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Alison Bailey Castellina's Profile
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To see this video, broadband connection preferred (with speakers). Otherwise ...just read the text below!
Dear ME/CFS Friends and Carers
NEW YEAR MEDITATION 2008
Almost exactly a year ago, I sat in this chair and made a video message which is still on You Tube. In that message, I said that I have been a UK support group leader and a member of the UK Chief Medical Officers Working Group on ME/CFS and have seen a lot of people with ME over the past twenty years. I myself had ME/CFS for many years but through diet and allergy treatment I got myself back to full-time work. My life was dedicated for over ten years to making a recovery. My story in photos and text and the details of my regime are on my website
On my website, patients can find lots of practical advice on how to tackle ME/CFS and useful wheat-free recipes designed to boost your immune system. It has been read by many ME/CFS patients, including leading athletes and medical professionals with ME/CFS, who urgently need sensible advice on safe levels of exercise. I urge them not to do any exercise in severe ME/CFS, except gentle walking. Even mild taxing exercise can make one much worse. Sections of the medical profession still treat ME as psychological and recommend taxing exercise. But as one leading doctor with ME/CFS tells us, his colleagues have "no idea how devastating this illness is" - they just cannot imagine the physicality of it. Exercise regimes are coming out of a wrong diagnosis of ME/CFS.
A year further on, in my recovery, I rarely think about having ME/CFS. I no longer make "mental boundaries" for what I could and cannot do. Instead of saying to myself, "I must not even try that" I think, "Yes, why not - I am strong again!" I have even recovered from my sensitivity to light, which is a symptom which for me took a long time to disappear, and which was a big problem for me at work. I'm still careful with diet, I avoid chemicals, processed foods, colourings, vaccinations and any heavy exercise. But I can now climb gentle hills, easily. In 2007, due to taking a course on "interviewee skills" , I was promoted at work and have a good career again. Under the law, it is now possible to get automatic interviews if you have a disability. The law in the US and EU is there to protect you. Having ME/CFS should not be the end of your career, if you are able to function at any level in employment. Don't be afraid to tell your employer about needing career support in ME/CFS, and get advice on your legal rights.
I still advise ME/CFS patients that this is a very crippling, organic illness. They must put everything into the fight to get better, I emphasise timing in ME/CFS. Do these things now rather than after you have tried other costly things, which do not work. This is because life with chronic ME/CFS is dire. Those patients not getting better, tend to get worse. I recall the continuous pain, the social exclusion, the cruel disbelief, the impossible brain fatigue, the sense of "fighting for one very soul", the fear, the powerlessness, one's desperation at the sheer invisibility of ME/CFS.....the list goes on and on. No one can see the devastating condition of the powerless, damaged brain, nor imagine the levels of utter physical weakness.
This year, I want to talk about where to turn in ME/CFS. You know, apparently "bad things" happen, even to people who have turned to God. Suffering is no different for them, only they find that putting their trust in God makes a difference, even in ME. For one thing, the Bible offers many reasons for suffering which is healing in itself. These reasons are set out on my site.
My Christian grandmother once told me something, which has always remained with me. She said that in her life bad things happened to her and she could see no reason for them, and yet, looking back from the end of her life, she saw that her whole life made sense. When we get ME/CFS, we do not understand why we got it, or any reason for having it. However, through faith, God can become very close and personal for us: one real friend we can talk to. He sees the experience "backwards", as it were, from the point of view of its "meaning". We can ask Him to lead us according to His purposes and to the best doctors and treatments and to give us the resources to bear it, day by day. And we can pray. I even prayed for a website to offer support to people with ME/CFS. It "materialised", some years later. I prayed for wisdom and strength to get through each hour's "trial". Even the utterly weak are given strength. When I could not stand up, I prayed for a little strength, to care for myself, and it came. God is stronger than ME/CFS, even though it often feels as if nothing is stronger. ME/CFS is a mighty test of obedience and faith which can be won through trusting in God.
I dont know if you have considered turning to Jesus Christ in ME/CFS? Perhaps He feels so remote or you dont know how to? Well, if you want to know more email me, through my site. It does involve admitting that one has had wrong attitudes and that one has said and done wrong things. But does that matter? What does one have to lose in ME/CFS, having lost almost everything already?
I am talking right now to someone completely abandoned, rejected and in desperation. Your family have cast you out, you are without money, in pain, in mental confusion, unable to speak. Your partner has left you or you may be losing your child, through being unable to care for him or her. Your life and heart feels utterly broken. No one believes you are physically ill. You have no one to turn to. You see your situation as beyond recovery, and even beyond God's reach. You have cried out to God, but He seems silent.
Well, allow me to tell you a funny story:
One night I met a drunken man who was kneeling down looking for something under a lamp post. I asked him what he was looking for and he said "I am looking for the key for my house". I said, "Where did you lose it" and he said, "About a hundred yards, down there". "Well", I said "Why are you looking for it, here?" He replied, "Because there is light here".
Well, Jesus is the key - but you need a light - and that light is your willingness to search for Him, with all your heart. The Bible says this "You will seek me and find me. When you seek me with all your heart, I will be found by you, declares the LORD"
Whether you are already a Christian, or just looking for God, He is always there waiting for you to commit yourself to Him with all your heart. Then, He will answer you. The Bible says that it is committed believers prayers which are heard and it is they who are shown exactly what will help them.
I hope this information and encouragement will help onto the road back a more fulfilling life and that you too will be able to look back as I can and see a "special meaning" in everything that happened to you in ME/CFS.
May God Bless you in 2008.
NEW YEAR MESSAGE IN 2007
Dear Friends with CFS/ME and ME Carers,
Thanks for opening this video message and welcome to my ME/CFS site. Can I just introduce myself? I am site creator, Alison, a UK support group leader and member of the Chief Medical Officer's Working Group on ME/CFS. On this site, I am not encouraging political action or even challenging the definition "CFS", which like many I do not believe adequately reflects the true condition "Myalgic Encephalomyelitis". I now understand that the main thing we can do for people with ME/CFS in the current hostile climate, is to help them get better. Sadly at present, the only real help for patients, is partial or full recovery.
I contracted ME/CFS in 1984, just over 22 years ago. But I now work full-time and am enjoying life again, through allergy treatment and eating a very healthy diet. I developed acute onset ME/CFS after glandular fever and inoculations, before joining an NBC film crew on a film set in North Africa and after a subsequent course of antibiotics. One day, I was fit and strong and that night, after a slight cold, I crashed into the abyss of ME/CFS. I was so acutely ill that I prayed to either die or be healed because I could not go on in what I now realise was a toxic state. Needless to say, the very next day I was diagnosed and I got in touch with a ME patient organisation. Building on the basic information they provided, I have recovered. I just want to encourage those who now might have little or no hope of improving, that one can turn unexpected corners, on the road back to health from ME/CFS.
I suffered acute cognitive symptoms, pain and malaise, I could hardly think, relate or speak, I could barely stand at times or bathe or care for myself. I was denied welfare benefits on the basis that no tests showed up an illness. I know what it is like to have no money for food, to be unable to walk to the shops, not to be able to eat anything on Christmas Day. I know what it is like to have to work when you cannot think or endure noise or light.
I vowed then, that if I ever recovered from ME, I would "^turn back" to others in this same situation. Thanks to praying about almost everything in ME including which doctors I went to see, I was rescued from what was a "nightmare", a totally hidden condition affecting the brain, immune system and almost every other system of the body.
I used every resource I had left to me. This included reading and research, experimenting with every aspect of food in ME, listening to wise counsel from all quarters, reading the Bible constantly, listening to music as therapy, pacing myself meticulously, eating for several years what can only be called a very boring diet and going to private medical specialists in allergy and the immune system. After seven years, the malaise completely left me and since then I have slowly recovered stamina.
All along I dreamt of setting up a care home for people with ME/CFS. But when a Swiss webmaster offered to set up this site for me, I realised that this was the "dream" that I had had all along.
I want to strongly encourage you if you have ME/CFS, have suffered social and personal rejection, bullying and abuse, if you can see no light at the end of the dark tunnel of ME, not to give up hope and to take heart. Now is the moment that things can change, even in ME. I have in mind several people with ME/CFS who are helplessly enduring in situations, too unspeakable to mention here. Yet even last night I heard of someone with ME for 30 years, who has "turned a corner". I would ask only that you study and follow the advice on this site.
The feeling of getting better from ME/CFS is worth all the effort. Every day now for me seems "special", surrounded by a sense of such relief from pain and confusion: what else could beat it? To know what disability is and yet not to be disabled is a huge privilege. One knows the two "worlds", the totally different states of illness and health. To enjoy things in life that one has long ago given up and never hoped to experience ever, transcends all the horror and pain of ME. I can even (unbelievably) say that to gain these insights and fulfilment, to know that there is rescue and hope in the deepest darkness of human experience from an unseen Hand, I am grateful for having had ME!
I could not have set up this site without the wonderful support of Deanne, a deaconess from Sydney Australia, without webmaster Paolo, a Swiss pastor, and many others whom have helped me. This site is our team effort to help you and your carers, who are also imprisoned by this dreadful condition. We hope and pray that our information can be of positive use to you. If you would like to send feedback on the site or email me about the advice, we would be delighted to receive it.
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