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Fatigue following activity (or post-exertional fatigue or malaise) is a common symptom of a large number of different illnesses but what is happening in M. E., let alone been completely resolved in that time. Some individuals also have damage to skeletal and heart muscle. is an infectious and primarily neurological disease process which occurs in epidemic and sporadic forms. For example, if I am walking down the hallway and someone else starts walking down it too, my brain misinterprets this movement as being relevant new information on which to base my sense of where up and down are. is also not defined by fatigue following exertion which can last up to 24 hours as the bogus definitions of CFS describe. The effects of overexertion can last for hours, days, weeks or even many months in M. The onset of these post-exertional effects are very often significantly delayed so that very often the worsening of the illness caused by overexertion has not even begun within 24 hours in M. have to physical and mental activity, sensory input and orthostatic stress not only has nothing to do with mere fatigue (or malaise) but is in fact unique to M. These patient groups do not exhibit the same measurable pathological abnormalities as M. There is also multi-system involvement of cardiac and skeletal muscle, liver, lymphoid and endocrine organs. going back to 1934, when an epidemic of what seemed at first to be poliomyelitis was reported in Los Angeles. A Romberg test is a useful test of damage to the vestibular systems and of brain stem function. See “Another problem with having a vestibular system that is no longer working normally, and that is using visual input to compensate to a large extent, is that I lose all spatial orientation if there is movement in my field of vision; I have no sense of up and down, and of where I am in space. The symptoms are much the same independent of whether I have overexerted physically, mentally or with orthostatic overexertion. with a personal description of the illness to try to explain what it really feels like to have M. This is not just a second 'list' of symptoms - more than 50 individual symptoms (and other characteristics) of M. If that works, I can walk pretty much normally, I just look very odd and walking is still difficult (in no small part because I often can’t really see where I’m going as my head is at the wrong angle! They are caused by my being upright for too long (orthostatic stress) but also from too much mental or physical activity. Myalgic Encephalomyelitis is not synonymous with being tired all the time. is also not the same condition as Lyme disease, athletes over-training syndrome, burnout, depression, somatisation disorder, candida, multiple chemical sensitivity syndrome or Fibromyalgia, or indeed any other illness. 2001, [Online]) (Dowsett 2000, [Online]) (Dowsett 1999a, 1999b, [Online]) (Dowsett 1996, p. Usually I’ll just look at the floor in front of me until the person has passed my field of vision, only then can I continue my walk. is a distinct neurological illness with a distinct; onset, symptoms, aetiology, pathology, response to treatment, long and short term prognosis and World Health Organization classification (G.93.3) (Hyde 2006, 2007, [Online]) (Hooper 2006, [Online]) (Hooper & Marshall 2005, [Online]) (Hyde 2003, [Online]) (Dowsett 2001, [Online]) (Hooper et al. This diffuse brain injury is initiated by a virus infection which targets the brain; M. represents a major attack on the central nervous system (CNS) by the chronic effects of a viral infection. What usually happens then is that the room feels like it is spinning or tilting and I have to hold on to the walls to keep myself standing upright. (The room is still very dark but there is just one small corner of the room lit up so that I can see it well enough to tell which way is up.) It is still quite awkward though as I have to keep my eyes open and looking at where the light is for as long as I can when I am trying to sleep. I started off with a big light but soon found I could make do with a very small one thankfully.

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It's completely unacceptable that despite the abundance of good research available dating back to the 1950s (and earlier), most people with M. today – thanks to the financially and politically motivated creation of the bogus disease category of ‘CFS’ in the 1980s – have little or no information about the various neurological, cognitive, cardiac, cardiovascular, immunological, muscular and gastrointestinal (and other) symptoms which characterise M. Because of the vast amount of inaccurate information being propagated about Myalgic Encephalomyelitis by various vested interest groups (helped immeasurably by the creation of the bogus disease category of Chronic Fatigue Syndrome as well as a number of vague and misleading umbrella terms such as ME/CFS CFS/ME CFIDS and Myalgic Encephalopathy etc.) it is important to explain briefly the myths about M. If a person is very fatigued for an extended period of time this does not mean they are having a bout of M. To suggest such a thing is no less absurd than to say that prolonged fatigue means a person is having a bout of multiple sclerosis, Parkinsons disease or Lupus. is an entirely different condition to these self-limiting fatigue syndromes however (and is not caused by the Epstein Barr virus or any of the herpes or hepatitis viruses), the science is very clear on this point. I have a lot of trouble completing tasks (including walking) when there is any other movement in the room. can recognise fellow sufferers almost in an instant.) Although there is (as yet) no single test which can be used to diagnose M. there are a series of tests which can confirm a suspected M. Myalgic Encephalomyelitis is a debilitating illness which has been recognised by the World Health Organisation (WHO) since 1969 as an organic neurological disorder. (‘Vertigo’ means a sense of spinning or feeling of disequilibrium.) I would be fine if there was a low level light but pure darkness was suddenly a real problem for me. If all tests are normal, if specific abnormalities are not seen on certain of these tests (eg. 2001, [Online]) (Dowsett 2000, [Online]) (Dowsett 1999a, 1999b, [Online]) (Hyde 1992 p. These are well-documented, scientifically sound explanations for why patients are bedridden, profoundly intellectually impaired, unable to maintain an upright posture and so on. is similar in a number of significant ways to illnesses such as , Lupus and Polio. I would have no sense of up or down, or sense of where I was in space and often I would experience vertigo as I result. From org I put together The ultra-comprehensive Myalgic Encephalomyelitis symptom list in 2004 using references from the world’s leading M. E., far more than a purely clinical list of symptoms (even an accurate one) ever could. E., including an accurate general idea of the symptomatology of the illness, become widely known by the media and the wider medical community, as well as the friends and families of sufferers and the public at large. I can see clearly where the real up and down is, but my body (my vestibular system) is telling me something very different. For some time however I’ve wanted to create a second M. symptom list; one which combines the available research with a detailed personal description of the illness and which might more accurately describe what it really feels like to have M. My internal sensors are telling me that in fact I’m walking almost upwards (as if I were walking UP the wall) and that I am in danger of falling backwards, and about 10 degrees or so to the right.




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