Journal of IiMER Volume 13 Issue 1 Invest in ME Research Caring for someone with ME "She was gradually deteriorating. Every tiniest activity (physical, cognitive and sensory) from washing her hair to rubbish collection day, had devastating results. Sometimes she could recover in a few days, other times it would take months, but often the cumulative effects of the noisy, smelly, bright, sunny, loud, vibrational, fast, chemical based world we live in were all too much and disease progression with permanent damage resulted. Doctors always amaze me when they are puzzled by her severity and wonder why it's taking so long to 'pick up her bed and walk". - Lili It is difficult to convey fully the overwhelming effects of severe ME – on the patient or on carers. We can only allude to the horrendous course that ME can take, point out at how little has been done to address this particular issue of ME, and state what we, as a charity, are trying to do to change things. The odds are stacked against carers if the person(s) they are caring for suffer from ME. Carers have to stop their normal life to try to come to grips with the effects of this disease on themselves as well as the patient. Lack of understanding about the disease by the public – a great deal of which has been caused by misinformation from media centres and compromised media editors - can even affect relationships. If a carer/partner does not understand the illness or has been misinformed due to the media propaganda then subsequent strains on relationships can take its toll – thus further aggravating the situation for the patient. Apart from having to research oneself what this disease is, and what treatments there may be, a carer/parent may suddenly be met, not with compassion or understanding, but with the full force of social services intervening and suddenly becoming victim to the ignorance that pervades society. The other insidious effects of ME that the patient experiences – such as isolation – may also come into play for carers. Kjersti Krisner gave a moving testimony of issues with severe ME in her pre-conference dinner Invest in ME Research (Charity Nr. 1153730) presentation prior to the 11th International ME Conference in London in 2016. If one wished to see all that has been wrong with research policies toward ME by establishment organisations over the years then one would only need to see Kjersti's presentation Kjersti's family of three severely affected children was highlighted in Norwegian TV with the NRK channel Pulse program in 2009. Meridian TV aired a series of programmes in 20052006 covering the effects of ME on severely affected patients. A reporter from Meridian interviewed a number of ME sufferers in Hampshire as well as at the regional ME centre. This set of interviews conveyed the suffering and lack of action regarding ME. One of the most shocking and heart-breaking cases involved Sophia Mirza. The full force of establishment ignorance about ME came crushing down on one poor girl and her family. Had this story occurred today, with all of the effects of social media, then the story would have been a national scandal with resulting action being taken. Instead, Sophia's mother, Criona, had to continue to campaign for years to try to get justice. Invest in ME Research organised a conference call in 2013 with Dr Martin McShane, Director of Domain Two, NHS Commissioning Board, after a supporter contacted her constituency MP (which happened to be the Prime Minister at that time). In that meeting the parents of the very severely ill young person gave a presentation of their experiences since their child became severely ill at the age of 8 in 2000. The presentation was very powerful and was conveyed in a very professional manner despite the obvious anguish and distress that it caused the parents. - There was a cluster of 5 people who became ill at the same time in the small village in which they lived - Not one GP took it upon themselves to investigate - Life was a living hell as their child could not talk, could not swallow and was sensitive to light and noise - Severe ME causes panic in healthcare professionals who want quick fixes, and look around investinme.org Page 30 of 52

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