dearsue1 Posted September 12, 2006 Share Posted September 12, 2006 I cant believe that M.E is an unrecognised disorder. Doctors dont know enough about M.E so they are'nt always sympathetic. I feel well for couple weeks sometimes couple months even Then wooosh Hits me like ton bricks again. I get to the stage where I feel like I am going into a panic attack. I have been stuck in the house now all the past week. I am into my second week off work due to other symptoms. (which I won't go into). There are websites for M.E sufferers. I tried to join one and they actually charge. Another one said they had too many on there list. Its mad. anyway. While I'm off this time I have decided to do something so I made a new website. I find enjoyment doing my own cards and crystal jewellery. see my link below if you want to check it out. I am thinking starting one for M.E It does help to talk to others in the same situation.So i'm told anyway. check my cards and crystals here, hope you like it. http://www.freewebs.com/cardsncrystals/ please feel free to sign guestbook and add your comments. I will start another one for M.E very soon as it maybe help others. Link to comment Share on other sites More sharing options...
midvixen Posted September 12, 2006 Share Posted September 12, 2006 My daughter has M.E and is a member of AYME. If you are under 25 they are fantastic. The Sheffield M.E Group is also quite good for the adult sufferers. They weren't an appropriate group for my daughter but they may help you. Take care, I know exactly what you are going through. Pace yourself and take each day at a time!! Link to comment Share on other sites More sharing options...
UKSentinel Posted September 12, 2006 Share Posted September 12, 2006 Don't the healing crystals work for M E? Link to comment Share on other sites More sharing options...
cyberghost Posted September 12, 2006 Share Posted September 12, 2006 I cant believe that M.E is an unrecognised disorder. Doctors dont know enough about M.E so they are'nt always sympathetic. I feel well for couple weeks sometimes couple months even Then wooosh Hits me like ton bricks again. I get to the stage where I feel like I am going into a panic attack. I have been stuck in the house now all the past week. I am into my second week off work due to other symptoms. (which I won't go into). There are websites for M.E sufferers. I tried to join one and they actually charge. Another one said they had too many on there list. Its mad. anyway. While I'm off this time I have decided to do something so I made a new website. I find enjoyment doing my own cards and crystal jewellery. see my link below if you want to check it out. I am thinking starting one for M.E It does help to talk to others in the same situation.So i'm told anyway. check my cards and crystals here, hope you like it. http://www.freewebs.com/cardsncrystals/ please feel free to sign guestbook and add your comments. I will start another one for M.E very soon as it maybe help others. M.E isnt an unrecognized disorder a consultant at the Hallamshire diagnosed me with this 7 years or so ago i made a recovery after about 2/3 years he gave me a support group in sheffield for it . He said that it affected my heart and there was new evidence at that time that M.E can infect your heart muscles well a virus infects your heart muscles but at the cellular level very micro.He said that it was now recognized but i think it is only recognized if a consultant diagnoses you.How long have you had symptoms and di you see a consultant?This professor that i saw at the time said that they suspect M.E to be a virus which hasn't been identified but affects or can affect any organ in your body at the cellular level. Link to comment Share on other sites More sharing options...
Plain Talker Posted September 12, 2006 Share Posted September 12, 2006 the sheffield ME group are great. there's a conference coming up in October with some very interesting speakers presenting talks. Conference and contact details below. ANNUAL CONFERENCE 2006 M.E. QUESTION TIME Saturday 14 October 2006 1.30 - 4pm. In the Platinum Suite, Sheffield United Football Ground - Cherry Street entrance Everything you’ve always wanted to know about ME/CFS! Chaired by Andy Kershaw of BBC Radio Sheffield, our panel will comprise: Alan Barker, Homeopath Dr Alan Blair, Consultant Clinical Psychologist Dr Richard Grunewald, Consultant Neurologist Anne Nichol, Occupational Therapist and Clinical Services Coordinator for ME/CFS in Sheffield Dr Alison Wray, Principal Clinical Psychologist, Child Team for ME/CFS Marcus Windle, welfare benefits Advice Worker Please submit your questions in advance by letter, telephone (0114) 292 2311 or email info@SheffieldMEgroup.co.uk. Link to comment Share on other sites More sharing options...
Hels Posted September 12, 2006 Share Posted September 12, 2006 ME is one of those illnesses where there is no diagnostic test so it's a diagnosis of exclusion - my GP explained it as: when all the other tests come back negative and exclude other illnesses. There is a consultant at the Hallamshire (in infectious diseases I think) who has an interest in ME and he gets the referrals. It's also a difficult illness for other people to understand because, while there are some 'core' symptoms, symptoms vary from person to person. And, one can outwardly appear fit and healthy but be virtually bed-bound! I found lots of information and websites about ME. Feel free to PM me. Link to comment Share on other sites More sharing options...
dearsue1 Posted September 12, 2006 Author Share Posted September 12, 2006 M.E isnt an unrecognized disorder a consultant at the Hallamshire diagnosed me with this 7 years or so ago i made a recovery after about 2/3 years he gave me a support group in sheffield for it . He said that it affected my heart and there was new evidence at that time that M.E can infect your heart muscles well a virus infects your heart muscles but at the cellular level very micro.He said that it was now recognized but i think it is only recognized if a consultant diagnoses you.How long have you had symptoms and di you see a consultant?This professor that i saw at the time said that they suspect M.E to be a virus which hasn't been identified but affects or can affect any organ in your body at the cellular level. sorry I have worded it wrong. not unrecognised. I meant to say that its not something docs know much about. I have had it for almost 6 yrs next month. It affects your immune system and the nervous system. Also muscle spasms are bad at times. i have not had much help. Just learn to live with it I was told by one gp. Very insensitive. Link to comment Share on other sites More sharing options...
dearsue1 Posted September 12, 2006 Author Share Posted September 12, 2006 My daughter has M.E and is a member of AYME. If you are under 25 they are fantastic. The Sheffield M.E Group is also quite good for the adult sufferers. They weren't an appropriate group for my daughter but they may help you. Take care, I know exactly what you are going through. Pace yourself and take each day at a time!! I wish I was that age lol. I will be 50 next april. Link to comment Share on other sites More sharing options...
dearsue1 Posted September 12, 2006 Author Share Posted September 12, 2006 ME is one of those illnesses where there is no diagnostic test so it's a diagnosis of exclusion - my GP explained it as: when all the other tests come back negative and exclude other illnesses. There is a consultant at the Hallamshire (in infectious diseases I think) who has an interest in ME and he gets the referrals. It's also a difficult illness for other people to understand because, while there are some 'core' symptoms, symptoms vary from person to person. And, one can outwardly appear fit and healthy but be virtually bed-bound! I found lots of information and websites about ME. Feel free to PM me. I was actually taken into the hallamshire hospital at the time I was really bad. My head was going side to side. uncontrolable. it was the most awful sensation ive ever had. I went through loads tests over 5 days. I was diagnosed then with M.E.. Once everything else was ruled out. I do still go to work but have time off when really bad. It is like one minute you have energy, next you so tired its like you can sleep on washing line. I try and use my energy wisely when I am ok. Just now am going through bad time. Link to comment Share on other sites More sharing options...
Hels Posted September 12, 2006 Share Posted September 12, 2006 It's quite a bizzare illness in many respects isn't it? For around the first year I had it, I had a lot of difficulty speaking because I couldn't remember the next word in the sentence! A friend at work used to fill in the gaps for me, but it was quite embarasing and I used to avoid talking in meetings or on the telephone. Even now I prefer e-mail and electronic communication such as this forum because it gives me time to think about the words. Sometimes though it still gets very frustrating. We've also just recently moved to a bungalow to make life easier. I also had to give up work two years ago. How are you managing your life? Do you get any help or support? Link to comment Share on other sites More sharing options...
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