The Journey to Understanding...

This page within itself ventures upon the journey of such a debilitating, disabling and misunderstood illness... such is the factor of M.E./C.F.S. with the hope.. that this particular journey will lead you to the required knowledge to challenge the negativity that surrounds the controversy of the impact of negativity within the sufferer itself...

At a glance we look well... and will always dismiss the reality of how bad we feel... and carry on regardless... to the extent our body is too tired to operate.. as normal.. even to the point that our brain shuts down... temporarily... to the extent that we cease to function.... and at times we develop a ghastly pallor of face with frequent lupus-like sub maxillary mask... this has been noted on many an occasion by others... with the outcome of... "You look tired"... folks do not have a clue.... as whilst this mask portrays only tiredness.. the individual is suffering a multitude of symptoms... and yet again... because of the negativity surrounding the subject of C.F.S./M.E. we as individuals... tend to hide... we will never admit the factor of how ill we really are... and will always dismiss much needed help... and will keep going regardless... after all.. is it not publicized that C.F.S./M.E. is all in the mind???

We are frowned upon by society... as being lazy... but the fact of the matter is that we as suffers.. are a nation of professionals or individuals with an above-average education and a successful career... who then, through no fault of their own... have to forfeit a significant income and a comfortable lifestyle... to such a non controversial illness.... labeled as depression.... if only... if that was the case factor we would be prescribed anti-depressants... and still be able to work....

So if you are a friend, carer, parent, aunt, uncle, gran or grandpa... etc... please spare a moment of your time... and partake this journey of understanding... this within will arm you with the required knowledge to provide support to any close family members/friends.... that require understanding.... yes, I am aware of the factor that within... they look well... but it is a well known factor... that the naked eye... does not detect nor understand what it can't see....

Cancer in itself... is always a good conversation starter.... that we can understand... and can at least give support to those that suffer.... but we can not see it.... and to this day... it has been well reported, that a dog has the ability to smell it... and within this concept... is a virtue for many suffers.. whose life's have been saved.... by their pet dog....

Now what would happen if the detrimental effects of cancer were never publicized as being as horrific as they are.... and the knowledge of the secondary effects... due to trying to cure it as in radiation and chemotherapy left the person involved.... more helpless than the cancer itself.... with only a certain percentage of full recovery.... yes, sometimes... they reach a stage of remission.... until the cancer comes back.... but due to the advance in medicine... if the cancer is caught at early stages... then the sufferer can and does.... carry on a normal and healthy lifestyle....

So now you understand the concept of cancer... but do you understand exactly how that person is feeling... mentally and physically?

Me thinks not....

But the healthcare providers seem to think so.... as with any terminal or chronic illness.. they still try to retrain the individuals mind... with "Cognitive Behaviour Therapy" and provide them with a low dose of Trycylic anti-depressants.... this is geared towards teaching everyone a new learning habit.... regardless what chronic, or life threatening disease you have unfortunately contracted.... which includes... cancer to aids!!!! and also take into consideration is the specification of an invisible illness... such is C.F.S./M.E.

Don't you think.. that even for a second... that if the healthcare providers only thought that we were only just depressed.... then we as individuals would be dismissed and prescribed anti-depressants???? so why go to all the trouble and cost from the N.H.S to administer "cognitive behaviour therapy" and admit us as suffers to "rehabilitation centres"

Now we approach the junction... and this road leads to the world of a C.F.S./M.E. sufferer... and due to the controversial negative publication... you feel lost... but please do not despair... I know where we are going.....

Now we are approaching the publicized symptoms....

as in....

Other reported symptoms...

But we are still disregarded... looked on as being depressives....

But please take a minute, close your eyes... and imagine how you would feel if you had to suffer all or some of these symptoms at once.... bearing in mind... how poorly you would feel suffering only one symptom at a time....

I take it that you are feeling really bad... as realisation sets in... well imagine how we feel... and the press have publicized this as no more than "yuppie flu"....

Yes, I know what you are thinking... how dare I even use cancer as an opposite....

Well why not, as said above... people die from cancer... but what the press has not published is the factor.... that people also die from C.F.S./M.E.

SORRY, DID YOU NOT KNOW???

The illness has been associated with infrequent deaths involving CNS (central nervous system) changes. Many of these changes have been sub-cortical brain changes. Deaths in sporadic cases have been rare but have been associated with acute cardiac arrest, with no signs of coronary disease, and frequently suicide. Deaths other than suicide are uncommon

As C.F.S./M.E. illness in adults is associated with measurable changes in the CNS and autonomic function and at times injury to the cardiovascular, endocrine, and other organs and systems.... It is described as...

Then the press published the first recorded death as in C.F.S./M.E. such as the death of Sophia Mirza

The above... is perhaps one of the most documented cases of neglect... amongst the health providers....

So why such negativity??? and why are we being looked upon as being mentally ill????

Society perhaps??? and it's learned behaviour... from such a misinterpreted illness...

This is one mans story, as previously mention in another page of my website....


I was very disturbed and saddened to learn of the death of and the circumstances Sophia Mirza, in which she died. Such a story is all too familiar to me and my own experience. I have for 20 years been a severe M.E. sufferer. For a whole two and a half years between 1989 and 1992 I was completely, totally and utterly bedridden. I could not do any weight bearing at all and was cared for at home by my mother, and was washed by District Nurses. Most expected me to die.

During that time I was taken captive by psychiatrists and taken to The xxxxxxxx Psychiatric Unit, xxxxxxxx Hospital, xxxxxx. For six months I was subjected to severe and terrible psychological abuses in what I term their `interrogation chambers'. I was subjected to a regime of the threat of physical torture, bullying, intimidation, scorn, derision, lies, deception, malice, and above all hatred. The stress and emotional torment induced in my mind was extreme beyond description. At the end of their `treatment' the psychiatrists claimed to have done wonders for me, and to have transformed me into a wonderful whole new person who'd progressed greatly in mental health and well-being. But the truth was that the psychological damage inflicted into my vulnerable mind was colossal, and has so far lasted the rest of my lifetime.....

You can read the rest of this story on the page entitled...
"The Truth Behind the Invisibility of C.F.S."


But regardless... whilst we as sufferers are primarily professional middle-class individuals. That have worked hard for years to further their careers, whilst most with major initial psychiatric illness would have simply failed to achieve this success....

Okay... well, dismiss my efforts to better myself... because if the truth be told... my efforts to better myself have dismissed me!!!

Momentarily the aspects of normality set in... only to leave me in a bigger turmoil than I initionaly hesitated... especially when the values of the "norm" are dominant within the structure of my lifestyle... only to be faced with the virtue of frustration... of momentarily incapability's....

I question the concept of such a non specific illness... religiously.... but I can't find the answer that I am looking for... as momentarily... I am well... only to find that an hour or so later.... I am struggling big time....

Perhaps I am going mad?? but to be honest.. within that concept... that is what the healthcare providers want us to believe.... therefore... we can be dismissed and placed under psychiatric care... as many others have been placed within.... before us.....

But we are strong... and will dismiss any efforts of the N.H.S to relinquish us into the afore mentioned category.... as momentarily... our brain apprehends the concept of dismissal.... especially amongst society so to speak....

Many suffers... apprehend the controversy of negativity... to the extent that they dismiss reality.... and suffer in silence...

But I will not!!!!!

Why should I assist the N.H.S within there covert operation of labeling millions of suffers as depressives?????

Years ago.... when this illness was first broadcast... as "yuppie flu" I came to the same conclusion as many of you.... as in the case scenario... that the yuppies.. had invented an illness not to work... "lazy baskets" came to mind... but unfortunately... I have became one of them... through no fault of my own....

My only crime was to work my ass of.... and due to my illness... I have lost everything....

No one ever told me that this would happen... I honestly thought that all I was doing... initially was to better my lifestyle... and the greed for money.. was an object of desire...

But within desire... comes contempt... to the extremities of "burn out" and whilst we continue to seek the concepts of desire... and accomplishment... our bodies have developed a safety gage, and switches of... which within... creates a world of frustration.....

Frustration then directs us to the underground of silence, whereas we seek asylum within others... but continue to pray for realisation within society...

Thank you for partaking this journey of understanding.....

And if for some bizarre reason.. you need to retake this journey...

Then the train to realisation will leave approx... an hour from now....

Perhaps the N.H.S themselves will partake in the journey to understanding some day in the future...