“How can we best support those most severely affected by M.E. who are house and/or bed bound?”
Response:
My first issue is with AfME - as a child I was a member; as an adult, I no longer wish to affiliate myself with your organisation. I was disappointed to learn of AfME's participation in the PACE trial. As a result of the trial's findings, sufferers treatment options on the NHS are restricted to CBT and GET at the nationwide CFS service clinics.
Back in December 2013, Sonia Chowdhury wrote:
'
As I've mentioned, and as is outlined in the draft strategy summary/our recent call for applications, we are keen to fund more biomedical research projects.' (Source:
http://phoenixrising.me/archives/20781)
Over 10 months later and I am extremely concerned and surprised to learn that 2 of your guest speakers (Clare McDermott and Prof. George Lewith) at the Severe M.E. Symposium are involved in this study: Neuro Lingustic Programming (NLP) -
Feasibility Study for a Community Based Intervention for Individuals with Severe CFS/ME.
So as an organisation you are still supporting researchers who focus on the Mind-Body/psychosomatic approach? I quote:
'
Clare McDermott has been previously involved in studies researching the biomedical side of the illness. She noted there is increasing research evidence that mind-body interaction can put biological systems within the body into an optimum healing state.' (Source:
http://forums.phoenixrising.me/inde...ndividuals-with-severe-cfs-me-uk.32205/page-2)
I find it incredible that AfME believes that this type of 'treatment' is what the severe sufferers of a neurological disease need - a psychosocial approach based upon the belief that the illness is caused by maladaptive thinking and deconditioning. Having been ill for over 24 years I have come into contact with many severe M.E. sufferers; to date I have not met one who has recovered through CBT/GET. I am, however, aware of a number of severe sufferers who have died, and that the majority of others are progressively worsening - many at an alarming rate. This seems hardly surprising, given that the systemic, physiological abnormalities and dysfunction present within our bodies has been neglected for so many years, and continues to be neglected to this day.
Secondly, it has come to my attention that the CEO of Action for M.E. earns £75k per annum, yet in 2013 AfME only contributed £61k to research. In addition, despite only having circa 5,000 members your organisation's salary bill for the same year was £545k. How on earth can this be justified? What money has your organisation earmarked to be given towards the biomedical research that we so badly need?
What is the point in trying to integrate health care when all that is on offer to us is CBT/GET (and possibly NLP in the future)?
You ask what steps can be taken to integrate health care, social care, welfare and other services with severe M.E. My response is: what health care, what social care, what welfare, what services? You, as an organisation, are living in your
ivory tower. Everyone I know of who has severe M.E. lives an isolated, unsupported life. I am not surprised - why would we expose ourselves to the health and social services when we risk being told that CBT and/or GET will improve us and that if we just got ourselves into a 'mending state' we'd be able to heal?
We live in poverty because we are unsupported by the NHS and our disease frequently does not qualify for benefits from the welfare services. When you are severely ill, you cannot fight. Many of us rely on the kindness and obligation of our families to provide and care for us in order to survive and not be homeless on the streets.
In my opinion, you can only move towards integrating more personalised care for severe sufferers if and when you as an organisation wholeheartedly reject the peddling of CBT/GET as
the 'treatment' for this disease and instead focus on actual biomedical research and interventions. You should be fighting for all those M.E. sufferers who, like me, remain hidden in the shadows because we do not trust organisations such as yourselves to speak for us, or to help us to procure the healthcare/treatments, and benefits we so desperately need and deserve.