Journal of IiME Volume 1 Issue 2 Chronic Fatigue Syndrome after Q fever (continued) 11. Penttila IA, Harris RJ, Storm P et al: Cytokine dysregulation in the post-Q-fever fatigue syndrome. Q J Med, 1998; 91: 549–60 12. Hickie I, Davenport T, Wakefield D et al: Post-infective and chronic fatigue syndromes precipitated by viral and non-viral pathogens: prospective cohort study. BMJ, 2006; 333(7568): 575–81 13. Helbig KJ, Heatley SL, Harris RJ et al: Variation in immune response genes and chronic Q fever. Concepts: Preliminary test with post-Q fever fatigue syndrome. Genes Immun, 2003; 4: 82–85 14. Ayres JG, Flint N, Smith EG et al: Post-infection fatigue syndrome following Q fever. Q J Med, 1998; 91: 105–23 15. Marmion BP, Shannon M, Maddocks I et al: Protracted debility and fatigue after acute Q fever. Lancet, 1996; 347: 977–78 16. Maisch B: Rickettsial perimyocarditis-a follow up study. Heart Vessels, 1986; 2: 55–59 17. Lovey P-Y, Morabia A, vascular complication of Coxiella burnetii Bleed D et al: Long term infection in Switzerland: cohort study. Br Med J, 1999; 319: 284–86 18. Ayres JG, Wildman M, Groves J et al: Long-term Followup of patients from the 1989 Q fever outbreak: no evidence of excess cardiac disease in those with fatigue. Q J Med, 2002; 95: 539–46 19. Thomas HV, Thomas DR, Salmon RL et al: Toxoplasma and Coxiella infection and psychiatric morbidity: A retrospective cohort analysis. BMC Psychiatry, 2004; 4: 326– 29 20. Arashima Y, Kato K, Komiya T et al: Improvement of Chronic Nonspecific symptoms by long-term minocycline treatment in Japanese patients with Coxiella burnetii infection considered to have post-Q fever fatigue syndrome. Intern Med, 2004; 43: 49–54 21. Iwakami E, Arashima Y, Kato K et al: Treatment of chronic fatigue syndrome with antibiotics: assessing the involvement of Coxiella burnetii Pilot study infection. Intern Med, 2005; 44: 1258–63 22. Yutaka M, Hiroshi W, Tomoki T et al: Intractable Q fever treated with recombinant gamma interferon. Pediatr Infect Dis, 2001; 20: 547–57 23. Visser J, Blauw B, Hinlopen B et al: CD4 T lymphocytes from patients with chronic fatigue syndrome have decreased interferon-g production and increased sensitivity to dexamethasone. J Infect Dis, 1998; 177:451–54 ME Comment Palliative care is not good enough, and does not stop the progress of the illness. Increasing numbers of PWME in our population, and the high incidence in families as well as in certain areas of the country, point to a disease that is communicable. In disregarding these signs, those responsible for the health of our whole population are guilty of what in history will be seen as criminal negligence - Deborah Invest in ME Charity Nr 1114035 ME Story The future….. There is no cure and therefore no treatment offered by the NHS. As a result I have joined thousands who have tried every avenue desperately trying to get better, spending over £1000 of my own money and having ongoing expenses for supplements which have been trialled and recommended. All I can see is an ongoing battle with the symptoms - the main one being fatigue - and spending more and more money in the hope of getting better. I know I am not as affected as some but I still find it hard. Although my GP has been very helpful (he diagnosed the illness very quickly, has referred me to a specialist and asked for Cognitive Behaviour Therapy for me) he cannot give me a timescale or a prognosis. There is a desperate need to find the cause of this illness and give sufferers a chance of getting their life back. In the meantime, there needs to be a standard 'help package' as the only information I have is what I have found from the internet or from other sufferers. There seems no end to this at the moment so I join all those who are demonstrating today as one of a large number of highly successful, intelligent and able people who have been struck down and had their lives turned upside down, often overnight. We are willing to work and want to get better, rather than rely on benefits but that is all we are offered. - Judith www.investinme.org Page 34/72

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