Category Archives: Blog

A story of hope…

 

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Leisa Zakeri, MSc, BA (hons), MBPsS ; Advanced Mickel Therapist; Supervisor and Trainer.

16/5/2016

“If you learn from your suffering, and really come to understand the lessons you were taught, you might be able to help someone else who’s now in the phase you may have just completed. Maybe that’s what it’s all about.”

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Mickel Therapy practitioner training

“I never get angry” I explained to Dr Mickel as I sat in front of him six years ago.  Little did I know the negative impact this unconscious habit of suppressing emotions was having on my physical body.  During the first session Dr Mickel handed me a piece of paper with a message on it – ‘My symptoms are here to tell me to stop running from emotions and start responding honestly to them’. The realisation of what I had been doing to myself for years all of a sudden hit me like a big slap in the face.  His theory fit in with my life story and my gut knew it.  In that moment I realised that my body was a reflection of the sum of my life experiences to date. Along with a sense of relief that he could help guide me, came a surge of secondary frustration, guilt and shame – ‘What on earth have I done to myself?’  However, Mickel Therapy is about taking responsibility without blame.  No one should be blamed if they succumb to illness, but I came to realise that the more I learnt about myself, the less prone I was to becoming passive.  I had not suppressed emotions for years on a conscious level – I was completely oblivious to the detrimental emotional and behaviour habits that had become the norm.  At a young age I was taught (on an unconscious level) that certain emotions should be suppressed, especially anger.  I became the ultimate people pleaser, the yes person, always striving to ‘keep the peace’ and make sure everyone else was ok.  What happened could be described as the paralysis of negative emotions, especially anger.  These behavioural patterns continued into my adult life and as a result I paved a path that did not allow me to express my authentic self and in turn my emotional pot continued to fill.  It got to the point where on some level I experienced what could be described as an emotional ‘shut down’, I was being guided through life solely by my ‘head’, paying no attention to my body’s wisdom and kept stuffing those pesky emotions in my overflowing pot.   It was only a matter of time before the pot was going to blow – for me M.E. was a time bomb waiting to happen!

The pot blew at the age of 26! My body eventually said NO in the form of chronic physical illness.  The physical sensations in my body, which were  a protective mechanism, merely trying to grab my attention to warn me that I wasn’t being true to myself became louder and LOUDER and LOUDER to point where I had no choice but to stop and listen.  I lost my health, my job, my independence and worst of all my sense of self.  I was eventually diagnosed with M.E. and atypical facial pain. The best part of a year was spent either in bed or lying helplessly on the couch. I experienced a long list of debilitating physical symptoms, the worst being a chronic fatigue that on some days made walking 5-10 minutes a battle that I lost.

Fast forward six years…..thanks to Mickel Therapy I have returned to full health and completely turned my life around.  I can now do all the basic things that I struggled with back then – walk, shower, cook.  I have also returned to full time work in the world of Psychology in a role that covers the North of Scotland.  At one point, I never thought I would be able to work again, let alone have a job which involves travelling.  On my journey of recovery through Mickel Therapy I have learnt that while experiencing M.E. was the loss of me, the recovery from M.E. was the re discovery of me. A better version of a me, one that embraces emotions as a guide and as a result allows me to embrace authenticity.  I no longer see negative emotions like anger as taboo but instead a call for action.  My emotional brain centres now lead the way and my ‘thinking brain’ has been kicked into second rank, as it should be.  I can now honestly say M.E. was not only the worst but the best thing that ever happened to me.  This may seem like a controversial statement but illness for me was a great teacher and it had the ability to profoundly shift my perspective on life and change the way I interact with my environment.  It forced me to look within and it gave me back myself.  For this I am eternally grateful.

I made a promise to myself when I was unwell that I would shout loud about any intervention that assisted me in regaining my health. I spent close to ten thousand pounds engaging in both conventional and unconventional treatments that had little or no effect.  Therefore, in a week dedicated to M.E. awareness I would like to shout about Mickel Therapy and give people hope.  Mickel Therapy not only helped me to recover but it continues to help me sustain my health and live a happy fulfilled life.  It has had such an impact that I feel it would be a profound disservice to the M.E. community not to share my experience and assist in the quest to inform people of the links between emotions, stress and physiology.

Leisa Zakeri, MSc, BA (hons), MBPsS Advanced Mickel Therapist, Supervisor and Trainer.

 

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‘Plus ca change plus ca reste la meme chose’

 

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By Dr David Mickel MBChB MRCGP

EMP – A&E Dr Gray’s Hospital, Elgin

 

16/5/2016

It seems a lifetime ago that I developed an interest in ME/CFS. I left my General Practice job and devoted my time to studying the condition and designing a treatment. It creates great sadness in me that 16 years later we still have to dedicate a week to raising awareness rather than fund-raising for people to receive treatment.

 

The reasons for a lack of any tangible progress are numerous. There are conflicting agendas, conflicting theories and a distinct lack of cohesion amongst those offering treatment.

 

As a medical doctor, I feel that there needs to be a paradigm shift in how ME is viewed. The age-old division of illness into physical or mental has evolved very little. There seems to be an attempt to remove the stigma of ‘psychosomatic’ illness by calling it ‘functional’. This is inadequate and also, in my opinion, inaccurate.

 

‘Psychosomia’ is an accurate term if it is understood from its linguistic origins. The ‘psyche’ is soul and somia is the body. This should translate psychosomatic into meaning problems within the soul affecting the function of the body, surely? Frustratingly it has become understood as mental problems manifesting as imagined physical disease!

 

A great deal of time and money has gone into studying the complexities of our organic Being but very few academics explore the intelligent life forces within us. Perhaps that is unkind. I think that many do but their work is not published nor supported in the mainstream.

 

The valuable insights of ancient philosophers and our medical forefathers need to be married with cutting-edge modern day science to raise awareness and understanding of conditions such as ME. I learned the hard way that this does not happen easily. Mickel Therapy will continue to fill the gap until ‘awareness’ is reached.

 

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The Great Mistake: renaming Chronic Fatigue to Systemic Exertion Intolerance

ME CFS Awareness

 

 

 

 

 

 

 

Recently there has been a move in the U.S to rename Chronic Fatigue Syndrome (CFS), also referred to as M.E to instead be called Systemic Exertion Intolerance.

As someone that suffered with the condition for over 6 years, neither term makes sense to me.

I always felt that ‘Fatigue’ was a poor way to describe the mind crushing exhaustion I felt. Tests have shown the lactic acid in the body of sufferers to be that of marathon runners. Also the term ‘Chronic Fatigue Syndrome’ misses out the multitude of other symptoms sufferers may experience including cognitive impairment and severe muscle pain. Plus I never really wanted to have a syndrome!

The Good

So to ‘Systemic Exertion Intolerance’….well, I welcome the fact that this illness is being talked about when so often it hasn’t been recognised or properly understood. I guess that’s progress.

The Bad

‘Systemic’ it certainly is as it can affect the entire body, but ‘Exertion Intolerance’ it isn’t. One of the things that was pivotal in my recovery from this horrendous condition was casting aside the ideas around pacing and graded exercise that are so unhelpful.

I always thought being in tune with my body meant resting when I was tired and then using the little energy I had left to do chores or other things.

The thing is, this is where the body can confuse us. Yes, it wants us to rest, but only when we get a regular type of tiredness.

The ‘Fatigue’ with this condition is not for the most part regular or healthy. So what I started to learn that instead, my body wanted me to do fun and fulfilling activities to address underlying messages it was sending around boredom and lack of fulfilment, this gave me energy rather than taking it away.

In fact, when I started following a comprehensive programme I was able to show my body that it had things to look forward to, I no longer got symptoms in the morning or after physical activity – something I’d always viewed as payback. That just wasn’t the case. My body was just saying ‘Hey, I really enjoyed that activity…what is coming next’ and if it couldn’t see anything fun or different, BAM…more symptoms.

Of course this can’t all be done in isolation. There will be other underlying messages the body is sending which need to be dealt with but you start to see why ‘Exertion Intolerance’ is just nonsense.

The Ugly Labels

So this M.E / CFS Awareness Day, let’s cast off the stigma of the illness but also take back some empowerment that we can change our fate and be well and not defined by some silly label.

Saul Levitt, Mickel Therapist

Saul Levitt is a senior Mickel Therapy practitioner, trainer and owner of Intuitive Health. Since recovering from CFS he has completed a 60 mile bike ride, travelled, had two children and holds down 2 jobs!

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Rethinking the role of emotions.

“The missing piece in the puzzle of achieving maximum health and wellbeing”

clare caldwell

 

 

 

By Dr Clare Caldwell

Head Practitioner

Mickel Therapy

14/5/2016

Mickel Therapy practitioner training

 

 

 

 

One view of emotions prevalent when I was growing up was that you should be able to put a lid on your emotions and be in control of them.

There were all sorts of sayings around which emphasised this:- don’t rock the boat, don’t make waves, I have a broad back, button it, too many saying to mention here.

 

All of these ‘words of wisdom’ taught us to be stoic and just put our heads down and get on with what ever life was throwing at us without showing how we felt or making a fuss. Or changing what was going on. Everyone had to cope with difficulties I was told. Don’t let people who are upsetting you know how you feel.

 

If we were not in control of our emotions it was viewed as a character defect.

 

This approach emotions was passed down through the generations going back to Victorian times and possibly earlier than that.

Emotions have been seen as irrational feelings and just in the mind. One dictionary definition of feelings is ‘ an idea or belief especially and irrational one’

 

But is this true?

 

We have laboured under these assumptions for a long time. What effect does it have on our health and wellbeing if any?

 

To answer this we need to look at recent research about the connection between the mind/emotions and the way the body works. Commonly known as the mind-body connection.

 

What are the purpose of emotions and is it a problem that many of us have been taught to bottle up how we feel when it comes to our emotions?

 

Candace Pert in her peer reviewed research has explained that emotions are neuropeptides.

There have physical substance and are electrical and chemical messengers within the brain and body. They transmit messages.

She is not the only scientist to realise emotions are much more important than we realised.

 

Research shows emotions can activate old survival circuits and generate the fight or flight response. When activated for too long this causes stress.

 

Most people will be aware of the damage long term stress does to the human body. Not just the emotional pain of it.

 

Web med lists the following:-

 

10 Health Problems Related to Stress

  • · Heart disease.
  • · Asthma. …
  • · Obesity. …
  • · Diabetes. …
  • · Headaches. …
  • · Depression and anxiety. …
  • · Gastrointestinal problems. …
  • · Alzheimer’s disease
  • · Accelerated ageing
  • · Premature death

 

To this list we need to add ME CFS IBS and Fibromyalgia. There are many more.

 

In what other ares of our lives would we ignore an important communication?

If someone tells us to move our car because it will get towed away as we have parked in the wrong place we would do it. We would not want to have to deal with the consequences.

 

The attitude to emotions as something irrational and to be controlled has got to change.

 

Emotions are not a weakness of character but a physical fact and a form of communication meant to guide us to ensure we are physically safe and as far as possible living a happy healthy life.

 

We need to become aware that until we learn to listen to our emotions and speak their language we cannot experience full health and wellbeing.

 

I developed ME as a result of not listening properly to the message behind my emotions.

 

Mickel Therapy gave me the tools to understand the message behind my emotions and the tools and the courage to take the actions I needed to take to reclaim my health and my life.

Goodbye 15 years of dreadful ill health and unhappiness.

Hello the rest of my happy healthy life with full energy and no symptoms! 11 years and counting!

 

Clare Caldwell

Former ME sufferer

ME awareness

 

 

 

 

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Does emotion influence our health more subtly than we realise?

 

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Dr Pamela Mills (BA Hons, DClinPsy)

Clinical Psychologist and Mickel Therapist

13/5/2016

Mickel Therapy practitioner training

 

 

 

 

On M.E awareness week, I feel so much for anyone out there, currently experiencing M.E, CFS, fibromyalgia, etc.  I know all too well how awful it can be, as I was once there myself.  Having CFS (the term I was diagnosed by) is by far, the most difficult thing I’ve ever gone through.  And yet, I feel so, so incredibly fortunate that firstly, I didn’t get any worse than I was and secondly, that I found a way back to health.

A process

When I look back now on the two plus years I was unwell, I can see I went through a process.  The first part of this process was lengthy medical investigation, and not knowing what was wrong with me.  Then there was a gradual awareness that I was being given a post-viral fatigue/CFS diagnosis, which I found extremely difficult, as I knew there was no known ‘cure’.  I tried any treatment I could think of in the hope of getting well.  Then there was the fact that I worked in healthcare and knew of what is called ‘the mind-body connection’ – the fact that mind and body are so interrelated you cannot really separate the two. I therefore was also going through the process of wondering – could there possibly be anything going on emotionally that could be contributing to my ill health?  I found this a terrifying thought.  I considered myself to be happy – life was generally good: I had a loving, supportive partner, fantastic family and friends, a job I loved, all my studying was behind me… So how could any of this be affecting my health, especially to the extent of experiencing such awful, debilitating symptoms?  It didn’t make sense, and so I discounted this idea again for a while.  I then came across a book of CFS recovery stories by Alexandra Barton.  It is through this book that I learned of Mickel Therapy.

What Mickel Therapy helped me to see

I embarked on Mickel Therapy two years after my initial ill-health and I was blown away by its effectiveness.  Mickel Therapy made me realise how subtle emotion can be – and how much I was either ‘missing’ the emotions I was experiencing or not acting upon them in a way that best met my needs.  I realised there was quite a lot about my personality that had led to this occurring.  I was very driven and hard working. Interpersonally, I had always been easy going, and would typically avoid conflict with others. If something bothered me, I’d usually let it go (or complain about it to someone else! – not the most constructive!) I give these as personal examples, but I know I’m not unique.  In our society we are not taught how important emotions are.  If you look at young infants, they freely express all emotions they feel spontaneously –which leads to them having their needs met.  But as cognitive development advances, we begin to learn to suppress our emotions – dampening them down, either consciously or unconsciously.  In our culture we also often think about what we should do in life, rather than tuning in to how we feel about things.  It is only through Mickel Therapy that I realised the extent to which any of this could be detrimental to health.

What Mickel Therapy is

Mickel Therapy is a talking therapy, developed by Scottish GP, Dr David Mickel, in the 1990s. The therapy teaches you how to tune in to subtler emotion and act upon it in a way which best meets your needs.  Remarkably, when you do this, over time, your energy increases and symptoms start to reduce, until they go completely.  It is, at first, a very new way of thinking and yet remarkable in its effectiveness.  It made a huge difference to me personally – I regained my health.  Professionally, I was so impressed, I trained in the therapy myself.  It still continues to amaze me, how effective it can be in turning symptoms around.

So, does emotion influence our health more subtly than we realise?

My experience of ill-health and Mickel Therapy has shown me that yes – emotion does influence our health much more subtly than we realise.  The idea that ‘stress’ can influence our health is quite well established (for example, through studies into heart disease, etc).  What has amazed me, however, is that everyday emotions and the degree to which we do/do not act on these effectively can play a role here too.  On regaining my own health, and witnessing it occurring for clients, I feel obligated to share this with others.  Our hope within Mickel Therapy is that the therapy can soon be formally evaluated in a clinical trial, in order for an evidence base to be determined – in addition to the countless reports attesting to its effectiveness with these conditions.

In the meantime, I write this for anyone out there who, like I was, is searching for a sign of something that may help.  For me, Mickel Therapy was just the thing.  I hope you find your answer also.

Dr Pamela Mills (BA Hons, DClinPsy)

Clinical Psychologist and Mickel Therapist

ME awareness

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The Pain of Watching a Friend Who has M.E.

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By Lady Gwynneth Bain

13/5/2016

Mickel Therapy practitioner training

 

 

 

 

When I first met my friend some twelve years ago he was full of energy, with great intellectual curiosity, and a finger in every pie. He had a wicked sense of fun, enlivened every party with his singing and guitar playing, and could never do enough to help a friend. He was the social glue which held together a disparate group of local people who came together mainly because of him. Some twelve years later, after suffering throughout most of that time from what is now recognised as ME, he is changed. He still has flashes of his old self on good days, but he no longer chivvies us all down to the pub on Friday nights, nor organises us to get out on the boat or go for a walk with the dogs. He cannot take alcohol any more, does not like crowds and is often totally enervated by the evening.

We all miss the person that he was. He became very self-absorbed and conversations with him increasingly revolved almost totally around his problems. As we watched his condition starting to overwhelm him, we felt confusion and sometimes even scepticism. It was very difficult for him to get a firm diagnosis of what was amiss, let alone appropriate treatment. Consequently, this lack of an official label led us sometimes to wonder – quite unfairly – whether it was all in his mind. There were a range of different identifiable physical problems, but the exhaustion which he experienced sometimes seemed to some of us amateur psychiatrists to proceed from psychological rather than physical causes. There was a temptation to want to tell him to pull himself together!

In the early days, before he found the therapy which now keeps his condition under control – a therapy he discovered through his own efforts rather than those of the medical establishment whose orthodoxies did not allow for ME – his decline was disconcerting to his friends. We did not understand what was happening and we did not really know how to help and support him. His physical pain was at times almost unbearable and his withdrawal into himself hard to comprehend.  It came to a point where, after adverse reactions to inappropriately prescribed medication, he could no longer be left on his own. Luckily for him, one very good and caring friend decided to take charge and looked after him until he was able to function by himself again. The wear and tear on that good friend was tremendous and her contribution to his current partial recovery cannot be underestimated.

The reluctance of the medical establishment to engage with ME sufferers and get to the bottom of what causes the condition is most concerning. Until the condition is fully recognised and appropriate therapies are developed, the scepticism which is exhibited by the professionals will continue to influence the attitudes of society, making it all the harder for friends who want to help to understand what it is they are dealing with. That is the lesson I have learned from watching the travails of my much changed friend.

ME awareness

 

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It is Hard to Escape Truth

 

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By Professor Roddy Cowie

Chartered Psychologist

Belfast

12/5/2016

Mickel Therapy practitioner training

 

 

 

“There are no true, simple stories” 

Suffering from an obscure disorder brings four kinds of torture. First there is the torture of having it. Then in many, many cases there is the torture of discovering that it is not curable – partly because medicine tends to be better at the obvious than at the obscure. Beyond that, there is the torture of not being believed. People tend to think it is ‘all in the mind’, and may even see your distress as something you are inflicting on them. Last, and not least, is the exhausting, endless effort to understand what on earth is going on.

All of those apply to the disorders that have been called ME, Chronic Fatigue Syndrome, post viral fatigue, Systemic Exertion Intolerance Disease, and other things. Making them less obscure matters, and that is what this blog is about.

One of the ways that people try to fight the obscurity actually makes the problem worse. Every so often, there is a surge of enthusiasm about a new theory or treatment: brain training, biofilm bacteria, the Marshall protocol, and so on. That is almost guaranteed to end in disillusionment: the chances of a dramatic breakthrough are very remote. Worse still, onlookers have an immediate reaction to that kind of enthusiasm: they label it as crank behaviour. That often has a poisonous result – onlookers suspect that the symptoms are no more believable than the explanations.

The alternative is hard work, dull, and full of disappointment, but it is what we have. It is trying to work out where we stand by digging through scientific journals, and particularly scientific journals with high impact (that means other scientific articles quote them). What I say here is where I think we stand on that basis. I encourage other people to take it as a starting point, and dig for themselves.

A sensible starting point is a 2006 report commissioned by the UK National Institute for Health and Clinical Excellence (NICE), summarised at https://www.york.ac.uk/media/crd/crdreport35_summ.pdf. It makes several useful points. First, it is clear medical recognition that there is a problem, and it affects substantial numbers – it estimates 3-4 people per 1,000. Second, it is not true that research has ignored the subject: even a decade ago, the report could list 70 substantial studies, taking a wide variety of approaches. Third, in most categories (immunological, pharmacological, dietary, alternative), hardly any of the treatments meets the standard medical test of effectiveness – other things being equal, people who receive it fare better than people who do not.

That leads to the areas where the test is met. They involve ‘walking and talking’ therapies – Graded Exercise (GET) and Cognitive Behaviour Therapy (CBT). The table in the 2006 report makes it very clear that those do something. To see what they do, we need to go back to the journals. The biggest CBT study, from the Netherlands, gives clear data. 14 months after the beginning of the study, 1/3 of people who received no treatment reported having recovered significantly. With those who had CBT, that rose to 1/2. That means CBT led to self-reported recovery in 1/6 of the patients. That is a real effect, but very far from helping everybody. Similar points about GET come later.

There was outcry when NICE recommended GET and CBT as therapies for ME/CFS. It was challenged in a judicial review, which was highly publicised. The review decided firmly in favour of NICE. However, what lies behind the outcry certainly matters. It involves two huge sources of obscurity: diversity and the mind-body problem.

Take the mind-body problem first. It needs to be put out of the way. When people object to ‘walking and talking’ therapies, one of the key reasons is because they suggest the problem is ‘in the mind’, not ‘real’. The simple answer is that healing involves mind and body working together. That is why walking and talking therapies are recommended for recovery from heart surgery, and nobody thinks the heart is ‘in the mind’ or ‘not real’. If mental levers are the only ones we have, then we should use them. The subtler answer is that a simple separation between mind and body is long out of date. I have said more about that on a video https://www.youtube.com/watch?v=SqCs-JaO7Wc. In particular, we know that there are loops where thoughts affect feelings; feelings affect body processes like circulation, digestion, hormones, and immune function; those feed back into feelings; which in turn feed back into thoughts … and so on. Several things suggest that ME could easily involve that kind of loop going awry. There is no sense in trying to label problems of that kind either ‘body’ or mind’. There is even less sense in thinking that they are not real. Crude theories about mind and body need to be put out of the way.

The problem of diversity is the opposite: it needs to be brought into clear view. A decade ago, the trend was to take a broad brush approach to defining the problem. Lists of symptoms were drawn up, and people who ticked enough boxes were considered to have ME/CFS. There has always been suspicion that that was part of the problem – there were really many partially overlapping problems, and what helped one might not help another. The figures for CBT fit that picture. Others argued that GET might help some groups, but was dangerous for those whose symptoms included ‘post exertional malaise’ – long-lasting, almost flu-like reaction to exercise (it is still not understood – see, for instance, http://www.ncbi.nlm.nih.gov/pubmed/20433584/ ).

It is dangerous to generalise, but recent research seems to emphasise separation more and more. If we want to find specific disorders, we need to look at specific subtypes. A review from 2015 catches what seems to be a growing consensus. It is at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4761639/. It proposes core criteria for ME (not ME/CFS), and lists biological correlates that may occur in core and specific groups. They are diverse – problems with ion channels, neural kindling, molecules and brain cells related to immune response, reactive (‘oxidising’) molecules, reduced cerebral blood flow, the way muscles signal to the brain that they are tired, and others in subgroups.

That is not at all the only research. For instance, it was suggested that CFS arose from changes to the HPA axis (hypothalamus-pituitary-adrenal). New work shows nothing specific to CFS there; but there are changes, probably due to multiple factors http://www.ncbi.nlm.nih.gov/pubmed/15036250/. However, there is striking informal evidence that therapies arising from the idea do good (see http://www.meassociation.org.uk/2012/02/me-the-toxic-tiredness-programme-link-to-watch-it-again-facility/). That is absolutely typical of the way things look. There are true stories, and simple stories; but there are no true, simple stories.

As an old University professor, I know painfully well how deeply people long to be given a simple story. I have also learned to respect people’s ability to understand, if it is explained properly, that sometimes there is no simple story. I have tried to give a little of that kind of explanation. I hope at least it helps with the last two tortures; and on balance, I think research that faces up to the complexity probably will piece together genuinely useful responses to the basic torture of having it.

ME awareness

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From ME to the World

francis

 

 

 

 

By Dr Francis Teeney

Chartered Psychologist

Member of Division of Clinical Psychology (BPS)

Mickel Therapy practitioner training

 

 

 

 

11/5/2017

It is with deep and profound regret that I have to declare that thus far the annual M.E. Awareness Week has been somewhat of a failure given that we have failed to get it on to the mainstream medical agenda.  I hasten to add that this is not to pour scorn or ridicule upon all those brave individuals and groups who strive very hard to make it an annual success.  Let’s face it, people who suffer from M.E. have precious little energy to invest in a week long campaign, given that many of them struggle even to get out of bed. They therefore depend on friends and family to try to raise awareness of their suffering for them and this is like trying to kiss someone through a messenger. So I applaud the people who try valiantly each year to raise awareness of M.E.

If we compare other Annual Awareness Weeks concerning Cancer, Autism and Parkinson’s etc we do encounter a level of success, witnessed by people collecting in the streets and shopping centres, running coffee mornings and wearing the appropriate badge or ribbon of one of the aforementioned groups.

Perhaps it is easier for them because cancer can be seen, its effects can be witnessed and most of us have walked behind coffins of friends and loved ones who have been taken by this awful disease. consequently, I do not begrudge them their success in raising awareness for their particular cause.

When it comes to dealing with M.E. we are engaging in battle with an unknown entity.  Every few months witnesses another report of a possible cause that delivers false hope only for that research to be undermined because the trial has been so small and the results cannot be replicated.  Conservative estimates of 250,000 sufferers in the UK and 1 million sufferers in the USA make M.E.  an inflamed boil on the buttocks of the world.  Global figures are hard to estimate as different criteria of diagnosis are employed in different countries.  But we are looking at many millions across the world, and precious little if any global funding is being made available and yet the numbers rise every year.  We witnessed appropriate government responses to the Ebola outbreak and the Zika virus outbreak.  Thankfully global governments swung into action to combat these two plagues on mankind.  It is with complete bewilderment that the numbers of people that are suffering globally from M.E. have provoked virtually no global government intervention at all.  I recently heard that with regards to M.E., the UK Health Minister Jeremy Hunt, was doing the work of two men – Laurel and Hardy.

I wonder what would happen if I got a gun and went to London Zoo and shot Chi Chi and Cha Cha, the giant pandas. No doubt the tabloids would demand we recall Parliament and bring back hanging but yet the annual increase in people with M.E. does not seem to stir any meaningful political intervention from mainstream media or high ranking politicians.  If you are unfortunate enough to be afflicted with M.E. in the UK or USA, sadly Billy Graham couldn’t save you.

I live in Northern Ireland where the only M.E. specialist retired 8 years ago and has never been replaced – one specialist to cover the whole country for two hours per week. All of the aforementioned issues only create a scenario where we are trying to solve a Rubic’s cube that is fighting back.

Over the years different government responses have made the job of those trying to raise awareness of those with M.E. much more difficult.  One of the more famous ones was that ‘it was all in our heads’.  But just to be on the safe side they introduced a ban on sufferers donating blood in case we might just pass it on. How do you pass on something that is all in your head? – we should never underestimate the power of stupid. To quote Socrates: “The problem is that they do not know that they do not know”.

Then we had the strategy of giving it a different name and it was referred to as ‘Chronic Fatigue Syndrome’, as if by calling it something else it means less, and infers stigma upon its previous name, M.E.  Roses by a different name smell the same!

So what are we then to do about raising the profile of M.E. Awareness Week?  I firmly believe that we need to stop the infighting. We have too many vested interest groups and not enough coming together in common cause. If we found a cure for M.E. tomorrow morning some notable individuals would be out of a job tomorrow night.  Secondly, we can follow Einstein’s advice and stop doing what we have always done and each time expecting a different result.  You can hack a path through the jungle but what good is it if you are heading in the wrong direction.  Rather we should make plenty of noise in an effort to get attention to shine a spotlight on our plight. In this we do need the help of friends, family and our elected politicians throughout the world. I am grateful to Jeffrey Donaldson MP and to Mike Nesbitt MLA who both tried to raise the plight of people with M.E. – we need more politicians to ask questions at the highest level.

The UK government has had a political drive in getting disabled people back to work – many would say harassing people back to work. M.E. has unfairly been labelled by those ignorant of its devastating impact as a slacker’s charter and therefore we suffer disproportionally for this with regards the government work initiative for the disabled. Probably the scariest words an M.E. sufferer hears is “I am from the government and I am here to help you!”

I deplore the lack of government funding into the research and treatment of M.E. Money wasted on inappropriate back to work schemes would be better utilised in finding a cure. Indeed if they spent the same amount of time, money and effort on research / treatment as they do in trying to reduce M.E. sufferers benefits we might just find a cure.

My thoughts recently have turned to ‘Plato’s Ideal Plane’.  Whereas we might be in a state of imperfection at present while we endure this bizarre affliction, on another level Plato would say that we are living a perfect life free from our imperfections and afflictions.  It is indeed possible to reach the perfect plane if we were willing to kick up such a rumpus during M.E. Awareness Week that governments across the world would be forced to react as they did in other very recent global outbreaks.

So while M.E. Awareness Week has been a failure thus far, there will certainly be a tipping point when the numbers affected will be so great that the World Health Organisation will force international co-operation and standardisation: the vested interest groups will be forced to row in the same direction and demand funding and research in order to find a cure and in doing so make M.E. Awareness Week totally unnecessary.

I want to personally thank all those who thus far have contributed to the Annual M.E. Awareness Week and I pray that you take my comments not as criticism but as inspiration, to dare to do the different thing.

ME awareness

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