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

February 28, 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.”

8 thoughts on “My 17-year battle with the ‘invisible illness’, Cambridge Evening News, 25 February 2012”

  1. Does Alex actually have a formal diagnosis of ME? She doesn’t seem to know what it means. ME means Myalgic Encephalomyelitis not encephalopathy.

    The Perrin technique can help with lymph drainage but it is not a cure. Osteopathy, chiropractic therapy, manual lymph drainage and cranial sacral therapy can help symptom management along with other complementary therapies. Different things will be helpful to different people depending on their symptom pattern. However none of them will provide a cure. Each individual needs to experiment to find what is helpful to them without getting drawn in to long and expensive ‘therapies’ that ultimately do not help except to lighten the purse.

    ME patients do not help the situation by becoming evangelistic. If they find something that helps symptom management please let others know but taking the ‘I did this and now I’m cured and its so easy and simple and everyone should do it’ is not helpful. If it were that simple patients would have taken it up and we would all know about it.

    It is clear that simple and miracle cures do not happen but the snake oil salesmen continue to trade on that desire within us.

  2. I would appreciate it if comments regarding my article are only made after my article has been properly read. I say this after reading a comment by starflame which doesn’t appear to have any relevance to my actual article.

    As the first line of my last paragraph clearly states: ‘This is not a short or an easy treatment and it’s not a cure.’

    My article clearly shows I am no ‘evangelist’. For once, the Perrin Technique suggests a real biomedical cause for ME. I argue this has been supported by my two-year’s experience of the treatment. I am not the only one to have experienced the benefits. The ME Association’s own 2010 Management Survey listed the Perrin Technique as giving a high satisfaction, as opposed to other much better publicised and well-known treatments. Therefore, surely, it warrants further research and good quality independent clinical trials.

    My sole motivation is to raise public awareness of ME and to help inform fellow sufferers, which I would like to think is also the motivation for all others who publicly discuss ME.

    starflame might also like to read the ‘About ME’ section on the ME Association website, especially as our comments are being made on their website. I quote from that section: ‘ME is the common name for Myalgic Encephalopathy, sometimes also known as Myalgic Encephalomyelitis.’

    I don’t normally respond to comments but in this case felt I had to make an exception.

    1. I would be interested in an update from Alex Terry. I am considering the Perrin Technique to help with symptoms, I certainly don’t expect it to be a miracle cure, but I am interested in whether it continued to help in the longer term.

      1. Hi Helena. I have no idea if you will be checking this as you wrote the above comment a year ago but I’ve only just seen it and thought it was still worth replying!
        An update from me is that I’ve continued to be well, to the extent that after a year of consistent good health I did start trying for a baby and now have a baby girl who is 9 months old and am loving motherhood and enjoying a very full life.
        My husband reckons my energy levels are stable at about 90% (I think more like 95% but I’m a bit more optimistic than him!). I would definitely struggle if I had to work and look after a baby but I am now a full time mum and so far have had no problems coping with that.
        I must state though that I have never stopped doing the daily stretching exercises and home massage (about 5 mins in morning and in evening). I also go every 3 months for a half hour top up treatment – after being ill for so long I’m too scared of relapsing again to not do this whether I need it or not. But so far, no sign at all of relapse and I’ve lived quite a busy life.
        I’ll try and remember to check this post again if you have any other questions! I hope you are doing well.
        All the best, Alex x

        1. I am very pleased you have continued to improve. I did the Perrin Technique in the past and saw decent improvement during that time. Unfortunately I had an absolutely colossal crash from chronic over-exertion and became so sick I was unable to continue with it – I couldn’t even do the home massages and torso rotations.

          Two years on from that crash, low dose naltrexone has given me enough energy to restart the home massages and rotations. I am actually pleased to hear that it took you 8 months to see improvement, because after two I have noticed no change other than occasional nausea and headaches, which I know are a good sign in the early stages. but I still fret over whether or not I will see improvement.

          Thank you for writing your article. I wish you and your family all the best.
          Alex (another Alex)

  3. Hello Alex, I am really glad that you have found a therapy that is worthwhile for you and that you have gained benefit.

    Your attitude is evangelistic. You say you get angry that this therapy is not publicised. Do you get angry that other therapies are not publicised? The whole slant of what you are saying is not balanced and is wholly concentrating on one therapy and you are urging that other ME patients should at least consider it and better try it. That is evangelistic.

    I have been ill with ME for over 38 years. I have suffered the abuse of the medical profession and tried many therapies including the Perrin technique so even though you appear to doubt it I do have a basis for my critique.

    Encephalopathy is a controversial and disputed term and if you chose to adopt it that is your choice.

    You are free to express your thoughts and experiences in the press and I am sure that you are aware that if you do there will be feedback – some not always in agreement with you.

    I wish you well for the future and I hope your situation continues to improve.

  4. Why do some people on me/cfs sites feel the need to be so rude, patronising and disrespectful to other sufferers. Alex clearly suffered and has found a treatment that helps her which should be celebrated not belittled. I also think the response by the ME association was negative and uncalled for. Instead of ripping people apart because they are helping themselves get well, shouldn’t we praise them for their achievement.

  5. Isabella

    We wouldn’t even dream of making disparaging remarks about anyone with this horrid illness. Dr Shepherd would have been asked for his opinion of the Perrin Technique. He gave it and the reasons why the MEA can’t endorse this as a recovery programme.

    At no stage would the reporter of the ‘Cambridge Evening News” have asked for his opinion of Alex’s recovery. If he had been asked this question, the reporter would have recorded the fact that Charles Shepherd said he was delighted to hear of it. We have never been “rude, patronising or disrespectful” towards any sufferer. It’s not not our style, and never has been.

    Tony Britton
    PR and Communications Executive, The ME Association, 15 April 2016, 7.15pm

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