I've lived with my illness for the past 5yrs. For me it was post viral as is the most common. It is a neurological illness that shares some cross-over symptoms with Parkinson's disease and MS. It is still little known despite there being around 250,000 sufferers in the UK alone. The first case having been diagnosed during the 1930s but significantly, by 1955 the Royal London Hospital was forced to close when up to a third of staff suffered so badly they could not work or, return to work after their initial illness/virus. There is little research done by government and some in the medical profession - particularly among mental health professionals, deem it to be 'all in the mind' - a 'non-illness'. NB: The World Health Organisation, recognises ME/CFS as the neurological disease it is and so does the UK Government. ME is diagnosed as being mild (may still be able to work etc), moderate (unlikely to sustain regular work) and severe which is dire. One is most probably house bound and quite possibly bed bound, and requires personal care. I was forced to retire from my teaching career at 55 and am now just 60. ME, is a largely, invisible and most debilitating illness. I have only recently, come to terms with my 'new' life, what I lost and all those who have over time, drifted away ... Saying NO so often to people who you care about is hard. But when those people fail every which way to have any real measure of understanding - that is also, quite devastating. And one can easily become isolated and worse, invisible. Sufferers of ME can look perfectly well and OK and this is a huge part of the problem - for me. My quest now, is simply to put my enforced, 'Isolation' out there! I am still reasonably active day to day despite my many limitations and would love to speak to, or meet anyone out there who, can manage to maintain a positive outlook despite whatever it is they suffer with. I don't wish to sit and moan about my fate. I want to live my life! That said, I am a compassionate and empathetic character - a good talker - and listener. I love the Arts, music, radio and some TV, film etc, social history, crime drama, foreign language films. I do family research, and travel research. I like to keep the 'little grey cells' busy - or they die! Obviously, I am very limited on certain days but I always do what I can. HELLO!
HELLO
I SUFFERED FOR 5 years but feeling much better now i went on a strict diet of no sugar, yeast, dairy and eggs for 4 month. I take 2 types of probiotics every day and tumeric supplements.I no longer need to sleep in the afternoons In my case it was clearly to many antibiotics that had coursed the ME. Hope this can help Best wishes Bettina
Hi Jo, I have lost so many friends due to this condition. At first, when I declined their invites to go out, pop round for a cuppa etc they were sympathetic and hoped I'd "get well soon".........5 years later (Feb 2014 for me, age 51) I don't get invites anymore or visitors, apart from my children and their families. I feel that people think I'm a fake! I miss my old life, desperately. I miss having the energy to socialise, to go for walks on the beach, even to clean the house, put a wash load on....never thought I'd be saying that!! I'm never depressed but I do get fed up, a lot, I have a little cry some days, mainly out of frustration. I need my old life back.
Sarah
Same post viral fatigue started about 6 years now to be honest i thought it was over had done so well i n my recovery lots of ups and downs ,relapsed virus again but im confident i will recover i am more informed this time i stopped straight away its all about learning for me whatever the virus is its there and i will be more aware of the warning signs which i disregarded . The disrespect for this condition continues unfortunatley friends family neighbours doctors list goes on but i am proud how hard i battled you really have to switch off from the people and remain positive
Hello, Sarah. Thank you for replying to my post.
It's not at all easy or straight forward to deal with ME: well in truth, for me personally, it's more about dealing with others than the ME. It made me smile when you said, that people had said to you, 'Hope you feel better soon.' If I had a pound . . . ;)) The other saying is, 'Oh you're looking well!.' 'Are you feeling better?' I say, Thank you, through gritted teeth and then, '... Better than what?'
I'm sorry to hear that you feel so 'down' about your situation. It's truly disappointing and deeply frustrating when people cannot take the time to understand - or research what is wrong with their friend. Ignorance and fear often go hand in hand I think. People can see in you their own mortality and how fragile it is. That is their fear. Unless they are actually too shallow to feel the fear ;-)
Do I take it that like me, you live alone? Where in the country are you? Did you have a career or job you enjoyed and have had to give up?
You say your children visit you: do they live close by and how old are they?
Best Wishes to You Jo
Hello. Thanks for posting a reply. I'm really pleased to hear that you have had so much positivity around your illness despite the obvious knocks and na sayers. You are absolutely right. Positivity is the key! Keep bollocking on as we say in Yorkshire! Don't let the buggers grind ya down! Stay strong - and well. Jo
hi Jo, thanks for sharing that. it is encouraging and comforting to hear someone else echo my thoughts and feelings. ive been sick for 18 mths and although I have improved greatly I still cannot work and spend a lot of my time doing nothing and resting. soooooo boring , it feels like life is passing me by . Iam 48 years old and love life , usually an optomist lately I am becoming cynical and grumpy. I am still angry that ME has robbed me of so much and apart from tablets to help with nerve pain the rest of my recovery is up to me and the GPs here in NZ although sympathetic cant offer very much at all. Isaw a programme last night where a woman had an autoimune condition that has gone into complete remission after she followed a raw vegan diet for 6 months. I already do dairy and gluten free and low sugar, non processed food diet which I am sure has helped me get this far may be I need to take the further step. Have you ever tried food as medicine? winter is just about to start here in New Zealand and the thought of no hot soup to keep me warm is a sad thought but Id eat rocks to be honest if it worked . Thanks again for sharing , I wish you all the best. kind regards Jan
Hi Jo, I live with my incredible supportive and ever patient husband in the West Country. I own a craft shop that I ran on my own for over 20 years until I got ME/CFS at which point my eldest daughter who is 30, became a partner and practically runs it on her own now. I help when I am able which of late has been not at all. My other children are 28, 26 and 24 (perfectly spaced 😁) and live in Scotland, Brighton (at university) and Ireland. They are wonderful and understanding, they've seen their Mum go from energetic and full of life to what I am now. As for friends I think they are bored of my invisible illness, after all Shirley saw me at the Dentist last Friday and I "look well, so are you better then Sarah?" Oh dear one has to laugh doesn't one. Do you have children Jo? Where are you based?
Sarah
Hi Jan, I'm 56 and I've been vegetarian for 37 years. This last year I've followed a vegan diet, although not raw and have had a very limited intake of sugar (a slice of Christmas cake is all) sadly I have felt no improvement in the ME/CFS. I'm with you on a winter with no warming soup, gosh that'll be a struggle. 😞.
Sarah
It's been twenty years for me now, after a particularly bad bout of Glandular Fever. I improved a little for approximately five years but then my condition plateaued and I've been mainly housebound ever since, though very occasionally I try the odd venture out but like all of us, usually pay for it.
Luckily I've been able to work a little as I'm a professional artist (painter) though my output is very limited but thankfully I have enough regular buyers here and abroad to absorb what I do paint.
I've tried just about every diet, and supposed treatment for ME, all to no avail and now just accept this is how it is from here on. I was under a consultant at the local hospital but unfortunately, although young, he committed suicide after a bicycle accident and increased pressures of work, and they haven't replaced him.
One of the problems that I've found with the medical profession is that they tend to write off every problem that you have, down to the ME, which meant they missed an arthritic collapsing hip till I was in a wheelchair, saying it was damage to the nerves from ME and not even bothering to x-ray it.
The same occurred with a heart problem ( common to ME sufferers) till I was rushed to hospital for treatment after bad episode.
Most of us long term sufferers have been through the mill over the years, losing friends and family in the process and the one consolation is that younger sufferers are likely to have the best outcome, the rest of us "mature" patients, unfortunately less so. Still we battle on as let's face it, there's not much of an alternative .... :-)
I have been suffering from ME/CFS since 2013 and I'll be 56 on May 30. I tend to be mostly home bound although I can get out once every two weeks or so for about 4-6 hours. I am an artist and photographer, and my saving grace is I can still create my digital paintings to keep my brain engaged. I'm also a member of two artist guilds here in Nashville, Tennessee. Although I am unable to drive, my wife is kind enough to take me two my meetings and showings when I am feeling up to it.
I was turned on to a Dr. Jarred Younger on YouTube back in December. Dr. Younger gave a presentation of his new research findings that indicate brain inflammation plays a significant role in the pathophysiology of ME/CFS. With pilot funding from SMCI’s Ramsay Award Program, Dr. Younger used a non-invasive imaging technique to measure temperature and other brain chemistry indicators in individuals with ME/CFS and control subjects. The results showed distinctly elevated brain temperature, indicative of inflammation, in patients.
I forwarded the link to my Neurologist and his associates to give them a better understanding of the science, current research and symptoms. I won't post the link, as I know the mods will remove it. However, if you go to YouTube and enter: ME/CFS Involves Brain Inflammation: Results from a Ramsay Pilot Study you will be able to view it.
The involvement of brain inflammation in the development and progression of ME/CFS has long been an area of interest, but there has been a lack of direct evidence to support the connection. This seminal study further validates that neuroinflammation is occurring in ME/CFS patients and has the potential to point the way to an objective marker and effective medical treatments.
I highly, HIGHLY recommend watching it, and sending it to your new Doctors to help them understand more clearly the scope of the disease.
Thanks Jo sure thing i like that slang made me laugh stay postive yourself
Dear friend, Thank You, so very much for expending your precious energy to get in touch! The information is most welcome and I shall indeed look up the YouTube study. You sound to be very positive, and it's wonderful that you have such a supportive partner and remain active in what you love most. This is priceless. I was an adult Tutor and Chef in my past life and an avid walker: but now although I can stroll around most days if I'm careful and manage my energy intelligently - I miss being up in the hills and rambling around by lakes and rivers. No matter. I have carved out a pretty decent life and although I live alone, I manage to 'get by' as independently as I can. Little things mean a lot! I feel so grateful and I know this helps me too. Hey, thanks again ... Warmest Wishes to You and Yours, Jo
Hi jo just thought i would point out that meditation helped me when nothing else did also i did see a physio who performed the perrin teqnique now all i can say for me it helped me but at the start it flared up my symptoms with my m e my nervous system was just completley whacked out and i think it just calmed things down but please be aware this doesnt help everyone and its no quick fix cure i still do the tecnique myself but i really cant say how much it helped as it took 4 years for me to get back to i would say 80 percent better maybw it was just time and i rested a lot
Hello, Sarah. Thanks for getting back to me, and for sharing ;))
It was really lovely to hear your 'story', and where you are with family etc - so many! Offspring aside, I'm not too dissimilar: I'm in W. Yorkshire near Hebden Bridge - a Crafters' paradise or so I'm told ;)) It's full of old hippies, modern hippies (??) and Liberal/feral sorts hmmm ... It's a wee bit cliquey. But inclusive in other areas. I know it is a good enough place to have this frustrating illness: I sometimes imagine myself wearing an invisibility cloak - I wish! At least I can enjoy my coffee by the river, and people watch ;))
My one and only son, James, 25, remains at University in Newcastle, taking his Masters in Illistration/Animation: he's the 'Arty' one, while these days, I express my creativity through food - when I have energy (I'm a Veggie, but now, I do occasionally eat oily fish when my body demands it. We must take our pleasures where we can find them!I
I was at the Dentist too, last week. It is something I dread. My adrenaline shoots into over-drive: the young Dentist, was all for stopping my filling mid-treatment. I just get the most awful tremor. The Dentist asked me if I had fits? It does subside again over a couple of hours and leaves me with the pain - but hey ho. I have been thought to be drunk on occasion - which isn't so amusing :o)
I am enjoying the sunshine here ... Jo
Thanks for the reply, Jo ...
I was also a professional photographer covering sports and music/entertainment. Since I can't do that anymore, I have lost that personal contact with friends and crew that I worked with through our many gigs that we have worked together over the last 20 years. I am able to stay in touch via Facebook, but that just isn't the same. I also played and coached ice hockey for over 40 years and I miss that as well!
However, my biggest disappointment is not being able to join my wife for a lot of things that make her happy as it is a direct catalyst for most of my ME symptoms. :-(
Hi Jan, It's lovely to hear from you!
Firstly, it is fantastic that you say, 'You have improved greatly!' Hold on to that! I kept a diary for the first 2yrs and when I felt hopeless, I read it and realised how much I'd improved - small things like eating a meal ;)) My employers kept the pressure on me for those first 2yrs, visiting me at home every month ... then they 'let me go'. So ...
I empathise with your 'anger' and of course the frustration that goes with that. You are in an early stage of your illness and this is to be expected. I felt angry for the first 2 or 3 yrs! Anger per sa isn't good as it robs us of our precious energy - and of feeling better. But it's a natural emotion none the less. A vital stage we must acknowledge and hopefully, pass through. Understandable.
To answer your question directly, Jan, Yes, I have lived my life with food as medicine. I have been Veggie for 35 of those 60 yrs - and a healthy veggie too, not junk food. I have always been active: swimming, cycling, rambling ... and it kept me sane.
I have passed through the stages of anger, depression (I do not suffer depression), and grief for all I have lost: career, home, friends and a partner. But without going into too much detail, I am now in a good place of acceptance. For this alone is what I now believe will help me heal: progression, positivity are all I hope for day to day. The rest will come.
In addition: I personally don't believe that any restrictive diet will heal me. Of course eating healthily will do us nothing but good! And our individual preferences must be respected. This aside, Jan, I know too many with ME/CFS who, have spent a small fortune (myself included) on 'alternative supplements' and who, like you said, would 'eat rocks' if it cured us - we - would - do - anything!
ME, is a neurological condition, Jan. I believe that it is connected to IBS (which, I suffered from as a child) our gut is vital to our well-being. BUT ... you must do what you feel makes your body function best. If you want hot soup for pities sake HAVE IT! Your mental health is again, a vital piece of the 'puzzle' that is good/poor health.
I will share with you one thing, however, because it saved my sanity: I have suffered throughout with the most appalling, sleep deprivation. The menopause was a walk in the park in comparison! But I have now discovered that one Histamine (non addictive) tab at night, plus or, alone, I take 5drops of CBD oil under my tongue and if - I have a dental treatment or similar, 3 - 5 drops (10% oil) just before a treatment helps enormously with the adrenaline rush and tremors I suffer. I also found that Sacro cranial massage helped every month or so but this caused me tremendous pain at first. It works on muscle memory and my body was in shock!
It would be lovely if you kept in touch. Let me know how you go on?
Warmest Wishes from W. Yorkshire, England. Jo
Happy that you are feeling much better. Jo
Hi.. Sir ,5 year ago doctor did my EPS to reduce my heart beat. Now from 5 year i have heart sinking problem. I cannot do exercise. When i do rest after walk my heart feel difficultly to become its normal place. Many cardiologist check me and said my heart is ok. Do i have CFS. I dont know. Doctors said i have anxiety. Many time post here and people became anoyed by me. From last 3 month i am in hospital emergency in after very two days. My life is ruined. My age is 38. Alot of money i have been spend on doctors fees and medicine. Psychologists have been checked me . I took psycho medicine but no improvement. Day by day i m going down. What i do. I m post my post to every body of you. Hope hear good from you. Best wishes for all of you.
Hi.. Sir ,5 year ago doctor did my EPS to reduce my heart beat. Now from 5 year i have heart sinking problem. I cannot do exercise. When i do rest after walk my heart feel difficultly to become its normal place. Many cardiologist check me and said my heart is ok. Do i have CFS. I dont know. Doctors said i have anxiety. Many time post here and people became anoyed by me. From last 3 month i am in hospital emergency in after very two days. My life is ruined. My age is 38. Alot of money i have been spend on doctors fees and medicine. Psychologists have been checked me . I took psycho medicine but no improvement. Day by day i m going down. What i do. I m post my post to every body of you. Hope hear good from you. Best wishes for all of you.