Reply, sent 12 December, to article in Dorset Echo about local group receiving £40,000 grant from “Children in Need” for Child Support officer (pasted below my signature).Some of you may think of some other points to contribute. The e-mail address is firstname.lastname@example.org
Dr John H Greensmith
ME Free For All. org
Dorset Echo Letters.
Your article about spending £40,000 from Children in Need on M.E. (ME group receives grant for support worker, Dorset Echo, 10 December 2007) raises some questions that are of particular interest to local M.E. (Myalgic Encephalomyelitis) sufferers but also many more that are equally applicable to services for adults, as well as children, all over the country.
Incidentally, one may wonder why Hazel Matthews was appointed to the post of Child Support Worker before the closing date of 13 December has been reached, thus denying any candidate who was working on their application up to the deadline.
There is a crucial illogical flaw that persists in regarding M.E. either as one of a number of illnesses, having chronic fatigue as a symptom, under the umbrella term Chronic Fatigue Syndrome (CFS) or of the two terms, M.E. and CFS, being thought synonymous and interchangeable. Neither is true. As the World Health Organisation recognises, M.E. is a discrete neurological illness. There is no evidence for saying, as here, that M.E. is a more severe form of CFS as if, on a scale, CFS would be 3 or 4 but, at 7 or 8, it becomes M.E.; nor for any change of criteria that is supposed to bring this about. It would be like saying that, at some point, a heavy cold becomes flu, when they are just as discrete examples.
This muddled thinking about the very name itself infects any attempt to design a reliable experiment so that, together with different therapists, of different backgrounds, in different places, giving different treatments in different combinations, sometimes individually, sometimes in groups, sometimes at a treatment centre, sometimes at home, even sometimes remotely over the phone, patient sample size may come down to a single person and generalising is practically impossible.
There is no doubt that research funds would be more wisely spent on biomedical research to discover the physical cause of M.E. which should, in turn, suggest appropriate, safe, treatment. Until then, this M.E. organisation advises against unproven treatments since no treatment is better than one which may have no lasting effect and especially against Graded Exercise Treatment (GET) which may do some M.E. sufferers irrecoverable harm.
ME group receives grant for support worker
FUNDRAISERS pulling out the stops for Children in Need have been given a reminder of the causes that benefit from their efforts.
The Dorset ME Support Group has received a grant of over £40,000 from Children in Need to provide a support worker to help young sufferers cope with the illness.
Hazel Matthews has been appointed to work with those with Chronic Fatigue Syndrome (CFS) or its more severe form, ME, and their families.
Dorset CFS/ME Service team leader Barbara Goodchild said: “We are a very small therapy team so to have somebody like her means she can follow up all our programmes in children’s homes and in the hospital. She’s a tremendous support.”
She added that the specialist CFS team was one of only ten groups across the country.
Mrs Goodchild said: “We are very lucky to have a service at all, we need to support is as much as possible.”
The Dorset ME Support Group and the Dorset CFS/ME Service also put on a conference and workshop at Kingston Maurward College.
More than 70 people attended including representatives from schools, social care and health professionals.
They received information through a series of presentations and a session with four young ME sufferers.
Support group trustee John Arscott said: “They are to be congratulated for their mature and articulate contributions. We learnt so much from them.”
Mrs Goodchild added: “We are now setting up a working party and quite a few have volunteered.”