Journal of IiMER Welcome by host MEP Mrs. Helga Stevens MEP Mrs. Helga Stevens thanked everyone for attending, and thanked EMEA for letting her host this event and for organising this important Breakfast Colloquium at the European Parliament. She started by saying that Myalgic Encephalomyelitis (ME) is a very serious, disabling and chronic organic disorder classified by the World Health Organisation as a distinct neurological disorder since 1969 and that ME is often denigrated end denied by doctors, policymakers and the general public. This is why the classification as a neurological disease is an important step towards broader official recognition by the medical and scientific establishment! Personally, she found it very interesting not to look at the disease from a medical point of view but also in terms of it potentially being recognised and understood as a disability and from a social model of disability point of view whereby it is the environment that is disabling rather than victimising the individual him/herself. Mrs. Stevens looked forward to learning more about ME, in particular about children with ME and what good practice examples exist out there. She wished EMEA all the best for the event. Politicians have a predisposition to try and save money and in this area definitions are extremely important in determining whether patients get benefits or not. Putting money into biomedical research, Dr. Gibson said, is much more expensive - even though it might be more productive in the long run and save a lot of money. In the short term, it is about trying to get definitions. Going over to therapy Dr. Gibson touched upon a paper called “The PACE Trial” which is been looked at now by some very serious academics in the United Kingdom and has been discredited. When asking questions in the House of Commons they did not receive any credible answers. On the other hand there was huge support for the MP who asked these very pertinent questions about these decisions, why they were made and about disability and benefits. He became a hero in the ME community. The economic consequences of not being www.investinme.org Page 52 of 82 Dr. Ian Gibson – European Issues Dr. Ian Gibson talked about public disability problems and how those are supported, not just in the Member States but across the European Parliament as well. He referred to Professor Tom Shakespeare (at University of East Anglia) who shows that much of the determination of policy on illness depends on trying to stop people with illnesses getting benefits. Rather than judging whether a person has a practical chance of being able to find a job the new capability assessment investigates whether the person has the ability, in theory, to do any form of work at all. Most likely the eligibility criteria can substantially make it more difficult for people to access benefits.
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