On A Personal Note

2004 August, Lynne and DaughterMy 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.

brain-scanAfter 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.

She 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!

1234491_10151642380431188_668118189_nShe 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 is now doing a PhD and travelling the world!

(also read our Facebook Page) www.facebook.com/VegepaClub

Chancellor's handshakeThis 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.

 

 

photoShe was featured in New! Magazine’s double page spread in May 2005, as well as other publications, to talk to the media and to (politely) set the record straight about ME whenever necessary!

 

 

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.

imaging.ashxI 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.

Like all other mothers of sufferers of this illness, 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

florida-lily-pads-amy-warnke

 

 

 

 

 

 

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.

P.S.

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I have been 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 have 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 have now come 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 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!

 

5 thoughts on “On A Personal Note

  1. Hi Lynne,
    Many thanks for your reply. I was a vegetarian for many years before I was diagnosed with M E. I only took the vegepa as I heard they were so brilliant …and they are! I am still a vegetarian as I do not not eat any meat or fish but stopped calling myself a veggie after taking the vegepa as obviously they are not vegetarian. The ‘normal’ ones helped me no end and happily I am almost leading a full life now but just have to be listening all the time to my body when it says stop….. I am so lucky.
    I am just having a bad time with recently diagnosed arthritis and it is stopping me sleeping and I am getting easily fatigued so I decided to come back to vegepa iit seems to help with all sorts of things….I saw the vegetarian alternative and wondered if it was as effective?
    I understand that you will find it difficult to say whether or not this us the case as you supply both products ….just wondered if you had feedback from anyone else? I will happily stick with originals if I am not 100% sure.

  2. I am really so incredibly sorry you’ve been put through all this Lynne.
    There are some strange folk out there.
    And it is not uncommon for folk who are trying to do right by PWME to be hounded. The lady who told me about Vegepa (in 2003) and lent me her personal copy of Basant Puri’s book, was Helen Armstrong, who ran the “ME Foundation” charity shop in Edinburgh. She got hounded and the charity shop closed down over ridiculous “financial irregularities”. My personal thoughts on that were that a certain “sharp michael” didn’t like what she was doing (telling the truth about ME).
    He was in Edinburgh at that time.

    I’m not in any way religious myself, but every evening as I reach for my precious Vegepa to swallow it along with my dinner, I “send” you and your daughter my kindest thoughts, my best wishes and my thanks for the epa and the vast amount of help it really does give me.

    Twice, I have gone without it for a couple of months; both times my baseline energy levels plummetted; PEM was provoked by much smaller amounts of activity, my short-term memory got worse – *everything* went right downhill.
    Both times, taking it again for just a fortnight got me back up to being able to live a far more active life.

    The difference between getting out 3-4 times a week rather than just one;
    The difference between being able to watch and enjoy a drama on tv or only vaguely follow a rubbishy quiz show (turning the sound down frequently for audience noise);
    And everything else – such as being able to incorporate unloading the dishwasher or washing machine into my general weekly activities, rather than those being things I have to “trade” against doing something else.
    Much love and my very grateful thanks to you, Lynne.

  3. I am really sorry to hear that someone was small-minded enough to make a complaint about your wording (which, by the way, I do not find offensive in the slightest – and I have been struggling for recovery for ten years…)
    I hope it has not discouraged you at all. You are doing brilliant work to keep this supplement available to people who literally could not afford it otherwise, as well as raising money for research. I don’t really understand how someone that has benefitted from this could be so ungrateful… but anyway, from me – Thank you Lynne!

    • Thank you so much for your kind words and encouragement! I’m fine about it now, though it was an ordeal to say the least. I’m just sorry that the words Vegepa and ME cannot appear in the same place on the website!!

  4. My partner has been taking Vegepa for several years now and there’s no denying the benefits. While ‘recovery’ may not be achievable, Vegepa has proved itself in so many ways in the management of her condition. So it’s sad to see that someone took exception to the word and caused all that hassle with the ASA.

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