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