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What causes ME?
My life story
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Music and Immunity
Sloths and pacing
Five Keys for ME
Carbon Neutral ME/CFS
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Alison Bailey Castellina's Profile
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Part 1: Life Story
Part II: Story of conversion (two years before ME/CFS) - for those interested in faith
graduated from Oxford University and then qualified and worked as an English teacher. Not long afterwards, she became a tutor with an NBC/International Films (Rome) production team, making a follow-up mini TV series to Franco Zeffirelli’s “Jesus of Nazareth” in North Africa. Jabs for the trip badly affected her and in the Sahara, she was the only member of the film crew to develop heat exhaustion. A close blood relative also has problems in heat and later developed a neurological ilness, dystonia, which seems genetically related to ME. On returning to the UK, after being pressured into taking a six month course of low grade antibiotics and getting a severe virus six months before onset, she developed full blown ME (ten years after having had glandular fever). It was the type of ME with acute brain/cognitive and brain/toxic symptoms (which is quite serious brain damage) as well as weight loss, acute muscle pain, exhaustion, hot sweats with subnormal temperature, constant sore throat etc, etc. Deeply confused, she struggled on often from her bed, lying down, teaching children for 4 hours per day, while establishing national support groups for adults and children with M.E. Along with others, she summoned up enough energy to attend "static rallies", demonstrations at the UK Parliament. In 1987/8, she and Anglican church and social worker,
(a pseudonym) from
founded the ME Action's national Christian ME/CFS Group and Alison concurrently founded "Young ME", with the full support of ex-child film star in "Bugsie Malone",
first Director of ME Action (before he died). Young sufferers took over the lead and founded "The Tymes" Magazine (acronym for "The Young MEs") which, with teenagers leading it and with BBC "Children in Need" funding, has become the highly successful "Tymes Trust". Their website and "Vision" magazine are
. (See live ITV Central News footage
). She also "Christiantlink", the ME Action support group.
Denied disability benefits (in those days) and unable to pay for vitamins and treatment on limited unemployment benefit, Alison was forced to struggle on, tutoring as much as possible from home, lying down. She realised that ME was food-related when her ME muscle pains disappeared the day after she stopped eating wheat. She treated her ME with a very strict high raw diet (see
page), pacing and private food allergy treatment (all described on this site), under the supervision of Australian,
Dr Belinda Dawes
, in Wimpole Street, London.
and Alison together counselled, comforted and prayed for hundreds of fellow ME patients. Helena had ME worse than Alison in terms of mobility, while Alison had worse cognitive symptoms. They found that
two ME/CFS sufferers with complimentary weakesses are often stronger than one
. Alison gratefully acknowledges the major part that Helena's highly empathetic ministry and counselling skills played in her survival and recovery.
In 1991, Alison was well enough to start another part-time career, which was full-time by 1993 and this developed, by 2000, into work on international and human rights issues. By 2001, better but still pacing herself carefully, she ran a global human rights fund and trained hundreds of overseas staff in the Universal Declaration of Human Rights and in implementating them worldwide. She contributed to the Chief Medical Officer's Working Group on ME/CFS. In 2005, following full implementation of the Disability Discrimination Act and workplace disability mentoring, she gained workplace promotions. She is currently chair of a workplace hidden/invisible working group(see pages on Hidden Disability/Employment - for latest law on disability). Having headed up a team training staff on handling European issues, she now has been promoted to full-time key work on microgeneration (turning domestic energy supplies green) and feels that her sensitivity to cliamte change issues from her experienced in ME/CFS. The lost 15 years of career have been restored.
She continues to counsel people with ME and researches chronic illness. She has had many articles printed about people with ME/CFS in the UK. BBC2 TV filmed her work with teenagers with ME in her home and it was "TV's Pick of the Week". She presented a well-received "Comment" (Channel 4 in UK) about the dreadful plight of some children with ME/CFS in the UK. She is currently working on several books and writes religious poetry.
Alison does not believe that it is possible to fully shake off ME/CFS, so she still monitors her activities. Though full of
and clear-headedness, able to enjoy one glass of red wine a day, working full-time and even climbing the lower slopes of mountains (using walking poles), she still judges hill walking, late nights and muscle exertion very carefully. She
goes to bed past midnight,
swims several lengths in the pool,
runs more than a few metres,
takes drugs or handles strong or pungent chemicals, she does not eat wheat, does not cycle and
carries any heavy shopping or weights. She believes that an improved diet, combatting thrush with diet and garlic, pacing, vitamin and food allergy treatment should increase one's chances of losing
many or most
of the unpleasant symptoms (i.e.maximising the body natural defences to successfully control whatever is causing the condition). If adhered to strictly, this regime
get a ME/CFS patient back to feeling well, living a normal and even having a reasonably fulfilling career. Currently, there are high profile campaigns in the UK to improve eating habits, based on serious research that shows that
diet works to support immunity, longevity and overall health
. She knows that a high raw, organic diet does not work overnight in ME and may need to be related to professional treatment of a) candida/yeast infection and b) food intolerances and food allergies.
(only for those interested in faith)
Background to coming to Faith from Atheism
Alison aged sixteen
In terms of religious belief, which has played a major role in her recovery from ME, Alison finds that being at peace with God, rather than in a constant state of rebellion against God is healing in itself. Alison converted to Christianity in 1981 from a background in atheism, hardly different, in practice, from today's
Like most young post-60s students, she was idealistic, but at the same time wanted a measure of autonomy in her life, free from any religious restraint to discover "her true identity". She thought that the way to "discover oneself" was to explore and test one's own limits. However, it was soon clear that true self-discovery did not come through rebellion against God (who upholds all life). Instead, this "freedom" soon led to an interior "wasteland" which is called "
" - from God, the designer and source our true selves, and from society. This inner state of alienation, a chaotic, barren and disjointed reality, described in Hamlet's speech
"I have of late...lost all my mirth..."
and in some 20th century European art
(see the painting "The Scream")
is widely regarded as natural to contemporary man
But this experience, combined with dislike of 20th century European philosophies meant that she soon rejected "ugly"
taught then in schools (like that of Nietzsche - who went insane, Camus and Sartre). This, for her, reflected a degraded version of human nature, which is clearly simultanesously spiritual and carnal,
noble and corrupt
C S Lewis
, Alison searched instead for truth in the intuitive English writers and poets. She soon saw, like C S.Lewis, an Oxford English Professor, that through the regenerative powers, beauty and "intelligent design" clearly visible in Nature, ultimate reality is not something simple or "dead". Then, one day, just before her final exams, she read a critic on
, the highly sensitive and gifted young poet/doctor who sensed that he would die early. She was fascinated by his
Mansion of Many Apartments
which seemed the come close to her own experience. He also wrote that in 'Ode to a Nightingale' and '
Ode on a Grecian Urn
" Keats was imaginatively escaping from the pain of watching his family die of consumption to an plane of calm transcendence. Just one phrase set alarm bells ringing and changed her life! The critic thought that
Keats "would have become a Christian, like Wordsworth,
if he had lived longer
". This for her was a life-changing statement. She began wondering if one can progress through philosophies and ideologies, discarding atheism, existentialism, humanism, secularism, pantheism along one's journey to "truth" (which is boycotted by current
which aims to validate merely one's own individual perception of reality - however unenlightened that may be). This idea is also found in the Danish philosopher,
She realised, through American T S Eliot's later poems "
The Four Quartets
" that a 20th century highly intelligent, cultured, visionary mind can take faith seriously. Then, a friend told her that finding faith was like "
jumping out a a plane with no parachute and then finding one has one".
Hound of Heaven*
pursuing her through her studies, Alison internally
her Finals results
becoming religious ("
if I get a respectable degree, due to the search for you, God, I will..."),
an unholy and normally ill-advised kind of bargaining with "God", which she has never actually regretted in ME/CFS. Finally, after a broken romantic relationship and having bowed to the distant remote,
impersonal God of Creation
(pantheism), she prayed for the "true" God (Christian, Monotheist, Hindu or whatever) to "show" himself/herself to her in order to give her life to Him/Her. She reckoned that the true God would have the mercy, power and compassion to honour her request. She instinctively knew that the true God is personal, and deals with each of us, personally.
Completely comvinced by the answer to this prayer, within two weeks she accepted the Cross of Jesus as the only way to God and prayed for a church where Christianity was "real". Through meeting other "truth-seekers" at Coventry Cathedral choir (which she intentionally joined to meet believers), she was invited to a church near Warwick University. She trained, one-to-one, with the vicar (pastor) for a year, which gave her a deep foundation of doctrine in the Bible and an understanding of how to come to know
the personal and knowable God of salvation, Jesus Christ
("salv-" is "healing" and wholeness) and to receive
and redemption through the Cross. On a cold spring day in 1982, she was baptised, by full immersion in Coventry Baptist Church, full of both Baptist
Anglican believers, into the (r
Church of England (which retains the 39 Articles of Faith).
She claims that she was filled, while still under water, by something she was aware of what she now calls a flash of
"lightning-like-light, the power of a new life".
She contracted ME/CFS in 1984. She regards ME/CFS as a tool to further humble her "
", chasten and mature her, keep her from
, to soften her heart. It has developed, deeply, her faith (through tests of faith) and prayer life (through finding that prayers are practically answered). It gave her more knowledge of the holy and compassionate
Trinitarian God of Creation/Salvation.
She is greatly supported in creating this site by a pastor. Her hobbies are reading, writing, research, music and researching Shakespeare's life, works and writing poetry.
See site page
* The full text of Francis Thompson^s evocative poem
"The Hound of Heaven"
can be read on the
page on this site from which Alison quotes this:
"All which I took from thee I did but take, Not for thy harms, But just that thou might'st seek it in My Arms."
If you would like to discuss or ask questions about the matters in the last two paragraphs, please email
Alison recently used satellite navigation in a car, for the first time. She says that it is very like being "guided" through severe ME/CFS and trusting in God's "unseen hand" in ME/CFS -
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