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The Year of No Compromise

Greg Crowhurst 8th March 2008
(Updated January 2017)


When you look closely at what the psychiatric lobby are actually recommending , the tactics they are using and the practices they are advocating, it becomes extremely clear that they do not benefit the severe ME sufferer.

The issues though are not always that obvious or easy to grasp ; not given the physical isolation, the severe illness, the brain fog and the other profound levels of disability that people are experiencing with WHO neurological Myalgic Encephalomyelitis.

This is a simple summary of the inferred messages underpinning the psychiatric paradigm , currently being heavily promoted in the UK:

The   recommendations :


  • do not investigate  ME patients .
  • do not provide  special facilities for ME patients  other than psychiatric clinics .
  • do not offer special training to doctors about the disease .
  • do not offer  appropriate medical care for ME patients . 
  • do not offer  respite care for ME patients .
  • do not offer state benefits for those with ME .
  • do not conduct  biomedical research into the disorder .


The tactics:


  • the wreaking of  havoc in the lives of ME patients and their families by the arrogant pursuit of a psychiatric construct of the disease
  • the attempts  to subvert the international classification of this disorder from neurological to behavioural.
  • the propagation of   untruths and falsehoods about the disease .
  • the building of  affiliations with corporate industry .
  • the insidious  infiltration  of all the major institutions .
  • the denigration of  those with ME .


The practices :


  • the attempt to make "ME" disappear in a sea of chronic fatigue.
  • the refusal to see or acknowledge the multiplicity of symptoms 
  • the ignoring and misinterpretation of the biomedical evidence. 
  • the suppression of published findings .
  • the vested interests .


The impact :


  • the arresting and sectioning of protestors .
  • the silencing of ME patients, through being given a psychiatric label .
  • the suppression of dissent .
  • the labelling of ME patients as the "undeserving sick , as malingerers .
  • the forcible removal  of sick children and adults from their homes.


It is poignant how an institutionally supported prejudice against people with  ME has  arisen, based on nothing more substantial  than  supposition and opinion., carefully disseminated.

You have to be very careful how you discern the truth; it is an important issue in the corporate wall of collusion surrounding the physically sick people who have ME.

We have to be very clear about what is the truth about ME and what is either deliberate, naive or ignorant misinterpretation or misrepresentation.

The impact of the above strategy on people 's lives is catastrophic .  Who can measure the suffering ?
You have to ask yourself "What do I want? Is it this?" And if it is not, then make sure your MP knows about it. Make sure people understand you have a physical disease acknowledged by the WHO. Make sure you do not contribute to the wrong pathway. Let us have no compromise on this. Let us stand up for Truth.

This has never been more necessary than it is now. We have to stand firmly behind the biomedical knowledge of this illness ; we have to make sure the true physical needs are heard and responded to.
Make this the Year of No compromise!

Ref :
Corporate Collusion, Malcolm Hooper, Eileen Marshall, Margaret Williams 2007 http://www.meactionuk.org.uk/Corporate_Collusion_2.htm

The struggle and the agony.

I don't understand why there is so little outrage about the way CFS has taken over ME. Every day
pushes my wife deeper and deeper into an agony so profound it is defies any human capacity to cope, yet cope she must.

Extraordinarily, she clings onto hope. But we have to be our own Consultant, our own Medical Specialist, for there is no one else and never will be for someone this severely affected, all the time that "ME" is allowed to have such a broad range of meaning.

I don't understand, where is the fire, where is the anger, where is the fight for the TRUTH of Myalgic Encephalomyelitis, anymore ?

This video is about the struggle and the agony :

https://www.youtube.com/watch?v=w27KsESpeEE

One of these days
We are going to be heard
One of these days
All that we fought for is going to be heard
I heard the Stonebird sing

One of these days
You're going to win
Oh you ain't no has-been
One of these days
you're going to win

One of these days
there's going to be
a big breakthrough
all those who have done us wrong
gonna meet their Waterloo

One of these days
I am going to walk down the street with you again
I intend to walk with you again

One of these day swe are going to cross right back over
the poverty line
One of these days
Our light is going to shine
shine so bright !

Words & Music (c) Greg Crowhurst 2017
Animation software : Muzivu

https://www.youtube.com/watch?v=w27KsESpeEE

Have I wasted my time fighting for “ME” ?

Stonebird

Greg Crowhurst January 2017

I never thought, not for a nanosecond, that after more than two decades of struggle, there would be such a thing as advocacy groups strongly pushing for CFS to be reclassified as ME.(Jason 2016). There is so much more than a change of name that is at stake here.

You cannot change a label that encompasses a heterogeneous group of people all with different illnesses and conditions and make it mean Myalgic Encephalomyelitis; it is not the same thing at all.

Thankfully others are taking a much tougher line, arguing that “myalgic encephalomyelitis should retain a strict definition as a distinct neurological disease that includes measurable abnormal changes in the brain and central nervous system.” (Jason 2016) But who is listening to them?

And how much power and say do they have, at the end of the day?

It is a travesty that  “ME” has been taken over by CFS and rendered a useless label with variable meaning.

The term “ME” helps no one anymore because it can be interpreted anyway the practitioner or person wants it to be. And without a specific test to identify clearly who has it, everyone is open to misinterpretation, misdiagnosis and just plain guesswork, in our experience.

We old timers see the above debate as yet another example of the extent  to which a predominantly diverse and vocal patient advocate population has come to dominate, promoting a much wider, heterogeneous, vague fatigue misinterpretation of ME, endangering the visibility of the true disease, neurological Myalgic Encephalomyelitis.

The name “ME” has been hijacked to encompass all manner of conditions, including Lyme, Hypothyroidism, Epstein Barr, Allergy, Depression, rare undiagnosed diseases and other conditions, leaving people with Myalgic Encephalomyelitis a minority in their own illness, relying predominantly on psychological questionnaires and history, rather than physiology to identify their disease!

ME is unreliably identified without testing for an enterovirus, yet the VP1 test was abandoned, leaving people with no accepted test to identify that they had an enterovirus, except for their own anecdotal history and memory of illness.

There will never be a specific, reliable test though, that clearly identifies WHO G93.3, all the time that researchers focus on an heterogeneous group of patients who have a range of illnesses underpinning their seemingly common symptoms, with the primary symptom fatigue.

In this climate of ignorance and generalisation the wider heterogeneous group appears to naturally favour the outdated CCC over the much stricter ICC Criteria, which calls to separate ME from CFS, uncritically uses the composite term “ME/CFS” and even “CFS” to describe “distinct illness subtypes characterized by different causal and/or maintenance mechanisms”, (Jason et al 2010) or in other words a heterogeneous disease; utter heresy to seasoned campaigners who have spent their lives fighting for the truth.

 M.E. is not a subgroup of 'CFS' nor 'ME/CFS.' !! As Jodi  Bassett emphasised so well “ Fatigue illnesses are not subgroups of 'CFS' or 'ME/CFS' ...they are diseases in their own right (eg. FM, Lyme, candida, MS and so on). 'CFS' and 'ME/CFS' help nobody.”

“CFS” was created and deliberately manipulated by the psychiatric lobby to be so meaninglessly heterogeneous that the infamous PACE Trial, for example, was forced, under intense pressure, to admit it was not studying “ME as operationally defined”.(Hooper 2011) Yet “CFS” still exerts its dangerous dominance over UK policy, clinical practice and supposed 'treatment' pathways, for people with Myalgic Encephalomyelitis.

ME, as “operationally defined” is a classified neurological disorder (ICD-10 G93.3), CFS has always been “ an alternative, less strict, operational definition which is essentially chronic…fatigue in the absence of neurological signs, (with) psychiatric symptoms…as common associated features.” (Hooper 2011)

Even so, a psychiatric emphasis upon fatigue is fast being replaced with a potentially equally harmful biomedical emphasis upon fatigue and an acceptance that ME is different illnesses, thus still making it an umbrella term, rather than a distinct, specific neurological disease. The mishmash CFS label  seeking to be renamed ME, loses the true disease in a sea of others, that are not it. No one really knows what they have and whether a treatment will be effective or harmful. We find this unacceptable.

"ME" as a composite, heterogeneous entity, is a complete and total disaster  especially for the most ill, who for at least the last thirty years have been comprehensively ignored and negated because they simply do not fit the fatigue profile represented as ME; for them the term “ME” has become toxic and unhelpful in getting adequate or proper medical input and respect or understanding.

Naomi Whittingham (2016)  describes very well just how unsafe the situation is : “ Profoundly ill and disabled patients are left in the wilderness with little or no medical support, often blamed for their symptoms and forced into treatments that cause deterioration. Extreme symptoms, such as the inability to swallow, may not be taken seriously by professionals, leaving patients at serious risk of life-threatening complications.”

People with ME are not safe !

If you have ME the last thing you probably want to do, nowadays, is say that you have ME, for your chances of treatment, hope and a cure are almost non-existent. “ME”, the “diagnostic dustbin” (Bassett 2009,) as it is now represented and understood, is not “ME”, the WHO classified disease that I and many others have spent decades fighting for and trying to get a proper biomedical pathway set up for, with medically aware clinicians.

Has it all been a tragic waste of time? Yes, I have to say, it feels like it has, fighting a losing battle, for the truth of ME to be recognised, has not helped my wife one bit.

The best thing you can do, if you have ME, we believe, is try, like us, to understand your individual symptoms. If I had my time over again, I would not have devoted so much precious time fighting for what would inevitably become  - I can now see clearly, a meaningless, empty construct.

Instead I would spend the time understanding my wife’s biology, conducting our own research, getting our GP on side, studying, measuring, gathering vital medical evidence, investing in monitors and tests – in the total absence of expert input, becoming our own experts.

That is what I am doing now, I wish with all my heart, I had done it much sooner.



References


Bassett J (2009) MERUK - Former M.E. research group? 
http://www.hfme.org/wmerge2.htm

Hooper M(2011) Initial response by Professor Malcolm Hooper to an undated letter sent by Professor Peter White to Dr Richard Horton, Editor-in-Chief of The Lancet 
http://www.investinme.org/Article427%20Initial%20response%20by%20Hooper%20to%20undated%20letter%20by%20White%20to%20Horton.htm


Jason L et al (2016) Myalgic Encephalomyelitis
https://rarediseases.org/rare-diseases/myalgic-encephalomyelitis/

Jason et al (2010) Classification of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome by Types of Fatigue 
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4852700/

Whittingham N (2016) Severe ME left me in a world of pain and darkness. 26 years on, why is it still so poorly understood? 
https://www.opendemocracy.net/naomi-whittingham/severe-me-left-me-in-world-of-pain-and-darkness-26-years-on-why-is-it-still-poorly-understood