Lost Services ,  Lost Lives
Stonebird response to the AHRQ Addendum.

It is a welcome change, to see common sense finally prevailing in the U.S. Agency for Healthcare Research and Quality (AHRQ)’s ground breaking addendum to its 2014 ME/CFS evidence, downgrading the effectiveness of cognitive behavioural therapy (CBT) and graded exercise therapy (GET) in the treatment of ME, as well as highlighting the inappropriateness of the Oxford Criteria to identify patients safely or at all.

It is also hugely encouraging to hear that the Information Commissioner has just ordered that the PACE Trail data be released.

These two game changers must be viewed in the context of what has been happening to people with Myalgic Encephalomyelitis for the last 30 years, who have been excluded from proper medical and clinical input, appropriate to the seriousness of their physiological symptoms.

The term ME has been so misused for so long now, that there is little clarity about who has what illness.

The misinterpretation, the lack of clinical respect and knowledge, the focus on fatigue, the compromises, the misdirection, the mistreatment and misinformation has negated the relatively small group of people with Myalgic Encephalomyelitis, who remain hidden under a wide CFS umbrella, is a travesty.

It is a direct result of the denial, negation and downplaying of ME as a neurological disease, by psychiatry, for decades using the Oxford criteria, to misdirect and focus attention on general and chronic fatigue.

The list of those dying in horrendous circumstances from the disease directly and indirectly through suicide, due to the hopelessness of their situation, the unbelievable torment of their suffering and the denial of basic health respect, grows shockingly long.

The UK psychosocial fatigue clinics set up for Chronic Fatigue, passing as clinics for ME, ineffectively and inappropriately offering management techniques such as CBT and GET, promoted in large by the PACE trial, continues to fail the ME community.

A chronic lack of understanding promoted by research using poor criteria  that ignores the most severely affected plus the complete confusion over diagnosis and various different names used, has made it very unsafe for people with ME trying to navigate health care systems around the world.

The prevailing psychosocial paradigm is almost certain to cause harm to people with ME. 

 A generalised fatigue focus, that ignores severe and serious symptoms such as paralysis, muscle tremor, gut issues, gastroparesis, intense indescribable whole body pain, hyperacusis, MCS and photophobia, to mention only some, leaves those suffering from them, without clinical input, recognition or understanding or any means of moving forward toward hopeful treatment.

This is psychiatry’s legacy: lost generations of people, suffering intensely, hidden, off the map in terms of of clinical input and appropriate health care, ignored, misrepresented and left without help or hope.

A hugely influential fatigue lobby that commands enormous power and influence still continues to do great harm, resulting in:

  • lost services and lost lives
  • confused research, not researching ME specifically yet purporting to, by the use of confused or wide criteria and different name labels
  • the countless numbers of housebound and bed bound people, living in a limbo land of agony
  • the chronic lack of understanding of the physical illness
  • the proscribing in the UK of tests that might help identify health issues
  • the lost VP1 test to identify Enterovirus involvement

How many more people have to suffer and die from this disease?

How many more people who are tormented and physically suffering, left in agony for years, spilling into decades, will have to endure the ongoing misdiagnosis, misinterpretation by doctors, the lack of appropriate care and understanding or investigation and the misrepresentation of ME in health service provision ?

When will sense, integrity, genuine concern, compassion, win through? Perhaps it is just beginning?

When will scientific research with proper, specific ME criteria, for the actual disease, be the standard?

There is an uplifting sense and a hope that, at last, after decades of struggle, we are entering the end game. However, we still see little hope for the future, all the time that fatigue remains the primary focus, whether physical or psychological and the severely affected remain side- lined, ignored, isolated because of the nature of their illness and the difficulties they have in engaging with people and services.

Even if psychiatric involvement is seriously undermined and recognised as inappropriate and, as is necessary, deposed from its seat of power and control, the damage has already been done.

Far too many compromises have been made; the original focus on Myalgic Encephalomyelitis as a neurological disease initiated by an enterovirus has almost been lost in history. 

We fear that a biomedical fatigue focus will still neglect the most severely ill and the real illness, ME, itself, unless a new ME pathway is set up, based on the work of the great pioneers, Ramsay, Richardson, Dowsett, all sadly no longer with us.

The separation of ME from CFS is a battle still to be won. This will be accomplished through the universal acceptance of a proper clinical definition, such as the ICC criteria, not compromising with the outdated, middle of the road, Canadian Criteria. 

A proper biomedical treatment pathway with appropriate clinical input for the homebound  has to  be created, based on in-depth knowledge and comprehension of the complex health issues people with Myalgic encephalomyelitis experience together with an understanding of how to provide a safe service that accommodates the massive difficulties they experience in face to face interaction and investigation.

The AHRQ Addendum is a profoundly important development, for most important of all is the recognition, at last, of the harm and the danger to health of misdiagnosis and wrong interventions.

 A new biomedical care pathway is essential for all, but where are the clinicians to fill the gap? Are they there?

Greg & Linda Crowhurst
Aug 2016

Ref :

AHRQ (2014/2016) Diagnosis and Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome : https://effectivehealthcare.ahrq.gov/ehc/products/586/2004/chronic-fatigue-report-160728.pdf

ME Association (2016) Tribunal orders release of PACE Trial data (courtesy of Valerie Eliot Smith) | 16 August 2016 http://www.meassociation.org.uk/2016/08/tribunal-orders-release-of-pace-trial-data-courtesy-of-valerie-eliot-smith-16-august-2016/


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