Proposition 54K0053

Proposition de résolution visant à améliorer le diagnostic et la prise en charge des personnes atteintes du syndrome de fatigue chronique.

General information ¶

Authors

CD&V Sonja Becq, Franky Demon, Roel Deseyn, Nahima Lanjri, Nathalie Muylle, Els Van Hoof

Submission date

July 10, 2014

Official page

Visit

Status

Adopted

Requirement

Simple

Subjects

chronic illness medical diagnosis medical research resolution of parliament disease prevention illness

Voting ¶

Voted to adopt

Groen CD&V Vooruit Ecolo LE PS | SP ∉ Open Vld N-VA LDD MR PVDA | PTB PP VB

Contact form ¶

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Discussion ¶

May 28, 2015 | Plenary session (Chamber of representatives)

Full source

Mr. Speaker, the committee examined the combined proposals and eventually worked on an amendment by Mrs. Van Hoof that replaced the draft resolution and served as the basic text for the discussion. We have held three committee meetings.

The general discussion revealed that there are approximately 20 000 to 25 000 patients with CVS, who are long-term ill and have many complaints that affect their quality of life. There are two visions of CVS, the biomedical model and the psychosocial model. Especially the psychosocial model is used.

International research has shown that CVS is a multifactorial condition and that a uniform treatment for the CVS patient will not be found. In addition, patients have to shop too long before they get the correct diagnosis. We have an interesting report from the KCE with a number of recommendations to detect earlier and treat better.

Minister De Block has pledged in the committee for an evidence-based approach in cooperation with the counties. Patient associations have been heard extensively, including during the previous legislature. Many in our committee were pleased that the biomedical model also gets space.

The present text requests the federal government, among other things, that the Federal Knowledge Centre for Health Care be commissioned to evaluate existing studies and scientific insights and formulate substantiated recommendations on the approach to CVS, respecting the two visions. She also calls for a directive to be issued after the study through a working group to address the diagnosis and treatment of CVS. In this context, multidisciplinarity should be ⁇ ined, the role of the first line should be strengthened and, in consultation with the Communities, attention should be paid to training and further training, ⁇ of doctors. In addition, the new multidisciplinary centres should be evaluated within four years. Finally, the proposal calls for the development of an accompanying policy on awareness raising, information to healthcare personnel and measures for recovery to work.

During the discussion, several technical and substantive amendments were made and approved. The amended draft resolution was unanimously adopted in the committee. So far the report.

I would only add that Ecolo-Groen would like to support this proposal for a resolution because it has taken into account the concerns of patient associations, because the biomedical model gets more attention, because the multidisciplinarity gets more attention, because the primary care gets more attention, because more scientific research is called for and because our amendment on training and training has been adopted.

Mr. Speaker, colleagues, through CVS, 20 000 to 25 000 Belgians are sadly suffering from eyes full of misunderstanding. Patients are often viewed as appointers and are told that they do not need to exaggerate their fatigue. This shows that CVS remains a difficult to understand condition, with which not only the patient, but also the whole of his environment has problems.

Today we approve a proposal to improve the diagnosis and reception of patients with CVS. After all, there is still no general consensus on the possible causes, the diagnosis and the most enigmatic treatment of CVS.

We want to break this process with our proposal. Colleague Dedry has already explained very well how we will do this. We would like to commission the KCE to conduct an evaluation of the existing model, the only model that is repaid, in particular the biopsychosocial model.

The problem is that not everyone has been helped with this and that CVS patients who have problems with treatment are targeting the non-scientific market and thus getting in financial trouble because they are being abused.

Of course, we want to give the KCE the space to invest more on CVS approaches that have so far been often under-examined. This is about the biomedical model and also other models that are used internationally. Apparently, there is medicine that has proven to be successful in Canana and Scandinavia. This needs to be investigated in order to better diagnose and treat CVS. Based on the recommendations of the KCE, a directive should be drawn up in consultation with the workplace.

It is also important to note that scientific institutions and universities in an open letter have called for more research on the treatment of CVS, given the fact that there is too little multidisciplinary research being carried out today. Our proposal for a resolution repeats this question.

First-line healthcare needs to be much better informed, sensitized and formed so that healthcare providers can make the correct diagnosis and initiate the right treatment.

The most important thing, however, is that the text aims to break down the biggest barriers around CVS. At the time, I called for a better integration of chronically ill people into the labour market. This is especially true for CVS patients. The patients suffer from a cyclic disease and have good and bad moments. A partial resumption of work should be possible. We also try to involve the advisory and controlling doctors in the story. This allows some patients to resume work at certain times.

Does our text solve all the problems? No, a resolution never does that. It means a step forward. Like my colleagues, I have received emails from several patients. Among other things, I received an email from a partner of a CVS patient. As a spouse of a CVS patient, that person faces the consequences of that yet ununderstood disease every day. The resolution will probably change little to the complexity of the condition and the limited understanding of the mechanisms of CVS, but hopefully something to the often shocking way CVS patients are treated.

I answered that person that we really go wider and that it is our ambition to come to better scientific insight and better treatment.

I would like to thank all colleagues for their constructive cooperation. I also hope that the federal government will respond to our call by providing more scientific insight and by providing better treatment for CVS patients. I thank you.

Mr. Speaker, colleagues, as Ms. Van Hoof has already said, the chronic fatigue syndrome is sometimes ridiculed. People who are faced with CVS encounter a lot of misunderstanding, primarily in their immediate environment but also with doctors, healthcare providers and the rest of society.

It will be between the ears, they say. The prestigious American Institute of Medicine defines CVS as a serious chronic complex disease, and proposes to replace the term CVS by Systemic Exertion Intolerance Disease. It does not just do it. It wants to make it clear that the negative connotations around the term CVS are wrong. People with CVS are not just tired, they suffer from a condition.

If we consider the Institute of Medicine as the leading scientific voice when it comes to conditions such as obesity, diabetes and cervical cancer, I think we should also take its message seriously when it comes to CVS.

With this resolution, unanimously adopted in the Committee on Public Health, we, as Parliament, give a clear signal to the CVS patients of today and tomorrow. This Parliament recognizes CVS as a disease and prioritizes measures that should lead to more effective diagnosis and better care for CVS patients.

What the exact causes of CVS are is not yet known. Several factors, both immunological, genetic and viral, have already been mentioned, but convincing evidence has not been found. Medical experts and researchers have long known that CVS is not an imagined disease. However, this awareness has not yet sufficiently penetrated to the general public and not even to the medical world.

In 2004, the drinking water in the Norwegian city of Bergen was accidentally contaminated with a giardia parasite. A few years later, a remarkable and temporary rise in the number of CVS diagnoses in Bergen was observed. It is obvious that not suddenly a lot of people have decided to imagine themselves at the same time.

With this resolution, we intend first and foremost to have the Knowledge Centre for Health Care conduct a study paying sufficient attention to both the biomedical model and the biopsychosocial model.

It is intended to come up with scientifically supported recommendations on the approach to CVS. On the basis of that study, the current Belgian policy on CVS should be monitored and a directive on the diagnosis and treatment of CVS should then be drawn up.

We also ask that the new multidisciplinary diagnostic centers, which have been active for several months, be evaluated within four years at the latest on the basis of a number of clear criteria.

Colleagues, as Ms. Van Hoof has stated, the number of patients with CVS in Belgium is estimated at 20 000 to 25 000. CVS is a serious disability condition, which also affects young people.

Abroad, compared with Belgium, much more is spent on research into the possible causes and treatments of CVS. With us, the image of CVS as being dominates something that belongs merely to psychology. We urgently need to get rid of this image. We should not make people with CVS feel like they are staying in the cold.

With this resolution, the European Parliament can bring down the many thousands of patients who struggle day by day with an unknown and paralyzing enemy.

I would like to thank everyone, especially the services and my colleagues who participated in the debate. We know that this is a debate that was initiated during the previous legislature. During that debate, patient associations, doctors and experts in the committee were heard, which in some cases in the committee led to very emotional tailings.

I would like to express to all our patients that we have done our best. It is an important step forward. We are always open to listening to them.

The introduction was broadly given. Allow me to refer only to what was important for our group in this resolution, in particular that the patient is centrally able to do so. You have also seen that the patient associations themselves support the resolution.

First, in order to help the patient, it is important that it is done in a scientifically supported way. This implies, first and foremost, extensive investigation of all correctly conducted scientific studies, all practices and recommendations, and also and above all, to draw out well-intentioned practices that do not work and that actually give up the hope these patients sometimes have. We find it very important to protect patients from charlatans.

Second, we don’t think it’s up to politics to make choices. Too little research has been done, too little awareness about this condition. We must therefore pay attention to science. Let the KCE and the universities do their work in it, without us speaking as politicians instead of science.

Third and last, we find it important that the resolution also takes into account the past, and takes into account the reference centers and the current diagnostic centers, and that it expresses the will to involve them in the preparation of new agreements. For example, we know from previous experiences with the reference centers that patients who have a longer diagnosis duration respond differently to treatments. Such points should be taken into account in the new agreements and treatments.

Since the importance of evidence-based medicine and health technology assessment stands at the forefront – for which I specifically refer to recital J – and the patient is thus placed at the center and is protected from charlatans, we have joined this resolution and support it.

Mr. Speaker, Mrs. Secretary of State, dear colleagues, I will not repeat what has been said about the etiology of pathology. Everyone knows that we are facing a syndrome whose causes remain unknown. I would like to focus on three points.

First, I would like to emphasize the fact that there is a strong demand from patients, and that we are associating them to adopt an appropriate therapeutic approach in our country, which is not yet the case, given the extremely invalidating effects of this chronic fatigue syndrome. Family life is directly affected. Some members of this committee had the opportunity to meet with people with this pathology. We were able to see how disabled it is.

The Minister welcomes the excellent team work that has been done. We took an active part in the debate because this topic seemed to us to be of paramount importance. In terms of studies, and in response to what Ms. Van Camp just said, we know that these patients are not always taken seriously, especially in the professional setting.

We do not know the origin of this pathology. A study was conducted at Columbia University, the results of which were ⁇ by the Artsenkrant. She says this: “The results constitute the first solid physical proof that this syndrome is very disabled and that it is a biological disease identifiable by blood markers, and not a psychological disorder.”

We insist on the fact that, if we have, on the one hand, the chronic fatigue syndrome, it is difficult not to also refer to fibromyalgia, these pathologies being relatively comparable. 70% of people with chronic fatigue also have fibromyalgia.

This means that there is no need to make a difference in terms of treatment between these two pathologies.

In addition, we want to emphasize the importance of multidisciplinary management of this pathology. It is necessary, on the one hand, to raise awareness, to provide information and to involve general practitioners in relation to the first contacts with these patients and, on the other hand, to do what is necessary with the counseling physicians so that the evaluation of patients suffering from chronic fatigue syndrome and fibromyalgia ensures that they are recognized and assisted in their daily work.

The resolution contains 13 recommendations. It will probably be possible to do better in the future. This is a long-awaited first step. We can only rejoice.

Mr. Speaker, dear colleagues, the sp.a is pleased that we, with this Parliament, will finally adopt a series of recommendations on chronic fatigue syndrome. Approximately 25 000 Belgians today suffer from unexplained physical complaints. Patients with chronic fatigue syndrome often feel abandoned by the government. Their complaints are not recognized. They are sent from the cabinet to the wall. They must, often with falls and rises, seek the right treatment.

It is confronting and shocking that CVS for many is highly disabled and that the condition has a huge impact on the functioning of the patient and his or her environment. Compassion is good, but it doesn’t go too far. Patients are not helped. Therefore, this resolution does not come too early. We hope that it does not fall into a box. I hope that today the government will commit to a concrete CVS action plan. I will return to that later.

We held an interesting hearing on the subject. Last year, we also organized a roundtable with patients and doctors from the workplace. After we heard everyone, we submitted a resolution with a number of majority groups. We have put it forward in the committee as a priority proposal. We made recommendations because we had the impression that there had been a certain halt in the treatment of the condition in the last decade, but after the dramatic testimonies of CVS patients, this has changed.

There were also negative reports on the treatment of CVS and the role that reference centres would play in it. These negative assessments have put the approach in a crisis zone for a while. The resolution again calls for a positive and above all problem-solving approach.

On the work of the Committee on Public Health, we may, from our group, be a little upset about the following. It would have been more beautiful to have a common resolution across the boundaries of majority and opposition, but that could not be. After all, we have noticed that the final text has found a lot of inspiration in our text and in our suggestions, including on the recommendations regarding the training and training of healthcare providers and the assessment of people with CVS by supervising and advising physicians.

However, we think that a little more attention could be paid to CVS among young people. Also, the repeatedly cited problem of the misdiagnosed and especially late-diagnosed pathology for people suffering from Lyme’s disease was somewhat understated in the resolution, but I have understood that this will be addressed by separate resolutions, also from our group.

We finally fully supported the amended CVS resolution in the committee. The text was unanimously adopted and we will later, at the final vote in this plenary session, also support the resolution with all of our group. Let me discuss with you why we will do that.

Like the affected patients, our group is looking forward to a multidisciplinary approach through diagnostic centers rather than reference centers so that the quality of life can be improved. Furthermore, we are satisfied with the red thread through the recommendations, giving the patient a more central position. For example, at the patient’s request, we have explicitly stated that additional efforts are needed to give people with CVS a chance in education and on the job market. In connection with that last point, in the area of repair work, we ask Minister Peeters and especially his regional colleagues for Werk to move the beacons.

Not all people who get the diagnosis CVS struggle with fatigue. We learned this from the hearings. Some of them want and can return to work, but especially the employer’s restraint and the mandatory provisions associated with the substitute income for illness or disability are in the way. That can be better. This is also seen in, for example, cancer patients and patients who need to be treated regularly.

The resolution also emphasizes awareness raising and research. A good knowledge of the disease is of course important for proper treatment. This study contains concrete recommendations that want to commission the Federal Knowledge Centre for Healthcare to conduct a thorough study of the so-called biopsychosocial model in addition to the biomedical model. From this comparison, evidence-based guidelines can then emerge. We can then attach there good information, training and training for healthcare providers.

How the resolution came into being ⁇ does not really play a role for the people affected by CVS. Resolutions often end in vain as soon as they are approved. Our group would really like to see this resolution differently. I therefore call on the Government to develop concrete actions on the themes that we set forth in the resolution on the basis of this parliamentary proposal. Under the coordination of the ministers De Block and Peeters, and of course in consultation with the state ministers of Labour and Education, a concrete action plan must be drawn up. Furthermore, progress should be evaluated and ⁇ within a reasonable time to the Chamber’s Public Health Committee.

It is time for people who give up their CVS disorder massively every day through concrete measures to gain prospects for better diagnosis and, above all, treatment. Where necessary, we need to develop legislative changes to make it more livable for them, both at home and at work. I count on a strong commitment from the government and especially on a commitment from the ministers De Block and Peeters, whom we ask to counter this. We know that they have enough weight.

On behalf of the thousands of CVS patients, thank you for that!

Mr. Speaker, as many things have already been said, I will intervene from my bench, synthesizing and summarizing as much as possible. I would like to say here to some colleagues that the diagnosis of a chronic fatigue syndrome is complex – you will agree – and that it is often necessary to first exclude a whole series of other pathologies before we can make this diagnosis. The reality of patients is also complex, since this pathology has an extremely disabled character. The social impact is enormous and often the repercussions on their professional investment.

In the second point, I would like to emphasize the multidisciplinary approach that is obviously fundamental, even more in pathologies such as this, both at the level of diagnosis and care, but also at the level of connection with the first line. I will allow myself to advocate again here – I will do so whenever necessary with the Minister of Health – to avoid the overflow of directives, recommendations and other papers addressed to caregivers. To make scientific recommendations based on a study, of course, protocols of care, why not but I think there will be no need to add an additional directive.

Finally, I still have a regret, although we will obviously support this resolution, not only for all patients but also more specifically for patients I have known personally. I will conclude with a regret, which is why I will submit an amendment here. This regret is the problem of the resources available today for the reference centers. This is the element that was highlighted transversally both by the caregivers themselves and by the patient associations. I therefore submit this amendment to request that, first and foremost, sufficient resources can be provided and guaranteed for the multidisciplinary diagnostic reference centres. The challenge is to have a quality care of all concerned patients.