Another blow for M.E. sufferers

By Dionne Paton

Monica Sleeping
Photograph by Ina Lazerev.

Myalgic Encephalomyelitus, (M.E.) has been in the headlines recently regarding the announcement to prevent people with the illness donating blood,  prompted by the possibility of a link between a retrovirus and M.E. Also known as Chronic Fatigue Syndrome (CFS) it is an illness which causes severe symptoms in the sufferer.

Symptoms can be complex and hard to diagnose. There are often a mix of symptoms and one sufferer may not experience the same symptoms as another. Symptoms include: persistent and overwhelming fatigue, pain in joints and limbs, sleeping difficulties, problems with thought and difficulty concentrating, heightened sensitivity to outside factors and upset to the digestive and nervous systems. There is no cure and currently research is ongoing. Last year, the Medical Research Council spent £109,000 researching the illness.

This debilitating disease is a difficult syndrome to live with and affects the sufferer’s daily life. Earl Howe, the Parliamentary Under Secretary of State of the Department of Health said of the blood donation ban:

“This decision was prompted by a recent independent risk assessment of a possible link between a murine retrovirus and CFS/ ME. Although the risk assessment was found no evidence of a link or a risk to transfusion recipients, the UK blood services recognised that practice for CFS/ ME should be brought in line with other conditions where individuals are permanently excluded from blood donation to protect their own health.”

Although this would indicate that M.E. is an illness which is easily definable as seriously debilitating due to the effect it can have on concentration and judgement and its obvious physical restrictions to the sufferer, it is not as clear-cut as that. Often professional opinion does not regard it as a disability. Tony Britton has said of the Syndrome:

“Despite being recognised by the UK Department of Health as a neurological disease and categorised as such by the World Health Organization since 1968, sufferers from this chronic, distressing disease have been labelled variously as work shy, attention-seeking and suffering psychosocial behavioural problems by some members of the medical profession, who would prefer it to be in the mental health category. To the press, it is still ‘yuppie flu’.”

This diminished view of the seriousness of the illness has a damaging effect on M.E. sufferers. In the issuing of Taxi cards, a scheme run by Edinburgh council where people suffering from a disability can claim to help with costs for travel by taking off a few pounds from the total cost of traveling by taxi. As people with M.E. have a disability they are entitled to claim. The application for a Taxi card from the council must be accompanied by a supporting letter from your G.P. and it is on their support you can claim.

One Edinburgh CFS sufferer has had her G.P. take away her supporting letter when trying to renew her Taxi card. This has been revoked as the treatment she was receiving no longer included physiotherapy. However, removal of a treatment does not mean the disability is gone. On describing what the Taxi card means to her in her daily life, she said:

“It’s like a lifeline. Without it, I am restricted on where I can go. It’s another financial penalty and if I was able to get a bus somewhere, I may begin to feel really unwell and not manage to get back home.”

It is unfair that the decision alone rests with one G.P. when medical opinion in terms of seriousness can be varied. Currently a supporting letter from a G.P. should only include that a person does have a disability or not and that should be enough for the council. When asked to make a response, the Edinburgh Council stated that sufferers “must be able to prove they are eligible for this benefit.”

It is difficult for the sufferer and the sufferer should be supported through this disability, and recognised as truly ill. The debate on the definition of whether it is truly a disease remains unfathomable until further research is provided.