March 2016

EMEA: Information – For Immediate Release

The National Knowledge Centre for CFS / ME will, on 18th April 2016, hold a "Research Seminar on CFS / ME and the most severely ill patients."

EMEA Norway (Norges ME Forening) and M.E. Network in Norway are concerned by what we perceive as a somewhat exclusive focus on biopsychosocial explanatory models for ME, which is reflected in the selection of professionals who are presenters at the seminar.

Both patient associations are particularly puzzled over the choice of Trudie Chalder as the main speaker.

Chalder is one of the main authors of the PACE study, a study that has faced increasing criticism, both in terms of method and interpretation of results.
Both prominent researchers, clinicians, and a large number of patients are now asking for the background data for the study to be released, so that the study's conclusions can be verified.

Norges ME Forening and M.E. Network in Norway are deeply concerned about how such a seminar as this will affect the view of the sickest patients.
Both patient associations are aware today of cases of egregious abuse of ill patients.
Very ill patients are denied the help they and their families want, and "remedial measures" are imposed leading to serious deterioration of their situation.

Some patients are so traumatized by contact with those who should be helping that they no longer dare to have contact with support agencies.
The abuse is often based on the belief that the patient should be active and that cognitive therapy and graded exercise are good treatments for ME.

Norges ME Forening and M.E. Network in Norway believe this seminar is missing several speakers with a biomedical understanding. In particular we miss any focus on the phenomenon of PEM (post-exertional malaise or exertional symptom exacerbation) since it must be central to any approach to coping with ME.

A representative of Norges ME Forening has agreed to hold an introduction to the seminar, because it is important that patients' voices are heard. It is extremely important that patients 'and families' experiences emerge as a counterweight to some of the seminar's other lecturers.

Today there is an increasingly dwindling amount of research into very severe ME.
These patients are rarely in contact with their doctor or other healthcare professional, since they are unable to leave home.
In a situation without reliable research data it is essential that health professionals have the ability to listen to patients and their relatives, and to respect and accept the patients' experiences and wishes.

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Last Update: March 2016

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