chronic fatigue syndrome 15/11/08

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Has anyone any experience of oxygen or ozone therapy as treatment for this condition? or had success with any other treatment?
 
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Re:chronic fatigue syndrome

03/12/09

"racing heart" - if you have strange irregular heart beat or racing heart, and suffer chronic fatigue, maybe disturbed sleep, maybe night fevers, headaches ... the list of symptoms can start to sound like it relates to Lyme disease. This is cause by a bacteria that invades all body tissues, including the heart and brain. It can lead to a need for a pace maker. see www.bada-uk.org for more information about the condition. It is difficult to diagnose - most UK doctors do not seem to see past CFS/ME to identify what all the many symptoms indicate; they tend to react badly, thinking their patient is a hypochondriac. Keep a precise diary of all symptoms, when they occur, sleep patterns, fevers, rashes, joint pain, muscle aches, headaches, etc. Your diary is the best hope of identifying whether your many symptoms might relate to Lyme - the blood test is unreliable and difficult to pursue on the NHS. I bet your doctor didn't ask you whether you might have been bitten by a tick? Maybe you do not know nor remember, but if you do, then that would be another indication that you might have lyme disease.
 
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Re:chronic fatigue syndrome

03/12/09

To aid diagnosis, perhaps soon, or perhaps when you are ready or decide to, keep a detailed symptom diary. For instance, keep note of any and every occurrence of fever or night sweats, of aching joints, of aching muscles, of days you were feeling better, and of mood changes, and of whether you eat anything unusual. Keep track of hormonal aspects and of any medications you take. Most people with CFS seem to be diagnosed with ME - CFS of unknown cause and unknown treatment. This is not necessarily going to help you get better - a good diagnosis will help you know WHY you are feeling fatigued. What the cause is or was originally. Suppose that with the help of your symptom diary, after 6 months, you, maybe with some help, could summarise the notes and spot a pattern that had not been obvious? Maybe, whilst under treatment for a different infection with antibiotics you suddenly felt better... maybe whilst on holiday in the sun you felt better... If a diagnosis indicated that your fatigue was the result of an infection and this could be treated and cured, you would want to know. If the cause proves to be Lyme disease resulting from a tick bite, then this needs to be treated urgently. see http://www.wadhurst.demon.co.uk/lyme/ and www.bada-uk.org for more information so that you can try to eliminate this possible diagnosis. Obviously try to eat a healthy balanced diet,, see your friends socially or talk on the phone, get sufficient sunshine - perhaps by sitting on a chair in the garden. Good luck.
 
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Re:chronic fatigue syndrome

01/12/09

I have been diagnosed withM.E. but doctor have dismissed food and chemical allergies,by turning their heads away. Racing heart also after wheat etc. No answers from them. This has been going on for 15 years. But it is almost certain that the stuff in our food nowadays and the chemicals around us, as causing some of these conditions I feel sure of it, as when I avoid these - I am much better ONE NOTE TO PEOPLE WHO SAY "ITS ALL IN YOUR MIND", IF YOU HAVN'T GOT IT - HOW DO YOU KNOW SO MUCH ABOUT IT ?? If you have it - you know all about it believe me. I wish it was all in my mind, the cure would be easy. !
 
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Re:chronic fatigue syndrome

23/09/09

Hello My daughter who is 35 and living in New Zealand has just been diagnosed with ME. I am very worried about her as she has been depressed for the past 5 years and has become estranged from us here in the UK. She does keep in touch by email but raher sporadically. You mention Tymes Trust would that be available to her in New Zealand? I don't know anything about the condition although I have heard of it and it does sound very mysterious as though not enough research has been carried out. I am glad to have read your piece and others too, but you were difficult to locate on the site. Many thanks IB
 
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Re:chronic fatigue syndrome

12/08/09

Unfortunately many doctors don't fully understand ME/CFS, and worse many don't even believe in it. The fact is that everyone with ME/CFS is different. Some respond well to graded exercise therapy and some crash and burn. I crashed and burned with it almost straight away. I don't know about any problems or benefits with being diagnosed, but Id be a little careful about your doctors suggestions. There are plenty of forums and sites on-line that can give you more helpful advice. The bottom line seems to be that you need to find your own point of balance, doing as much or as little as you can without causing yourself to burn out.
 
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Re:chronic fatigue syndrome

11/08/09

I'm not sure if I have CFS or not but have struggled with fatigue for a couple of years. Some days I get really upset because I do not have the energy to socialise with friends. My doctor suggested I had CFS but advised me not to be diagnosed as I would then have to declare this on forms etc... Is this a usual response? Should I push to be diagnosed? Is there any benefit to a diagnosis if there is no real treatment? I too was advised to do extra exercise in a morning. I struggle with this because usually by lunchtime I am flagging at work and have to try really hard to get through to the end of the working day. If I do extra exercise I fear that I will actually feel worse for the rest of the day.
 
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Re:chronic fatigue syndrome

04/08/09

Looking at the replies here it seems that an ME/CFS section would be very helpful on this site. There is a major problem in that half of the medical community do not believe this problem exists, and those that do spend their entire time arguing about what it is. We need help, and quickly, but we are never going to get help of any kind until there are more serious sites taking this seriously - Sure there are plenty of user forums about ME/CFS, but with all due respect (I belong to several of them) they are amateur and no-one of any importance is paying any attention to them. The horror stories that are told about this condition are just as heart wrenching as any, and yet no-one bats an eyelid no matter how many people are talking. Perhaps a proper mention on a more serious medically aligned site would bring the plight of so many into a sharper focus. I would be glad to share my own experiences of this should such a section be added to the site.
 
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Re:chronic fatigue syndrome

04/08/09

Got this from Wiki... Chronic fatigue syndrome (CFS) is the most common name[1] given to an inadequately understood, variably debilitating disorder or disorders characterized by medically unexplained symptoms.[2] It is also commonly known as myalgic encephalomyelitis. Symptoms of CFS include widespread muscle and joint pain, cognitive difficulties, chronic, often severe mental and physical exhaustion and other characteristic symptoms in a previously healthy and active person. Fatigue is a common symptom in many illnesses, but CFS is a multi-systemic disease and is relatively rare by comparison.[3] Diagnosis requires a number of features the most common being severe mental and physical exhaustion which is "unrelieved by rest", is worsened by exertion and is present for at least six months. All diagnostic criteria require that the symptoms must not be caused by other medical conditions. CFS patients may report additional symptoms [4] including muscle weakness, cognitive dysfunction, hypersensitivity, orthostatic intolerance, digestive disturbances, depression, poor immune response, cardiac and respiratory problems. It is unclear if these symptoms represent co-morbid conditions or are produced by an underlying etiology of CFS.[5] Full resolution occurs in only 5-10% of cases.[6] CFS is thought to have an incidence of 4 adults per 1,000 in the United States.[7] For unknown reasons CFS occurs most often in people in their 40s and 50s, more often in women than men,[8][9] and is less prevalent among children and adolescents.[6] Because there is no medical test which is diagnostic of CFS, the disorder remains a diagnosis of exclusion based largely on patient history, and is a "purely subjective condition."[10] Whereas there is agreement on the genuine threat to health, happiness, and productivity posed by CFS, various physicians groups, researchers and patient advocates promote different nomenclature, diagnostic criteria, etiologic hypotheses and treatments, resulting in controversy about many aspects of the disorder. The name CFS itself is controversial as advocacy groups as well as some experts believe it trivializes the illness and have supported efforts to change it. Many alternative names for chronic fatigue syndrome have been proposed. We all know what it means and how it hurts.. What is the Gov doing and do the doctors know what they are doing...
 
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Re:chronic fatigue syndrome

04/08/09

I am really lucky that I have a GP that takes my condition seriously but I do find that other people find it very hard to understand how I can change so quickly from a relative healthy looking person, to someone who can hardly talk and walk. I agree about having more links on line to people and for more of the medical profession to take to condition seriously. I was a fit heathly women until 2 years ago and I sudden got struck with severe fatique. I have gone from someone who never took a sick day at work to now being off approximatley every 8wks. I have found the ME Association a great help, just for helping me put my life into prespective but I am starting to understand that I have to control my life day to day so not to let the condition control me. I would really appreciate a section on this site, not only for those of us who are suffering but also for carers and loved one so at least they can read what we are trying to convay.
 
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Re:chronic fatigue syndrome

04/08/09

Hi, please as a matter of priority include m.e as a topic on this site. It is i feel an epidemic which needs to be taken extremely seriously. I am in a family of 6, 3 of whom have m.e, myself and 2 of our children. I know of many families with more than 1 member suffering. The only advice i can give after dealing with this illness for more than 6 years now, is pacing and ENADA CO-E1 which is what i call my go faster pill! If any of you have children recently diagnosed, i would recommend you contact the TYMES TRUST, who are extremely helpful with info for education. Otherwise good luck to all sufferers and keep hopeful of a cure soon, things seem to be going slowly in the right direction. x
 
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Re:chronic fatigue syndrome

04/08/09

CFS doesn't seem to be taken seriously at all my the medical profession. I too have presented with real symptoms only to be told that I was imagining it, or that a good run in the mornings would sort me out. The internet has been very helpfull in enlightening me to the different responses CFS sufferers get from their GPs , and all of them are the same as mine. When people are suffering long term, it is very, very hard to search for info for your self. There are a few independent doctors that are indeed researching and treating CFS/Lyme patients, and all of them are approaching it from a massive bacterial infection point of view, and are treating with targeted antibiotics. A biomedical view of the illness is not an option for our medical professionals it seems. I to think that a CFS catagory should be here in this forum. I would love to hear about any news of progress into the research (if any) of this very debilitating illness.
 
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Re:chronic fatigue syndrome

04/08/09

Iv tried a few (not those mentioned) but had no success. In fact Iv had to hunt out all and anything for myself since my doctor has no real idea what ME/CFS actually is. For the most part Iv dealt with things for myself, and I'm a little disappointed that the main site here does not have a section for this problem.
 
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