THE RIGHT & WRONG APPROACH TO ME

Stonebird
Greg and Linda Crowhurst

There are two approaches to ME.
One is the WRONG approach:
A Biopsychosocial response, based on false ideology:
* Warped
* Redundant
* Obsolete
* Negating
* Grossly offensive
WARPED - the misinterpretation of ME as a Functional somataform disorder caused by wrong illness beliefs and lack of exercise, leading to deconditioning - if only it were that simple !
REDUNDANT - providing Fatigue Clinics , calling them CFS/ME clinics and trapping people with ME in a service that does not see or meet their need.
OBSOLETE - the psychiatric therapies promoted as treatment for ME, which are totally inappropriate and potentially harmful.
NEGATING - the leaving of people with ME, without adequate understanding, help, support, recognition, explanations, treatment or hope of recovery.
CROSSLY OFFENSIVE - the denial of people's physical reality, their personal integrity, their sense of self, their physical need.
The other is the RIGHT approach to ME:
A biomedical approach, underpinned by full acceptance of the WHO classification of ME, as a neurological disease, nothing to do with Mental Health Chronic Fatigue, which has a totally separate classification code.
* Rigorous
* Insightful
* Genuine
* Helpful
* Truthful
RIGOROUS - in its honesty, integrity and understanding of the illness experience and the disease process,, using the best possible criteria to identify clients, with objective outcome measurement where possible and based upon solid, transparent research .
INSIGHTFUL- fully willing to listen, hear, test, investigate sensitively the nature of the disease and its multi-systemic impact upon the person.
GENUINE - valuing and validating the true physical nature of the disease and the suffering it causes, believing and knowing the person to be physically ill.
HELPFUL - genuinely understanding the person's reality and responding creatively, realising that any input must provided with immense sensitivity and understanding of the Post-exertional deteriorative nature of this disease. Not just trying to help but getting it right for the person every time.
TRUTHFUL - respecting how after 5 years recovery is is unlikely, without appropriate and relevant medical input and new pathways forward being developed. Honouring the possibility of other diagnoses for specific symptoms or even wrong diagnosis, to ensure thorough investigation of all symptoms, where possible and tolerable.
The right approach to ME is an integrated approach based on the principles of truth, compassion, right action, connection, honouring and respecting the illness and the specific experience of it for each individual.
Service provision must :
1. Be based on physical truth of the disease and be specifically aware of the cognitive dysfunction, which can be profound and totally disabling. Any mental health provision offered, should be secondary, not primary involvement. ME is not a mental health condition, even though the Psychiatric Lobby is misinforming many on this issue, including Health Commissioners.
2. Fully acknowledge how serious a physical illness ME is. A biomedical approach to healing and medical support is required and a MOMENT approach to care, MAXIMISING THE MOMENT TO MEET EACH NEED TENDERLY.
3.Provide compassionate, supportive, aware care.
4. Must connect with people in order to end the alienation, isolation and separation .
Provision for people with ME needs to be based on integrity, awareness, honesty of prognosis, realism about the illness, and an appropriate, safe level of help and recognition.
It must no longer be driven by ideology, but by understanding.
It must honour the person’s actual experience.
It must be values-driven, linked to an overarching principle of truth, framed in a biomedical context; not a made up story charading as truth, such as the Psychosocial interpretation of ME, driven by false ideology, but the absolute truth, about the physical disease: MYALGIC ENCEPHALOMYELITIS.

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