The Poverty of Severe ME — Greg Crowhurst
The poverty entered into here is a stark and complete poverty.
It is a poverty on all levels: poverty of wealth – unable to earn money you rely on benefits which are not easily gained, or easily kept , neither do they provide for more than the minimum of life.
Poverty of pride, you have to sacrifice all self esteem as you search more and more for charitable grants to meet your basic needs, crushed by rising prices and dwindling funds
Poverty of family, you become alienated from their normal lives , they shut you out, they get on with normality rather than enter into the path of suffering you endure moment by moment, too careless of your feelings, too busy in their own lives, too angry with you for not being who they want and expect you to be
Poverty of neighbour, you are unable to maintain contact, reciprocate favours, join in social events you become isolated even from those in closest proximity.
Poverty of friendship, people simply get fed up with your lack of presence, with the difficulties of communication, they cannot and do not understand nor do they necessarily want to be that flexible, you become less visible, they move on and forget you, you become at best a Christmas card or birthday card, more easy to maintain than any genuine relationship that has costs and complexities involved.
Poverty of local community, you are not seen or heard, not being able to engage on their terms, you become invisible.
Poverty of religion, the religious who do not know God, who know religion, who are so caught up in self -importance, in ritual, that they cannot reach out beyond a general do good feel good factor that meets no real need, do not visit. Church becomes an impossibility to attend, prayer groups become an impossibility to attend.
Poverty of social norms – you simply cannot comply with normal expectations, meetings, deadlines, red tape, procedures, social gatherings, social events .
Poverty of state support , the spin around chronic illness, the denial of what the state is dong to collude with big industry rather than meeting honestly the challenge of a heart – breaking tragic physical illness is staggering and hard to believe .
Poverty of understanding , many people simply do not understand the vast complexity of need nor the physical suffering a chronically ill person experiences ; they are thought of as people who have made themselves ill due to wrong thought and laziness, considered scroungers on the welfare state, completely denied access without huge battles to get their basic needs and rights me.
Poverty of kindness , there is a shocking ignorance in the general public even in those closer to a person, that leads to unkindness, thoughtless gestures, exclusions, hurtful comments and all because of ignorance and lack of a genuine desire to enter into this place of pain and stand by you in this very painful place – few bother, few dare to care enough, many are thoughtless or deliberately unkind and uncaring.
Here we live, on the edge of society, on the edge of heath care provision. On the edge of surviving. — Greg Crowhurst
Other Articles of Interest
METHOD OF DIAGNOSING AND TREATING EPSTEIN BARR VIRUS-BASED MYALGIC ENCEPHALOMYELITIS CHRONIC FATIGUE SYNDROME PATIENTS: A method of diagnosing a subset of Epstein Barr Virus, Myalgic Encephalomyelitis Chronic Fatigue Syndrome (ME/CFS) patients through a multi-prong clinical/serological analysis is provided wherein Epstein Barr Virus Abortive Lytic Replication (EBV) is determined as the specific causal agent through the use of serum antibodies to EBV encoded dUTPase and serum antibodies to EBV DNA Polymerase as molecular markers. A method of treating patients diagnosed with Epstein Barr Virus Abortive Lytic Replication (EBV), Myalgic Encephalomyelitis Chronic Fatigue Syndrome (ME/CFS) with specific antiviral nucleosides is also provided, to alleviate the condition. (article found here)
Leptin: Andrew Gladman reflects upon the recent IACFS/ME conference and the buzz surrounding a small molecule, leptin. (article found here)
Low Dose Naltrexone: “We discuss the concept of using low-dose naltrexone (LDN) as a novel anti-inflammatory treatment for chronic pain conditions that are suspected to be associated with inflammatory processes.” (article found here)
Personal Blog: D-Ribose: Why it Might Work (article found here)
Study: Rituximabstudy with 152 patients probably to start this autumn (English translation at bottom of page, so keep scrolling!) (article found here)
Johns Hopkins Children’s Center paediatrician Peter Rowe, M.D., has received the 2014 research award from the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME) for his clinical and scientific work on chronic fatigue syndrome and related disorders. (article found here)
Neuroinflammation in Chronic Fatigue Syndrome: Direct Evidence at Last: New research provides evidence of neuroinflammation in chronic fatigue syndrome (ME/CFS,) thus providing support for the alternative name myalgic encephalomyelitis. (article found here)