Dutch Health Council on ME/CFS tomorrow on national news

M

Mattie

Senior Member (Voting Rights)
Tomorrow at 20:00 on the "NOS Journaal" (dutch national news):
An item on ME/CFS as the Dutch Health Council will publish their long awaited advice/guidelines on ME/CFS tomorrow. Also a radio item on this tomorrow morning between 06:00 and 09:30 on NPO1-radio, I have not yet found the exact starting time.

I'll try to post the tv broadcast with subtitles the next day. (only if it's any good ;-)
 
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Short radio interview with ME-patiënt Lisa Klaasen just aired on NPO-Radio 1 and that went well.

Lisa did a great job explaining the illness, how it goes way beyond fatigue and what we expect from the Health Council today: get rid of CBT/GET.

Interview below. (dutch)

 
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Summary:

Conclusions and recommendations
Scientific research on ME/CFS is needed to serve patients better. Meanwhile, it is essential that ME/CFS is a diagnosis that is made in practice, that patients’ disease symptoms are taken seriously and treated as well as possible. Their functional limitations must also be fully recognised in the assessment of claims on income and other provisions

The committee recommends the following.

• The Minister of Health, Welfare and Sport should commission ZonMw for a long-term, substantial research programme on ME/CFS. The research would primarily focus on substantiation of the diagnosis, pathogenesis and treatment of ME/CFS.

• Those responsible for training and further education of healthcare providers should ensure that education and training highlight the serious, chronic, multisystem disease ME/ CFS and what healthcare providers can do for patients with this disease.

• The Federation of University Medical Centres and the healthcare insurers should designate a few university medical centres that – in collaboration with patient representatives, other hospitals, GPs, rehabilitation centres, sleep centres and other healthcare providers in the region – will open an outpatient clinic for ME/CFS, with associated healthcare networks and research groups.

• Medical disability assessors within the context of private and social disability insurance, the Social Support and Provision Act and the Long-term Care Act should recognise that ME/CFS is a serious disease that is accompanied by substantial functional limitations, and they should not regard a patient’s decision to forego CBT or GET as inadequate recovery behaviour.

Edit: now available full executive summary in english as published by the dutch national health council: download PDF
Thanks @Effi for posting link to this document.
 
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NelliePledge said:
What does it say about exercise/GET?
Click to expand...
...recognize that ME / CFS is a serious disease accompanied by substantial functional limitations and consider the choice of a patient to avoid CBT or exercise therapy NOT as 'inappropriate recovery behavior'.

CBT and GET are not to be regarded as adequate treatments for ME / CFS.
The choice to to refrain from CBT or GET should not lead to it judging that the patient is missing his chance of recovery or does not cooperate with his or her recovery.
 
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:)Yes!! I am just going to be excited!

I think this is the best advise we could have realistically hoped for. It’s a good start!

No forced cbt and get!

Acknowledgement that ME is complex, multisystem and debilitating and therefore a right to get disability benefits

Advise for medical centres, schooling of docters, biomedical research program:thumbup:
 
It's nice that the minority viewpoint of R.H. Wijbenga is already included in the appendix of the report, these are his points:
  • The advice differs from the request for advice
  • The advice does not state that ME is not a psychogenic or psychosomatic illness
  • The advice does not do justice to the seriousness of the disease
  • The advice doesn't give enough practical guidelines
  • The advice gives a too rosy picture of cognitive behavioral therapy
  • Also the advice does not take enough distance of graded exercise therapy
  • Pacing is ignored in the advice
All in all: When patients say 'This is harming us', health professionals must listen

Recommendations: connection with international biomedical research and knowledge is crucial
 
Grigor said:
With English (Google translate)

Click to expand...

A few quotes giving us some more detail about the guidelines
Jim Faas said:
What diagnostic criterion do we assume? The committee thinks that the Oxford criteria should no longer be used and thus makes it clear that ME / CFS is more than chronic fatigue. She opts for the more specific so - called IOM criteria . Those criteria are stricter. An important requirement is the presence of post exertional malaise (PEM), exacerbation of complaints after efforts.
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Jim Fass said:
Which treatment should we start with? I translate it freely: in agreement with the patient please! Look now: a nice example of shared decision making . Bottomline: because there is no obvious proven effective treatment, there is really nothing to impose on patients. This applies to CGT and GET. The Health Council does not explicitly recommend GET. So: reject benefits and provisions with the argument that 'there is a treatment that promotes your recovery, I expect you to follow it', that is no longer possible.
Click to expand...

Jim Faas said:
Pièce de résistance is the assessment of the limitations caused by the disease. What is in the advice: 'take into account substantial limitations'. That is going to be a pretty tough job for insurance doctors and company doctors. If he was not already. Especially for colleagues who believe 'that ME / CFS can never be a reason to accept more than slight limitations'.
Click to expand...

So not quite as good as we might have liked but certainly better than previously and I think this should prove useful in improving the NICE guidelines.
 
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