Guido den Broeder

Photo: Dutch Casting Agency (2017)

Guido den Broeder (Den Haag, 28 February 1957) is a Dutch advocate and a myalgic encephalomyelitis patient (since 1987). He lives in Rotterdam, the Netherlands.

Career

Den Broeder developed the macro-econometric model AMO-K, which for some 15 years was used to study a number of strategic policy scenarios for The Netherlands. From 1990-1995, he was a member of the Economic Committee of the Dutch political party GroenLinks. He was a representative in Rotterdam from 1994 to 2002.

On 1 April 2015, as a protest move, he declared his Rotterdam home as part of a micronation, Paraduin. This was after The Netherlands denied him welfare and the Dutch court refused to hear his case leaving him without means to survive.

Den Broeder was an executive producer of the film The Russian Bride, released in 2019. It features a desperate father going to extreme lengths to find a cure for his son, who suffers from a mitochondrial disease.

Advocacy

On May 12, 1987, Den Broeder fell ill with myalgic encephalomyelitis, and never recovered. The diagnosis arrived at his house while he was playing a chess tournament in Hungary in 1990, where he succumbed to exhaustion halfway the event. During the years that followed, he tried but failed to receive disability benefits, despite having been fully insured.

In a letter to GroenLinks chairman Ab Harrewijn, 1996, Den Broeder asked for political attention to the plight of ME patients in the Netherlands. A budget of € 2.72 million (6 million gulden) was eventually set aside by Dutch parliament for biomedical research into ME. However, after the Gezondheidsraad produced an advice on Chronic Fatigue Syndrome (CFS) in 2005, the money was spent on studies into cognitive behavioral therapy (CBT) and graded exercise therapy (GET) for CFS patients.

In 2004 Den Broeder was one of the leaders of a patient revolt against the board of the government-subsidized ME/CVS-Stichting Nederland, which denied ME and CFS patients influence on the foundation's positions and activities. To give patients a voice and counter the foundation's propaganda of CBT/GET, he co-founded the ME en CVS Vereniging in 2005, later renamed to ME/CVS Vereniging. As a chairmain (two periods) and guideline representative, he educated patients and doctors about the difference between ME and CFS. He furthermore criticised the publications of the Dutch Health Council and the decisions of the Dutch minister of health.

When in 2011 the International Consensus Criteria for ME were published and CFS got classified away from ME in the ICD10-CM (published in 2015), the decision was made to disband the ME/CVS Vereniging. Den Broeder founded the ME Vereniging Nederland, the national patient organization for ME in the Netherlands. He has served as chairman until this day. Also in 2011, he founded and became president of the Stichting ME Research, a foundation whose purpose is to conduct, promote and interpret research into myalgic encephalomyelitis. He initiated several ongoing projects, including Wetenschap voor Patiënten (Science for Patients). Den Broeder's YouTube channel DossierME shows presentations and interviews from that project.

Den Broeder is a basic income advocate, and served as a board member of the Vereniging Basisinkomen for 13 years. On several occasions he has suggested that ME patients would profit from the introduction of a basic income, leaving behind the 'unfavorable lottery' that the current system for disability benefits has to offer. Findings by the Stichting ME Research indicate that half of the ME patients in The Netherlands have no or insufficient income.

Together with Wendy Boutilier and John Gabor, Den Broeder founded the international group Global Advocates for Myalgic Encephalomyelitis in 2016. GAME supports the application of the International Consensus Criteria for ME.

Education

• 1981 Drs in econometrics, Erasmus University Rotterdam

Interviews & Talks

• 2003 "Van willekeur naar basisinkomen", Attac-lecture, Den Haag, 25 February
• 2009 "Petitie Myalgische Encefalomyelitis aan de vaste commissie VWS van de Tweede Kamer", speech, ErkenME, 12 May
• 2010 "Ervaringen met behandelingen bij ME/CVS", presentation, Landelijke ME informatiedag, Amersfoort, 8 September
• 2011 "Knelpunten in de zorg voor ME-patiënten", presentation, Landelijke ME informatiedag, Driebergen, 12 May
• 2013 Wetenschap voor Patiënten, interview, DossierME, 21 June
• 2014 "Preconcept Multidisciplinaire Richtlijn ME", presentation, Landelijke ME informatiedag, Utrecht, 12 May
• 2015 "Basisinkomen voor chronisch zieken en mensen met een beperking", presentation, PG Werkt Samen, 30 April
• 2016 "Gezondheidsraad - hoe anders", presentation, Landelijke ME informatiedag, Den Haag, 12 May
• 2016 Gezond en Wel, interview, GL8 media, 18 November
• 2018 "ME-patiënt Guido kritisch over erkenning ziekte: 'Nieuwe criteria onbekend'", interview, RTL Nieuws, 19 March
• 2019 "Patiëntenorganisaties ME/CVS", presentation, Commissie VWS, Tweede Kamer, 27 March

Publications

Myalgic encephalomyelitis

• 2006 "Zorgindicatie", Lees ME 1, December, p50-51
• 2007 "Richtlijnen en Knelpunten voor ME/CVS", Lees ME 2, May, p10-15
• 2007 "De ontwikkeling van een Multidisciplinaire Richtlijn ME/CVS", Lees ME 3, October, p12-14
• 2008 "Richtlijn in beslissend stadium", Lees ME 4, March, p11-14
• 2008 "Richtlijn loopt vast, kerngroep vervangen", Lees ME 5, July, p11
• 2008 "Testen op ME/CVS. Deel 1: de klachten", Lees ME 5, July, p37-41
• 2008 "Testen op ME/CVS. Deel 2: de ziekte", Lees ME 6, December, p28-31
• 2009 "Onderzoek NIVEL legt tekortschieten zorg bloot", Lees ME 7, April, p16-19
• 2009 "Petitie Myalgische Encefalomyelitis aan de vaste commissie VWS van de Tweede Kamer", ErkenME, 12 May
• 2009 "Smurf!", LeesME 9, December, p13-15
• 2010 "De boom valt en niemand luistert", column, Lees ME 11, October
• 2011 "Keuringspraktijk UWV. Inspectie Werk en Inkomen: bandbreedte in claimbeoordeling", Lees ME 12, February, p11-13
• 2014 "Doorlopende Enquête Patiёntenperspectief 2012-2013", Stichting ME Research, 8 February
• 2014 "De postvirale hersenaandoening Myalgische Encefalomyelitis. Stand van zaken 2014", ME Vereniging Nederland, 29 March
• 2014 "Multidisciplinaire Richtlijn Myalgische Encefalomyelitis (preconcept)", Stichting ME Research, 6 May
• 2015 "NIH: 'Pathways to Prevention: Advancing the Research on Myalgic Encephalomyelitis / Chronic Fatigue Syndrome' (draft)", comments, ME Vereniging Nederland, 16 January
• 2015 "Tips voor nieuwe ME-patiënten", ME Vereniging Nederland, 27 January
• 2015 "Antwoord op vragen van de Gezondheidsraad", letter, ME Vereniging Nederland, 14 August
• 2015 "Doorlopende Enquête Patiёntenperspectief 2012-2014", Stichting ME Research, 9 September
• 2015 "Myalgische Encephalomyelitis (ME)", Mijn Lichaam, MediaPlanet, 16 September
• 2018 "Gezondheidsraad zet ME-patiënten op zijspoor", SeniorenWijzer, Spring
• 2019 "Blijft de ziekte ME een ondergeschoven kindje?", SeniorenWijzer, Summer, p24-25

Chronic Fatigue Syndrome

• 2006 "Advies inzake het ZonMW-Onderzoeksprogramma Chronisch Vermoeidheids Syndroom", ME/CVS Vereniging,
• 2006 "E. van de Putte, 'Exploring Chronic Fatigue Syndrome in Adolescents' (proefschrift)", book review, Lees ME 1, December, p42-45
• 2007 "Gezondheidsraad, 'Verzekeringsgeneeskundig protocol Chronische-vermoeidheidssyndroom'", book review, LeesME 2, May, p44-45
• 2007 "Advies aan ZonMw inzake de tweede ronde van het Onderzoeksprogramma CVS", May
• 2007 "NICE Guideline", review, Lees ME 3, October, p32-35
• 2009 "Chronischevermoeidheidssyndroom: een psychoneuro-immunologisch perspectief", comments, Tijdschrift voor Psychiatrie, October, p786-787
• 2010 "Het chronisch vermoeidheidssyndroom. De beoordeling door verzekeringsartsen", included comments, Inspectie Werk en Inkomen, Ministerie van Sociale Zaken en Werkgelegenheid, November
• 2012 "Commentaar op het concept van de CBO-richtlijn CVS", ME Vereniging Nederland, 12 April

Patient advocacy

• 2010 "De ME/CVS Vereniging", LeesME 10, May, p8-10
• 2012 "Samenwerkingsovereenkomst Samenwerkingsverband Pijnpatiënten naar één stem", December
• 2013 "Een meedenkende patiënt is een goedkope(re) patiënt", Manifest aan de Tweede Kamer, 15 October
• 2015 "Vrijheid in solidariteit. Een basisinkomen voor chronisch zieken en mensen met een beperking", Sociaal Bestek, June, p34-36
• 2017 "De stem van de patiënten en hun organisaties gehoord. Drie pleidooien aan de politiek van ruim 5 miljoen mensen met een aandoening", PatiëntenPerspectief 2021, 21 February

Online presence

• DossierME (YouTube)
• LinkedIn

See also

• Global Advocates for Myalgic Encephalomyelitis
• ME Vereniging Nederland
• Stichting ME Research

biomedical research basic medical research on organisms, such as humans or other living things, that helps increase medical knowledge. (Learn more: me-pedia.org)

cognitive behavioral therapy (CBT) - A type of psychotherapy geared toward modifying alleged unhealthy thinking, behaviors or illness beliefs. One of the treatment arms used in the controversial PACE trial.

graded exercise therapy (GET) - A gradual increase in exercise or activity, according to a pre-defined plan. Focuses on overcoming the patient's alleged unhelpful illness beliefs that exertion can exacerbate symptoms, rather than on reversing physical deconditioning. Considered controversial, and possibly harmful, in the treatment or management of ME. One of the treatment arms of the controversial PACE trial.

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

National Institutes of Health (NIH) - A set of biomedical research institutes operated by the U.S. government, under the auspices of the Department of Health and Human Services.

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

NICE guidelines Clinical guidelines used in the UK.