Belgium
I've been talking with Nancy from the Belgian ME Association about the situation in the country for ME patients
I fully recovered, got two children, a fulltime job and a weekend job in other words I felt fine.
In January 2004 I became ill again, after my youngest daughter came down with a viral pneumonia, I heard my mother had cancer and I was very busy at work. The first two years I got treated psychiatrically. The first care facility was a disaster and took away what was left of my energy, the following institution gave me a change to recover and find a way to cope with my new situation. After that the search for biomedical treatment started. Not an easy task! At first I only got GET and an IV with all sorts of vitamins and other supplements like magnesium. Later on I had to cancel this treatment due to migraine. The GET was stopped as well because my body could not handle it and I felt the power drain from my muscles. A few years later I was send to an endocrinologist. He checked NK-cells, leaky gut, thyroid gland, pituitary gland, blood flow in the brain, EEG, MRI, heart, neuro linguistic examination, etc. By then it was 2009. In 2012 I finally was referred to a neurologist specializing in ME. He diagnosed me with ME in 2016.
Getting Myalgic Encephalomyelitis changed my life completely. Things I used to do naturally, are not that obvious anymore. House work, is very difficult and takes an endless amount time and energy. Taking a bath or a shower means doing it and dry up afterwards. Ironing, cooking and washing the dishes is something my husband takes over. Standing up is very hard for me to do. Even taking a walk is difficult which doesn’t mean I sit around all day. I Once asked my neurologist if I had Alzheimer’s Disease because I had problems with my concentration, kept repeating what I said, my vocabulary had shrunk substantially and writing took forever. But he assured me that wasn’t the case.
In 2010 I attended a conference in Wezenmaal of the Belgian ME Association where they asked for volunteers. My husband accompanied me and I said, this is something I want to do! So I went up to the desk and said I wanted to join them. This changed my life completely, it gave purpose, a goal.
The Belgian ME Association is co-founder of the European ME Alliance, a grouping of European organisations who are involved in supporting patients suffering from Myalgic Encephalomyelitis (ME) and are campaigning for funding for biomedical research to provide treatments and cures for ME.
Life for an ME patient will never be the same, even when a cure is found. The way ME patients are treated changes them forever!
ME-Vereniging vzw. (Member of the European ME Alliance)
Goal:
CVS contact groep vzw.
Goal:
CVS/ME Liga
Goal:
CVS-Society
Goal:
Wake-Up Call Beweging vzw.
Goal:
In Belgium CFS is used instead of ME so for accuracy I will also use CFS instead of ME which is the preferred term.
Oct 2016
I've been talking with Nancy from the Belgian ME Association about the situation in the country for ME patients
- Introduction. How did you become ill? How were you diagnosed and how has the illness affected you?
I fully recovered, got two children, a fulltime job and a weekend job in other words I felt fine.
In January 2004 I became ill again, after my youngest daughter came down with a viral pneumonia, I heard my mother had cancer and I was very busy at work. The first two years I got treated psychiatrically. The first care facility was a disaster and took away what was left of my energy, the following institution gave me a change to recover and find a way to cope with my new situation. After that the search for biomedical treatment started. Not an easy task! At first I only got GET and an IV with all sorts of vitamins and other supplements like magnesium. Later on I had to cancel this treatment due to migraine. The GET was stopped as well because my body could not handle it and I felt the power drain from my muscles. A few years later I was send to an endocrinologist. He checked NK-cells, leaky gut, thyroid gland, pituitary gland, blood flow in the brain, EEG, MRI, heart, neuro linguistic examination, etc. By then it was 2009. In 2012 I finally was referred to a neurologist specializing in ME. He diagnosed me with ME in 2016.
Getting Myalgic Encephalomyelitis changed my life completely. Things I used to do naturally, are not that obvious anymore. House work, is very difficult and takes an endless amount time and energy. Taking a bath or a shower means doing it and dry up afterwards. Ironing, cooking and washing the dishes is something my husband takes over. Standing up is very hard for me to do. Even taking a walk is difficult which doesn’t mean I sit around all day. I Once asked my neurologist if I had Alzheimer’s Disease because I had problems with my concentration, kept repeating what I said, my vocabulary had shrunk substantially and writing took forever. But he assured me that wasn’t the case.
In 2010 I attended a conference in Wezenmaal of the Belgian ME Association where they asked for volunteers. My husband accompanied me and I said, this is something I want to do! So I went up to the desk and said I wanted to join them. This changed my life completely, it gave purpose, a goal.
The Belgian ME Association is co-founder of the European ME Alliance, a grouping of European organisations who are involved in supporting patients suffering from Myalgic Encephalomyelitis (ME) and are campaigning for funding for biomedical research to provide treatments and cures for ME.
Life for an ME patient will never be the same, even when a cure is found. The way ME patients are treated changes them forever!
- Who are the Belgian ME Support Groups and Charities? What are their goals?
ME-Vereniging vzw. (Member of the European ME Alliance)
Goal:
- The ME Association raises awareness for myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS) and its social consequences.
- They pay close attention to the dissemination of information to patients, physicians, health professionals and policy makers.
- The organisation strives for recognition of the disease and suitable care for patients whilst there is no effective treatment available.
- At regular time intervals the ME Association organizes support groups.
- As a member you can call the ME help-line and find contact with others, to exchange information or just to talk.
- Currently there are support groups active in Antwerp, Hasselt, Ypres and Nieuwrode (near Leuven).
- There are also information sessions which are accessible for everyone, and we are allowed to offer accreditation at conferences.
- We work at regional, national and European level.
CVS contact groep vzw.
Goal:
- They aim at CFS and fibromyalgia patients and help them in their quest and make it possible to have mutual contacts.
- The association provides information about legitimate scientific research. Members receive the quarterly magazine “Immune” and get a free pass at the organized meetings in Flanders East and West.
- They also work together with the Flemish Pain League.
- In their tour through Flanders they said to the patients: “Where there is a will, there is a way”. Suggesting that patients did not want to get better.
CVS/ME Liga
Goal:
- They provide information on all aspect of CFS/ME to people with the disease and to other persons and bodies.
- They promote contact between people with CFS/ME and defend the interests of people with the disease where possible.
- They want to familiarise doctors, health professionals and policy makers with CFS/ME.
CVS-Society
Goal:
- They want to inform a wide audience about ME/CFS with different views and look for positive testimonials from patients who have found a form of recovery. In some cases this certainly succeeds more or less.
- They believe improvement is possible but you do not have to feel guilty if you fail, sometimes the disruption in your body is too large.
- They also state not to believe those who claim there can be no improvement under no circumstances. The group believes in an “and-and” story (not “if”), a biomedical approach (depth) in combination with psychological support. (Mind and body are one).
- They tend to promote the Alexander Concept and stated in their lecture for doctors that when it did not work, you were not dedicated enough to the therapy.
Wake-Up Call Beweging vzw.
Goal:
- Their mission is to create more public awareness about the severity of the neurological disease ME and CFS, and dismantle the stigma attached to CFS.
- The message they want to bring is that patients are already more than 20 years victims of mismanagement due to weak diagnostic protocols and a dogmatic vision by the policy makers about the causes of CFS.
- Therefor they wish to warn extensively against the pitfalls that accompany a diagnosis of CFS and try to stop the medical neglect of CFS patients.
- General welfare of persons with CFS & ME is a top priority.
- Advocate for a quick policy intervention that takes into account the existing neuro-immune problems
- Support and attention for scientific research in general and in particular the Rituximab study from Norway
- Work towards raising awareness for this unjust situation at all levels
In Belgium CFS is used instead of ME so for accuracy I will also use CFS instead of ME which is the preferred term.
- Are there any doctors who might be interested in hearing about breakthroughs and research into ME?
- Yes, there certainly are! But out of fear of repercussions, a lot of them do not come out openly for their views. That is why the Belgian ME Association sends out their magazine with the latest scientific news to doctors, institutions, etc.
- Do you have any idea (rough guess) as to how many people in Belgium suffer with the illness?
- Belgium has about 11.250.000 citizens (January 2016). Generally is been thought that there are between 20.000 en 40.000 patients in Belgium. Since there is no registry for ME patients in our country it is very difficult to give an reliable number.
- Looking at it from a scientific angle however there should be between 0,1 % and 1,0 % ME patients, depending on the used diagnostic criteria.
- This should mean between 11.000 and 112.000 ME patients in Belgium.
- How do Doctors and the government perceive ME in Belgium?
- ME is being perceived as a psychological disorder treated with CBT and GET despite the fact that the KCE (Federal Knowledge Centre for Health) issued a report in 2008 stating that this therapy given in the reference centres, wasn’t effective. KCE reports 88A (https://kce.fgov.be/sites/default/files/page_documents/d20081027358.pdf). The successor, the “Rehabilitation Agreement” has to be assessed but already showed problems from the start. The Flemish Association for Clinical Psychologists refused their cooperation because of the following reasons:
- There is only one specific behaviour therapy protocol allowed to be implemented. If a therapist chooses to use a different protocol he/she will not get paid. Apparently the National Institute for Health and Disability Insurance (RIZIV) assumed that all patients with ‘CFS’ are the same, which isn’t the case of course. They also wanted a higher pay rate for their consultation time.
- Doctors who treat ME differently (biomedically) encounter multiple problems
- Limited resources, budget cuts with regards to treatments, procedures for examinations, etc. Still they try to support patients in any way they can.
- Are the medical/government establishments funding biomedical research into ME? Are they interested in efforts to cure ME?
- There is very few interest in biomedical research in Belgium. Below are the ones registered on clinical trials.gov. Our country has a tendency to look at ME/CFS as a psychological disorder. Unless this way of thinking changes, it will be difficult to get biomedical research started.
- We once went to the University of Ghent with a project for biomedical research regarding ‘Inflammation in the brain of ME patients, based on the Nakatomi study’, and the professor we talked to, tried to change to scope of the project to prove CBT worked.
- It does not mean though that there aren’t any Belgian scientists doing research on ME/CFS. On the contrary, but if they do, it is in collaboration with other countries.
- ‘Sodium Oxybate in Patients With Chronic Fatigue Syndrome’ at University Hospital Ghent – Dr. An Mariman (link information clinical trial).
- ‘Pacing Activity Self-Management for Patients With Chronic Fatigue Syndrome’ at the Free University Brussels – Jo Nijs (Link information clinical trial).
- Nasal Continuous Positive Airway Pressure (CPAP) in Chronic Fatigue and Sleep-disordered Breathing – Dr. An Mariman (Link information clinical trial).
- How difficult is it to get a diagnosis?
- Getting diagnosed in Belgium usually takes a lot of time. With the available care facilities being ineffective and insufficient, patients with CFS have to wait sometimes years to receive a diagnosis.
- What is the current prescribed treatment for patients?
- The current prescribed treatment for CFS is CBT and GET, after having gone true the excluding of other diagnoses protocol.
- The University of Ghent provided a care path for patients with abnormal fatigue, CFS patients being a significant group of them. They assume that CFS patients feel the way they do because their illness has become part of their personality (Link to the information) because of lack of care.
- Luckily for patients, some clinicians do think of the disease as a biomedical condition. They however have very limited resources and are being restricted in their work.
- Does Belgium have any ME specialist centres/clinics for diagnosis and treatment of ME?
- The specialist centres/clinics for diagnosis and treatment for ME were/are based on CBT and GET.
- Other specialist centres, not CBT/GET-based, are not recognised by the government which means treatment has to be paid fully by the patient
- Are patients protected by the state/given benefits etc. for not working?
- Belgium has a good social security. To qualify for benefits you have to have 66% disability. But lately CFS patients are ‘motivated’ to go back to work or send to Civil Service Employment (RVA). CFS patients are scared and uncertain about the future. Not really sure of what will happen to them.
- Are ME patients/doctors aware of the ongoing Rituximab Trial in Norway? And the fight for the retraction of the UK PACE Trial?
- People/Patients active on the internet and Facebook are aware of what is going on regarding ME/CFS. But this probably is a minority.
- What would you like to see changed about treatments currently offered in Belgium?
- Firstly I would like understanding, change the way patients are dealt with. Have them be treated with respect and most of all been taking serious. Have their burden of stigma reduced and even removed.
- Secondly I would like research into the biomedical component of the disease (the brain, immunology, endocrinology, etc.) funded by the Belgian Government/Institutions or industry in coordination/collaboration/cooperation with EMERG (the European ME Research Group) who have a lot of expertise in on ME (CFS).
- Thirdly I would like the endorsement of world-wide accepted reliable and validated diagnostic criteria which would make it possible to make an early diagnosis (reduces stigma) and provide a homogeneous patient group for research purposes.
- What is the outlook for patients in Belgium? Are there reasons to feel positive, what can be done?
- Now that the PACE trial data has been released we might have a chance that CBT is being reconsidered. This because our therapy protocol is built on the results of the PACE trial.
- The most likely outcome being stopping the ‘Rehabilitation Agreements’ which will not automatically result in using the money for research.
- We will be in touch with politicians in the near future, at national and European level to create awareness and change.
Oct 2016