Yet another obstacle for ME!

images-1I 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 may, ironically, increase our donations to ME Research as, hopefully, our numbers will swell!


My Mantra


God grant me SERENITY

To accept what I cannot change,

STRENGTH to change what I can

and WISDOM to know the difference.

The Prayer for Serenity – Reinhold Neibuhr, 1892–1971, American Theologian


I’m not at all religious  but this little prayer helps me every single day…  I came across it years ago when a total stranger in a post office queue saw what must have been my care-worn, worried and saddened Carer’s face  She silently fished a scruffy bit of paper out of her wallet and lovingly handed it to me.  It made perfect  sense to me immediately and has always been my guiding light.  Ever since, I too carry copies in my wallet for when I can pass on that good deed!

Signs of Recovery


road-to-recovery-good-image-for-healthcare-or-financial-reYou are on the road to recovery from our wretched ME when you, or those close to you, notice that your symptoms have become less grave AND that your relapses are less frequent AND that they are of shorter duration.

It may still be a slow haul and no one knows how long it will take to get completely better, but it is a very favourable sign!



Be kind to yourself and don’t be afraid of making this your Mantra:


I always cringe when I set out the following advice as I am not medically qualified but I do have far too much experience in the illness not to know what I’m talking about.

I hope this helps and doesn’t sound like I’m preaching…

I do so hate to read that a Member is in such a bad way at the moment. It brings back all those sad and frustrated emotions which I know only too well.

Just as important as your supplement, in my opinion, is Pacing.

Lying in a dark room, at your worst, presents no problem to Pacing – you can’t do anything so you’re not tempted to!!

We (my daughter and I) started off, right at the beginning when we were learning what it was all about, and later, when we needed to go back to basics, by giving every little “activity” a score out of 20. The higher the score, the more tiring. (Talking on the phone = 8, showering = 7, eating downstairs at the table = 12, reading for 10 minutes = 10). It’s different for each person.

After a few weeks we realised that doing more than 20 per day lead to a relapse which could last for days or even weeks when she was so very bad.

We soon worked out that using eg. 15 a day kept my daughter on an even keel, no great highs or lows but stable and even able to lead some sort of minimalist life whilst not getting worse or suffering with too much pain, exhaustion, brain fog, etc.

After a couple of months, the scores had to be reduced for each activity as they weren’t as onerous as before, and we could introduce welcome new ones to throw into the pot.

All this was painstakingly slow, depressingly introspective and isolating but it did get us there in the end.

Think of Pacing like a bank account – never use more energy than you have in the bank or you’ll go into the red and suffer from it. Only spend a max of 80% of what you have in the bank so you have some left over for the next day, or better still, the day after next.

Remember that (one of the tell tale symptoms) with the illness, exertion on Day A. isn’t usually “paid for” until Day C.  (post-exertional malaise).

That way you’ll always have a reserve and be able to build up a bit more reserve (on your rest day/s) than the minimum required of 20% .

Also, only set yourself realistic goals so you’re neither disappointed at “failing” nor trying to burn the candle at both ends.

This isn’t a defeatist attitude, quite the opposite! Cheat and therefore win against ME – trick ME into thinking it’s winning but all the while you’re playing the long game and will win in the end.