only 7 (3,17%) reported benefits,
while 140 respondents (63,35%) experienced
a (very) negative effect on their health status.

Source:

Care for ME –
Survey of ME Patients
about their Experiences with
Health Care in the Netherlands, 2016
A. de Kimpe, B. Crijnen, J. Kuijper, ir. I. Verhulst, Y. van der Ploeg.
August 2016
14369980_10206977475224548_1912499871030055162_n.jpg


A Dutch newspaper already reacted to the results of this survey. It starts out ok, but as per usual they give the BPS crew ample opportunity to deny everything...
http://www.trouw.nl/tr/nl/39681/nbs...eniging-ME-CVS-raadt-gedragstherapie-af.dhtml
(I tried to create a Google Translate link, but their web cookies are too persistent...)
Trouw said:
ME/CFS patient organisation discourages CBT/GET

Patients with chronic fatigue are dissatisfied with treatments that are advised by the doctor. Yet they often do work, says an expert.

A survey of over 600 patients by the ME CVSvereniging shows little confidence in the treatments recommended in the guidelines for GPs.

(...)

"Behavioral and existing movement therapy are so far the only proven effective treatments for this disease. People have fewer symptoms, a minority even heal completely," Hans Knoop reacts by Dutch Knowledge Centre for Chronic fatigue.

In that center, attached to the Nijmegen Radboud University Nijmegen Medical Centre, according to the psychologist, more than half of the patients benefit from cognitive behavioral therapy. "You can see that reflected in research and it is a safe therapy. Apparently the patient organisation has spoken with other people, especially those who are dissatisfied.."

"Do not be silly'
Knoop 'regrets' that the patients' organisation discourages CBT/GET therapy. Some of the patients feel misunderstood, he notes. "They hear quite often: anyway just start moving, don't be silly. Or one has the idea that when you go in behavioral therapy, this means that the disease is your own fault.

But that is not correct: this is a serious condition that a large group of people severely limited in life. The estimates range from 30,000 to more than 100,000 Dutch. And it is a condition that also has a physical component in addition to behavioral factors. That we will certainly not deny, we include that in our own research. "

An examination of the patient also demonstrates that the disease means for many patients, loss of employment and income.
 
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Messages
13,774
In that center, attached to the Nijmegen Radboud University Nijmegen Medical Centre, according to the psychologist, more than half of the patients benefit from cognitive behavioral therapy. "You can see that reflected in research and it is a safe therapy. Apparently the patient organisation has spoken with other people, especially those who are dissatisfied.."

Oh-oh Knoop... the real PACE primary outcomes are out now, you know?
 

sarah darwins

Senior Member
Messages
2,508
Location
Cornwall, UK
Oh-oh Knoop... the real PACE primary outcomes are out now, you know?

Yes. We'll have to hope the reality is going to take a while to filter through. Clearly PACE is still widely perceived as an exemplary trial.

Somebody tell Button/Knoop that, as I might have suggested elsewhere, this is an ex-trial. It is deceased. Gone to meet its maker ...
 

NL93

Senior Member
Messages
155
Location
The Netherlands
This was covered in quite a few newspapers. A lot just reported the results of the survey, in a normal objective way, but the one with Knoop (Button :whistle:) wasn't too good. Still claiming half of his patients have some benefit from it.
But oh well, what else can he say? Same problem with Sharpe/Chalder etc, they build their entire careers around treating ME with CBT, of course they'll keep pretending it works. Admitting it doesn't cure anyone is admitting their entire careers have been one big joke, and they wasted millions of euros offering treatments that have no effect.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Behavioral and existing movement therapy are so far the only proven effective treatments for this disease. People have fewer symptoms, a minority even heal completely," Hans Knoop reacts by Dutch Knowledge Centre for Chronic fatigue.

"Of those patients only 7 (3,17%) reported benefits,
while 140 respondents (63,35%) experienced
a (very) negative effect on their health status. "

It sounds like he'd far prefer to help that 17% while not caring at all about the 35% being harmed. This is so illogical.

or does he just think most ME/CFS people are telling lies about it making them worst. I wonder what his explanation is of so many voting it has a negative affect. I wonder if he has considered that possibly many of his patients are stopping treatment not cause they've improved but cause it wasnt helping or making them worst?

or maybe he's put the blame game onto them and they've stopped telling him what is truely going on eg if you dont improve you need to try harder.

One of my CFS doctors, I got worst and couldnt get back to him any more.. he took the fact that I stopped making appointments with him that I'd recovered. (I only found this out years later when I finally got well enough to go able to get back to him and he was so surprised to see me as he thought I had recovered).

seriously, when will these doctors wake up to what is going on.
 
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Solstice

Senior Member
Messages
641
This was covered in quite a few newspapers. A lot just reported the results of the survey, in a normal objective way, but the one with Knoop (Button :whistle:) wasn't too good. Still claiming half of his patients have some benefit from it.
But oh well, what else can he say? Same problem with Sharpe/Chalder etc, they build their entire careers around treating ME with CBT, of course they'll keep pretending it works. Admitting it doesn't cure anyone is admitting their entire careers have been one big joke, and they wasted millions of euros offering treatments that have no effect.

Any more links would be hugely appreciated. I'll do a bit of a search myself too. Maybe my local paper even published it.
 

Solstice

Senior Member
Messages
641

Thank you, were I have the option to comment I will. And i'll try to get it admitted to fok.nl. Don't have too high hopes for that though as they rejected my last article about the naviaux study.

Don't see an option at the RD. And the e-magazine for GP's is making me pay 25 bucks. I've submitted the one from the RD (best one imo) to fok.nl. Responded on several of the others.
 
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Sea

Senior Member
Messages
1,286
Location
NSW Australia
"Of those patients only 7 (3,17%) reported benefits,
while 140 respondents (63,35%) experienced
a (very) negative effect on their health status. "

It sounds like he'd far prefer to help that 17% while not caring at all about the 35% being harmed. This is so illogical.
Actually the figures are worse than that. Those commas should be decimal points. So it's 3.17% positive response and 63.35% negative.

or does he just think most ME/CFS people are telling lies about it making them worst. I wonder what his explanation is of so many voting it has a negative affect.
His explanation is that patients are wrongly convinced by ME associations and forums that CBT/GET is harmful.
 

BruceInOz

Senior Member
Messages
172
Location
Tasmania
His explanation is that patients are wrongly convinced by ME associations and forums that CBT/GET is harmful.
And this would have come from those studies that show association between CFS association/forum membership and severity, where, once again, the causation is assumed to go the way the researchers want it to without any evidence. The possibility that those more severe go looking for solutions from others in a similar predicament just never occurs to them!
 

eastcoast12

Senior Member
Messages
136
Location
Long Island ny
And this would have come from those studies that show association between CFS association/forum membership and severity, where, once again, the causation is assumed to go the way the researchers want it to without any evidence. The possibility that those more severe go looking for solutions from others in a similar predicament just never occurs to them!
I haven't read that study yet.
Let me log on to QMUL website site to read it. Be right back.