Journal of IiME Volume 4 Issue 1 www.investinme.org Around Europe – European ME Alliance with this disease patients will be happy when someone finds something. Contrast this with cancer patients for example. The months go by, and new appointments. De Meirleir says that Anette has a bowel problem with overgrowth of bacteria and that this is something she was born with. This has kept her sick for all these years. Now she will start on a cocktail of drugs and syringes costing thousands of dollars. This she must cover from her own savings, because she does not have the right diagnosis for them in Norway. Anette is angry at the Norwegian health services, because she had asked the infectious disease department if they could check her bowel problems. But no luck. Now she must pay the bill. It was impressive to observe the commitment and the willingness of Anette putting herself into the clinical picture and witness the medications she had to take. I felt nauseous over everything she would put or stick in her body over the next year. First, she became worse and rested a lot and then there was sudden improvement due, in particular, to the pig liver preparation Nexavir. That did the trick for Anette. But it was an untrained body which had to begin to function again. So she got help at a rehabilitation centre in Norway with simple exercises and physiotherapy. The previously optimistic Anette actually floated now. On a rose tinted cloud. That was how it was to have a body that was not feeling sick. Anette began to engage in the situation of ME patients and went to among other things to this London conference last year. She followed and understood most of the conference, without falling apart. For me, this has been an exciting journey that has opened my eyes to the fact that what we now refer to as ME is something more than a problem in the head. And if one starts with the physical problems first, and takes care of them, I think the positive thinking comes by itself. Without having to pay a lot of money for it. Anette says that she feels 80-90% recovered since the autumn and hopes to be able to consider job opportunities, either as a student or a 50% position in book writing on the side. She is now working on a book about the journey out of darkness, which she hopes will be ready for next year's conference. Good luck with this year's conference! Best Wishes, Pål Winsents, documentary filmmaker Invest in ME (Charity Nr. 1114035) Anette pictured at home with Pål filming Make Me Well was shown first on 12th May 2010 in Oslo. Invest in ME is providing help with English subtitles and it is hoped that the film will be available to a wider audience soon. ME RESEARCH In this review we invalidate the (bio)psychosocial model for ME/CFS and demonstrate that the success claim for CBT/GET to treat ME/CFS is unjust. CBT/ GET is not only hardly more effective than non-interventions or standard medical care, but many patients report that the therapy had affected them adversely, the majority of them even reporting substantial deterioration. Moreover, this review shows that exertion and thus GET most likely have a negative impact on many ME/CFS patients. Exertion induces post-exertional malaise with a decreased physical performance/ aerobic capacity, increased muscoskeletal pain, neurocognitive impairment, “fatigue”, and weakness, and a long lasting “recovery” time. This can be explained by findings that exertion may amplify pre-existing pathophysiological abnormalities underpinning ME/CFS, such as inflammation, immune dysfunction, oxidative and nitrosative stress, channelopathy, defective stress response mechanisms and a hypoactive hypothalamic-pituitary-adrenal axis. We conclude that it is unethical to treat patients with ME/CFS with ineffective, non-evidencebased and potentially harmful “rehabilitation therapies”, such as CBT/GET. - A Review on Cognitive Behavorial Therapy (CBT) and Graded Exercise Therapy (GET) in Myalgic Encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS) Frank N.M. Twisk and Michael Maes published by Neuroendocrinology Letters Volume 30 No. 3 2009 (http://www.ijcem.com) Page 44/56
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