Helena's Diary

Helena, church and social worker, severe ME/CFS patient, co-founder of our work on this site, writes regularly for us from her family home in Sydney, Australia. She is confined to a wheelchair with ME/CFS which she developed in the early 1980s. She did not do the dietary treatments on this site. Inspite of her suffering, her capacity for care and love of life remains unaffected. This is victory in ME/CFS. She shares some stories:

From Little Things, Big Things Grow - June 2007

"When the mustard seed is planted it grows and becomes the largest of all garden plants with such big branches that the birds of the air can perch in its shade." (Mark 4.31) Jesus's teaching about what God can achieve using few resources and utterly weak people.

external image Yellow%2520Mustard%2520Seed.JPG The Mustard Seed becomes The Mustard Seed Tree external image hugetree500.jpg

Recently, I had a revelation coming out of a persistent dream which I had 17 years ago. Let me start at the beginning: Sydney in the early 1980s. I had just recovered from two dreadful years of an extremely disabling illness, which was, at the time thought to be glandular fever. Later, I received the diagnosis of CFS/ME, but that was 9 years after onset. I had been so ill, so "wiped out". I had experienced such a lonely world of bizarre symptoms and intense suffering that on recovery (remission) I decided that if I ever had the opportunity, I would, as an experienced social worker, set up a support group for glandular fever sufferers. Of course, by 2007, medical research had shown that these bizarre symptoms can be caused by the genetic, neurological and immune systems dysfunction of ME/CFS but then we knew nothing.

In 1986, seven years after the onset of my illness, I felt well enough to return to the UK (I am half English). At the first opportunity, after arriving in London, I made my way to the leading bible-based church in London (All Souls, Langham Place). Sitting quietly in the pew, I dedicated my return to God. I knelt and prayed "Lord Jesus, use my time here to serve you in whatever way you choose". In those early weeks of my return, the deputy churchwarden, a friend of mine for years, invited me to dinner. On hearing of my diagnosis of ME/CFS, he told me about a believer who had the same illness and he put me in touch with her (and, perhaps, through her, her ME/CFS consultant in Wimpole Street, London).

Shortly afterwards I met up with Alison (the author of this site). On meeting her for the first time on the doorstep, there was an instant "rapport" between us, even before we uttered a single word! We both "fell about" laughing, before I had even crossed the threshold knowing instantly that we were "soul mates". Some months later, she told me that she had been earnestly praying for a "Jonathan" or a "David" (Jonathan and David in the Bible are "kindred souls", inseparable friends, battling against isolation, persecution and injustice). She said that I was the "perfect answer" to her prayers.

In due course, I started seeing her ME/CFS specialist, fellow Australian Dr Belinda Dawes in Wimpole Street who had very recently been converted to the Christian faith, at a UK Billy Graham "Mission England" ,as I had been, in the late 1950s, at a Billy Graham rally in Australia. An understanding of ME was in its very early stages, both medically and in the community at large. Like Alison and myself, many sufferers are isolated and misunderstood in their suffering, So, as a social worker, I offered to set up a support group for Belinda Dawes' ME/CFS patients. Alison and I ran it, with another believer, Tim, who joined us while he recovered, helped by candida, dietary and EPD treatment (as Alison too did). I felt this was a fulfilment of my ealier God-given desire to run a support group, in my early years of ME/CFS.

We met fortnightly in Alison's flat, then, at Belinda Dawes' practice in Chelsea Harbour. It really met a great need in those early years, as we all realised what bizarre symptoms were symptomatic of ME. We knew we were on the "discovery edge", uncovering a 21st pandemic. At the end of each group sesssion, I gave a short Bible message which was relevant to ME/CFS. We sent out a newsletter (we published about 30 in total) for those who could not attend, sharing the Christian gospel message of salvation (though we never taught that believers have a guarantee of total healing in this life from ME/CFS). Since the group met on a Sunday afternoon, followed by wheat-free tea, we encouraged the group to attend church either at All Souls, Langham Place or Holy Trinity Bromptom, Dr Belinda Dawes' London church. (Alison, though not a charismatic, was later invited to give a talk at Holy Trinity Bromptom, a "charismatic" church, on "Suffering in the Christian life", invited by more than forty ME/CFS sufferers at the church who felt marginalised by having ME/CFS, without being instantly healed AJB).

In 1988, "ME Action" was formed. (It was launched, memorably, in the stately hall where the Synod of the Church of England meets under a scriptural ceiling). It produced quarterly magazines, under the editorship of a talented actor in the Hollywood film, Bugsy Malone, fellow ME/CFS patient Martin Lev. Martin invited us to write our own section "Focus on Christianity" for which Alison wrote articulate and relevant Bible messages on suffering. This started "Christianlink", the UK Christian ME support network. We will always remember what Martin Lev brilliantly did for us, in the short time he was in charge of ME Action.

In 1988, Alison, Martin Lev and I, plus a few members of our support group met with Jimmy Hood MP about the ten minute ME rule bill that he had tabled in the UK Parliament. We highlighted the needs of people with ME/CFS to him. He was most sympathetic as he had many Scottish constituents with the same condition. By now, the ME Association and ME Action were starting up local UK groups and information about ME/CFS was more widespread. There were even articles in the national press. As a result, our group numbers diminished: our "support" goals were being met elsewhere. While Alison, Tim and I were praying about whether to continue the group, I had this recurrent dream throughout 1989-1991:

My dream was that this ME/CFS Group would continue to grow in numbers. I remember feeling quite excited, as a large room was packed with ME/CFS patients. Each time I had the dream, more and more people started attending the Group. It was simply growing and growing - until the meeting room was packed out.

On waking, I would pray: "Is this a sign, Lord, to keep going with this Group?" But over the next few months, it became evident that the actual Group was decreasing in size. So eventually, we stopped it - but the dream persisted for many months more. I just could not make sense of it!

In the meantime, Alison Bailey, as qualified teacher, had started an ME youth group in ME Action magazine, with Martin Lev's help and support, which became "Young ME" and later "The Tymes Trust". "Young ME" was not specifically Christian but started through our prayers for the dreadful plight of children with ME/CFS. Alison was now getting back to full-time work but continued to have compassion and a desire to help less fortunate ME sufferers. My condition on the otherhand seemed to get worse. (NB Helena was one of the unlucky "3 out of 4" ME/CFS people who did not improve with Enzyme Potentiated Desensitizazion treatment nor did she have the social resources, income and energy to do the high raw diet, juicing and other approaches outlined on this site. AJB).

I had to return to my home in Sydney in 1994, ending up in a wheelchair by 1998, physically and mentally exhausted. Alison continued to fight for people with ME/CFS. The rest of the story is hers.

The Fulfilment of my Dream

With the onset of the information age, Alison launched this ME/CFS website in 2005/6 to provide information, support and advice, drawing on our years of experience with many ME/CFS patients and on our joint Christian work. Last month, in May 2007, I had this sudden insight into those puzzling dreams from 17 years ago: they have been fulfilled.

This website has been accessed by 28,000+ unique readers (43% in America, 38% in the UK and 3% in Australia and New Zealand) in the last 12 months. Readers have included top UK and American doctors, Harvard Medical School and the Center for Disease Control in the United States. From small beginnings, based on prayer, through reaching out in our utter weakness to a one or two fellow patients, we are now reaching out to the world, with the help of God, and the technical help of a Swiss presbyterian pastor/webmaster. My persistent dream of "continued growth" has been achieved!

It reminds me of Ephesians 3 v 20-21:

"Now to him, who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Jesus Christ, thoughout all generations, for ever and ever!"

Thanks be to God.

Two Queens Enter Sydney Harbour - February 20th 2007

external image 650px-Qm2_sydney.jpg

QM2 (Queen Mary 2) arriving in Sydney Harbour on 20 Feb 2007

It was a hot, humid Sydney summer's day as I "leapt" into my wheelchair. A friend drove me through the deserted darkened streets en route to the nearby bushy headland, jutting out into Sydney Harbour. It was 6am and people and families with young children were hurriedly coming in our direction, through the bush. Hundreds of small craft, yachts, launches and ferries were heading out towards the entrance of Sydney Harbour. News had spread of sightings of a large "sea monster", with hundreds of luminous lights, heading our way. The media were onto it too, as six helicopters roared above.

A ripple of excitement spread through the crowds on the foreshore as suddenly, the brightly lit "Leviathan" appeared on the darkened horizon, a ghostly, yet fascinating spectacle. As it approached the headland, by now only 30 yards away, it seemed that it would devour us, as it bore down on us. The glaring lights coming from "the creature" were almost blinding.

By now, dawn was breaking behind it and we could see the enormity of "the great beast". QM2 (Queen Mary 2), the second largest ocean-going liner in the world was on her maiden voyage around the world. All the decks were lined with passengers beholding the magic of entering Sydney Harbour at sunrise. The Harbour was sparkling like crushed diamonds as the golden rays of the rising sun illuminated Harbour Bridge and the soaring "sails" of the Sydney Opera House. The smaller boats and the yachts were lined up like a carpet as the QM2 silently moved among them and docked at Garden Island, beside the Botanical Gardens and Opera House. The city's traffic remained at gridlock all day, as thousands flocked down to the Harbourside to view her and yet another arrival - the QE2 (Queen Elizabeth II) due to arrive at 6pm. Two "Queens" were meeting up in Sydney Harbour for the first time since World War Two. What a spectacular sight!

A brilliant display of fireworks illuminated the evening sky, heralding the departure of the QE2 at 11pm. Once again, the foreshore was packed with crowds, many of whom had spent the spent the whole day with picnics, watching the arrival and departure of "The Two Queens". What a day and what a night! What a superb memory - one that would last a lifetime.

Helena Winter, Sydney, Australia, 20 February 2007
For more photos and the BBC report of this "immune boosting" event, see here. You may be interested to know that it was Helena who coined the phrase "immune-boosting experiences in ME/CFS". See this page for more immune-boosting experience.