My daughter had an extremely happy childhood and was very popular at secondary school where she was due to be made Head Girl. She jogged every night, was in the netball team, had a weekend job, excelled in every subject and was famous for her quick wit and humour.
Then overnight, on 10th December 1997, at 16, she was struck down with gastroenteritis which then left her, for many horrific months, unable to even sit up in bed. After many bitter battles with our then GP and weeks of my researching in the wee hours, we finally got her recommended to the Late Prof. Findlay who diagnosed her condition as ME (from which, after 12 long years, she fully recovered).
The following year, still unable to return to school, she nevertheless insisted on persevering at home with her GCSEs, and took all 11 exams, from her bed, with an adjudicator and amanuensis in the room. Her brilliant results were a testimony to her determination to succeed despite her illness (and despite my remonstrations about the effect of the stress of it all)!
Inevitably the enormity of this effort caused her to suffer a huge relapse, (she was sadly never able to resume formal education), so over the next several years she painfully managed to self-teach in sporadic 15 minute study periods and eventually managed to sit her AS and A Levels (propped up in bed and again under the watchful eyes of adjudicator and amanuensis! and achieved very high grades again.
From 1997 until 2005 (when we started her new Vegepa “regime”) the two of us lived in a very dark, unending tunnel of blackness with her illness where only once every few weeks she was able to find the energy to venture outside the house for a much longed-for “outing”, e.g. to the park or for a car ride, for just an hour or so, only to have to return to her bed and a darkened room for the next few painful weeks. Any studying was done in 10 – 15 minute “windows” of energy, every few days. Husband (her step-father) fled as he couldn’t bear to live in such an atmosphere.
After seeing, quite by chance, about this supplement in a television interview which Prof. Besant Puri (who formulated this supplement) gave in May, 2005, I rang up on the spur of the moment (and in desperation!) and offered the then PR lady at Igennus, to carry out a free 6 month trial of the supplement in return for publishing my findings to groups and internet forums who share an interest in this illness.
My daughter started to take Vegepa and after only a few months we both noticed a considerable difference in her ability to read and concentrate. She took 8 capsules religiously every day and amazingly, in October 2006, at the age of 25, she felt able to enrol as a part-time student at our local university to read for a BA in South American Studies.
Prior to this, she would not have been able to read for more than 10/15 minutes at a time as “brain fog” set in and she was left in a state of considerable pain, weakness and dizziness.
Attending Uni twice a week for 2 hours was all that she could manage, and these gruelling outings had to be meticulously planned and executed. To keep her energy as intact as possible, I drove the 50 minute journey, waited for her to come out or sometimes went into the lectures too (!) and then we drove home silently. All the rest of her week was spent housebound or bedbound, with pain and weakness, but she adored being “out in the world” and “normal” after so many years of the captivity and isolation which this illness brings with it, even if it was only for 4 hours each week. It took her 5 years to complete that long, painful, frustratingly slow journey towards her degree but she gained a First!
She recovered a year or two after that, very dramatically as it happened (which isn’t necessarily the usual pattern), moved away into a flat, did her Masters the following year and then her PhD and is now a university lecturer and loves travelling the world!
(also read our Facebook Page) www.facebook.com/VegepaClub
This picture shows her receiving her Middlesex University Chancellor’s Award for Academic Achievement – a wonderful accomplishment given the super-human effort she went through to get to university at all.
I was her sole, full time Carer and Founder of The Vegepa for ME Scheme (later known as The Private Vegepa Club and now as simply Vegepa Club) which I started in the spring of 2006 so that sufferers could enjoy the benefits of the supplement without having to pay the manufacturer’s recommended price, a price far too high for those living on benefits, whilst also donating to biomedical research into the illness.
I helped set up a pilot Survey with Carers in Herts, the recommendations of which are now national practice. I identified specific ways in which Carers’ needs should be met by GP surgeries, e.g. priority appointments, fast track visits, patient confidentiality waivers, annual health checks and flu jabs, etc. I am still involved with the illness, despite my daughter’s full recovery.
I chose to be by my daughter’s side throughout the illness, aiming to find something good and enjoyable in every day despite the prison that is this illness.
Though not religious in the slightest, my mantra is
The Prayer for Serenity
God grant me the Serenity to accept the things I cannot change,
The Strength to change the things I can
And the Wisdom to know the difference.
In July 2013 I was investigated by the Advertising Standards Authority (ASA) and The Committee of Advertising Practice (CAP) following a Complaint lodged by one of our Members.
The Member, (now unsubscribed), was upset by my phrase “best wishes for your journey towards recovery” as she felt that I was assuming that she was in recovery but, in fact, felt she was not “recovering or anywhere near it.” This led her to lodge the Complaint which brought me to the attention of the ASA and CAP.
It seems I had been infringing the UK Code of Non-Broadcast Advertising, Sales Promotions and Direct Marketing, notably the Rule which states that “Mentioning any medical condition in relation to a product, is likely to imply that the product can treat that condition”.
All Food Supplement claims re health and nutrition are strictly regulated by very specific EU Regulations and the field is a quagmire!
The EU Regulations, at present, regarding Fish Oils is particularly negative: “because on the basis of the scientific evidence assessed, claimed effect for this food supplement has not been substantiated.”
Despite vehemently fighting our corner, I’ve had to comply by removing all references to ME from my website other than mentioning that the purchasing of Vegepa, via The Private Vegepa Club, aka The Vegepa for ME Scheme, contributes towards crucial fund raising for Biomedical Research into ME.
The ASA and CAP finally came to an Informal Resolution and I have amended copy on my website accordingly.
Because of this, you may find that references to the supplement and the medical condition are missing in places where you might, logically, expect to find them!
Because of this, I managed to secure permission to sell Vegepa to anyone at all and I am no longer restricted to any one particular condition, which has, ironically, increased our donations to ME research as our numbers have swelled!