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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

Remember the most ill

A tribute to the most ill and to all those who care.

https://www.youtube.com/watch?v=YrinmJkqmOQ&feature=youtu.be

How CG53 failed patients

Stonebird


Greg Crowhurst November 2016

NICE are currently considering whether their guideline CG53 Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management requires updating.

IT MOST CERTAINLY DOES !!!

When CG 53, based upon a handful of low quality Randomised Controlled Trials  that were methodologically flawed,  was published in 2007 almost all the UK ME Charities condemned it as unfit for purpose. This is hardly surprising given that the Guideline Development Group (GDG) excluded from its membership all NHS specialists experienced in treating adult ME patients .

As Kevin Short (2012) comments: “This is shocking by any standards: imagine the media outrage if a NICE guideline on infectious disease excluded all virologists from its production or a guideline on breast-cancer excluded all oncologists?

The ME community greeted NICE’s guideline with disgust and widespread outrage that so much evidence about ME had been ignored.

Over twenty renowned ME experts later provided Statements to the Court (Judicial Review of the NICE Guidelines) challenging the validity of the research that NICE used for its Clinical Guidelines.

Here is a brief overview of the many ways NICE got it so wrong :

CG 53 :

  • Failed to grasp the full nature of neurological ME and the implications for management, and also failed to provide adequate guidance for diagnosis.

  • Failed to include experts from all the relevant professional groups on the Guideline Development Group ( GDG)

  • Failed to give patients' / carers' views equal weighting and status, as subsequently confirmed by two members of the GDG.

  • Recommended widespread use of the psychosocial rehabilitative treatments of CBT(Cognitive Behavioural Therapy) and GET (Graded Exercise Therapy) in spite of reports of harm from ME. At best this means that the main thrust of the guidelines are irrelevant for most people with ME, at worst dangerous.

  • Failed to consider the relevant evidence about the illness. Did not study the aetiology and pathogenesis of ME, this meant that thousands of papers could not be discussed as part of the process. NICE ignored the international evidence that ME/CFS is a biomedical, not psychiatric, disorder, claiming that studying this evidence fell outside its remit.

  • Placed undue emphasis on two treatments - cognitive behavioural therapy (CBT) and graded exercise therapy (GET) - for which the underlying evidence is inadequate and unrepresentative.

  • Did not agree to recognise the World Health Organisation's classification of M.E. as a neurological illness.

  • Did not convey or reflect the impact which the illness can have on the lives of those people who are most severely affected by M.E

  • Relied upon an "evidence-base"which has been exposed as deeply flawed by virtue of the heterogeneous populations studied; the methodological inadequacy; the corrupted data; the high drop-out rates; the undeniable ineffectiveness of CBT/GET as shown by the outcomes measures, and the finding that the claimed benefits may have been illusory. (see: "Inadequacy of the York (2005) Systematic Review of the CFS/ME Medical Evidence Base" by Malcolm Hooper & Horace Reid at http://www.meactionuk.org.uk/FINAL_on_NICE_for_Gibson.html)

  • Created a wholly inaccurate picture of ME : a serious disabling neurological and multi-system dysfunction disease; the Guideline more accurately describes patients suffering from idiopathic fatigue, as outlined by the WHO at ICD-10-f48.

  • Limited their consideration of the literature to that which supports the psychiatric paradigm of ME and failed to take account of the available published biomedical evidence about ME, without knowledge of which the Guideline fails to provide an aid to diagnosis (as was its remit).

  • Based its management recommendations on weak and inconclusive studies of dubious quality on heterogeneous groups of people, the majority of whom were unlikely to have ME but may have suffered from any one of over 30 other disorders where "fatigue" is a symptom.

  • Its conclusions did not coincide with the majority professional view of the international medical and scientific communities about ME.

  • Confused ME with other conditions and fatigue states and have poorly married together two opposing views : the psychiatric model which says "unhelpful illness beliefs", "thoughts, feelings, behaviours" and "over-vigilance to symptoms" perpetuate the illness and the biomedical model, which validates the physical illness. This has led to a flawed document that meets no-one's real need, with a predominance of psychiatric interpretation.

  • Disregarded the fact that patients are almost universally opposed to CBT and to GET, because survey after survey has shown that GET can be harmful to people with ME.
  • Disregarded the fact that patients are almost universally opposed to CBT and to GET, because survey after survey has shown that GET can be harmful to people with ME. NICE has produced Guidelines for many different clinical conditions. Only in the case of the organic disorder ME is CBT recommended as the primary treatment of choice.

  • As Margaret Williams (2007) has extensively documented, NICE appears to be in breach of the AGREE guidelines, a rigorous methodological process it is expected to follow in drafting clinical guidelines.

  • Significantly NICE proscribed the use of supplements and vitamins in the treatment of ME. Specifically it states : There is insufficient evidence for the use of supplements – such as vitamin B12, vitamin C, co-enzyme Q10, magnesium, NADH (nicotinamide adenine dinucleotide) or multivitamins and minerals – for people with CFS/ME, and therefore they should not be prescribed for treating the symptoms of the condition. (NICE Clinical guidance 53 )

Margaret Williams (2008) comments : “the proscribing by NICE of appropriate testing and its stipulation that any vitamin or mineral deficiency must not be corrected by prescription would seem to constitute a real and even life-threatening danger to people with ME/CFS.

NICE’s proscription, although only guidance, is quite extraordinary , in light of the evidence.


Conclusion

The ME community has for many years suffered from the psychiatric takeover and denial of their illness, leaving doctors and patients floundering in a sea of misrepresentation,misinterpretation, mistreatment and misdiagnosis.

CG 53, as this document has outlined,  is a prime example of how the physical tortuous reality of neurological ME is constantly denied, diminished, negated and ultimately neglected. The ME Community , we pray, will grasp this opportunity, especially building upon the recent exposure of the PACE Trial, to show how unfit for purpose the NICE Guideline is.



References :

Short K(2012) A CALL FOR A PARLIAMENTARY SELECT COMMITTEE OF INQUIRY INTO UK ME & CFS POLICY http://www.angliameaction.org.uk/docs/wessely-misleading.pdf

Williams M (2007) Comments on the NICE Guideline on “CFS/ME”:


Williams M (2008) More potential dangers of the UK NICE Guideline on "CFS/ME" for people with ME/CFS Margaret Williams http://www.meactionuk.org.uk/Dangers_of_NICE_for_MECFS.htm




Severe ME : Patient Surveys

It is striking how much the experience of the severely affected is comprehensively ignored.

As an example, in conjunction with the 25% Group we poured heart and soul into doing these two rare regional and national surveys of people with Severe ME, to try to affect change locally for a biomedical service in Norfolk and nationally for the Gibson Inquiry, yet they are never quoted.

This publication is an attempt to rectify the situation.

 The voices in this document, still unheard , are of immense importance; their experience of ME is infinitely more extreme than the mainstream, many of whom may not have Myalgic Encephalomyelitis in the first place.

These surveys reflect an almost total lack of understanding of this marginalised group.

It is to the NHS’s shame that people with Severe ME still receive little to no service or support.



The disease that used to be known as “ME”

The disease that used to be known as “ME” is not recognisable under the umbrella terms of ME/CFS or CFS or CFS/ME.

"ME" has become a meaningless term; a complete and total disaster for everyone
We are sick of the misrepresentation, the misinterpretation, the lack of clinical respect, the focus on fatigue, the compromises, the misdirection, the mistreatment and misinformation that constantly negates the disease and holds out little hope of change, especially for the most severely affected.

Clinicians and charities have, we suggest, contributed to the demise of the term ME by focusing upon fatigue and not the more serious Neurological/Cognitive, Autonomic, Neuroendocrine, Immune, Cardiovascular and Gastric manifestations and Enterovirus as the cause of the disease .

They have failed to stand up adequately, if at all, against the damning involvement of psychiatry, often colluding with them openly, condoning for example a research collaborative here in the UK that openly includes and is led by psychiatrists, rather than pushing boundaries enough to get real change.

They have allowed the mishmash CFS continuum to continue by uncritical use of the term and by accepting poor and varied use of different criteria that result in poor, inadequate diagnosis and recognition.

In our long experience, they have displayed professional arrogance and mistreatment in spades through their ignorance of the most severe symptoms, especially paralysis.

They have shown little understanding of the extraordinary degree of awareness and skill required in interacting with someone so ill and so hypersensitive.

The consequence is that people may or may not have the neurological disease, “ME” identified by Ramsay et all. How can anyone know, if there is no test that identifies it and the only one that was created for it has been disregarded and no longer offered?

Even if you can find a knowledgeable and experienced doctor, without a diagnostic test, there is no real certainty that you have what they say.

At the end of the day, when you really look at it, it is all, shockingly, guesswork. We are all being left in the dark with no proper service. Any treatment options surely are trial and error posing a grave risk particularly to the most severely affected.

In truth we are all living in a nightmare.

What we need to do is demand the physiological explanations that underpin our symptoms and illness experience. Without this knowledge we are all endangered.

A test should be the first priority, we should at least fight for at least the VP1 test to be reinstated in the UK . Everything else means endangerment for some at least and continued misuse of the name Myalgic Encephalomyelitis.

Stonebird
Greg Crowhurst
November 2016

23 years

Today is our wedding anniversary. 23 years of love and 23 years of indescribable physical pain and repeated paralysis and torment, 23 years of speaking up and fighting for appropriate help. 

How do we celebrate? We light a candle and give thanks for our love which has grown despite the horrendous circumstances and medical negation experienced down the decades. 

We hold on to hope that next year will be better, that the truth will be revealed, that understanding will manifest and justice be found.

An anniversary then both of loss and hope. We pray for strength to carry on. We ask for healing. We want answers. May this be the year.