Sundheds- og Ældreudvalget 2019-20
SUU Alm.del Bilag 150
Offentligt
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8.1.2020
Open Letter to Danish Health Politicians
On March 14th 2019, a unified Danish Parliament voted to acknowledge WHO’s diagnostic
classification of Myalgic Encephalomyelitis (ME - G93.3) as a biological illness and to separate
ME from Functional Disorders.
The proposal passed is aligned with the current international scientific knowledge about ME.
Based on analysis of more than 9.000 peer-reviewed studies, the Institute of Medicine
1
, Centers for
Disease Control (CDC), National Institutes of Health (NIH), as well as the advisory report from the
Dutch Health Council
2
, conclude that ME is a serious chronic multisystem, biological disease that
substantially limits the activities and quality of life of patients.
ME is a complex and physical disease for which there is currently no cure. It is not a psychological
or psychosomatic disease. There is strong scientific evidence of neurological/autonomic
dysfunction, immunologic and inflammatory pathologies, microbiome perturbation,
metabolic/mitochondrial as well as cardiac abnormalities (and more) in patients.
Based on this scientific evidence, there is an imminent need to change the narrative of ME to avoid
that patients are misdiagnosed or further stigmatized by falsely equating the disease with (chronic
or unexplained) fatigue, deconditioning or psychosomatic classifications, like functional disorders,
medically unexplained symptoms, somatoform disorders, somatic symptom disorder, functional
somatic syndrome, neurasthenia, or bodily distress disorder/syndrome.
Patients have for decades been prescribed treatments like Cognitive Behavioral Therapy (CBT) and
Graded Exercise Therapy (GET), based on the idea that they suffer from “false illness beliefs”, fear
of exercise or that they are deconditioned. This ‘deconditioning hypothesis’ as well as the
‘psychosomatic hypothesis’ of ME is not supported by biomedical research.
The treatments based on these hypotheses (CBT/GET) have produced no robust evidence in the past
two decades, as the US Agency for Healthcare Research and Quality systematic literature review,
and reanalysis of the largest ever study on CBT/GET (PACE trial)
3
have shown.
The CDC has recently removed its recommendations for CBT and GET from its website.
1
IOM 2015 report
2
https://www.gezondheidsraad.nl/en/task-and-procedure/areas-of-activity/optimale-gezondheidszorg/mecfs
3
https://bmcpsychology.biomedcentral.com/articles/10.1186/s40359-018-0218-3
SUU, Alm.del - 2019-20 - Bilag 150: Henvendelse af 8/1-20 fra ME Foreningen om behandlingstilbud til ME-patienter
Furthermore, and of dire importance, patients internationally for more than 20 years have
continually reported deterioration from following the advice of their doctors to gradually increase
their exertion levels based on a GET protocol.
Post-exertional malaise (PEM), a worsening of symptoms after minimal physical or mental
exertion, is the hallmark characteristic of the disease. GET worsens PEM and has the potential to
cause lasting harm for patients with ME.
There is international consensus that funding biomedical ME research is the only way to create
better insights into the physiological mechanisms of this debilitating disease, so we can provide
better and more efficient care, based on the needs of patients and the biomedical nature of the
disease, as well as effective treatments and potentially a cure. Biomarkers are also needed for
accurate diagnosis.
More funding for biomedical research into ME is therefore urgently needed.
We ask that the Danish Government will strongly consider a long-term investment in biomedical
ME research. It is an absolute priority and the only way to make the necessary progress to help stop
what the CDC calls a “hidden health crisis”.
We would be happy to provide you with further insights based on our expertise, if needed.
This letter has also been sent to the Minister of Higher Education and Science, as well as the Danish
Health Authority.
Sincerely
DENMARK
Kim Varming
Ledende overlæge
Klinisk Immunologisk Afdeling
Aalborg Universitetshospital
Rikke Katrine Jentoft Olsen, MSc, PhD
Associated Professor
Research Unit for Molecular Medicine
Department for Clinical Medicine
Aarhus University
Henrik Nielsen, MD, DMSC
Specialist i intern medicin og reumatology
Medlem af Radikale Venstres bestyrelse i Gentofte og Region Hovedstaden
MC Members of CA15111 - Member of European Network on Myalgic Encephalomyelitis/Chronic Fatigue
Syndrome (EUROMENE)
Jesper Mehlsen
Speciallæge
Klinik Mehlsen,
Peter Bangs Vej 7A, 2000 Frederikesberg
Seniorforsker
Enhed for Kirurgisk Patofysiologi
Juliane Marie Center
SUU, Alm.del - 2019-20 - Bilag 150: Henvendelse af 8/1-20 fra ME Foreningen om behandlingstilbud til ME-patienter
Rigshospitalet
Ana C. Gonzalez Ebsen 
PhD Student
Molekylær Medicinsk Forskningsenhed (MMF)
Aarhus University, Denmark
Ole Næsh Hendriksen
Speciallæge, dr.med.
Klinik Mehlsen
Peter Bangs Vej 7A
2000 Frederiksberg
Paula Fernandez Guerra, PhD, MSc
Biomedical researcher
Research Unit for Molecular Medicine
Aarhus University Hospital
Denmark
SWEDEN
Jonas Bergquist
Professor Uppsala University
MC Members of CA15111 - European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
(EUROMENE)
Sverige
Sture Eriksson
Associated Professor
Vice chairmen
Swedish RME Association
Bo C. Bertilson 
MD, PhD
Research leader Bragee clinics and Musculoskeletal functions and pain 

Div. Family Medicine and Primary Care, NVS 
Karolinska Institutet
Academic Primary Health care Center
Anders Rehnström
Specialistläkare
ME-Mottagningen
Stora Sköndal
Stockholm
Åsa Andersson
VD / Direktor
Stora Sköndal, Sverige
Sven Britton
Tidl. professor i infektionssjudomar
Karolinska Institutet
Sverige
SUU, Alm.del - 2019-20 - Bilag 150: Henvendelse af 8/1-20 fra ME Foreningen om behandlingstilbud til ME-patienter
Dr Per Julin,
MD, PhD
Institution for Neurobiology, Care Sciences and Society (NVS)
Karolinska Instituttet
https://medarbetare.ki.se/people/perjul
Senior Consultant
ME/CFS-policlinic, Neurological Rehabilitation Clinic
Stora Sköndal
https://www.storaskondal.se/vara-verksamheter/neurologisk_rehabilitering/mecfs-mottagning/
Expert in SBU (Swedish Agency for Health Technology Assessment and Assessment of Social Services)
review of ME/CFS:
https://www.sbu.se/en/publications/sbu-bereder/myalgic-encephalomyelitis-and-chronic-fatigue-syndrome-
mecfs/
Muhammad Rizwan
MS Infection Biology
Associate Researcher
Clinical Microbiology Uppsala University Hospital, Sweden
Petter Brodin
Senior Researcher & physician
Department of pediatrics
Karolinska University Hospital
Eirini Apostolou,
Ph.D
Dept. of Clin. & Exp. Med.
Division of Cell Biology
Linköping University
58185 Linköping
Sweden
Kumari Ubhayasekera (PhD)
Department of Chemistry-BMC
Uppsala University
Uppsla, Sweden
Carl-Gerhard Gottfries
Professor Emerritus of Psychiatry
Gottfries Clinic Krokslätts Torg 5,
43137 Mölndal
Wimal Ubhayasekera
Uppsala University
Uppsala, Sweeden
Björn Bragée, MD
Specialist in Pain Medicine,
Founder of ME-Center, Stockholm
SUU, Alm.del - 2019-20 - Bilag 150: Henvendelse af 8/1-20 fra ME Foreningen om behandlingstilbud til ME-patienter
NORWAY
Olav Mella Department director, professor
Department of Oncology and Medical Physics 

Haukeland University Hospital, Bergen, Norway
www.helse-bergen.no
Per Ole Iversen,
Professor
Department of Nutrition
University of Oslo,
P.O. Box 1046 Blindern, 0317 Oslo
Ola Saugstad
Professor emeritus MD, PhD, FRCPE
Professor of Pediatrics at the University of Oslo.
Director of Department of Pediatric Research
Consultant in Neonatology
Rikshospitalet, University of Oslo,
Norway
Kristian Sommerfelt
Pediatrician
MD, PhD. Professor
Haukeland University Hospital
University of Bergen
Bergen, Norway.
Tor Lea
Professor emeritus, PhD
Dept. of Chemistry, Biotechnology and Food Science
Norwegian University of Life Sciences
Ås, Norway
FINLAND
Olli Polo,
MD, PhD
Specialist in Pulmonary Medicine
Expert in Sleep Medicine
Tampere University Hospital, Tampere, Finland
Markku Partinen, MD, PhD, FAAN
Professor, Speclist in Neurology, Research Director
Somnologist, ESRS, Expert in Sleep Medicine
Helsinki Sleep Clinic, Vitalmed Research Centre
Helsinki, Finland
POLAND
Dr Pawel Zalewski
Nicolaus Copernicus University in Torun Collegium Medicum in Bydgoszcz
M. Sklodowskiej-Curie 9, Poland, Bydgoszcz
EUROMENE MC Member
SUU, Alm.del - 2019-20 - Bilag 150: Henvendelse af 8/1-20 fra ME Foreningen om behandlingstilbud til ME-patienter
GERMANY
Carmen Scheibenborgen
Professor Dr. Med, Leiterin Immundefekt-Ambulanz
FÄ für Hämatologie, Onkologie und Fachimmunologin. Charite,
Berlin
Uta Behrends Prof. Dr. med.
Pediatric hemooncologist
CFS policlinic
Children's Hospital
Technische Universitaet Muenchen
Munich
BELGIUM
Dr AM Uyttersprot
Neurologist CFS
Maria Theresialaan 33/6
1800 Vilvoorde, Belgium
NETHERLANDS
Prof Dr Frans C Visser,
cardiologist
ME/CFS specialist
Stichting CardioZorg
Planetenweg 5, 2132HN Hoofddorp, Holland
Dr C (Linda) MC van Campen,
cardiologist
ME/CFS specialist
Stichting CardioZorg
Planetenweg 5
2132HN Hoofddorp, Holland
UNITED KINGDOM
Dr Luis Nacul
Clinical Associate Professor,
London School of Hygiene and Tropical Medicine,
London UK
Dr Charles Shepherd MB BS
Hon Medical Advicer
ME Association
7 Apollo Office Court
Radclife Road, Buckingham
Dr Nigel Speight
Paediatrician
Durham, UK
Derek Pheby
Visiting Professor of Epidemiology,
Buckinghamshire New University,
SUU, Alm.del - 2019-20 - Bilag 150: Henvendelse af 8/1-20 fra ME Foreningen om behandlingstilbud til ME-patienter
High Wycombe, England,
MC Member of CA15111 - European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
(EUROMENE).
Dr. K.N. Hng
MBChB, MRCP, PG Cert in WBME, FHEA
Author of "M.E. and Me: A Doctor's Struggle with Chronic Fatigue Syndrome"
Professor Chris P Ponting
University of Edinburgh
MRC Human Genetics Unit
Dr Sarah Myhill,
Upper Weston,
Llangunllo, Knighton,
Powys LD7 1SL
Author of the book "Diagnosis and Treatment of Chronic Fatigue Syndrome and Myalgic Encephalitis"
Prof Simon Carding
Head, Gut Microbes and Health Research Programme
Quadram Institute Bioscience,
Norwich Research Park, NR4 7UA
Nina Muirhead BA(oxon) BMBCh(oxon)
MRCS DOHNS MEd PGDipDerm
Specialty Doctor in Dermatologic Surgery
Chair of CFS/ME Research Collaborative (CMRC) Education Working Group
Buckinghamshire
William Weir
Consultant Physician
London
Tom Wileman
Professor Molecular Virology
Quadram Institute Bioscience
University of East Anglia
Norwich Research Park
Norwich, NR4 7UQ
Dr Cara Tomas
Research associate,
Newcastle University,
Newcastle upon-Tyne, UK
SUU, Alm.del - 2019-20 - Bilag 150: Henvendelse af 8/1-20 fra ME Foreningen om behandlingstilbud til ME-patienter
Dr Penny Powell
Senior Lecturer in Cell and Molecular Virology
Norwich Medical School, University of East Anglia
Norwich Research Park
Norwich NR4 7TJ, UK
Dr Amolak S Bansal
Consultant in Clinical Immunology, allergy and CFS/ME
St Anthony's Hospital
Cheap, SM3 9DW,
England
Dr Ben Marsh
Consultant Neurodisability Paediatrician
Clinical Director Community Paediatrics
University Hospitals Plymouth NHS Trust
England
AUSTRIA
Francisco Westermeier
Institute of Biomedical Science
University of Applied Sciences, FH JOANNEUM
Graz, Austria
(CA15111) European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (EUROMENE)
Management Committee: Austria
ITALY
Professor Umberto Tirelli
Senior visiting scientist National Cancer Institute
Aviano Italy
Dr. Paolo Cornelio Brambilla
General Practitioner, Psychotherapist.
Italian delegate at European M.E. Alliance
Member of the Scientific Committee of CFS-ME ODV, Italy.
SPAIN
Dr Jose Alegre, MD; PhD
Vall d'Hebron University Hospital
ME/CFS Clinical Unit
Barcelona, Spain
Email:
[email protected]
SUU, Alm.del - 2019-20 - Bilag 150: Henvendelse af 8/1-20 fra ME Foreningen om behandlingstilbud til ME-patienter
Dr Jesús Castro, PhD
Vall d'Hebron University Hospital
Mediterranea Research Bldg (VHIR)
ME/CFS Research Unit
Barcelona, Spain
E-mail: [email protected]
ORCID: http://orcid.org/0000-0002-2481-3052
LATVIA
Uldis Berkis,
asoc. prof.
Riga Stradins University
Letland
Modra Murovska,
MD, PhD;
Riga Stradiņš University,
Riga, Latvia;
CA15111 Action Chair European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
(EUROMENE)
Letland
Zaiga Nora-Krukle, Ph.D
Senior researcher at Institute of Virology and microbiology,
Riga Stradins University
COST action CA15111, MC substitute
EATRIS coordinator of Latvia node
BULGARIEN
Assoc.Prof. Evelina Shikova
Head NRL "Herpes and Oncogenic Viruses"
National Center of Infectious and Parasitic Diseases
Sofia,
Bulgaria
ROMANIA
Carmen-Adella Sirbu
Associate Professor of Neurology,
Titu Maiorescu University
Central Military Emergency University Hospotal, Bucharest, Romania.
MC Members of CA15111 - European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
(EUROMENE).
SERBIA
Sekulic Slobodan
Full research professor
MC member of CA15111
Medical Faculty Novi Sad, Serbia
SUU, Alm.del - 2019-20 - Bilag 150: Henvendelse af 8/1-20 fra ME Foreningen om behandlingstilbud til ME-patienter
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USA
Ronald G. Tompkins,
M.D., Sc.D.
Sumner M Redstone Professor of Surgery
Harvard Medical School
Massachusetts General Hospital
USA
Linda Tannenbaum
Founder and CEO
Open Medicine Foundation
USA
Robert D Phair
PhD
Chief Science Officer
Integrative Bioinformatics Inc
Mountain View, CA
USA
Ronald W. Davis,
PhD
Stanford University
Director, Stanford Genome Technology Center
Director, ME/CFS Collaborative Research Center at Stanford
Director, Open Medicine Foundation Scientific Advisory Board
USA
Wenzhong Xiao
Assistant professor of Bioinformatics
Director of the Inflammation & Metabolism Computational Center
Harvard Medical School & Massachusetts General Hospital
USA
Mady Hornig,
MA, MD
4
Associate Professor of Epidemiology
Columbia University Mailman School of Public Health
USA
Leonard A. Jason,
Ph.D. 

Professor of Psychology | DePaul University
Director, Center for Community Research
990 W. Fullerton Ave., Suite 3119
Chicago, Il. 60614
Telephone: 773-325-2018
Website: http://leonardjason.com/
USA
Michael VanElzakker,
PhD
Research Fellow, Neuroscience & Neurotherapeutics
Harvard Medical School & Massachusetts General Hospital
Instructor, Tufts University
USA
4
Indeed, there is evidence that such approaches (CBT/GET) may not only be ineffective, but may actually be harmful
to patients. (Davenport TE et al. Checking our blind spots: current status of research evidence summaries in ME/CFS.
Br J Sports Med 2019;53:1198. doi: 10.1136/bjsports-2018-099553)
SUU, Alm.del - 2019-20 - Bilag 150: Henvendelse af 8/1-20 fra ME Foreningen om behandlingstilbud til ME-patienter
Betsy Keller,
PhD
Professor, Exercise Science
Ithaca College, Ithaca, NY
Co-Coordinator, Clinical Core
NIH-funded Collaborative Research Center for the Study of ME/CFS
Cornell University, Ithaca, NY,
USA
H. Craig Heller,
Professor
Biology Department
Stanford University
Stanford, CA 94305-5020
USA
Jennifer Frankovich,
MD MS
Clinical Associate Professor
Pediatric Rheumatology
Stanford University
Co-Director, Stanford PANS Clinic
Director, Stanford PANS research program
USA
Mario R. Capecchi
Distinguished Professor
University of Utah School of Medicine
USA
Todd E. Davenport,
PT, DPT, MPH, OCS
Professor & Program Director
University of the Pacific
Thomas J. Long School of Pharmacy & Health Sciences
Department of Physical Therapy
USA
Robert K. Naviaux,
MD, PhD
Professor of Genetics
Biochemical Genetics and Metabolism
Departments of Medicine, Pediatrics, and Pathology
Co-director, The Mitochondrial and Metabolic Disease Center (MMDC)
UCSD School of Medicine
214 Dickinson St., Room C-107
San Diego, CA 92103-8467
USA
Amel Karaa,
MD
Assistant Professer,
Harvard Medical School
Director, Mitochondrial Disease Program,
Massachusetts General Hospital
Lars Steinmetz,
Ph.D.
Professor of Genetics, Stanford University

Co-Director, Stanford Genome Technology Center

Principal Investigator & Senior Scientist, Genome Biology Unit, EMBL
USA
J. Mark VanNess,
Ph.D.
SUU, Alm.del - 2019-20 - Bilag 150: Henvendelse af 8/1-20 fra ME Foreningen om behandlingstilbud til ME-patienter
Professor - Health and Exercise Science
University of the Pacific
Stockton, CA 95211
Scientific Advisor - WorkWell Foundation, Ripon, CA
USA
Derya Unutmaz,
M.D.
Professor, Jackson Laboratory for Genomic Medicine
Professor, University of Connecticut School of Medicine
Farmington, CT, 06032,
USA
Staci R. Stevens,
MA
Founder, Exercise Physiologist
Workwell Foundation
is a fiscally sponsored program of United Charitable
P.O. Box 1435
Ripon, CA 95366
USA
Dr. Alan R. Light, Ph.D.
Professor
Depts. of Anesthesiology and Neurobiology and Anatomy
3C 444 SOM
University of Utah
30N 1900 E.
Salt Lake City, UT 84132
Lucinda Bateman, MD
Chief Medical Director
24 South 1100 East, Suite 205
Salt Lake City, Utah 84102
P 801.359.7400 | F 801.359.7404
[email protected]
Maureen R. Hanson
Liberty Hyde Bailey Professor
Director, Cornell University Center for Enervating Neuroimmune Disease
Ithaca, NY, USA
Joyce Ferrone,
FNP-BC Nurse Practitioner
24 South 1100 East, Suite 205
Salt Lake City, Utah 84102, USA
Benjamin H. Natelson, MD
Director, Pain & Fatigue Study Center
Professor of Neurology
Icahn School of Medicine at Mount Sinai
New York, NY 10029, USA
Peter C. Rowe, MD
Professor of Pediatrics
Johns Hopkins University School of Medicine
Baltimore, MD 21287
USA
SUU, Alm.del - 2019-20 - Bilag 150: Henvendelse af 8/1-20 fra ME Foreningen om behandlingstilbud til ME-patienter
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CANADA
Alain Moreau PhD
Director / Directeur
Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network (ICanCME)
Full Professor
Department of Stomatology, Faculty of Dentistry
Department of Biochemistry and Molecular Medicine, Faculty of Medicine
Université de Montréal
Scientific Director
Viscogliosi Laboratory in Molecular Genetics of Musculoskeletal Diseases
Sainte-Justine University Hospital Research Center,
3175 Cote-Ste-Catherine Road, Montreal, Qc, H3T 1C5, Canada
Patrick O. McGowan, PhD
Associate Professor Departments of Biological Sciences, Cell and Systems Biology, Psychology,
Physiology University of Toronto SW-548,
1265 Military Trail, Toronto ON M1C1A4 Canada
www.utsc.utoronto.ca/~pmcgowan
Lab Twitter: @MethylNation
NEW ZEALAND
Rosamund Vallings MNZM, MBBS
Howick Health and Medical Clinic
Howick, Auckland
New Zealand
Lynette Hodges, PhD
Clinical Exercise Physiologist/Senior Lecturer in Exercise Science.
School of Sport, Exercise and Nutrition,
Massey University,
Private Bag 11-222
Palmerston North, New Zealand
Dr Eiren Sweetman
Department of Biochemistry,
University of Otago, New Zealand
Don Baken PhD, PGDipClinPsych
Registered Clinical Psychologist
Research Coordinator
Massey University
New Zealand
AUSTRALIEN
Sonya Marshall-Gradisnik
Co- Director National Centre for Neuroimmunology and Emerging Diseases
Professor lmmunology, Menzies Health Institute Queensland,
Gold Coast campus,
Griffith University, QLD 4222,
Neil R. McGregor BDS, MDSc, PhD
5
5
Post-exertional malaise is associated with changes in glycolysis and acetylation in ME/CFS patients. These changes
are consistent with a hypo-acetylation state and are likely to significantly alter histone acetylation and the actions of
SUU, Alm.del - 2019-20 - Bilag 150: Henvendelse af 8/1-20 fra ME Foreningen om behandlingstilbud til ME-patienter
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Clin. Assoc. Prof. University of Melbourne
Adj. Prof. Victoria University
Professor Donald R Staines
National Centre for Neuroimmunology and Emerging Diseases
Griffith University
Dr Brett A. Lidbury, Ph.D. FFSc (RCPA)
Associate Professor, The National Centre for Epidemiology and Population Health, RSPH,
College of Health and Medicine,
The Australian National University
Canberra ACT 2601 Australia.
W: http://nceph.anu.edu.au/about-us/people/brett-lidbury
T: 02-6125 7875
Paul Fisher
Professor of Microbiology,
La Trobe University,
VIC 3086,
Leighton Barnden
Medical scientist,
National Centre for Neuroimmunology and Emerging Diseases,
Menzies Health Institute Queensland, Griffith University
acetylation and deacetylation in controlling cellular enzymatic events. Well-designed studies evaluating these
important factors are warranted (McGregor Neil R. et al: Post-Exertional Malaise Is Associated with
Hypermetabolism, Hypoacetylation and Purine Metabolism Deregulation in ME/CFS Cases
https://www.mdpi.com/2075-4418/9/3/70)
SUU, Alm.del - 2019-20 - Bilag 150: Henvendelse af 8/1-20 fra ME Foreningen om behandlingstilbud til ME-patienter