Dutch Health Council on ME/CFS tomorrow on national news

Congratulations to all the activists involved in achieving a much better outcome from this "mission impossible" than would otherwise undoubtedly have been the case imo, and for raising wider awareness of the insidious biopsychosocial movement at the same time.

 

It's a bit like how blood transfusions used to save some people's lives and kill others, until the notion of blood groups was understood. Shot blasting patients with a treatment without sufficient understanding, can be extremely dangerous.

 

Van der Meer has responded to the report

https://www.ntvg.nl/artikelen/gr-rapport-over-chronische-vermoeidheidssyndroom/abstract

 

That's not hugely impressive. I'm not surprised he decided to avoid spinning that out to a whole minority report.

 

What has changed is that people realised that many of the claims made about the benefits of CBT and GET are misleading and founded on junk science.

Knoop and Bleijenberg were to two authors of the Lancet piece claiming PACE showed CBT/GET led to a recovery rate of 30/28% according to a "strict criterion for recovery". People now realise that they are untrustworthy.

 

This is correct, GET is a Cognitive-Behavioural-type therapy. The "effect" is the change on cognitions which results in a change on self-report questionnaires, but there is an absence of non-trivial changes on objective measures such as study/employment outcomes, actigraphy and neuropsychological tests.

Studies of exercise on their own have either no or negative effects.

 

The debate continues...

Google translated from article in NRC Handelsblad (Dutch newspaper)

https://www.nrc.nl/nieuws/2018/03/26/frustratie-over-me-spreekt-uit-advies-gezondheidsraad-a1597158

Frustration about ME speaks from the Dutch Health Council advisory report

The Dutch Health Council weighted patients' judgment on ME. It led to another advice: recognize the limitations caused by the disease.

It is not often the case that two of the eleven committee members openly disagree with an advice from the Health Council. And that one of the members therefore even leaves the committee. Yet that happened with the last week's advice on chronic fatigue syndrome ME / CFS. The Council advises the House of Representatives to have more research done into physical causes for ME and to take patients more seriously.

One committee member, patient representative Rob Wijbenga, thinks that the advice does not go far enough. He writes in a minority viewpoint: "The advisory report notes that ME / CFS is a" chronic serious disease "and a" multisystem disease "and that many doctors and caregivers fail patients with ME / CFS by not taking their disease seriously enough and to write about "psychological" causes, but fails to state clearly that ME / CFS is not a psychogenic or psychosomatic disease. It therefore misses a point that is essential for patients. "

The other critical member, professor of psychological interventions in somatic disorders, Hans Knoop, thinks that the advice underestimated the benefits of behavioral therapy for ME patients and withdrew completely from the committee. "The advice breathes the search for a compromise in which the opinion of some patients, whose representatives were part of the committee, had to be reconciled with the results of scientific research. This is not the task of the Health Council, nor is it in the interests of patients, "he wrote in NRC on Saturday .

Also read: Health Council: take chronic fatigue seriously

'Between the ears'

The history of ME / CFS is sad. For years, ME patients were banned with the message that their fatigue is 'between the ears'. That they imagine their illness and do not want to move or recover. The reason was that scientists could not find physical causes for fatigue.


The Health Council formulates this as follows: "Patients do not feel taken seriously, which is not good for their recovery. Their limitations are also not always recognized when assessing entitlements to income and care provisions. It happens that patients are found to be fit for work because, according to an insurance physician , no physical abnormality can be demonstrated. However, that is not a good reason to disregard someone's limitations. "

Everyone agrees about one thing: ME patients are chronically tired and have pain or concentration disorders. In the Netherlands, there are between 30,000 and 40,000 people, of whom 75 percent are women. Some are too tired to even get up the stairs, others too tired to work. If that heavy fatigue - which also occurs in a burnout - for example, lasts longer than six months, there can be ME.

But how ME arises and what to do about it is still unclear. And there must be research again, the Health Council advises.

The debate is fiercer in the US and the United Kingdom. This led to lawsuits between patient organizations and researchers whose research methods were questioned as to how therapies work. Even the name, ME, is controversial. ME (Myalgic Encephalomyelitis) indicates inflammation in the spinal cord, which would be the cause of the fatigue that patients suffer from. But because that inflammation has never been demonstrated, doctors prefer to call it CFS, Chronic Fatigue Syndrome.

This Health Council advisory report, which deviates from previous advisory reports about the disease, has come about slightly differently than normal. Because patients are included in the committee. That hardly ever happens.

Listening to patients is good, says pediatrician and professor Elise van de Putte. "Of course you have to take patients seriously. Of course you want to know what they think of their treatment and how they are treated. But should you also allow them to judge scientific evidence? "She does not think so. "You also do not ask anti-vaxxers to judge the evidence for the effectiveness of vaccinations. Science is not an 'opinion'. Research must meet strict criteria. "

Read also this opinion piece by Harald Merckelbach: A debate that continues to tire.

Patient lobby

The Health Council has given patients a role that is not appropriate, according to Van de Putte. "Patients are decisive when it comes to treatment and communication, but not in the interpretation of scientific research." The patient representative in the committee does indeed sweep the floor with the evidence for the positive effect of the often prescribed behavioral therapy.

Van de Putte treats teenagers who visit the Wilhelmina Children's Hospital with chronic fatigue. Almost 70 percent is better after that intensive behavioral therapy. Van de Putte: "If you want to take into account how patients experience behavior therapy, you also need to hear the 70 percent that has improved."

The Health Council now says that behavioral therapy (by a psychologist) is not necessarily the best treatment for ME patients and that they can not be forced to follow that therapy. In the guidelines for doctors behavior therapy is recommended as the first treatment. However, behavioral requirements, critical patients and now the Health Council, indicate that fatigue is in the head and can therefore be remedied with psychological help.

The government should also commission more research into ME / CFS from the Health Council. Because treatments other than behavioral therapy are not known until now.

Misjudgment

Insurance physician Jim Faas asked himself in his journal Medical Contact what he and his colleagues should do with the advice. He pointed out the minority point of view of the patient representative: "I read the frustration of years of ignorance of the seriousness of the syndrome and anger about the lack of a sense of urgency in the medical world."

The Health Council wants "no polemic", says a spokesman. "This is the advice, we knew there might be criticism. But the committee has been working for two years and we are no longer discussing. It's up to the Lower House now. "

 

Yes, the strict criteria in clinical trials is double-blinding or clear meaningful objective outcomes.

 

It is nice to see these naive opinions recorded in public. One day the penny will drop for people like Dr van de Putte. Patients should not be allowed to judge scientific evidence?

 

No they should not. Especially the high quality science of PACE. Keep calm and G.E.T. on

 

She is presented with enough evidence that she doesn't have the right to claim being naive.

 

Maybe, but I actually think these people believe that PACE is good science and that scientists have some magic power to think rationally that others do not have. It least she is naïve to think that her remarks can look anything but very stupid.

 

another excellent blog by @Lou Corsius
https://corsius.wordpress.com/2018/03/28/desperate-scientists/

 

Prof Knoop Trouw (Dutch newspaper) 24 March 2018: between your ears is your body! What does this anatomical insight tell us about his research?

 

https://www.steungroep.nl/nieuws/42...sequenties-uit-advies-gezondheidsraad-over-me

The UWV(Our version of DWP I reckon) sent out a memo to their doctors that refusing to follow a CBT/GET course can no longer be used to deny benefits. Article is in dutch and I ain't got the energy to translate it, so google translate is your friend.

 

That's really good news

 

Google Translate:

30 March 2018: UWV draws conclusions from the Health Council on ME

Insurance physicians at the UWV must take into account the advice of the Health Council on ME / CFS:

"Insofar as insurance physicians consider CGT and GET as an effective therapy and a client is more or less obliged to do so, this method must be abandoned.
The Health Council clearly states that CBT and GET in ME / CFS can not be regarded as treatments that can be required by general medical standards to which patients can be obliged.The decision to opt out of CBT or GET should therefore not lead to the judgment that the patient misses the chance of recovery, does not cooperate in his or her recovery or acts culpably. "

This is the medical adviser of the UWV, Herman Kroneman, in an internal policy communication to all insurance physicians (21 March 2018) *.

ME and CFS patients who do not opt for CBT or GET as treatment should therefore not be disadvantaged in their entitlement to a WIA, Wajong or WAO benefit.

End of problems when renouncing CBT or GET
This communication should end the following problems that the ME Group and Incapacity for work has so far regularly observed in practice:
The UWV insurance physician does not take full account of the limitations that result from ME or CFS, because the patient refrains from CBT or GET.
The UWV insurance physician considers the restrictions to be unsustainable, because effective treatment with CBT or GET would still be possible.
As a result, there is no entitlement to an IVA benefit for permanent full incapacity for work, or to a Wajong benefit on account of the sustainable lack of labor capacity.
The UWV assesses the reintegration effort of the employer negatively (with an expert opinion or RIV test), because a better result could be achieved if the employee would follow CGT or GET.
The UWV doctors may also no longer formally prescribe treatment with CBT or GET as a condition for granting or retaining a benefit.

In addition, the UWV advised the NVVG and the Ministry of Social Affairs and Employment to revise the CVS guideline, in which CBT and GET are recommended as only treatments, taking into account the advice of the Health Council.

Taking seriousness into account?
In practice, ME and CFS patients experience the greatest bottleneck that the UWV takes no account of the seriousness of their limitations, for example by assuming that they can work for a considerable number of hours or even full-time. Whether the problem with this policy announcement will be out of the question is very questionable.

The internal communication refers to the Health Council's recommendation that medical assessors in the context of occupational disability insurance must recognize that ME / CFS is a serious disease accompanied by substantial functional limitations. However, no concrete consequences are attached to this. According to the communication, the UWV does not recognize in the Health Council's finding that insurance physicians regularly underestimate the limitations of patients with ME / CFS. Their complaints would be taken seriously by the UWV in the same way as with other disorders. Experiences of patients, who are reported weekly at the consultation hour of the Support Group, however point in a different direction.

No reason to ignore patient experiences
The UWV regrets that no insurance physicians are involved in the preparation of the advice. The organization of insurance doctors NVVG has been invited for a hearing on the final concept. But the Health Council has indeed not appointed an insurance physician in the advisory committee.
The Support Group ME and Incapacity for work finds the criticism of this. Together with the other two patient organizations, we have nominated both a company doctor and an insurance physician at the Health Council for the advisory committee. Unfortunately, this has not been taken over.
We understand the dissatisfaction with this exclusion very well.
As a patient organization, it has often happened to us that we were not involved in research and guidelines that are of great importance to our constituents and in which we could have brought unique knowledge and insights. But this should not be a reason to ignore real patient experiences and to pretend that all insurance physicians at the UWV always work very carefully and fairly when assessing people with ME and CFS. "I do not believe in ME" is not often written down, but in the consulting room of the UWV it is often said.
Moreover, the Health Council has based its findings on this point partly on its own research of insurance physicians themselves.
The UWV also says that it wants to contribute to more scientific research. We welcome that, and we assume that we are involved from the beginning.

What to do now?
The Support Group ME and Occupational Disability will consider the question of what can be done to correct as many unjust assessments from the past as possible and to prevent them from happening in the future. That will not be easy, the egg of Columbus is not within reach. We will use the knowledge and creativity in our supporters and with a number of experts. And we already have an appointment with the UWV for a discussion about the consequences of the Health Council's advice.
For the time being, we advise those who are faced with an assessment by the Employee Insurance Agency (UWV) to prepare themselves very well, using the information on our website. The statement from the UWV can be placed on the list of documents to be taken. Experiences with the UWV that point to a policy that conflicts with this announcement can be reported to the Support Group, as well as positive experiences:
https://www.steungroep.nl/contact-pagina

* Policy statement UWV: Herman Kroneman, Medical Adviser, 21 March 2018, Health Council advisory report on ME / CFS and consequences for the implementation.