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Gordon when did you first begin to notice the tell tale signs of chemical sensitivity?

In a very obvious way it was the summer of 1995 when I had a massive reaction to a morphine based pain killer. Looking back I can see I was having MCS type problems long, long before that though. I just wasn’t able, at that time, to join the dots - to see the connections - or the bigger picture; that the underlying health problems I was experiencing were largely down to chemical exposures of one kind or another.

Along with MCS you also struggle with Myalgic Encephalomyelitis (ME). Can you explain what ME is and the impact it has on your daily life?

M.E. is formally classified by the World Health Organisation⁽²⁾ (WHO) as a neurological disorder in their International Classification of Diseases⁽³⁾ (ICD) (ICD 10. G.93.3). It is better known outside of the UK as Chronic Fatigue Syndrome (CFS). It is a serious, chronic and disabling organic (i.e. physical) disorder from which most never recover.

The impact of M.E. on everyday life spans a very wide spectrum. From the relatively mild where the sufferer can still manage to hold down a paid job, perhaps only part time, and lead a somewhat reduced version of their “normal life – albeit with some degree of difficulty, to the utterly devastating - where the sufferer is totally bed-bound for most or all of the time, in constant pain, and unable to eat, drink, or sit up unaided. Often unable to even speak more than a few barely audible words with great effort.

Since 1989 my own personal experience of M.E. has spanned the whole spectrum described above. Bedridden 24/7. Standing 6ft tall and weighing only 110lbs at one point I looked like a doomed refugee from a concentration camp. In constant head to toe pain I also had a “light sensitivity” so strong I needed the bedroom curtains permanently drawn throughout the daylight hours, and a “sound sensitivity” so strong that my wife turning a newspaper page in the same room would rip though me from head to toe like thunder. Life, if I can call it that in this context, from minute to minute, hour to hour, day to day – is truly a kind of living death. When M.E. is severe like that life becomes, quite literally, sheer “hell on earth”.

Fortunately for me, after coming to the painful and rather frightening realisation that not only were the medical profession totally unable to help me with my deteriorating M.E. (and MCS) but were more likely to actually kill me in their ignorance (and arrogance), I decided to take personal responsibility for my health and its subsequent improvement or deterioration into my own hands.

I came off all conventional allopathic medications, which alone, although still bedridden, brought about some real and desperately needed improvement. Then I discovered 35% Food Grade Hydrogen Peroxide, Colloidal Silver, Kombucha Tea, and the Clark “Zapper” – but more on those later. From that point on my health - M.E. wise - rapidly and steadily improved to the point where I became one of the “walking M.E. wounded”.

Still largely housebound today, unable to walk more than 70/80 yards, and still officially classified as disabled, I am at least once more able to squeeze a life worth living from the barren landscape of my “modern plague” illnesses, and still make some very worthwhile contributions to my fellow M.E./MCS sufferers and to society in general too via my web site work and the telephone help-lines that I endeavour to provide when able.

Yes. In the UK the main big players are the M.E. Association⁽⁴⁾ and Action for M.E.⁽⁵⁾ I used to hold membership of both of these but, like a many others, left in disgust due to the way the way these organisations were being run and the illness management strategies they began to advocate (Graded Exercise & Cognitive Behavioural Therapy). Having spoken to many M.E. sufferers over the past few years, the consensus of opinion seemed to be that these national M.E. charities had sold the expectations, needs and trust of their membership, down the treacherous river of renewed funding. And I have to say that this apparently “common view” echoed my own sentiments exactly.

I hold membership of only one M.E. Charity now and that is with The 25% M.E. Group⁽⁶⁾ for sufferers of severe M.E. If you suffer from severe M.E. I have not the slightest hesitation in recommending them to you (see appendix for web site address of this and my own personal M.E. resource web site Satori-5). There are also numerous good local M.E. support groups on the web and more are springing up all the time. If you need one your favourite search engine should put you right on the trail of it.

Ok. But I’ll warn you now that this just can’t be done properly in a mere paragraph or two. It needs what it needs…

In December 1997 I was granted (on health grounds) the tenancy of a brand new bungalow that had been customised for disabled access. For the 4 years previous I had been largely trapped in an upstairs bedroom to weak to negotiate the stairs. So, it was thought by all concerned at the time (including me) that the move to a bungalow would be a very good idea. I had never even heard of the term MCS back then, but in retrospect, although my M.E. was severe, my MCS was still relatively mild. Moving with wife and son into that newly built bungalow, however, was soon to change all that.

Within a very short space of time after we had moved in it became blatantly obvious to me that our new bungalow was quite literally killing me. Every 20/30 minutes I had to stand at the door or in the garden for sufficient fresh air to reverse the alarming and escalating MCS symptoms that would sweep through me.

Nighttimes were a real nightmare. Within an hour of going to bed I would be enduring what I can only describe as a very intense and riotous cacophony of raging symptoms; including heart speeding up, slowing down, skipping beats, stopping altogether for several seconds at a time; powerful sensations of oxygen starvation; racing brain, muscle jerks and jumps; facial ticks; uncontrollable physical urges to clench my toes; the feeling that you are circulating battery acid in your body and brain rather than blood; bizarre nightmares every time I would fall into a very short, stupor-like sleep due to sheer exhaustion; and many more very unpleasant symptoms that are simply indescribable. Put all that together with the devastating exhaustion of severe M.E. and you have a perfect recipe for the utterly unendurable.

My dilemma was now that I had nowhere else to go - and I couldn’t survive for very much longer where I was. Local Social Services wouldn’t even come out to my home to evaluate the situation and the local doctors were no help whatsoever either. Ditto for the Housing Association that rented me the bungalow. With no other options available to me I quickly bought a display model garden shed with the last of our savings, had it erected in our back garden, got an electrician to run an electric socket to it – and moved right in there with my bed, a bedside filing cabinet, and a small electric fire. Thinking that it would only be for a few weeks – months at the most – until the toxic fumes had aired away, made the situation more bearable. It was just as well I didn’t know it at the time but almost 6 years later I was still being forced - by an ever-worsening MCS illness - to sleep in that shed.

In the beginning it wasn’t too bad. I had a proper bed with full bedding and pillows and found that with the big MCS break in the shed every night that I was more able to withstand being in the toxic bungalow during the day. So, the whole situation, while bizarre and extremely inconvenient, was, I repeatedly told myself, very do-able.

Then a whole series of malicious chemical incidents began (but that is another long and rather incredible story) that resulted in the repeated chemical contamination of my bedding and clothing resulting in the kind of bed-time situation that can be seen in the two short public awareness video’s I put on my web sites (more on this below). By then my situation was well and truly into the realms of the “unbelievable”.

Imagine being so ill you can hardly stand up and walk, yet knowing that you still have to shuffle painfully out into freezing night-time temperatures of minus 18, and spend the whole night in an unheated 6ftx8ft garden shed because your home is poisoning you and you cant afford to burn the small electric fire you have in the shed from your inadequate welfare benefits. In such appalling conditions I would wake up repeatedly throughout the long night to find my face, beard and moustache, frozen solid to my pillowcase, which would be covered in sheet ice from the moisture content of my breath. Imagine having to do this night after night, and week after week with no end in sight to it – and do that while very weak and ill without the slightest bit of helpful medical support. Not only is it almost physically impossible too endure such a situation but the psychological strain of it too is almost just as bad. You wouldn’t believe how long an hour can be at times like that.

Now imagine losing your bedding bit by bit due to a long series of unexplained chemical contaminations, with each contamination making you so ill throughout the night in the garden shed that you repeatedly have to get up an go outside into the garden, regardless of the weather, to get enough fresh air to allow you to recover from the raging MCS symptoms, so that you can go back in to the shed again to lie down before you collapse from rapidly escalating ME symptoms.

Once, when I had been through this cycle of multi-level torture 3/5 times every night for 6 straight nights in a row I psychologically dropped through what I thought was rock bottom. All I can remember now was that I had already exploded out of sleep several times previously and had had to stagger outside into the garden for air to shiver my way to some kind of recovery before staggering on the point of collapse back into the toxic shed bed. This time around though it was very different.

I exploded out of sleep again with the MCS symptoms stronger than ever and the sound of thunder ringing in my ears. At first I though the thunder was in my head but it was in fact real thunder. I can’t even begin to put into words how weak and awful I felt right then – and how utterly hopeless and impossible my situation was. In addition to the life threatening intensity of the MCS symptoms I was also in the throes of a bad ME relapse – yet I knew that if I somehow could not drag myself outside I would soon die. And the knowledge that even if I could somehow manage that –and manage to remain outside long enough for the MCS symptoms to diminish – that it would all be waiting for me again when I came back in – was virtually unbearable.

Somehow I managed to drag myself outside. It was 3.30 in the morning and everything was cloaked in a thick clinging mist. I was struck by the fact that there wasn’t a single sound of any kind; total silence. I shuffled slowly, carefully, to our small raised patio area and quickly grasped onto the strong wooden fence that surrounded it just in time to prevent my collapse. The only sound to be heard was my heavy breathing from the exertion of making the short 6/7 yard journey. Suddenly everything lit up like it was broad daylight - followed immediately by deep rumbling thunder. And then the rain started falling on me through the thick clinging mist.

My head was slumped forward and the rain fell on the back of my bare neck. I watched it land on - and quickly soak - the back of my hands that were still holding weakly onto the patio rails - and right then it suddenly felt like the cold rain was the final straw. Something deep in the pit of my stomach seemed to give way. I remember I was very unsteady on my feet and that I had to struggle and “will” real hard to stay upright. There was another round of startlingly bright lightning and deep rumbling thunder and, getting pretty wet now, it crossed my MCS scrambled mind that I might also get struck by lightning as I stood there.

I let go the now soaking wet patio rail and stood up straight as best I could. Apart from the gentle pitter-patter of the rain it was unusually quiet. I was still badly ill with MCS symptoms and simply couldn’t go back in my shed yet – and yet I was just too weak with relapsed ME symptoms to continue standing. My hair, face and jacket were pretty wet by now too as the 3^rd and even more intense round of lighting and thunder seemed to charge the heavy mist all around me. Again the thought of being struck by lightning impressed itself with even greater urgency on me. It was right then that I realised that I really didn’t care if it did. And with that I started to cry.

As I quietly cried away to myself in the nighttime mist and rain, with no one to turn too and nowhere to go, I chastised myself for my self-pity, but quickly realised that this kind of self-pity was different. There was no self-indulgent quality to it at all; it was I realised, a totally authentic kind of self-pity that was, under the extraordinary cruel and long-standing circumstances, completely justified. More than that – it was absolutely necessary as a simple, genuine expression of basic humanity in the face of such extreme and hopeless suffering. I realised that the tears I was shedding into the rain where not now just for me – but were for all who suffer. Not just human beings - but for all sentient beings - in all places - and across all times. I suddenly felt somehow deeply connected to the suffering of the Universe and with that my silent crying turned into real but very quiet weeping.

To this day I still don’t know how I managed to get through that night - and God alone knows how many, many others like it in terms of sheer suffering. But somehow I did. Like when I was 21 year old and going through pre-paratrooper training in West Germany, I often didn’t know how I managed to get through that either (i.e.; ever tried vomiting repeatedly while you run for miles in full battle dress?) But again I did – and with honours too.

In many ways now I view that whole military episode in my life as mere training for surviving what was to come much later in the forms of severe ME and MCS. That brutal training brought out in me extraordinary powers of mental and physical endurance that were later to produce – unasked for – a written invitation to test for the UK’s top elite special forces - the SAS (which I refused). In the years to come I would need all of that toughness – and more, much more. I can tell you now straight - with hand on heart and in the full sight of God - that next to my journey with severe ME/MCS – all the hardships of pre-para selection training were a walk in the park.

I've seen your self-shot “Wooden Pillow” and “Toxic Bedding” videos. They offer a brief glimpse into some of the hardships imposed by your shed life. Would you care to share the links to these with our readers?

Yes, I’m very happy to do that. In addition to access via the Satori-5 ⁽⁷⁾ and MCS International ⁽¹⁾ web sites both videos can also be found on Google Video ⁽⁸⁾ - and YouTube Video ⁽⁹⁾- at the following links:

I would also like to ask your readers if they would please “rate” and “comment” on each video if they do find the time to watch them. This would be very much appreciated indeed.

What percentage of those with MCS do you think are forced live in such extreme conditions?

Sadly, this is currently an impossible question to answer. By the very nature of their illness these abandoned people usually live very isolated lives often suffering from EMF sensitivity as well; which, of course, compounds the isolation by making the use of telephones, televisions, and computers etc., very difficult and, in the more severe cases, virtually impossible. What I can say about this however is that I am learning about more and more of these severe MCS cases as time goes on - often by proxy - via email and the MCS telephone help lines I provide (for MCS International ⁽¹⁾ and The 25% M.E. Group⁶⁾).

I would, however, like to urge all sufferers of “mild” MCS to remember that the mild MCS of today can all to easily become the severe MCS of tomorrow. Please, never be complacent just because you are not severely affected at present. Please, ruthlessly avoid synthetic chemical exposures as much as you possibly can with regard to the clothes you wear, the personal care products you use (and those around you use), the home, work and recreational environments you inhabit, the foods you eat, the fluids you drink and the very air you breath. Also try to detox your body as best you can of the chemical load it is presently carrying– and regularly detox thereafter too - for life. That way you are very unlikely to wake up one night and find yourself sleeping in a garden shed with your face frozen solid to an icy pillow…

What sort of systemic changes do you feel need to take place so others could avoid a similar plight?

That is an excellent and crucial question and one that really needs the space of a whole interview to itself to even begin to do it justice. However, I will do my best here to abbreviate my thoughts on this and include a few good pointers to where the interested reader can pursue the matter in much greater depth at their leisure.

Although more and more enlightened people are waking up every day to the chemical holocaust that is engulfing our entire planet and every single living thing on it, sadly the majority - it would seem - are unfortunately still very much asleep to the ‘invisible’ chemical dangers that are now demonstrably everywhere about us. Others still are indeed aware of the issues – but are stuck in some form of denial regarding their potential and actual dangers - probably because it would mean standing their comfortable worldview on its head.

For those of us who have indeed awakened to the dangers of modern synthetic chemicals and who start to really look, unflinchingly, into this whole immeasurably important issue, it is very easy to quickly feel utterly overwhelmed by the Pandora’s box they have just opened, and the complexity - the sheer enormity - of the problems that come spewing rapidly forth from within it.

Defining the kind of changes that would need to take place in order to render corporate-made illnesses like MCS (and all other forms of Chemical Injury) a primitive phase of our evolution as a species is the relatively easy part. A very, very simplified form of that might look something like this:

Bringing about the first three would automatically generate the means for manifesting the last two.

However, once our “shopping list” for change (in whatever form we personally see it) has finally been compiled, the real “Big Question” then becomes: What kind of structure(s) would we need to have in place in order to convert the various parts of our favourite consensual “shopping list” into concrete “real world” results? That, of course, is the really tricky part!

To the best of my knowledge what I am about to advocate here in Pariah E-Zine as a solution to the whole MCS problem (and a great many others besides) has never been advocated before in the MCS community. The key ideas themselves are not new – but the suggested application of them to the problem of Multiple Chemical Sensitivity, and Chemical Injury in general, almost certainly is. In fact a major part of MCS International ‘s work will be to actively promote this “new perspective” in any and every way it can; like via this interview with you. I am just trying here to point us in a new direction that is bursting with real potential and transformative power.

Ok, coming back to the “simplified shopping list” analogy the essential elements necessary to make the whole “MCS Solution” endeavour a do-able one would, I firmly believe, look something like this in essence:

With those key elements in place I personally have no doubt that we would see not only the beginning of the end for our MCS Problem but for all of the most pressing problems of our deeply troubled and transitional times.

During those years of extreme isolation what gave you strength and kept you going?

I had, for quite some before, been on what I can only describe as an accelerated path of spiritual (not religious) development (both a blessing and a curse) and had acquired a considerable degree of inner strength as a result of that. However, with the arrival of ME/MCS into my life the shocking realisation that such an appalling gap in our social and medical knowledge existed fuelled an intense desire in me to try and do something constructive about it. This resulted in me giving myself a crash course in HTML coding and launching the Satori-5 ⁽⁷⁾ website.

At the time I didn’t expect to survive for very much longer and Satori-5 was my way of trying to say - before I went - “Look – look what is happening to us right under your very noses.” It was also to be my epitaph – my digital tombstone – my way of still calling for proper social, medical, and political recognition, for justice and compassion for sufferers – long after I was gone. That sustained me; helped me a lot to keep going.

Paradoxically, as these devastating, modern plague illnesses robbed me of my physical and mental strengths, they also considerably enhanced my inner, spiritual type ones. Such intense and prolonged suffering – especially in almost complete social and medical isolation – acts like a purifying furnace on our inner self’ burning away much that we would be much better off without. This is a process that the “petty and superficial” in us simply cannot survive so, in many ways, my illnesses themselves actually gave me much “real” strength.

35% Food Grade Hydrogen Peroxide was the very first thing I tried – and its effect was quite literally like a miracle for me. Greatly encouraged I built on this by adding Colloidal Silver, Kombucha Tea Fungus and Aloe Vera Juice to my new alternative health medicine cabinet. I also meditated a lot and got in some really deep, emotional clearing/releasing work on myself (powerful suppressed emotions cause no end of mischief).

Next up I discovered electro-medicine and invested in a Clark Zapper and a Colloidal Silver Generator (so I could make up my own fresh). Then followed a Magnetic Pulser (fought my dogs cancer with it too), a Harmonic Pulser (based on Lahovsky’s Multiple Wave Oscillator but using radio wave harmonics), and a Medicur Unit (pulsed low frequency electromagnetic fields). I was also granted the permanent loan of a TENS unit from Aberdeen hospital’s pain clinic.

I made numerous diet changes cutting out almost all of the junk-type foods (though some of these, I’m sad to say, crept back in as I improved some). Evolved my own very flexible isometric exercise routine. Bought an ozone based air purification machine, a water ozonator for decontaminating the chemicals from fruit and vegetables and for making oxygen rich water for drinking, a distiller for making my own pure water, and finally a Komate MCS safe FIR Sauna to try sweating the toxins out faster than my toxic home was (is) putting them in .

In addition to all of the above I also use Himalayan Rock Salt Crystals in place of toxic supermarket salt and to make sole water ( pron: soh-lay - Google it) – which provides just about every mineral and trace element you could possible want or need in a very pure, bio available and cost negligible form.

I will be doing a downloadable article on this at MCS International in the autumn but very briefly it is all about the exercise of mind, body and spirit in self, culture and nature. As such it is a deeply holistic and balanced approach to – as Douglas Adams so wonderfully put it – “life the universe and everything”. There is a boxed course available now on this unique approach called “Integral Life Practice” ⁽¹⁴⁾- or ILP for short.If you are interested in healthy “vertical transformative growth” then nothing, in my opinion, even comes close. If any of your readers are interested in this then they can find out more by visiting the web site for it listed below.

The proliferation of toxic chemicals in every aspect of our lives is a trans-national problem that will require a trans-national solution. There was simply nothing out there that had anything to offer beyond education and/or political activism. These things are fine – but in and of themselves they will never, in my opinion, be enough. This is why I founded MCS International. This is why I will be advocating an “Integral” approach at MCS International. All the way through from the level of the individual sufferer to a workable international solution for the entire MCS and Chemical Injury problem.

Yes. Right from the very beginning there were very considerable obstacles in the way of getting MCS International off the ground. Chief among these were (and are) my own poor state of health and the simple expense of kitting up with all the computer equipment and software you need - with the associated running costs of these - and the ongoing postal, domain and web site hosting costs; not at all easy when your only source of income is state welfare benefits. At some point I hope to add a “Donate” facility to our web site.

A willingness to make at least a 3-year commitment. A sincere desire to work, when able, to raise public, medical and political awareness of the physical nature of the MCS illness and all other forms of Chemical Injury. And an ability to work within a team structure. Additionally, all MCS International representatives are required to submit a “mini-bio” for public viewing on our “Meet the Team” pages. Anything else beyond that is considered a bonus. Our motto at MCS International is; “Do what you can – when you can”. That will always be good enough.

In addition to Campaign Representatives we are also very much looking for Registered Supporters (no commitment), Professional Service Providers (medical professionals, web site developers, writers, graphic designers etc..) and Allied Groups and Organisations via our MICAGO project. FAQ’s available on site.

Oh yes! The whole web site is presently undergoing a substantial upgrade behind the scenes. It will probably not go “live” until mid to late summer but when it does it will be a much more professional affair with more than a few surprises up its sleeve! A taster of the “new look” is available by clicking on the large planet Earth on our home page. With our new web site in place MCS International will finally be able to really start doing the work is was created to do; and a big part of that will be the ramping up of our MICAGO⁽¹⁷⁾ project (see declaration).

This space is available to anyone in the MCS Community who would like to send us a link to be posted here. Links will be posted alphabetically. The link can be to your personal website, blog, favorite support group, non-profit organization, etc.

Chemical Injury is created as a forum for chemically injured people and their supporters, caregivers, physicians to discuss the impacts of chemical injury. At times this is a high volume list, with ongoing open forum chat among members. If you are looking for a low volume, moderated list, the Chemical Injury list may not be appropriate for your needs.

EI/MCS SUPPORT GROUP OF LOUISVILLE, KY Homepage of Melva Smith The EI/MCS Support Group of Louisville first formed in the 1990's, and then met at the office of Dr. Jack Teeple. Members keep in contact by phone and try to reach out to those who are suffering with the disability, offering educational information on where to buy needed products, books, etc.

Florida MCS Support Group This group is intended to provide online support to members of all ages of the Multiple Chemical Sensitivity community who reside in Florida, whether part-time as "snowbirds" or full-time. As Floridians, we have some special circumstances to deal with like extra pesticide exposures, hurricanes, floods, etc. which may strike us with times of strife, anxiety, temporary or permanent homelessness or intolerance to our homes, workplaces or other environments and justify a need for immediate support, guidance or change.

MCS-International.Org was founded in August 2005 by long-term severe MCS sufferer Gordon D McHendy in response to a great need for an international organisation dedicated both to the needs of MCS sufferers and to raising public awareness of the dangers of modern synthetic chemicals and their often devastating effect, especially synergistically, on human health and the environment.