Tony Lobo

Have You Heard of ME? (Myalgic Encephalomyelitis)

I am about to run my first Marathon and would like to raise funding for research into ME. Please help me achieve my target of £1000 My sister is one of over 250,000 sufferers of M.E. in the UK (at a conservative estimate), with about 25% classified as being severely affected, i.e. bed- or house-bound. ME sufferers are affected to varying degrees. There are no visible signs of the illness, ME sufferers do not look ill and seem to be able to cope with normal life as there are no physical outward signs, but the reality is quite different. My sister for example, has suffered from ME the last 25 years, has some good days but more bad days or weeks, sometimes bed or house bound. Each sufferer is a member of a family society that needs to provide care and support, so for every sufferer there could be 2 or 3 other individuals affected by ME. Personal relationships with family and friends of ME sufferers can also be severely affected as i... more

Have You Heard of ME? (Myalgic Encephalomyelitis)

I am about to run my first Marathon and would like to raise funding for research into ME. Please help me achieve my target of £1000 My sister is one of over 250,000 sufferers of M.E. in the UK (at a conservative estimate), with about 25% classified as being severely affected, i.e. bed- or house-bound. ME sufferers are affected to varying degrees. There are no visible signs of the illness, ME sufferers do not look ill and seem to be able to cope with normal life as there are no physical outward signs, but the reality is quite different. My sister for example, has suffered from ME the last 25 years, has some good days but more bad days or weeks, sometimes bed or house bound. Each sufferer is a member of a family society that needs to provide care and support, so for every sufferer there could be 2 or 3 other individuals affected by ME. Personal relationships with family and friends of ME sufferers can also be severely affected as it is most often the case that non ME sufferers cannot understand it

One may read or hear that little is known about the cause of ME and that there are different opinions on the causes. To sufferers and carers/parents of ME sufferers these opinions do not coincide with reality. A lot is known about neurological Myalgic encephalomyelitis (ME). The opinions of those suffering from ME is quite clear - this is an organic illness. Invest in ME is one of the many other organisations which are now campaigning for biomedical research into ME so that little doubt will remain that this is a biological illness which can only be treated and cured by science.

M.E. in the UK has suffered from the lack of adoption of a clear clinical diagnostic tool, resulting in M.E. sufferers not being identified correctly. Instead M.E. has been confused with other conditions that cause chronic fatigue.

It is 50 Years since the first clinically documented outbreak of M.E. in the UK, at the Royal Free Hospital in July 1955, where Dr. Melvin Ramsay noted the symptoms that would lead to a definition of M.E. although historical figures such as Florence Nightingale are believed to have suffered with this illness and mention of M.E. in medical literature goes back as far as the 1930's.

More recently, the "ground-breaking" work by the University of Sunderland (Prof. Hooper), the University of Glasgow (Dr. Gow) and Imperial College (Dr. Kerr) had provided an excellent foundation but it has suffered due to the pitifully small amounts of funding that can be provided by charities and individual patrons alone.

Research grants from the Medical Research Council (MRC) are desperately needed to properly fund the research.

There are a significant number of both national and regional charitable organisations and support groups across the UK, all with different views on how to proceed in advancing the cause of M.E. sufferers.

However, a unified approach would be more powerful and Invest in ME aim to bring like-minded people together.