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Sue | sue~AT~dodwellbros~DOT~co~DOT~uk
I was diagnosed a year ago after just 2 months of symptoms, During 2010 I ran a marathon and continued to have a very busy year, running a half marathon in later that year, After having the flu in December, i tried to get back to gentle training in january but felt awful, nothing seemed to pick me up, The feeling of exhaustion continued and I had no other option but to stop all exercise in February 2011, Like anyone who suffers with CFS, we grief for the life we had, After having accupuncture for 4 months my symptoms are much improved, I can get through the day doing moderate duties, Sadly after a busy christmas and having to fight of a cold i had a relapse in January, This is mental torture, I am so frustrated to point of screaming at everyone, help me !!
I have a very supportive family and i know from what i read that being able to take a walk and do the shopping etc, makes me lucky, I do know that acupuncture has made this happen, it reliefs the symptoms which enables me to balance my lifestyle around CFS, Sadly it doesn't stop me feeling so isolated and watching the person i was disappear,

29 January, 2012 at 14:55 - Nothumberland


Dawn Riddle | dawn~DOT~riddle~AT~ports~DOT~nhs~DOT~uk
I was diagnised a few months ago with CFS and am receiving CBT, This weekend I have had a relapse and today cannot function, Is this normal for this condition, I do not know anyone else with CFS to ask,

23 January, 2012 at 16:35 - Portsmouth


Neil | Neil1ashdown~AT~btinternet~DOT~com
Does anybody know how I can get my verification to access this site

16 January, 2012 at 03:16 - Southend on sea


Carol | carol~AT~it-teacher~DOT~co~DOT~uk
I wonder if there is any chance of changing the background of the this site to white? I'd love to read the site, but I can't look at it for more than a few seconds as the contrast is making my eyes go funny,

11 January, 2012 at 03:57 - UK


Jeff Morrison | jeffmoz50~AT~hotmail~DOT~com
Hi to all,
I am a 46 year old male diagnosed with lupus nearly 4 years ago, Probably 5 years or so prior to diagnosis I had noticed what at the time were subtle changes, i,e, unexplained rashes, getting tired more easily than normal, becoming increasingly forgetful, At first I assumed this was simply just part of getting old, however after maybe two years or so and things only getting worse I sought some help with my then doctor, who only proved to be of no help at all, I must add at this point that I can pinpoint the start of my issues to approximately co-inside with a very stressful part of my life where I attempted suicide and I was diagnosed as depressed and my then relationship was very traumatic, I also had two operations that caused me a lot of distress, Depression and the operations and my bad relationship caused me to have a lot of time off work which on their own was stressful with money worries, Anyway my relationship broke down so we split up and I lodged at a friend's and did not move out of his house for seven months (I was in a dark place), Eventually my friends eased me out of my gutter period and slowly introduced me to a social life where upon I met my now wife, We now live in a different area so I changed my doctor, The change in doctors led me to eventually get my diagnosis for lupus, Since my relationship break up in Jan 2007 I eventually went back to work probably mid 2008 and from that time I found it increasingly harder to hold down my job of a builder, symptoms crept up on me quite slowly to a point that a day's work saw me taking three off to recover, At this point in time I find that anything I do that involves me being more active than just doing nothing has consequences, Chronic fatigue, lethargy, a feeling of lack of muscle control especially in my legs, uncontrollable muscles twitches and spasms, My short term memory causes me great distress, it's very hard to put this into words, I sometimes feel as though I live my life from day to day not knowing what yesterday held, I had to give up work almost two years ago now and trying to find a way of telling the benefits office how I really feel and how debilitating it is for me is really difficult, If you met me for the first time, other than the permanent rash on my neck you would think that I was fit and able bodied, but this could not be further from the truth, I am still diagnosed as severe depressed and taking 45mg mirtrazopine daily and I know that I have issues that are related to my lupus, but after reading literature on M,E, I think it quite possible and probable that I may also suffer with M,E, The things that sufferers describe and the symptoms they endure do actually describe myself, I have struggled for a long time to describe what I go through, but have now found (I'm sure) the cause, I feel enlightened but need a diagnosis from empathetic people, This would put a form of closer on a huge part of my life if anybody can help me to get out of the gutter I'm currently in, PLEASE, Jeff Morrison

6 January, 2012 at 04:32 - Manchester UK


Neil | Neil1ashdown~AT~btinternet~DOT~com
I have been diagnosed 2 weeks and have found this website very good, I have tried to become a forum member twice but have not received my authorisation, I feel really quite lonely and if I'm honest need help, I have spoken to people but still feel trapped in my own head and feel like I'm being really lazy and just can't be bothered with anything or anyone, then feel racked with guilt for it

20 November, 2011 at 19:03 - Essex, england


louise | louisemayo68~AT~talktalk~DOT~net
i have only had my diagnosis a week not sure if i feel better knowing what i have or not, i have spent the last 4 years thinking i am on a premiture memopause because the symptoms are so alike ,i have had blood test after blood test trying to catch my hormones out as they always come back normal and if it were not for a lady i have become friendly at college with who suffers from cfs i would be no wiser now to my condition, im very luck that my GP is very understanding, when i went to her with my theory that i could have cfs, she ordered more blood tests to rule out all other conditions and said to me i think you could be right a month later i go back and am told my thyorid is boarder line and needs doing again in 6 months and i am a little low on folic acid she gave me some tablets for that and she had already filled in the forms to refer me to what i guess is pace but im not sure, not knowing much i asked her is it them that will say if it is cfs or not she said no im telling you that it is,(one thing that dose confuse me is there a differance between cfs and me?) iv asked her to do me a letter to the deprtment of work as i am in the middle of trying to convince them im not fit for work as i have a prolapsed disc in my back and can only sit or stand for short times i had no problem getting a blue badge last year but they still say after an assesment from there doctor im fit for work HOW THE HELL can he tell after asking me a dozen questions that iv already answered and what they call an examination and noted i carry a medum sized handbag i can work i am waiting for my regastraion to be approved and hope to gain a lot of insight to this condition and how i can help myself which i know its not going to happen over night and the fact my 10 year old dautgher has ADHD is going to be a problem, ( more with me feeling guilty about resting and not doing things with her) than her letting me rest oh well iv gone on long enough sorry, i do feel better tho many thanks louise

10 November, 2011 at 03:04 - england


Richard | mecfs~AT~n19~DOT~org
This seems to be a very helpful website,
I've had ME for almost 20 years now and as you'll all know it's not a lot of fun and not very predictable,
I just wanted to share with you a few tactics that have helped me, they don't make ME go away but for me make it more bearable,
1, Listen to your body, If you start to get tired or feel symptoms coming on, slow down and stop, OK sometimes there are things that you have to do and you can't stop but often you don't really have to continue, it's just a habit,
2, Cultivate a certain level of acceptance about having ME, try not to demonise it and make it the enemy to fight,
This is not to say give up on trying to get better or more well, Keep trying different things that might make you better but at the same time try not to be too attached to the outcome of your endeavors, If it doesn't work, and you are attached to the outcome it will just upset you, Regroup your energy and try a different way,
3, Enjoy the good times, but don't overdo it just because you're feeling a bit better,
4, Remember you are not alone, though you often feel that you are, Many people are trying really hard to try to find an answer to what this disease is and how to help all those who are suffering,
5, Be compassionate and loving to all,

8 November, 2011 at 19:33 - London, England


Mags McCann | magsmccann~AT~yahoo~DOT~com
I have been reading the list of CFS symptoms and I think I probably have this condition, I have had symptoms for almost two years, My worse symptom is in my legs, I cannot walk far, even going up and down stairs exhausts my legs, I am always tired but there are times when i just feel totally exhausted and I have to go to bed, My GP;s are very good and have ruled out Arthritis and other conditions, Fibromyalgia has been mentioned but not CFS, I do not think that I have FMS but I will mention CFS to my GP on my next visit as my walking difficulties are getting worse, This website is very informative and I am so glad that I have found you, Thank you, Mags McCann, PS, Im currently fighting the ESA and have my tribunal on tuesday nov 8th, im so stressed over this because i do not have a diagnosis,

5 November, 2011 at 13:17 - Belfast Northern Ireland


david pratt | dpratt8355~AT~yahoo~DOT~co~DOT~uk
Thought you might be interested in the epetitions on the government website in UK, To be debated in parliament, over 100,000 must sign the petitions, It worked for the Hillborough football fans only this week! Perhaps a chance for sufferers/their carers to get government to do something about it! The closing dates are as early as Feb 2012, so not much time to sign up to them, My wife has had this illness for 4 years,

Biomedical research into ME/CFS can be found on epetitions,direct,gov,uk/petitions/491

Make public documents currently hidden under the Official Secrets Act about ME/CFs until 2072, can be found at
epetitions,direct,gov,uk/petitions/14242

Scrap one-year limit on ESA can be found at
epetitions,direct,gov,uk/petitions/17815

I wonder if someone more knowing than me could put on a new petition about the reputed case that the WHO definition of the illness (neurological illness) does not align with the NHS adopted viewpoint (phychological illness)?
This could force the NHS to treat patients differently,

21 October, 2011 at 05:14 - UK


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