SFC/EM Investigación

State Secretary Bussemaker recognizes CFS as a chronic illness
Breakthrough for People with ME / CFS

Fuente: http://diagnosesupport.com/main/content/view/236/164/" onclick="window.open(this.href);return false;
Source: ME/CFS Netherlands Foundation (press release)
Date: January 18, 2010
url: http://www.me-cvs-stichting.nl/2660" onclick="window.open(this.href);return false;

State Secretary Jet Bussemaker of the Ministry of Health, Welfare and Sport (VWS) has accepted the advice of the Taskforce “Linschoten” to acknowledge Chronic Fatigue Syndrome (CFS, also known as ME) as a chronic illness. If the Dutch Parliament accepts her proposal (motion), all CFS patients in the Netherlands will finally be eligible for reimbursements in the framework of the WMO and the Law "Compensation For the Sick and Disabled" (WTCG – Dutch abbreviation). This law is meant to ensure that people can live in their own homes as long as possible (with care provided at their homes)

The "ME/CVS Foundation" in the Netherlands has advocated putting ME/CFS on the VWS list (the so-called Borst list) for chronic illnesses for years. Currently, people with ME/CFS are still excluded from aid services for chronically ill patients (disabled assistance). After many years of advocating, the foundation managed to put the issue high on the Dutch political agenda.

State Secretary Bussemaker asked an independent Task Force lead by former Secretary Robin Linschoten to examine which disorders should be considered for disabled assistance.

The Linschoten task force concluded in its final report that people with ME/CFS are unfairly excluded from the benefits of this law and advised the Secretary to include Chronic Fatigue Syndrome patients in the law. The State Secretary has informed the president of the Dutch parliament (Tweede Kamer) of this advice. The proposal will be discussed in parliament soon.

The "ME/CFS Foundation" in the Netherlands is very pleased that the experts and the State Secretary now recognize ME/CFS as a disabling, chronic disease and is confident this recognition will very soon be legally established.


Notes to the press release by Diagnose Support:

This article states the advice from the State Secretary to categorize ME/CFS as a chronic illness to the members of Parliament. This does not mean the legislation has already changed. The advice to do so is to be discussed in Parliament 'soon' as stated in the press release.

Nevertheless, any step towards acknowledging the physical impairments of ME/CFS patients is a huge milestone. The "Linschoten Taskforce" statement that "ME/CFS patients are 'unfairly excluded' from the benefits that come with the classification of ME/CFS as a chronic illness" itself is breaking news. Specifically, this means it will be easier for ME/CFS patients to obtain aids like crutches, wheelchairs, licenses for disabled parking etc. and in some cases extra financial support.

At this time it is unclear to us if it also means ME/CFS patients will be more entitled to a disability pension as a regular income. We also would like to raise the question which type of doctors' diagnosis will be accepted for both type of benefits.

Last but not least, by taking another step forward, maybe... just maybe ME/CFS will also be more eligible to receive funding for research.

Deduzco por el artículo que en Holanda hay una Ley de la Dependencia de la que hasta ahora se excluía a los SFC, y que ahora parece ser que está en trámite admitirse estos enfermos como candidatos a la aplicación de la Ley.

Por lo visto, no está aprobado por el parlamento, pero parece que va camino de ello. La Secretaria de Estado del ministerio de Salud, Asistencia y Deporte ha hecho la propuesta a instancia de un Grupo de Trabajo sobre SFC.

Dicen que no se sabe si tendrán derecho a cobrar pensión, pero por lo menos se reconocerá su derecho a ayudas para muletas, sillas de ruedas, aparcamientos para minusvalidos...

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La verdad, creo que es una gran noticia. Si no nos van a curar, por lo menos, que no hagan ver que no estamos enfermos o que lo nuestro no es grave.

Creo que hay novedades respecto a esto:
https://www.youtube.com/watch?time_cont ... blHrAka4dg

Me ha llegado via:
https://www.facebook.com/groups/113427572678279/

Es fantástico... la atención internacional se mueve, hablan de invertir en serio en investigación... ya va siendo hora!

Más información sobre esto:
https://www.gezondheidsraad.nl/en/task- ... zorg/mecfs

March 19th 2018
ME/CFS
People with ME/CFS are substantially limited in their functioning, for a longer period of time. Treatment cannot address the causes of the disease, due to lack of knowledge. Therefore, research is required, on pathogenesis, diagnosis and treatment. Furthermore, patients do not feel to be taken seriously, which hampers their recovery. Their limitations are often not fully recognized in the assessment of claims on income and other provisions. The Health Council recommends that health care providers be trained and medical assessors recognize that ME/CFS is accompanied by substantial limitations.

Executive summary
ME/CFS is a serious chronic disease that substantially limits the activities and quality of life of people suffering from it. Patients with ME/CFS have been campaigning for recognition and better treatment of their condition for years. In response to a citizens’ initiative, the Lower House asked the Health Council to provide insight into what is scientifically known about the disease and what developments are to be expected. The ME/CFS Committee investigated this subject. This committee consisted of experts from various fields and patient representatives. Different views on ME/CFS were represented.

The disease: symptoms, pathogenesis and diagnosis
People with ME/CFS suffer from a substantial reduction in the ability to engage in pre-illness levels of social and personal activities, which lasts longer than six months. They suffer from severe fatigue that is not caused by exertion and is not substantially alleviated by rest. Minor physical or mental effort can already exacerbate the complaints. Almost all patients have a disturbed sleep. Neurocognitive problems (concentration, memory, comprehension) and orthostatic intolerance (such as dizziness, nausea, headache, weakness) are also common. In addition, pain, fever and enhanced sensitivity are symptoms that may occur.
The committee notes that little is known with certainty about the pathogenesis of the disease. Various body systems can be involved, such as the immune system, metabolic system, cardiovascular system, central nervous system, neuroendocrine system, microbiome and genome. Therefore, it is called a ‘multisystem disease’. It is unclear how these systems interact in the development of ME/CFS. There may also be several diseases that fall under ME/CFS.
The diagnosis of ME/CFS is made based on symptoms. There is no agreement in the scientific literature on the criteria that should apply. The committee believes that the diagnostic criteria proposed in 2015 by the Institute of Medicine (currently: National Academy of Medicine) provide for the time being a good tool for practitioners.
As with the pathogenesis, there is little to say with certainty about the prevalence and the course of the disease. Presumably, there are 30,000 to 40,000 patients in the Netherlands with ME/CFS, most of whom are female. Their chance of spontaneous recovery is low.

Treatment of ME/CFS
Treatment of ME/CFS cannot be aimed at addressing the causes of the disease, due to lack of knowledge. However, sometimes it is possible to relieve the symptoms of the disease. It is important for the physician and patient to explore the options together. For example, patients may benefit from medicines such as sleeping pills, analgesics and agents that positively influence intestinal motility. The majority of the committee believes that cognitive behavioural therapy (CBT) can also be considered as an option for treatment. Four members take a different view. They indicate that many patients with ME/CFS have negative experiences with the therapy and object to the form of CBT for ME/CFS applied in the Netherlands.

ME/CFS in practice
Many physicians have preconceptions about ME/CFS and about the patients who suffer from it. They are inclined to suggest that the disease is psychological. As a result, patients do not experience empathy from their physicians and feel that they are not taken seriously, which does not improve their health and reinforces their social isolation. A survey from the Dutch ME/cfs Association reveals that 75% of the patients rate the quality of care as highly inadequate. Patients also frequently experience problems in the assessment of claims on income, care and other provisions because the limitations of their functional capabilities are not recognised. This is partly due to misinterpretation of the rules. Sometimes patients are found to be fit for work because an insurance physician believes that no physical abnormality can be proven or an unequivocal diagnosis cannot be made.
However, according to the applicable rules, these are not good reasons to disregard someone’s limitations. The point is that there is a consistent set of impairments, limitations and disabilities. The committee reiterates that ME/CFS is a serious disease that, by definition, generally leads to substantial restrictions on functional possibilities. Furthermore, the committee believes that patients must be free to decide whether to have CBT – or, in the Netherlands not or hardly used as a self-standing treatment for ME/CFS, graded exercise therapy (GET) – as part of their treatment. Not choosing for CBT or GET may not lead to the judgement that the patient misses his chance of recovery or is to blame for not cooperating in his/her recovery.

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

The Minister of Health, Welfare and Sport should commission ZonMw for a long-term, substantial research programme on ME/CFS. The research would primarily focus on substantiation of the diagnosis, pathogenesis and treatment of ME/CFS.
Those responsible for training and further education of healthcare providers should ensure that education and training highlight the serious, chronic, multisystem disease ME/CFS and what healthcare providers can do for patients with this disease.
The Federation of University Medical Centres and the healthcare insurers should designate a few university medical centres that – in collaboration with patient representatives, other hospitals, GPs, rehabilitation centres, sleep centres and other healthcare providers in the region – will open an outpatient clinic for ME/CFS, with associated healthcare networks and research groups.
Medical disability assessors within the context of private and social disability insurance, the Social Support and Provision Act and the Long-term Care Act should recognise that ME/CFS is a serious disease that is accompanied by substantial functional limitations, and they should not regard a patient’s decision to forego CBT or GET as inadequate recovery behaviour.

Un ejemplo de lucha y activismo

Un artículo sobre el mismo tema en Health Rising

https://www.healthrising.org/blog/2018/ ... e-cbt-get/

Traduccion de Google:

https://translate.googleusercontent.com ... qXZ2x5d-NQ

Gracias @Dandelion