Proposition 53K0382

Proposition de résolution visant à reconnaître le syndrome de la fibromyalgie et à améliorer la prise en charge globale des patients qui en sont atteints.

General information ¶

Authors

Ecolo Muriel Gerkens
Groen Meyrem Almaci
MR Damien Thiéry
PS | SP Colette Burgeon
Vooruit Maya Detiège

Submission date

Oct. 13, 2010

Official page

Visit

Status

Adopted

Requirement

Simple

Subjects

chronic illness resolution of parliament public health

Voting ¶

Voted to adopt

Groen Vooruit Ecolo LE PS | SP MR

Abstained from voting

CD&V Open Vld N-VA LDD VB

Contact form ¶

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Discussion ¶

April 28, 2011 | Plenary session (Chamber of representatives)

Full source

Mr. Speaker, Mr. Speaker, Mr. Speaker, Mr. Speaker, Mr. Speaker, Mr. Speaker, Mr. Speaker, Mr. Speaker, Mr. Speaker, Mr. Speaker, Mr. Speaker, Mr. Speaker, Mr. Speaker, Mr. Speaker, Mr. Speaker, Mr. Speaker, Mr. Speaker, Mr. Speaker, Mr. Speaker, Mr. Speaker, Mr. Speaker, Mr. Speaker.

For my first speech, it is a real honour to present a report on a topic that affects me a lot.

Members of the Public Health Committee examined four times the proposals for resolutions no. 94 and no. 382. This was adopted as the basic text of the discussion.

Ms. Gerkens, the lead author of this proposal, said the text was born as a result of a conference on fibromyalgia in April 2009. WHO recognized fibromyalgia as a disease in 1992 and as a chronic disease in 2007. In 2008, the European Parliament adopted a written declaration on this disease. Ms. Gerkens recalled that in Belgium many initiatives have been taken in the field of pain and chronic pain. However, some deficiencies have been identified and are therefore the subject of requests repeated in this proposal.

Ms. Detiège, co-author of the text, said that in Belgium, about 300,000 people will have symptoms of fibromyalgia. Diagnosis takes time because this disease is not yet well known to doctors and has not yet been the subject of sufficient research. Regarding training, Ms. Detiège recalls that special attention should be paid to centers specialized in pain treatment and that it is important to provide practitioners with training in algology.

Ms. Burgeon, co-author, ⁇ emphasized the lack of recognition of patients with fibromyalgia. It calls for awareness-raising campaigns that should be addressed in priority to general practitioners but also to doctors counseling mutualities for patients whose state of health requires it. Ms. Burgeon believes that it is crucial to grant them the status of chronic diseases.

by Mr. Thiéry, who signed the proposal, concludes by believing that it is high time to act.

Ms Van Den Ende recalls that her group has also submitted a proposal for a resolution on the subject because, given the lack of recognition of the disease, many patients do not know whom to address. That is why its text calls for the recognition by public authorities of fibromyalgia as a chronic disease, the establishment of adequate funding, the organization of a continuous and multidisciplinary care journey on the basis of a biopsychosocial approach, better training of healthcare providers, better awareness of the disease of healthcare providers, patients but also the general public, training of physicians in algology and, finally, the guidance of patients in order to ensure their integration into society.

Ms. De Bont indicated that she wanted to extend the debate to the problem of chronic fatigue syndrome.

The representative of the Minister of Public Health clarified that all persons with health insurance in Belgium could benefit from the necessary refund related to the treatment of their pathology.

She also recalled the existence of reference centers for chronic pain, the recognition of fibromyalgia in the F list of chronic diseases, and the reimbursement of certain physical therapy treatments. The main problem, according to the representative, is the lack of knowledge or lack of knowledge of this disease.

Regarding the status of chronic diseases, it was recalled that this status is only one of the measures of the chronic diseases plan. Other projects, for example, aim to increase the coverage of costs related to the fight against chronic pain. Multidisciplinary teams have been strengthened.

It is also planned to fund a function of pain control (algology) in hospitals. With regard to awareness raising and training of healthcare providers, contacts with both patient associations have already been established for this purpose.

Following these clarifications, Ms. Gerkens and consorts submitted amendments aimed mainly at updating the text.

by Mr. Beuselinck advocated that the draft resolution should fit into a broader framework, which includes chronic fatigue syndrome and unexplained physical pain. If he can subscribe to the biopsychosocial model of the multidisciplinary approach, the interviewer wishes that the task of the general physician, the first provider of care to have to evaluate pain, be revalued. He believes that the diagnosis should be made quickly, and this within a maximum of six months.

On the other hand, Mr. Beuselinck opposes the extension of the consultation. Indeed, the general physician should not play the role of the psychologist; the profession of the latter must be regulated in this regard. In this regard, Mr. Beuselinck and consorts submitted 8 amendments.

De Bont also submitted an amendment to extend the text to chronic fatigue syndrome, but not to any unexplained physical pain.

by Mr. Somers submitted an amendment to extend the competence of reference centers for chronic fatigue to fibromyalgia and unexplained physical pain.

Ms. Gerkens indicated that the pain control reference centers ⁇ treated patients with fibromyalgia, but also those suffering from other conditions.

The Minister’s representative indicated that SPF Public Health has launched pilot projects aimed at improving second-line care in paramedical assistance and clinical psychology regarding chronic fatigue syndrome. It was also stated that the latter could also be caused by an infection. Therefore, a real distinction must be made between chronic pain and chronic fatigue. This is why two types of reference centers currently exist: those treating chronic fatigue and those treating chronic pain.

De Bont insists on the need for a proposal for a resolution on the problem of chronic fatigue syndrome.

by Mr. Beuselinck believes that all conditions, namely fibromyalgia, chronic fatigue and unexplained pain require the multidisciplinary approach of the bio-psychosocial model. This justifies the treatment of these pathologies in a single text.

Mrs Muylle concludes by saying that she endorses the proposal as a whole, not agreeing with the point concerning the structural financing of the reference centres. The Committee called for a second reading. During the meeting, no comments were made.

The proposal was adopted by six votes and four abstentions. (The applause)

This is his maiden speech.

Is it true?

(The applause )

I will not say anything to Mr. De Croo, because if he were there, he would make me notice that mr. Seminara has already had the opportunity to speak in the Senate!

We consider this resolution, as it is now, a missed opportunity. Like chronic fatigue syndrome, fibromyalgia is an example of a condition involving a patient with unexplained physical complaints. For all patients with unexplained physical complaints, it is important that their suffering is recognized, but also that work is made of a correct diagnosis and an optimal treatment.

We therefore find it a missed chance that our amendment to modify and extend this resolution in that sense to include all patients with unexplained physical complaints in the committee was voted down. We would rather have seen a resolution that could give the beginning of a response, not only for fibromyalgia patients but also for people with other unexplained physical complaints such as CVS/ME patients. Ultimately, the problem of these patients is similar and we want to see a solution for this group of patients as well.

The very first problem that arises is the difficult diagnosis. This is problematic for several reasons. The diagnostic criteria are vague, the complaints are very diverse and the origin and development of these diseases are very aspecific. In addition, unexplained physical symptoms such as fibromyalgia and CVS/ME are rarely isolated. The difficult diagnosis creates tensions between patients and the outside world – some of which still think it is an imagined disease – tensions between the patient and the doctor, but also tensions between the doctors. This causes patients to be misunderstood, but above all they feel misunderstood. The latter is not to be underestimated in the further course of a possible rehabilitation.

Current medicine is still too much focused on one or/or-story. It is either physical or psychological, while it is just a story and/or a story. Like the presenters of this resolution, we agree that the treatment of patients with unexplained physical complaints should start from the biopsychosocial model but with a multidisciplinary approach. For this reason, we would have preferred to look at this resolution more extensively.

We have a number of important comments to this resolution in analogy with the resolution submitted by Senator Louis Ide. First, the presenters in the explanatory note also speak of transcending the evidence-based medicine approach. We resolutely oppose this. Exceeding an evidence-based medicine approach opens the door to all sorts of alternative treatments and increases the likelihood that so-called doctor scoryphes can more easily use a master discourse in which the seeking and sometimes desperate patient receives additional attention but eventually becomes the biggest victim. Just to avoid that, we require a strict evidence-based medicine approach. In this sense, we submit an amendment that should support this evidence-based medicine approach. Yesterday, the KCE made extensive notification of the ineffectiveness of certain alternative medicines.

A second note concerns the completion of the biopsychosocial model. This model assumes that the treatment takes into account both the physical, psychological and social factors that determine the origin, development and persistence of the disease. It is therefore that we here again make a call and submit an amendment to ask the government to finally work on the recognition of clinical psychology. If one speaks of a multidisciplinary approach, as in this resolution, and if one speaks of the biopsychosocial model, then one speaks of a collaboration between general practitioners, first-line health workers, doctor-specialists, kinesiologists and so on. But then we also talk about the treatment on the psychological and social aspects of this disorder.

The role of the clinical psychologist, who can play an important role here, should therefore not be overlooked. It is therefore incomprehensible in this sense that our amendment, to call on the government to work on the recognition of the clinical psychologist, was not accepted. Even one party, which itself submitted a bill in that sense, voted against in the committee. Everyone will now have the opportunity to react by approving this amendment. I hope that this opportunity is seized.

As far as we are concerned, although the current version is better than the first, this resolution places too much emphasis on pain and combating it. Pain is indeed the main symptom of fibromyalgia, but by focusing only on it, the concept of bio-psychosocial model is too unilaterally filled in. In addition, the classic painkillers do not help because the pain has a different origin than a normal pain that everyone knows. We do not deny the need for a structural approach to pain control and the necessary training, but rather see this in a global approach to the pathology.

Another note concerns the role of the general physician, which is mentioned in the resolution but not sufficiently emphasized. The doctor is the first point of contact for the patient. He will assess the complaints, also based on the medical record. He should also be able to remain a coordinator throughout the whole process, in our opinion. This creates a transmural policy that is organized bottom-up, from the first line to the second and third line.

That being said, we recognize that this will require awareness and specific, additional training from the general physicians. The general physician should therefore be remunerated for taking up that central role, but not as proposed by the applicants by increasing the duration of the consultation. The doctor is not a psychotherapist. By extending the duration of the consultation, it gives the impression that everyone is able, provided a long session, to undertake psychotherapy, which of course is not the case. Psychotherapy requires separate and thorough training, and recognition.

We support the demand for structural and adequate financing of the reference centres, which hopefully will shorten the waiting lists and optimize the treatment.

Investing in these reference centers will also save on other areas, such as visiting unnecessarily many doctors, and will also reduce the chance that people visit so-called miracle doctors in order to consult.

Mr. Speaker, colleagues, the resolution as it is now on the table can mean a step forward for, unfortunately, only fibromyalgia patients. I know that small steps can also be valuable, but in the resolution as she now predicts, the feeling of a missed opportunity prevails, a missed opportunity to help all patients with inexplicable physical complaints, but also a missed opportunity to recognize the role of the clinical psychologist and the general physician in the treatment of this condition.

Therefore, I also dare to call on all parties here to support our amendments, which we re-submit here. It can only make sure that the fibromyalgia patients more than now would benefit from this resolution.

This resolution is the result of a work initiated in this House for several years. We can therefore only welcome the completion of this work and the implementation of this resolution.

You should know that living with this fibromyalgia syndrome is extremely heavy on a daily basis. Chronic pain and the multiple consequences of this disease can significantly decrease the actions of patients in everyday life. Even today, many people do not want to accept fibromyalgia as a clinical picture. It is especially on the side of insurance medicine that it is sometimes mentioned that such a diagnosis would encourage and perpetuate the morbid behavior of patients with this pathology. Some even doubt the existence of fibromyalgia as a morbid entity. This disease is often unrecognized. It is in fact invisible, often incomprehensible, hardly objectivable and therefore heavily subject to controversy, while it is above all terribly invalidating.

As I have repeated several times in the committee, this disease could almost be compared to migraine which is an extremely disabled disease that one can unfortunately not see on a daily basis. People with real migraine are sometimes forced to retreat for more than a day, to be completely isolated in a dark room. This contributes to non-functionality and a labor deficit for these people on a daily basis.

This explains the importance of our political approach. We recognize fibromyalgia as a disease that deserves to be treated appropriately. In this sense, the eight recommendations contained in the resolution are rejected. More personally, I would like to point out that this resolution is for me just a step in setting up a process of taking care of patients with fibromyalgia. Indeed, when we question people with fibromyalgia, we realize that, despite the resolution we will take today, we will not be able to reach the wishes of patients dependent on this pathology.

It is also important that the diagnosis is made as early as possible as this is the only way that the patient has to feel understood and recognized and not to pass for a kind of imaginary sick or even "bitter"!

The diagnosis of fibromyalgia should be a step-by-step for realistic and pragmatic therapeutic care in which the patient is actively involved.

That is why this resolution also provides recommendations for health professionals to optimize medical care.

In the end, we also know that the problem of fibromyalgia is essentially related to a lack of scientific data on this syndrome, its methods of diagnosis and treatment.

That is why I consider it important to encourage and support financially, in particular the participation of the Belgian medical and scientific world in research and information exchange programmes both national and international on this disease.

By adopting this resolution, the House sends a strong political signal to the Minister of Health with a view to taking care of this disease. Of course, the group is delighted. And it is with particular attention, Mrs. Minister, that we will monitor the implementation of this resolution so that it can ⁇ the objectives assigned to it for the benefit of patients.

Colleagues, we have substantially some problems with the present resolution, not because we would doubt the severity of the disease and its physical and emotional consequences. We find, as several colleagues have already cited, that the resolution adopts a somewhat narrow approach in various areas. I will give a few arguments.

Initially, we find that the resolution comes too much from a pathology financing and too little from a patient financing. This is also reflected in various suggestions and explanations from various colleagues and we find that is not the right attitude. These are patients with a very diverse disease picture. Therefore, we find it important to leave from the patient and much less from the pathology itself.

We would also have preferred to see the whole debate wider and also discussed the problem of the patients with CVS/ME, of which although not all the elements, but yet many are similar. Also on reference centers, application and treatment methods, it would have been a much more interesting discussion if we had conducted it together.

What our party also has a problem with is that the emphasis is strongly placed on the structural financing of reference centers, while those working mainly on the basis of a psychosocial approach and much less on the basis of neurological and other components. Some studies, by the way, conclude that the psychosocial approach works only in a few patients and not in a large number of patients. Therefore, we regret that the resolution does not speak of a more multidisciplinary approach in the field.

Like colleague Beuselinck, we really find it a missed opportunity that one does not look wider and, for example, does not advocate for care teams where one engages the first and second line care to the maximum. It focuses too much on the financing of the reference centers and too little on the base, which forms the first and second line. For those arguments which are quite essential to us, our group will abstain when voting on the draft resolution.

The draft resolution on fibromyalgia was discussed for several weeks in the Public Health Committee. I thought it was a very good debate. It was also a very lively debate.

The report has already been submitted by Mr Seminara. Several comments have already been cited. I want to clarify a few things and correct a few things.

The reason for this resolution was a colloquium here in Parliament. It was called “A Different Look at Fibromyalgia.” It took place in the previous legislature, at the end of April 2009. The initiators were Mrs. Gerkens and myself, but also Mrs. Avontroodt of Open Vld. We then heard a number of experts: pain centers, specialists, patient associations. This resulted in a resolution. You know that elections are sometimes tough. Ms. Avontroodt was not re-elected. We found support from other colleagues. I want to thank those people: Mrs. Burgeon, Mr. Thiéry, Mrs. Almaci, but also, for example, Mrs. Fonck and Mrs. Van Den Ende, who took their own initiative because they are closely involved in this disease.

For those people who have not followed the commission – because I see some looking: fibromyalgia, what is it? – I explain that fibromyalgia is a chronic muscle and connective tissue disease. These people have chronic pain, which is very often accompanied by fatigue and sleep disorders due to the pain they have, and also often spontaneously emerging pain.

This is not a rheumatic disorder, for example, it is not about inflammation. The pain – which is important – is caused by a disruption of the central nervous system, resulting in a too low pain threshold. More importantly, traditional treatments – I think of the usual painkillers – do little or nothing because the pain does not come from the peripheral nervous system.

Since it is a fluctuating condition, and the diagnosis requires insight and time – something that today turns out to be a problem – the symptoms in the patient’s environment often arouse misunderstanding.

Ms. Almaci and I have recently, during the committee debates, deliberately visited the University Hospital of Antwerp. We had a conversation there with Dr. Guy Hans, who in Belgium and ⁇ in Flanders is considered the expert when it comes to pain centers and treatment of pain. He is the coordinator of the multidisciplinary pain center there in the UZA.

Dr. Hans said the resolution makes sense for a number of reasons. In the end, it is about 300,000 people who suffer from this disease. Recognizing it too late and incorrect treatment of the disease can lead to a withdrawal from social and professional life. This is something that he believes can be avoided. This can be done primarily by the rapid recognition of the disease by the general doctor. I would like to say to Mr. Beuselinck that we really took the role of the general doctor into the discussion. Second, it can then initiate a multidisciplinary approach.

Fibromyalgia patients, in the absence of recognition, can now not go to a single center for a complete therapy. They must go continuously from one specialist to the other. In addition, the pain centers have to deal with immense waiting lists.

I can only speak here about the University Hospital of Antwerp. The doctor himself has noted that patients only arrive at the earliest after six months for a first consultation. After that, it usually takes another five months before there is room to start the treatment. He indicates that the treatment should be normal continuously. However, you also know that when there are waiting lists, it is extremely difficult to perform a proper treatment.

In addition to, among other things, a awareness-raising campaign and more structural support for the pain centers in our country, we therefore in the present resolution also call for more attention to the shortage of specialized pine doctors, nurses and psychologists.

Dr. Hans confirms that CVS is a different condition than fibromyalgia, something that is important for some members, both in the committee and in the plenary session. It also requires – this is extremely important – a different global approach. The confusion on the subject is sometimes that it is stated that the disease should be considered as a whole. No, the experts in the field themselves indicate that it is about pain control. It is a disease in which pain really plays the main role, which is not the case with CVS.

For the aforementioned reason, I, together with Mrs. Gerkens and then also Mrs. Avontroodt and now also the other members involved, have consciously chosen not to link the two disorders together in one resolution.

One and the other, of course, does not take away that we are also immensely affectionate to the other disorder, CVS. I therefore propose that we, with a number of members willing to do so, take a new initiative, to organize a round table also on CVS and to examine how CVS can be addressed in a good, global way.

In this regard, I extend my hand to, for example, Mrs. Maggie De Block of the Open Vld, to examine together how we can work around the matter in a strategically good way.

Today, like in the committee, we hope that a majority will support our resolution in the plenary session. After all, the sooner a pain therapy can be started, the better the effect is. This can prevent fibromyalgia patients from becoming socially isolated. Some patients may even be able to get a job again.

This is a noble goal. I hope, therefore, that the MEPs today will support this resolution.

Mr. Speaker, Mrs. Minister, colleagues, as already said by Mrs. Detiège, in our country about 300 000 patients suffer from the symptoms of what is described as fibromyalgia. This is an unnecessary group of patients. Although the disease was recognized by the World Health Organization in 1992 and a written statement on fibromyalgia was adopted by the European Parliament in 2011, there is still no scientific consensus on what this disease really is.

The condition is still established by excluding other diagnoses. The causes of the disease are unknown and there is no consistent treatment that has been scientifically proven to be effective.

From that latter conclusion, it is hardly acceptable that we, as members of parliament, of whom I know there are few doctors, will have to say how those people should be treated. This bridge is too far away.

On the other hand, as has already been said here, it is unacceptable that we should leave this group of people who are in pain and do not know where to be helped, to their fate.

We must look for the right way to diagnose the condition and the right way to set up a treatment. As a family doctor, I see people with this disease daily or weekly. You will not die of it, but you cannot live well with it. That is precisely the problem.

There are many related problems. You can no longer function in your family, you can no longer work, you can no longer feel well and you can no longer participate in social life. There is misunderstanding, there are financial problems and many other things.

For us, it is therefore essential that we invest continuously in research into the causes of this condition and into the possibilities to obtain an effective treatment.

That assumes that, as far as we are concerned, we can only invest in evidence-based treatments. Therefore, we have submitted an amendment in the committee, at the request of Ms. Somers, to extend the reference centers for chronic fatigue syndrome to patients with fibromyalgia and other patients with unexplained medical conditions. This allows us to collect data, conduct research and seek treatment using evidence-based data.

I think that Parliament should not itself choose the treatment of a disease, a syndrome or a condition which, though recognized – one has put a name on it – but for which for the rest there is nothing about conscience. I therefore think that the expertise in the reference centers could be present to work on that further.

There is also a whole group of other patients. It is said here by Mrs. Detiège: patients with CVS are not the same as those with fibromyalgia. That is true, but there is also a whole group who still sits with the rheumatologist or with the physiotherapist, or who may be seeking their salvation in acupuncture. They do not know where to seek help, because they do not know what they have. It is unacceptable that, with the current state of science, so many people must continue to move in the schemer zone.

It is not up to us to make the choice, it is up to us to draw attention to it and say that the necessary funds must be found to deal with it.

In the past, I have been very critical about the reference centers, the waiting lists and the fact that people often drop off because it is too often, too far and too difficult. Therefore, I have always tried in a positive way to update and improve that function. I think more can be done in connection with the work that is done there and that is multidisciplinary, for example with the help of a psychologist and thanks to more support.

It’s not really about more cents, it’s actually about the patients themselves, who need to be helped. We think that it is first and foremost the general physician, who should direct and guide the patient in his search for the correct diagnosis and the correct treatment.

I read in the report that a lot of emphasis was placed on pain. The pain is very important. Of course, the pain that these patients experience is sometimes unbearable. The pain was also repeated in the hearings. However, there is more than pain. It is the loss of the fact that one can function normally in society.

Finally, I recall the clear statements made by the representative of the Minister that the recognition of the disease and the debate on it held in the RIZIV should not be seen as a two ex machina, which will lead to solutions to all problems. We are indeed still far away from that. It is important that everyone continues to make efforts at their level and that the symposium and the present resolution have called for attention to the disease.

This is not enough, the patients earn more. For the reasons I have just explained, we also cannot endorse all parts of the resolution. We don’t want to make people happy with a dead mouse. We will therefore refrain from the vote as a signal.

Mr. Speaker, Mrs. Minister, colleagues, also our group is very pleased that this resolution pays extra attention to fibromyalgia patients, that it also recognizes fibromyalgia syndrome in us, and that a better comprehensive treatment is considered. Even if we abstain from voting, I do not want to have any doubts about this.

We regret, however, from the beginning of the discussions in the committee that the resolution is rather vague and that the same attention was not immediately wanted to be paid to CVS/ME.

Myalgic encephalomyelitis has been recognized as a syndrome by the World Health Organization since 1969, but enjoys even less recognition than fibromyalgia. Although CVS patients have other pronounced symptoms, it is indeed a different syndrome, but they have generally the same problem as fibromyalgia patients.

One of the reasons why one did not want to link both files together is because there would be broad consensus on fibromyalgia and not on CVS. This may have been the case at the colloquium “Another View on Fibromyalgia” held on 20 April 2009 in the Federal Parliament and in which this resolution finally found its origin, but if one places his ear to listen to patient organisations – also the Dutch-speaking because apparently there is a difference of opinion on both sides of the language border – then one learns that both CVS and fibromyalgia, especially in the pain centers and in the reference centers, too much attention is paid to the psychological aspect and the psychological approach and too little to the biomedical, endocrine and physical aspect of the disease, both in the treatment and in the diagnosis.

Patient organisations therefore request a separate institution, a separate centre for diagnosis, separate from the existing, existing pain centers and reference centers. Our group will therefore submit an amendment to the resolution in this sense.

The resolution is indeed, as has already been said, a step in the right direction, but it is too vague, too unilateral and all too limited. We can only hope that the government will pay sufficient attention to the patient’s suggestion, the latest international studies, the proposed therapies and diagnostics, and that ME/CFS patients will also be able to enjoy the same attention as the fibromyalgia patients.

I would like to accept the invitation of Mrs. Detiège and ask my colleagues to support our resolution.

Mr. Speaker, Ladies and Gentlemen, I will be concise. Indeed, as my colleague recalled in his maiden speech, the commission has already long worked on this issue. I just want to use this tribune to deliver two messages. The first is intended for patients, for all those people who often suffer in silence – and for some in terrible isolation – of this very particular syndrome, fibromyalgia. I hope that the vote of this text will help to bring out of the shadow those women and those men who, today, do not dare to say that they suffer, do not dare to go to the doctor once again to hear themselves say that their ills are imaginary.

Can I ask you to make a little less noise for Mrs. Burgeon?

Especially because I will be very brief. The other message is addressed this time to the medical world and more specifically to the general physicians. I know very well that their task is difficult, that the diagnosis of fibromyalgia is delicate, that they often lack time to listen to these patients but the fibromyalgia syndrome, which is internationally recognized, once diagnosed and treated properly, leaves people with fibromyalgia to lead a almost normal life.

And it is in this sense that with my colleagues Ms. Gerkens and Detiège and Mr. Thierry has submitted this text. If this disease finally gets more known, society will win because the patients who suffer from it, instead of being socially degraded as it is unfortunately the case today, will gradually regain place in society, in their work, their family and their circle of friends.

By approving this text, Parliament will thus give this clear message: yes, fibromyalgia is a disease; yes, people with fibromyalgia deserve care and attention; yes, financial resources must be provided for medical research to advance in this area.

It is therefore with great hope that my group will vote in favour of this text which will – I hope – be widely supported.

Mr. Speaker, ladies and gentlemen, my group welcomes the adoption of the proposal for a resolution aimed at recognizing fibromyalgia and improving patient support and guidance.

Although recognized as a disease by the WHO since 1992, fibromyalgia is still not listed in the official catalog of recognized diseases in Belgium and Europe.

This invisible disability, which is characterized by diffuse pain, effort fatigue and non-reparative sleep, is also accompanied by a variable series of other symptoms such as digestive disorders, headaches, memory loss, and I pass. Symptoms that often lead to the exclusion of patients from social life, the world of work and their families, and that make the diagnosis of this disease sometimes difficult to establish by the medical body. As a result, the patient often feels abandoned and no longer knows exactly who to turn to.

As recalled in the report, after organizing a colloquium on chronic pain, the CDH had already proposed, under previous legislatures, text resolutions aiming not only to recognize fibromyalgia as a chronic disease but also to provide adequate funding as well as a continuous and multidisciplinary care pathway integrating into a so-called biopsychosocial model. It was also planned to better train health actors to the reality of patients suffering from chronic pain.

As recalled by Mr. Beuselinck, as regards the extension to patients with diffuse pain and chronic fatigue syndrome, our non-adherence to the submitted amendments does not mean that special attention should not be paid to patients or that adequate care is not needed.

But we do not find it appropriate to mix different situations.

Furthermore, we are also in favor of advances in the clinical psychology part but not only in fibromyalgia. This was the meaning of the bill that was submitted.

Thus, my group welcomes the adoption of this resolution that directly targets 2.5% of the population, or about 300,000 Belgian patients with fibromyalgia.

Mr. Speaker, Mrs. Minister, dear colleagues, before I begin my speech, I would like to thank all the colleagues in the Public Health Committee who agreed to work on this resolution and who allowed us to reach the document that is submitted to you today.

I would like to be brief and not repeat everything that has already been said. However, I will take the time to review the work path of this resolution. It has been several years since the reflection on fibromyalgia has been started with representatives of patients, representatives of doctors and other practitioners but especially patients who are affected.

It is clear that this resolution does not consider all diseases that are expressed by pain. It also does not treat all these unknown diseases that result in pain, or chronic fatigue syndrome. Why Why ? Because we are facing a large number of people: between 250 and 300,000 people suffer from this syndrome to which a name has been given, which represents 2.5% of the Belgian population. The subject is not entirely unknown. These patients are already cared for by a whole range of healthcare providers whose experience tells us that it is the multidisciplinary, multidisciplinary team and practice that allows to approach their reality, to try to find solutions and to participate in a research approach.

The resolution, in its final point, specifies that it is necessary to invest in a scientific research approach to try to find the best treatments – sometimes simply to find a treatment because there is no one – but also to work on the causes and patient support.

This point is separate from the others; indeed, who is best placed to conduct research? I don’t know it in terms of structure, but currently it’s practitioners, scientists and patients. This is an interactive work.

We do not want to impose a treatment method. Moreover, the resolution does not say this at all; it simply indicates the need for an intervention of a multidisciplinary team. She will not be the only one in the pain centers: general physicians, kinesiologists, psychologists, rheumatologists and other specialists can intervene. They are also taken into account, but struggle to establish diagnoses; often, they do so by elimination, and, in collaboration with patients, they must try to adapt treatments, accompanying and follow-up for more effectiveness.

This resolution highlights the positive element of the current situation, that is, the need to be multiple, to cross disciplines, to establish contact with the patient, to take time to talk to him during consultations. A long consultation with a generalist does not require him to play the role of a psychotherapist; it will last at least 15 to 20 minutes in order to leave enough time for the patient to express his symptoms, pain and functional disabilities he feels.

We introduce the psychological dimension and we talk about psychologist, psychotherapy necessary for these patients. But the fact of being a clinical psychologist, of introducing the reference to the recognised clinical psychologist is to be distinguished from a clinical psychologist therapist who can intervene.

This is a famous work that we have been looking at for several years. During the previous legislature, we tried to work on the recognition of the clinician, the orthopedic and the sexologist, but we failed. That’s why I do not ask for better that the Public Health committee refine on the subject, but by introducing the dimension of the psychotherapist, under conditions. We will work on it and put a lot of energy into it.

It was, therefore, neither interesting nor positive, since it brought no additional element, to speak of recognition of the status of the clinical psychologist, because psychologists represent only a fraction of the therapists. Not all clinicians are. And, on the other hand, in the centers of pain as in the hospitals – these are also those centers of which we are talking – there is, of course, recourse to therapists, who are trained, who are recognized as psychologists. However, even if they are approved by the INAMI, this does not equate to a recognition of the title. I think we’re cautious and that doesn’t open the door to parallel and “magic” medicines, what you seem to say.

There is one last element that I do not understand too much among the critics. We are faced with a syndrome, which is recognized and for which we do not control the holders and finishes, which does not allow to offer many solutions. “We need to be able to do research and work in a multidisciplinary team,” he said. Furthermore, Mr Beuselinck and Mrs De Block, you want to introduce the reference to Evidence Based Medicine. It is still too early, I think.

On the other hand, it is important that patients, providers and scientists work together to conduct research. So it will come out, I hope one day, a way, a path and good practices that can be recommended. But already now to say that we are going to refer to it, is again to limit the openness that is necessary to have towards these patients.

These are the comments I wanted to make to complement the interventions of my colleagues and react to amendments that I do not want to hold back!

Patients with chronic fatigue deserve our attention. We must take the time to work on this topic in a specific way, as well as for people with pain.

I also wanted to say that things have evolved. In April 2009, during our conference at which representatives of the various political groups and the minister attended, we had made a finding. Meanwhile, the plan prioritizing people with chronic illness has also brought advances and prospects. Patients with fibromyalgia were asked to express their difficulties. The resolution therefore refers to this Chronic Diseases plan, so that people with fibromyalgia can be assisted both in access to refund and in more specific care that still needs to be developed in the plan. It is about paying more special attention to them and assisting them in their steps, both recognition of disability, disability, functional disability. There is still a road to go, and that is what we intended to say in this resolution.

One last element concerns me and that is why we insisted that this resolution be dealt with. It is that fibromyalgia affected – to put it imperfectly – mostly and almost exclusively women. It is now seen that men are suffering from fibromyalgia but also adolescents and children. From the moment adolescents and children have these syndromes, it means that children are already experiencing unbearable suffering today and that they will develop even greater functional disabilities. Therefore, it is necessary to put energy in the search for good practices but also in the search for the causes of this disease. It is not normal for adolescents and children to develop these syndromes and suffer from them.

Finally, I would like to thank the colleagues for the joint work that has been provided and the Minister for the contribution she has provided.