Questions and answers about ME/CFS knowledge center in Denmark

This is my best (that means far from perfect) translation of my previous post:

In the context of the establishment of a ME/CFS knowledge center in the Central Denmark Region, the ME Association (abbreviated: ME) asked a series of questions to the Head-Neuro-Center, Aarhus University Hospital, where the Research Clinic for Functional Disorders (abbreviated: FFL) is located. Below are the ME Association’s questions and the corresponding answers from FFL presented. There has subsequently been a meeting between the FFL and the ME Association, so the dialogue continues and more information is pending.

But so far, here are questions and answers:

ME: How is the knowledge center placed in the organization?  By this is meant, is it an independent unit under the Head-Neuro-Center, or is the knowledge center located under the Research Clinic for Functional Disorders?

FFL: The knowledge center for ME/CFS is located under the Research Clinic for Functional Disorders, which is part of the Head-Neuro-Center, Aarhus University Hospital.

ME: May we ask for a project description with objectives and budget for the knowledge center?

FFL: The Danish Health and Medicines Authority has asked the Central Denmark Region to establish a ME/CFS knowledge center. This unit is currently under construction, and we are in the process of finding the best way to solve the task and respond to the needs of the patients. As the function is a general part of the Research Clinic for Functional Disorders, there is no actual project description. Regarding the economic frame, Aarhus University Hospital has allocated 1,3 to 1,5 million annually for the operation of the knowledge center.

ME: Chronic Fatigue Syndrome Advisory Committee[1] has recommended that the use of the ME/CFS guidelines[2] (called “The Primer”) become widely used. Is the knowledge center also going to recommend and the use these guidelines?

FFL: So far, we will lean towards the British NICE criteria for ME/CFS.

ME: What treatments will the knowledge center use for ME?

FFL: There will primarily be used types of treatment, where there is scientific evidence for the effect for patients with ME/CFS. At present, these are cognitive therapy and graded rehabilitation. But we will keep a close eye on the research carried out both nationally and internationally, and naturally we hope for new and better treatments for this severely affected patient group. We hope that we also will get the opportunity to test new treatments in clinical trials, but there is not currently embedded economy for research. In addition we are in the process of building a wide network of collaborators from various medical specialties, including neurologists, infection, physicians, endocrinologists and rheumatologists. We are also working to be able to draw upon a rehabilitation unit, as there may be a need for hospitalization and rehabilitation of the worst patients, which in some cases are bedridden and need a much more intensive help than that offered in outpatient settings. Finally, we are in the process of exploring the possibilities of working with one of the diagnostic centers, some hospitals want to establish. We hope through these initiatives and the broad range of expertise that is available, to provide patients with ME/CFS better treatment in the future.

 
ME: Has the knowledge center plans to participate in the testing of Rituximab for ME?

FFL: The study, which has been trying to treat patients with ME/CFS with Rituximab is interesting. We have no current plans to investigate the effect of Rituximab, since it is a treatment with very high risk and there is still only very sparse documentation of the treatment. We know that there are studies underway elsewhere and will await these results before we take further initiatives in this area

ME: Has the knowledge center plans to cooperate and gain knowledge from other ME centers, such as Chronic Fatigue Center[3], Open Medicine Institute[4], the PHANU group[5], Whittemore Peterson Institute[6] or ME/CFS senteret[7]?

FFL: We have a wide cooperation both nationally and internationally. We do not at this stage have a collaboration with the centers, that you mention, but within the area of CFS, we work, amongst others, together with Peter White (Professor of Psychological Medicine, Centre for Psychiatry, Wolfson Institute of Preventive Medicine, Barts and the London School of Medicine and Dentistry, Queen Mary University of London, St Bartholomew's Hospital, London).

ME: Will the knowledge center seek participation in the international working group "Clinical Autoimmunity Working Group"[8], which is working to clarify whether ME is an autoimmune disease?

FFL: There is not currently a formal collaboration with the Working Group "Clinical Autoimmunity Working Group". But we are at an early stage in the building of the knowledge center, we can not reject any possible future cooperation with anyone.

ME: May the ME Association get a representative to the meetings taking place about the establishment and operation of the knowledge center?

FFL: The knowledge centre for ME/CFS is part of the Research Clinic for Functional Disorders,' daily operations and work. There is no independent board of directors or advisory group, and there are therefore not independent meetings where it would be appropriate for a representative from the ME Association to participate.

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[1] Chronic Fatigue Syndrome Advisory Committee http://www.hhs.gov/advcomcfs/meetings/index.html

At the end of the meeting minutes http://www.hhs.gov/advcomcfs/meetings/minutes/cfsac20120514.pdf  (page 51-55) from 14^th of June CFSAC has written their recommendations.

”CFSAC recommends that the HHS Secretary authorize the appropriate person within HHS to work with IACFS/ME to make the primer widely available, particularly to primary care providers.”

[2] Chronic Fatigue Syndrome, Myalgic Encephalomyelitis, A Primer for Clinical Practitioners

http://www.iacfsme.org/Portals/0/PDF/PrimerFinal3.pdf

[3] Chronic Fatigue Center by Nancy Klimas  http://www.cfsclinic.com/

[4] Open Medicine Institute ved Andreas Kogelnik http://www.openmedicineinstitute.org/Welcome.html

[5] PHANU (Population Health and Neuroimmunology Unit) at the Bond University in Australia.

http://www.bond.edu.au/about-bond/news-and-events/news/BD3_019855

http://phoenixrising.me/archives/13243

[6] Whittemore Peterson Institute

http://www.wpinstitute.org/

[7] ME/CFS senteret at the University of Oslo by Barbara Baumgarten-Austrheim  http://www.oslo-universitetssykehus.no/omoss/avdelinger/mecfs-senteret/Sider/enhet.aspx

[8] Clinical Autoimmunity Working Group

To raise awareness of ME, and promote collaboration, innovation and foundations for a clearer strategy of biomedical research into ME, Invest in ME has joined with the Alison Hunter Memorial Foundation of Australia - in cooperation with Bond University and University of East Anglia - to establish a Clinical Autoimmunity Working Group

http://www.investinme.org/IIME%20Statement%202012-05-31.htm

 

 

Spørgsmål og svar om ME/CFS videnscenter

Reference: ME Foreningen

I forbindelse med oprettelse af et ME/CFS videnscenter i Region Midt har ME Foreningen  stillet en række spørgsmål til Hoved-Neruro-Centeret ved Aarhus Universitetshospital, hvor Forskningsklinikken for Funktionelle Lidelser (FFL) er placeret. Nedenstående er ME Foreningens spørgsmål og de tilhørende svar fra FFL gengivet. Der har efterfølgende været afholdt et møde mellem FFL og ME Foreningen, så dialogen fortsætter, og der afventes mere information om dette.

Men indtil videre er spørgsmål og svar her (ME Foreningen er her forkortet til ME):

ME: Hvordan er den organisatoriske placering af videnscenteret? Her menes, er det en selvstændig enhed under Hoved-Neuro-Centret, eller er videnscenteret placeret under Forskningsklinikken for Funktionelle Lidelser?

FFL: Videncentret for ME/CFS er placeret under Forskningsklinikken for Funktionelle Lidelser, som er en del af Hoved-Neuro-Centret på Aarhus Universitetshospital.

ME: Må vi bede om en projektbeskrivelse incl. målsætning og budget for videnscenteret?

FFL: Sundhedsstyrelsen har bedt Region Midt om at etablere et videncenter for ME/CFS. Funktionen er på nuværende tidspunkt under opbygning, og vi er i gang med at finde frem til, hvordan vi på den bedste måde kan varetage funktionen samt, hvordan vi bedst imødekommer patienternes behov. Idet funktionen er en almindelig del af Forskningsklinikken for Funktionelle Lidelser, er der ikke nogen egentlig projektbeskrivelse. Mht. de økonomiske rammer har Aarhus Universitetshospital afsat 1,3-1,5 mio. kr. årligt til driften af videncentret. 

ME: Chronic Fatigue Syndrome Advisory Committee[1] har anbefalet, at brugen af en ME/CFS vejledning[2] (kaldet ”Primeren”) bliver udbredt. Vil videnscenteret også anbefale og benytte denne vejledning?

FFL: Indtil videre vil vi lægge os op ad de engelske NICE-kriterier for ME/CFS.

ME: Hvilke behandlingsformer vil videnscenteret benytte mod ME?

FFL: Der vil primært blive anvendt de former for behandling, som der er videnskabelig dokumentation for har en gavnlig effekt for patienter med ME/CFS. På nuværende tidspunkt drejer det sig om kognitiv terapi og gradueret genoptræning. Men vi vil holde nøje øje med den forskning, der foregår både nationalt og internationalt, og vi håber naturligvis, at der kommer nye og bedre behandlingsmuligheder for denne hårdt ramte patientgruppe. Vi håber, at vi også får mulighed for at afprøve nye behandlingsmuligheder i kontrollerede kliniske undersøgelser, men der er på nuværende tidspunkt ikke indlagt økonomi til forskning. Derudover er vi i gang med at opbygge et bredt netværk af samarbejdspartnere fra forskellige lægevidenskabelige specialer, herunder bl.a. neurologer, infektionsmedicinere, endokrinologer og reumatologer. Derudover arbejder vi på at få mulighed for at kunne trække på en genoptræningsenhed, da der kan blive behov for indlæggelse og rehabilitering af de dårligste patienter, som i nogle tilfælde er sengeliggende og har brug for en langt mere intensiv hjælp end den, der tilbydes i ambulant regi. Endelig er vi i gang med at undersøge de muligheder der ligger i at samarbejde med et af de diagnostiske centre, som nogle hospitaler ønsker at opbygge. Vi håber igennem disse initiativer og det brede spektrum af ekspertise, som er tilgængelig, at kunne tilbyde patienter med ME/CFS en bedre behandling i fremtiden.

ME: Har videnscenteret planer om at deltage i afprøvning af Rituximab mod ME?

FFL: Undersøgelsen, hvor man har forsøgt at behandle patienter med ME/CFS med Rituximab, er interessant. Vi har ikke aktuelt planer om at undersøge effekten af Rituximab, idet det er en behandling med meget stor risiko og der endnu kun er yderst sparsom dokumentation for behandlingen. Vi ved, at der er undersøgelser i gang andre steder og vil afvente disse resultater før vi tager yderligere initiativer på dette område.

ME: Har videnscenteret planer om at samarbejde og indhente viden fra andre ME centre, såsom Chronic Fatigue Center[3], Open Medicine Institute[4], PHANU gruppen[5], Whittemore Peterson Institute[6]  eller ME/CFS senteret[7]?

FFL: Vi har et bredt samarbejde både nationalt og internationalt. Vi har ikke på nuværende tidspunkt et samarbejde med de centre, som I nævner, men inden for CFS arbejder vi bl.a. sammen med Peter White (Professor of Psychological Medicine, Centre for Psychiatry, Wolfson Institute of Preventive Medicine, Barts and the London School of Medicine and Dentistry, Queen Mary University of London, St Bartholomew's Hospital, London).

ME: Vil videnscenteret søge deltagelse i den internationale arbejdsgruppe ”Clinical Autoimmunity Working Group”[8], der arbejder på at afklare, om ME er en autoimmun sygdom?

FFL: Der er heller ikke på nuværende tidspunkt noget formelt samarbejde med arbejdsgruppen ”Clinical Autoimmunity Working Group”. Men vi er på et så tidligt stadie i opbygningen af videncentret, at vi ikke kan afvise noget evt. fremtidigt samarbejde med nogen.

ME: Kan ME Foreningen få en repræsentant med til de møder, der finder sted omkring oprettelse og drift af videnscenteret?

FFL: Videncentret for ME/CFS er en del af Forskningsklinikken for Funktionelle Lidelsers daglige drift og arbejde. Der er således ikke nogen selvstændig bestyrelse eller følgegruppe, og der afholdes derfor ikke selvstændige møder, hvor det vil være relevant for en repræsentant fra ME-foreningen at deltage.

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[1] Chronic Fatigue Syndrome Advisory Committee http://www.hhs.gov/advcomcfs/meetings/index.html

I slutningen af mødereferatet http://www.hhs.gov/advcomcfs/meetings/minutes/cfsac20120514.pdf  (side 51-55) fra 14. juni er nedskrevet de anbefalinger, som CFSAC kommer med.

”CFSAC recommends that the HHS Secretary authorize the appropriate person within HHS to work with IACFS/ME to make the primer widely available, particularly to primary care providers.”

[2] Chronic Fatigue Syndrome, Myalgic Encephalomyelitis, A Primer for Clinical Practitioners

http://www.iacfsme.org/Portals/0/PDF/PrimerFinal3.pdf

[3] Chronic Fatigue Center ved Nancy Klimas  http://www.cfsclinic.com/

[4] Open Medicine Institute ved Andreas Kogelnik http://www.openmedicineinstitute.org/Welcome.html

[5] PHANU (Population Health and Neuroimmunology Unit) ved Bond Universitet i Australien.

http://www.bond.edu.au/about-bond/news-and-events/news/BD3_019855

http://phoenixrising.me/archives/13243

[6] Whittemore Peterson Institute

http://www.wpinstitute.org/

[7] ME/CFS senteret ved Oslo Universitetssykehus ved Barbara Baumgarten-Austrheim  http://www.oslo-universitetssykehus.no/omoss/avdelinger/mecfs-senteret/Sider/enhet.aspx

[8] Clinical Autoimmunity Working Group

To raise awareness of ME, and promote collaboration, innovation and foundations for a clearer strategy of biomedical research into ME, Invest in ME has joined with the Alison Hunter Memorial Foundation of Australia - in cooperation with Bond University and University of East Anglia - to establish a Clinical Autoimmunity Working Group

http://www.investinme.org/IIME%20Statement%202012-05-31.htm