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Myalgic Encephalomyelitis

From Personal Experience

"In The Beginning"

This web-page was last updated: 28.01.05
Copyright © 2000-2005 Gordon D McHendry: All rights reserved
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who prescribe medicines
of which they know little,
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of which they know less,
in human beings
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ME: From Personal Experience

Introduction: In The Beginning

Satori-5 webmaster Gordon D McHendry on a rare good day in 2000...

Hello

Thank you for visiting this "ME: In The Beginning" webpage.
         This "In The Beginning" webpage marks the start of my attempt to record online something of the main events of my own personal ME/CFS journey which, at the time of writing, will have spanned a decade and a half come this summer. It is my sincere intention to cover as many aspects of this largely invisible and life-destroying illness as I possibly can in a series of webpage essays just like this one you are about to view here.

         In the short essay that follows I explore the first tentative manifestations of my slow-onset ME/CFS, how they affected me, and how I initially tried to deal with them. Finally, in "The Last Word" I explore what I have learned from my experience in the hope that at least something of what I have found will be of some use to other sufferers [or carers] who are perhaps still struggling to understand what is happening to them, or who are simply interested in reading of how someone else deals with the kind of problems that they themselves are having to contend with.

         It is also hoped that the material presented here at Satori-5 will help to raise a largely slumbering public awareness of the often grim realities of living with ME/CFS [and MCS too] in the UK today. Additionally, it is also hoped that it will help at least some of the misguided follower of the "Wessely School" wake up to the enormous medical and social damage they are doing and the fact that the corrupt and increasingly discredited ship they are all collectively sailing in, knowingly or not, is now slowly sinking; the evidence for which is abundantly present here at Satori-5 in the Articles, Previews, and Downloads sections of the site - and on numerous other excellent websites hosted in countries all over the world.

         Sadly, the UK is still, with a few notable and courageous exceptions, little more than a primitive backwater as far as the Myalgic Encephalomyelitis (ME), Multiple Chemical Sensitivity (MCS), and Hazardous Radiations Sickness (HRS) illnesses are concerned.

Namaste
Yours Sincerely
Gordon D McHendry

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Myalgic Encephalomyelitis: From Personal Experience

In The Beginning: Part 1 of 4

        It was the summer of 1989 when I finally first began to sit up and take some serious notice. I was only 36 years old and yet I was feeling more and more like I was 76! Something was slowly but surely draining all the life and vitality out of me. "What the hell was going on?" I wondered.

        Having trained very hard for over 6 months, way back in 1974, with Glasgow's 15th Para, to pass the notoriously difficult Pre Para Selection Tests in West Germany, I had thought, and not without some heavy-duty justification, that I had known pretty much all there was to know about fatigue and exhaustion. And not just physical fatigue and exhaustion either but their mental and emotional counterparts too. But this new kind of fatigue, this mysterious and very debilitating "Something" with its very rapid, poisonous, and strangely persistent kind of exhaustion, was completely beyond my experience. And that was a worry. Throughout the remainder of 1989 I found myself forced to ask the same increasingly ominous question time and time again: "What the hell is going on...?".

        At that time I had never even heard of the terms Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS). It was to take several increasingly difficult years of slow, but constant, deterioration in my overall health, and repeated mis diagnoses by all my (then) local GP's, before I was to finally come to the realization that other people were suffering in the same way I was, (including the repeated mis diagnoses), and that my condition, this strange and profoundly debilitating "Something", actually had a name - Myalgic Encephalomyelitis, or as it is more simply and commonly known in the UK - M.E.

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Myalgic Encephalomyelitis: From Personal Experience

In The Beginning: Part 2 of 4

        At first, way back before I finally learned of the controversial terms ME/CFS, I thought I could probably get rid of "it" by simply upping my normal exercise regime [which was very reasonable anyway] but that didn't really help at all - and this too was a considerable concern. Not that I didn't feel any improvement at all from the increased exercise - I did. For example I improved on already good muscle tone and even increased muscle bulk a little after some 6 to 8 weeks. The mysterious "Something" however was always there or thereabouts and, worryingly, despite the consistently applied graded exercise routine, seemed actually to be increasing both in intensity and frequency?

        At this point I thought "Ok, no more Mr Nice Guy". I dug out and dusted down a very generous helping of "15 Para" grit and determination - and declared all out war on the son-of-a-bitch. I meticulously planned out a rather tough six month graded-exercise campaign using my usual exercise regime as a good starting-base from which to add an escalating weights-training programme with several daily speed-walks of gradually increasing length thrown in - just for good measure! I also factored in a few dietary changes that I believed would enhance the undoubted health benefits that were sure to unfold from my kick-ass, health-war campaign: ie, increased consumption of protein, large reduction of fats and junk foods, and good iron and multi-vitamin supplements. Then I chose a start date - and plunged right in with a solid confidence that if this "mysteriously debilitating Something" was at all sortable by exercise then I was already home and dry - needing only to catch up with it at some sure-point not too far ahead of me in time.

        Three difficult but determined months later I became convinced that I finally had the mysterious and stubbornly tenacious "it" on the run. I felt good and looked in better shape than I had for years. Rather disappointingly thought the mysterious "it" thing was still there - albeit more infrequent and less intense.

        As the carefully planned exercise regime unfolded my body began to really enjoy the workouts. Its like your whole physical being starts 'singing' through the difficulty and the efforts with a distinctly pleasurable energy. It reminded me of a much more extreme and powerful multi-level form of this "singing" that I had experienced several times in the Glasgow Para's when I was twenty-one. One particularly memorable example of this paradoxical and wonderfully unifying energy-burst occurred while doing their infamous team-event "log-race" across miles of very inhospitable German terrain as a traditional part of their very tough selection course.

        on that grueling occasion, despite being utterly spent even before the final killer climb up a steep hill to the finishing arena at the summit, I was suddenly able to somehow scramble to the top of my teams up-ended telegraph pole [ie; the "log"] on a powerful multi-level wave of that "singing" and snatch victory for us from the very jaws of defeat from two other quicker teams who's poles were already erect and who's utterly spent climbers kept collapsing off the "log" with total exhaustion without gaining the dearly coveted win that lay only at its very top - despite victory being little more than a mocking arms reach away from them. I only achieved this myself by an incredibly difficult "quick-climb" to the top, fuelled by that strange, paradoxical, multi-level energy burst, and a sustained Herculean balance there on my belly at the swaying pole's flat tip - with arms a legs spread-eagled [by command] like a starfish - for the flashing recruitment camera's on the spinning hill-top ground below, where my bedraggled and exhausted team-mates huddled and struggled to keep both our restless giant log and the strange precarious flying figure perched on it's tiny flat peak from toppling to painful group failure. But we held together as a team - and we won the day.

        And here I was having a taster of that "singing" again - albeit in a much smaller way, thanks to a mere three months of my rigorous exercise regime. My confidence of utter triumph over the mysterious "it", which was already high to start with, just soared heaven-ward as a result - now seemingly untouchable. All this, I thought, and I was only half-way though the full battle plan - which, incidentally, I had every intention of seeing right through to the very end. There were to be no half-measures here.

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Myalgic Encephalomyelitis: From Personal Experience

In The Beginning: Part 3 of 4

        From week 12 of the regime to week 16 all was going almost exactly to plan. Muscles were becoming brick hard - and swelling - and I was actually looking forward, more and more, to my workouts every day. I had even begun adding in a series of Shotokan Karate kicks, punches, and blocks that I had learned over 30 years earlier at Glasgow's Karate Academy - making up my own little kata's as I went along. However, despite all this the mysteriously tenacious and disabling "Something" was still never very far away - and this just wasn't right at all. I began to feel a bit uneasy.

        Several times per week "it" would suddenly come out of nowhere and wash over me completely for no discernible reason. This would usually be in the evening when, instead of the normal healthy tiredness appropriate to previous behaviors, my energy levels would just rapidly plummet in an unnatural and distinctive "sickly" kind of way. Suddenly I could hardly keep my eyes open. At these strange and powerfully incapacitating times just walking to the bathroom and back would require a degree of willpower, and physical effort that even I found difficult to believe - even while I was actually experiencing it first hand! Consequently, to this day I still have the greatest sympathy with other peoples credibility problems regarding the ME/CFS illness.

        In week 17 disaster stuck. I had reached the last few repetitions of a chest/shoulder/biceps weight-lifting exercise when something seemed to give at the base of my left bicep [just where it meets the forearm] and there was a sharp tearing kind of pain that I instantly knew meant trouble. I cursed for a bit and rested for a bit and cursed for bit some more until the pain finally subsided and, skipping the remainder of the offending exercise, cautiously tried the usual next one on the workout schedule. Instantly the pain was back and I knew then that my exercise regime plan was in deep trouble. The damage didn't feel at all like I had pulled a muscle. Been there done that many times before. This was a new kind of pain. It felt more like something had given-way in the muscle tendon. Anyway, the bottom line was that I had no option but to stop my health battle-plan completely and rest the damn injury. So, cursing some more just for the hell of it I reluctantly I took the next few days off.

        By the start of week 18 the arm was pain free in normal use - so I cautiously kicked off with my usual workout. The warm-up and standard gym type exercises went fine. Press-ups, leg-squats, stomach curls, etc. And the first weight-lifting exercises went alright too - and then I felt it - the deep tendon-type pain flooded through the crook of my left arm again. My heart sank in one of those "Oh no..." kind of ways as I realized that the problem was obviously worse than I had anticipated and would probably need a week or two - possibly even three or four - to sort out. I turned away from my injured arm with disgust and looked miserably out the window that my meticulous health battle-plan had just sailed straight out of and thought: "Ok then, lets fall back and regroup on plan B" - which was then hastily rustled up!

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Myalgic Encephalomyelitis: From Personal Experience

In The Beginning: Part 4 of 4

        In practice Plan-B amounted to two full weeks off any kind of exercise at all. Followed by light non-weight bearing exercises throughout the third post-injury week. Then a full return to the gym-type exercises in week four. It was during these however when suddenly, halfway through a batch of press-ups - ouch - the tendon-type pain in my left arm was right back again. This time I was dumbfounded. I hadn't got to even start phasing in my weight-lifting exercises! The injury was obviously much worse than I had thought - perhaps requiring months of healing time. I had no option but to admit it - my health battle-plan was now belly-up in the water. The battle was over. And I'd lost it. But the war wasn't.

        For the next month I did nothing but gentle flexing and stretching exercises and then started adding back in my usual bog-standard ones like press-ups, stomach-curls and so on. I had no option but to ditch the weight-lifting ones entirely so I replaced them with some light isometric ones. All seemed fine and should have been fine - but then the pain was back? Not as intense as before - but bloody well back none-the-less. So now I stopped all exercises that involved the left arm and tried carrying on with the workouts for the rest of my body. Not ideal by a long way but better than nothing - or so I thought.

        A few days later I got the same kind of "new-pain" in the crook of my right arm. This didn't make any sense to me at all. It just flew in the face of all my past physical-workout experience. Something new and nasty was surely going on here. The only answer I could come up with was simply to stop all strenuous exercises entirely for a substantial period of time - perhaps six months - and then re-evaluate the whole situation. So I plotted my new course and set sail with nothing more physically strenuous than gentle stretching and flexing. And for months on end I dutifully stuck to that.

        As each month went by, however, the incidents and intensity of the mysterious and poisonous "fatigue-thing" just kept increasing - slowly but surely. It was around this point that I finally began to realize that I was probably heading for some kind of serious crisis point in my not too distant future. Exercise, despite all my faith in it, wasn't going to be a solution. Leastwise not by itself it wasn't. Having walked the walk of it I could see that with crystal clarity now. I had tried increasing it, decreasing it, maintaining a reasonable level of it, and even several variations of all of those. Exercise, I just finally had to admit, simply wasn't the "big" answer to the mysterious fatigue-thing that I hoped - and even believed - it would be. This was a bitter pill to swallow and a very disempowering realization.

        The "core-solution", I realized, must lie elsewhere. But where? Perhaps the answer was something pretty simple? Perhaps I was simply deficient in something basic - like a vitamin or mineral. "Yes" I thought "That is definitely a possibility". Already I could feel another health battle-plan coming on...

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ME/CFS: From Personal Experience

In The Beginning

The Last Word:

        I learned a lot the hard way from trying to soldier my way, quite literally, through - and out of - the early manifestations of what I would call authentic, type-three ME/CFS. If I had known then what I know now I would never even have tried. All I did was make myself worse and dig myself deeper into long-term trouble. Not that I'm saying here that exercise isn't important in the management of, and even recovery from, ME/CFS. On the contrary, in my view it most definitely is. But regardless of what many so-called experts on ME/CFS will tell you - one size DOES NOT fit all.

        From my own personal experience of ME/CFS and the considerable experience I have gained over the years from related books, articles, essays, research findings, newsgroup/forum/chat-room discussions, sufferer-based organization news-letters, Internet hosted email-digests, and numerous one-to-one conversations with many other sufferers - I have come to what, for me, has been an unavoidable and unmistakable basic conclusion about this poorly understood illness: that there are at least three distinct varieties of it.

        For uncomplicated convenience, I call these varieties type-one, two, and three. Type one is where the ME/CFS victim is suffering from what I would call a wholly inauthentic form of ME/CFS: that is to say one that is entirely psychiatrically or psychologically based - and - entirely psychiatrically or psychologically maintained. Type two is where the ME/CFS victim is suffering from what I would call a semi-authentic form of ME/CFS: that is to say a form of ME/CFS that was initially physiologically based and then subsequently becomes psychiatrically or psychologically maintained. And finally, type three: where the ME/CFS victim is suffering from what I would call authentic ME/CFS: that is to say that their ME/CFS has been both physiologically based and subsequently physiologically maintained thereafter - with or without some related psychological overlay. The big trick, Mr Wessely [and hapless followers], is simply to recognize that there ARE different types of ME/CFS to start with - and then learn how to discriminate between them. Not simplistically lump them together- as you so unintelligently do - into one big, convenient, undifferentiated, psychiatric-blob.

        For victims of type-one or "wholly inauthentic" ME/CFS "Graded Exercise" IS obviously the way to go - and the sooner the better. The downward spiral of "learned helplessness" has to be broken [physical exercise = pain = avoidance = more pain = stronger avoidance - and so on] and the driving pathological beliefs underpinning their illness tackled [Cognitive Behavior Therapy (CBT) or whatever]. To simply rage - as many ME/CFS sufferers do - that "Graded Exercise" and "Cognitive Behavior Therapy" are the spawn of Satan and devastatingly dangerous to ME/CFS sufferers full stop is to completely miss the point [as does Mr Simon Wessely and his many and varied followers] that there are more than one type of ME/CFS patient. These "type-one" ME/CFS sufferers DO need to be encouraged to persevere through the normal recovery pains of de-conditioned muscles and DO need appropriate help to overcome their "unhelpful illness beliefs". There can be little in the way of justifiable doubt about that. It seems clear enough to me that the salvation of their health utterly depends on it. Allowing them - or encouraging them - to stop at any point when the going gets a bit tough in the form of "healing-crisis" pain - mental or physical - is simply to help validate, perpetrate, and even more deeply entrench their illness. To those of my fellow "type-three" ME/CFS sufferers who are guilty of raging against Graded Exercise and CBT [for themselves - quite rightly] I would ask you this: what right do you have to seek to deprive the "type-one" and, to a lesser extent, "type-two" ME/CFS sufferers of the only treatment protocol that can truly help them?

        For victims of type-two or "semi-authentic" ME/CFS the issue of graded exercise is obviously a little more complicated. Here we have a case of an authentic and possibly identifiable physiological real-world trigger of some kind for the resulting ME/CFS condition - that is then psychiatrically or psychologically maintained long after the causative triggering factor is no longer relevant. My own view is that the initial trigger may have been viral, or perhaps the result of a bad bacterial infection. It may have been due to exposure to toxic chemicals in the environment, or it may even have been due to short-term exposure to electromagnetic fields probably causing, in addition to God knows what else, a kind of electroporation induced chemical overload where cell permeability is temporarily affected so that every one-unit of chemical exposure has the effect of 10, 20, 50 or more times as much. The ME/CFS trigger may even have been a combination of any of these things. However, regardless of the identity [or identities] of the "real-world" trigger for the ME/CFS illness the matter of "graded exercise" has here to be approached in a very different fashion to that of the "type-one" ME/CFS sufferer. Any exercise undertaken at all while still under the influence of the initial "real-world" trigger must be left solely to the discretion and inclination of the sufferer. Otherwise further physiological and possible psychological damage may very well be the lasting end result. Thereafter, however, when the "real-world" trigging factor is no longer an issue, a more "type-one"approach may be appropriate - as long as permanent physiological damage at the "real-world" ME/CFS triggering stage could be safely ruled out. If not then the benefit of the doubt should be granted to the sufferer. Remember: First do no harm!

        If we are talking about a victim of "real-world", physiologically based, authentic, "type-three" ME/CFS however - then the case for "graded exercise" is different once again. Here exercise [both physical and mental] is still, as always, very important - but, as there is absolutely no psychiatrically or psychologically based muscle-de-conditioning [as per type-one entirely and type-two partially] due to unnatural avoidance of normal physical activities, then absolutely all exercise limits have to be set by the sufferers themselves period - no exceptions here to this whatsoever. These people are physiologically damaged therefore whipping more physical effort out of them Mr Wessely [and followers] "for their own good" is not only morally and criminally negligent to say the least it is only going to physically injure the sufferer all the more - forcing, no doubt, larger and even more completely bogus psychiatric labels onto your innocent victim to account for the failure of YOUR erroneous illness beliefs.

        In conclusion: it is my view that Graded Exercise is a very important element both in the management of - and recovery from - the ME/CFS illness, but that it can only be safely used from a clear understanding that [a] there are different types of ME/CFS illness and [b] each type requires a different Graded Exercise strategy. Outside of this, particularly in the close-minded, arrogant hands of the simplistic and undifferentiated "one-size-fits-all" school of ME/CFS thought, Graded Exercise can be an absolute health and life destroyer, and to my mind all the practicing proponents of this scandalous, health-destroying, rash generalization of ME/CFS should be immediately struck off the medical register for dangerous, unscientific incompetence - and brought before the nearest criminal court of law and made answer for every single life they stupidly and arrogantly maimed. To this lot of reprehensible snake-oil pushers I say...

Your days of ignorantly and arrogantly ruining our health are rapidly drawing to a close.
And we WILL remember you.

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Namaste: The Spirit in me acknowledges and honours the Spirit in you.

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"And I saw a New Heaven and a New Earth..." Revelation 21:1