My 17-year battle with the ‘invisible illness’, Cambridge Evening News, 25 February 2012

From the ‘Cambridge Evening News', 25 February 2012

After falling ill with ME as a teenager, ALEX TERRY has not only fought chronic fatigue – she’s had to face being called lazy, depressed and a hypochondriac. Now the 34-year-old from Harston is finally coming alive again after undergoing a new treatment which she swears has transformed her life. She tells Living her story

AT the age of 16, just two weeks after excitedly starting sixth form in Cambridge, I was struck down with a mystery illness. It started with the normal progression of flu: one week in bed followed by one week gradual recovery. Most people continue to recover over the next few weeks until they are back to feeling ‘normal’ again. After 17 years, now age 34, I have still not recovered to that extent.

I have ME, which stands for Myalgic Encephalopathy. I discovered ME meant my muscles couldn’t keep me upright for long, my memory didn’t work, I couldn’t concentrate, my body couldn’t heat itself, my joints and limbs felt leaden and sore, I was constantly exhausted and my brain kept blanking out.

The medical profession refused to help, so unlike most children struck down with a severely debilitating illness, I was considered a hypochondriac and undeserving of sympathy, support or care. In the early 90s, when I first became ill, ME was commonly known as ‘Yuppie Flu’ and as being ‘all in the head’.

Bar a few, most of my teachers were embarrassed by my change and either condemned me as lazy or tried to avoid me. My friends carried on with their merry teenage experimentations with barely a thought for me. I was as invisible as my illness.

Fortunately, my mum, Dorothy, never stopped fighting. She discovered what was wrong with me, but could find no treatment and no cure. She spent all her time helping me get up, day after day, month after month, and kept my muscles and brain from completely wasting. My ‘brain fog’ gradually became less oppressive and, eventually, my mum’s perseverance meant I gained enough qualifications to go to university.

I learned how to manage activities to fit my limited energy reserves and was able to gain a first class degree in ancient history and archaeology at the University of Newcastle upon Tyne, and then an MA with distinction in ancient history at The University of Nottingham. Success was tainted by the gradual realisation that every time I pushed my brain or body hard, my ME would eventually crash. Each crash took an increasing amount of time to crawl back from.

I came to terms with my illness six years ago, accepting I had about half the energy of a healthy person my age and could only work part-time. Working three days a week left me four rest days a week and I used most of my five weeks’ annual leave to give me booster rest days.

That routine left me with enough energy for my husband Paul to decide it was time to get married. I always wanted to wait until I had at least 80 per cent normal energy but, after eight years, Paul worried that day might never arrive. I planned the day with military precision to give me plenty of rest time. It was wonderful and I looked well on the surface, but I took months to recover from the resulting pain.

This highlights a major problem faced by ME sufferers: the public knows the reality of well documented illnesses and can appreciate the huge effort. But ME is not talked about or recognised. People see sufferers smiling and behaving normally and, unaware of the lonely, painful months spent conserving energy, feel justified in believing the myth that it is not ‘real’. You are made to feel shameful when you have ME.

I never stopped searching for treatments. I came across Vegepa, a concentrated omega-3 supplement developed by Cambridge company Igennus, which eased some symptoms. Apart from that I could only find therapies which were either basic common sense or worryingly perpetuated the ‘it’s all in the head’ theory of ME. One well publicised so-called treatment even proclaims that people with ME can’t get better because they are locked in a loop of fear of non-recovery.

GPs only ever offered me anti-depressants. I always ask if they have been proven to help with ME, otherwise why would I take mind-altering drugs when ME has already harmed my memory and ability to concentrate? The universal response is: “There is no evidence but that is our treatment.” If there had been any suggestion anti-depressants help ME specifically, I would have tried them.

Then by complete chance in 2009, while reading a newsletter in a Trumpington chemist, I discovered the treatment that has transformed my quality of life, the Perrin Technique. It suggests a very plausible, biomedical cause for ME. As far as I understand it the technique is based on the theory ME results when something like a virus causes a fault in the lymphatic system, which is regulated by the sympathetic system and should remove waste toxins produced by every tissue in the body.

I have always described the feeling of ME as the pain you get after a very long, hard walk. The lactic acid makes your muscles hurt and shake, and your body is at the point of collapse. Add to this the sensation of a severe hangover. Being poisoned by a long-term build up of toxins seems a very likely reason for why my muscles feel leaden and my brain doesn’t work properly.

The treatment can take more than two years and is initially intensive. I was treated at a clinic in Oakington once a week for the first 12 weeks, followed by every two weeks for 12 weeks and so on. The lymphatic build-up is drawn out of the muscles and into the defective drainage system where the pressure forces the waste to be discharged. Gradually treatments become more spaced out as the practitioner tries to get the system working on its own again. The gap between my treatments is now a minimum of three months.

No-one pretends this treatment has a medically proven track record. Developed in the 80s, it is relatively new and is treated with osteopathic methods rather than drugs, which means the medical profession has no motivation to back it or research it. The treatment is likely to make you swell up and feel a lot worse to start with. But logically, if so much toxic waste is being forced into motion that it causes large swellings, it makes sense the body would feel worse.

I also do simple breathing and stretching exercises at home, and every night I knead my torso upwards and my neck downwards, while my husband does the same for my back. Although it was initially very difficult as I was exhausted, sore and consequently fractious, we have kept this daily routine for 24 months so far.

Month eight was the turning point when I started to feel better. Now, after two years, I’m mostly swelling free and the improvements are becoming more constant. Most of the time my muscles and joints are pain free, my concentration is not bad, and I have so much more energy. I have enough to stay with friends for whole weekends and, for the first time in 10 years, have been able to go out in the evenings.

Another amazing upside to this treatment is that I now have a chance for a family. Previously, I knew I did not have the energy to look after a child. That is no longer the case and, after a year to enjoy my restored health, my husband Paul and I plan to start trying.

I get very angry that this treatment is not publicised. GPs and ME organisations do not need to recommend it but they should let patients know it exists. If I had known about it when I was first ill, my experience of life would be very different. As it was, much of my late teens and 20s was spent in a semi-vegetative state.

Research into ME needs to focus on biomedical factors. Until then I cannot see medical or public perceptions changing. During 2011 there have been slight positive advances, with a Parliamentary debate on ME occurring in February. There is also an e-petition on the Government’s petition website requesting that an independent committee oversee Government funding for biomedical research into CFS/ME. E-petition 491 has more than 1,511 signatures so far.

This is not a short or an easy treatment and it’s not a cure. However, after just the first year, I looked back and realised it had transformed my life. If you know of someone who has ME, or who has a family member who suffers from it, tell them about this treatment. They might decide not to try it, but at least they will have had the option.

More information on the Perrin Technique can be found at www.theperrinclinic.com, which lists practitioners throughout the country.

SECOND OPINION

Living asked Dr Charles Shepherd, honorary medical adviser for the ME Association, for the charity’s official line on the Perrin Technique.

This is what he told us: “In the absence of orthodox medicine having an effective form of treatment for ME/CFS people with this illness are often desperate to try anything that is claimed to help.

“As a result there are a large number of expensive and speculative forms of treatment available in the alternative, complementary and private medical sectors being aimed at people with ME/CFS.

“The ME Association does not recommend or endorse their use until results from good quality independent clinical trials have established that a treatment aimed at the underlying disease process has been shown to be both safe and effective, and is not just the result of someone having faith in the treatment or the practitioner carrying it out.

“In the case of this osteopathic treatment, I am not convinced that the scientific theory upon which it is based is correct.”