lørdag den 27. oktober 2012

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.

[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 14th 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

[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.

[6] Whittemore Peterson Institute

[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


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