Journal of IiME Volume 3 Issue 1 S SEEVVEERREE MMEE –– AA PPAATT IIEENNTT ’’SS VVIIEEWW conversation impossible. I want you to imagine being unable to read because your brain simply is unable to comprehend the mass of information before you; of being unable to imagine, even, because the fog has descended inside your head that blanks out thought and creativity ability. This is only a portion of the reality of having severe ME. Now I want you to think what it must be like to know that despite this severe disability, this chronic unending illness: - There is no biomedical consultant provided to treat you - There is no apparent awareness of the urgent need to do something to physically help you - There is no NHS service offering appropriate biomedical tests or treatments despite the fact there are very serious physical abnormalities in your body and every time you ask for help you are sidelined - Every time you try to raise awareness it doesn't make any difference. What must it be like then to find that there is an opportunity for world class, concerned and interested medical consultants – consultants who know your illness is a physical reality, one that has been grossly neglected, - who actually want to come and provide a new service, to right the injustice of no appropriate medical provision in your area ? Can you begin to imagine what it feels like when, instead of this offer being accepted, you are fobbed off instead with a biopsychosocial, therapy-led service (pretending to be biomedical) that Invest in ME (Charity Nr. 1114035) does not meet the complex medical needs of this disease? When all the PCT has to do is say - “Yes”, “we will take you seriously” , “We acknowledge responsibility for your biomedical care”, “we can see that you need a local consultant and it is not unreasonable to expect one;” “So yes, we will provide you with a new innovative biomedical service that might just begin to meet your needs..” “And we will lead the way.” Please tell me why this is not happening ? www.investinme.org ME FACTS In 1988, UK researchers Archard and Bowles et al published the results of their research into muscle abnormalities in ME/CFS: “These data show that enterovirus RNA is present in skeletal muscle of some patients with postviral fatigue syndrome up to 20 years after onset of disease and suggest that persistent viral infection has an aetiological role. These results provide further evidence that Coxsackie B virus plays a major role in ME, either directly or by triggering immunological responses which result in abnormal muscle metabolism” (JRSM 1988:81:325-331). Page 10/76
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