Journal of IiME Volume 4 Issue 1 www.investinme.org ME STORY SPEAKERS and ABSTRACTS of the 5th INVEST in ME INTERNATIONAL ME/CFS CONFERENCE the key immune cell target? It is present in other immune compromised individuals? Does XMRV play a role in malignancy or other neuroimmune illnesses? XMRV is the first human infectious gamma retrovirus identified. There are now three known human exogenous retroviruses, HIV, HTLV (both complex retroviruses) and XMRV (simple retrovirus). Human retroviruses are all associated with cancer and neurological disease. The existence variants of HIV and HTLV with different pathogenic profiles suggesting there could be variants of XMRV which contribute to the divergent disease profiles seen in ME/CFS and may explain the inability to detect XMRV using PCR primers highly specific to the current infectious molecular clone VP62 constructed from prostate cancer sequences. Like other retroviral infections, XMRV integrates into hostcell DNA and becomes lifelong. Information on murine xenotropic viruses as well as current research on cellular tropism, and cis-acting glucocorticoid response elements, provides intriguing clues for viral persistence, mechanisms of pathogenesis and opportunities for XMRV as a diagnostic biomarker and therapeutic target in ME/CFS. For a significant percentage of us deterioration is a one-way street. The NHS should aim to avoid making people more ill. In the clinics and hospitals in which I have spent time the most respect and consideration was always shown to the person most likely to die or most visibly impaired. M.E. was not seen as life- threatening and not considered to be a `serious' illness. In 1999 Dr. David Bell, a researcher and experienced clinician with a vast caseload of field experience in M.E. gave a lecture at Christie's in London entitled: "M.E. and the Autonomic System". He stated that: "People with M.E. have less activity than people, dying of HIV/AIDS, who are within two months of death." Dr. Bell was explaining that quite moderately affected M.E. patients are less able and active than terminally ill AIDS patients. The NHS needs to be educated about this patient group: A group of people who are living at a lower level of functioning than the terminally ill but who must continue in this way for years, often decades. For the severely affected M.E. sufferer management of one's health and care at a daily level is often an unsuccessfully waged battle. It is impossible to stabilise one's condition and therefore deterioration is ongoing - A person with ME Comments of doctors to ME patients: • “Throw away your crutches – it’s your head that needs them, not your legs” • “Women of your age imagine aches and pains–are you sure you’re not attention-seeking?” • “I’m not prepared to do any tests, they cost money” • “Shut up and sit down” • “You area menace to society–a pest. I wish you’d take yourself away from me” • “You middle class women have nothing else to worry about” • “Its one of those thing you silly young women get” • “Hypochondriac, menopausal, you have the audacity to come here and demand treatment for this self-diagnosed illness which does not exist” • “Stop feeling sorry for yourself – I have patients with real illnesses, patients who are dying from cancer” • “ME is a malingerer’s meal ticket” • “Your inability to walk is in your mind” • “I’m not going to further your career of twenty years of being ill” • “Nothing at all wrong with this woman – Put her on valium” (to GP from Consultant). from “Magical Medicine: How to Make a Disease Disappear”. See http://tinyurl.com/2uv8j95 Invest in ME (Charity Nr. 1114035) Page 54/56

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