Journal of IiME Volume 2 Issue 1 www.investinme.org Experiences of Care in Institutions with Severely-Ill People with ME (continued) in small doses with pauses in between in such a way that there is time to register a prospective reaction. The improvement starts with a concept of finding out what the ill person can tolerate out of the different challenges, and then these are tested out carefully with gradual introduction of light and sound, new foods, elevated position and so on, and active movement of muscles and joints, preferably without weight bearing to start with. It is considerably harder to work against gravity than it is with it, a relationship that was described as early as 1934 (Gilliam, 1938). Planning and personalised exercises can be useful so that the ill person doesn’t spontaneously increase physical activities too soon and too long while improving. Passive mobilisation and/or massage is validated if it increases well being. ME patients experience well being with an activity within tolerance limits and do not need encouraging. They rather need to be told to take rest breaks before they reach their performance limit so that they don’t push for a reaction ahead of them, with increased symptoms and lengthened recovery time as a result. The impression was that rehabilitation institutes aimed to find an optimal balance between pushing the limits carefully and thereafter stabilising with rest, but found it difficult to calculate the length of the necessary stabilisation, or what would trigger a reaction. The result was frustration both among patients and carers when there was a relapse. It is possible that some of the pressure of expectation is created by the false impression that micro training is favourable with ME. Such an approach goes against all experience and is based on a concept of fatigue being caused by an underlying lack of motivation, which is postulated in the so called Oxford criteria (or similar psychosomatic interpretations) which form the basis of many of the studies concluding that GET (Graded Exercise Therapy) or CBT (Cognitive Behavioural Therapy) are good for “chronic fatigue syndrome” (Kreyberg, 2004a). CBT and GET are activating therapies which do not take into account the ME patient’s tolerance limits in any other way than that taking part is voluntary. The therapy is offered and therefore caters for the patient’s experience of being ill. Such recognition gives hope after years of rejection and disbelief, which many have met within the health care system and/or family. Studies which show positive outcomes for treatment in no circumstances include the most severely affected patients who are not able to attend treatment. The principles of ME treatment are the same regardless of the severity of the illness, but the ill person’s performance abilities are diverse, and efforts for relief follow thereafter. One has to know the Invest in ME (Charity Nr. 1114035) condition can go within hours or days from being selfsupporting in several areas to needing fulltime care, and even someone with a high grade of autonomy can be totally exhausted during parts of the day, without an ability to have a conversation, call for help or look after oneself. A severely affected patient is extremely vulnerable and unstable so that the smallest effort can trigger a reaction. Small details will influence the everyday life a great deal in good and bad, both for the ill person and carers. This can be both demanding and rewarding. It is a big improvement when the ill person can do something themselves, for example lift a glass up to the mouth or type in a telephone number. This saves the ill person from sensory input, which is being loaded by having a helper in the room. But the glass has to be kept at the right height, not be too heavy and so on. The care has to be creative, and carers have to learn from one another. Rehabilitation and care go thus hand in hand, even for the very severely affected. Whether it deals with care or organising an activity by oneself, one has to be aware of the pattern of the ill person’s limits which are not usual in other illnesses – and this at such a detailed level is difficult to imagine. In addition one has to be practically odour free, sound free and invisible. The carers have to develop increased awareness in order that the patient can be saved from using energy to give instructions. They have to do their work and then leave the room because every attendance drains the mental capacity of the patient. On the other hand it can help if (continued on page 15 ) Facts on ME In ME/CFS there are three main abnormalities in gene expression studies: these involve the immune system, mitochondrial function and Gprotein signaling. There are seven genes upregulated in ME/CFS – those associated woth apoptosis, pesticides, mitochondrial function, demyelination and viral binding sites – J Kerr, St. Georges, London ( as listed in the IiME Quotable quotes Booklet ) Page 14/34
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