The M.E. Assoc posted about the British Medical Journals statement about M.E. people fearing exercise. This is what I wrote: • I think these so called professionals are making themselves look like idiots. How can they know what is right and proper for this illness, when not enough research has been done to find out how we came to be ill in the first place? Is this a stock response to all illnesses, e.g. does it apply to cancer, MS, Lyme, MND, Parkinsons, Alzheimers? This exercise bit - of course, if someone just lies in a bed 24/7 they will just deteriorate. Why cannot they say, If sufferers could be shown how to PACE, and use their small amounts of energy in terms of units each day, that would not be so derogatory and condescending. Its all bollocks, anyway, excuse my french. Mine was brought on by a virus that stayed in my body and didnt go away during the 9 months the testing was done. Whether M.E. or not, that is what they labelled me with, 28 years ago, and I could write the book on my symptoms, which are very much in line with Dr Ramsays, except I had what looked like a mini stroke, and whenever I do too much, my legs, literally, collapse under me. No wanting or not wanting to do something. I tried tai chi, yoga, aqua aerobics, gentle swimming, worked my way back to 8 hour days, doing 2 hours a day (very busy job), and even managed to study law. My M.E. literally feels like Flu, Glandular Fever, and I have run a marathon. There is NO part of my body that doesnt ache and feel like I am carrying around a massively heavy suit of armour, and I have slurred speech, no speech a lot of the time, hands that shake (like in Parkinsons), cognitive problems, memory problems, sensory overload, blurred vision and on and on. I have never once sat on my bum and done. Ive tried, pretty much, any and every alternative therapy out there, including the NHS course, the Lightning Process, Reverse Therapy, Chinese medicine, acupuncture, change in diet. I have kicked myself backwards and forwards trying to get myself well again, and I would LOVE, just LOVE to meet up with these people who are coming out with this tripe. I have written on Twitter, also, to ask Dr Wessley to meet up with me. No response. No-one gives a toss. I am really hoping someone finds something in our guts, that they can give us help for. At the moment, it would be useful if we could all be assessed somewhere were they could test our bacteria to see what problems, we have, advise us on how we can get the balance right, what foods will help, antibiotics we might need as well as probiotics, and meditation techniques. Also, to check for heart problems, POTS, sleep apnoea &c that many sufferers have to deal with. With barely any energy as it is, we are all chasing our tails and paying out monies we dont have, in order to have some semblance of a life again. Yet the Public and medical professionals think we are just lazy malingerers. Ironic.
Posted on: Fri, 16 Jan 2015 11:57:22 +0000
Trending Topics
Recently Viewed Topics
© 2015