From the Worcester News, 11 March 2016 (story by James Connell).
A DEBILITATING condition which feels like ‘permanent flu' is being treated as ‘the poor relation' of other neurological conditions say frustrated sufferers in Worcestershire.
However, those battling Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS), believe they may have made some headway in getting the help they need in Worcestershire and have cautiously welcomed the interest of NHS bosses in improving care.
Two members of the Worcestershire ME Support Group, Caroline Carver and Jill Pigott, believe they have successfully lobbied NHS bosses to get more recognition for the condition which can cause muscle fatigue, an ongoing ‘flu-like’ malaise, and various neurological symptoms such as poor balance, problems with concentration and memory loss.
In extreme cases it can leave sufferers bed-bound, unable to live a normal life or do the day-to-day things others take for granted.
The support group heard of a Clinical Commissioning Group (CCG) meeting about Worcestershire's Neurology Services and decided to attend to state their case.
The meeting held last September was not originally going to involve ME/CFS but since the two campaigners attended the three Worcestershire NHS Clinical Commissioning Groups have set up a project group to undertake a review of the current ME/CFS services across Worcestershire.
Caroline Carver, aged 62, of Barnards Green, described her condition as like suffering from ‘permanent flu'.
She said: “You're very much alone. It's this feeling of despair.”
She is racked by aches and pains and fatigue which can be so severe as to leave her feeling ‘poleaxed'.
The condition has already forced her to take early retirement from a job she loved teaching children with autism.
She said more research was urgently needed and believes GPs often do not understand the problem, classifying it as a psychological rather than a neurological condition.
The support group's aim is better facilities and better support for those with the condition in Worcestershire.
She said: “Jill and I came away from the meeting saying ‘yes, we have some recognition here'.”
She said also praised the CCGs for taking an interest and making efforts to understand the condition but added: “It has been completely overlooked.”
Ian Logan, chairman of the Worcestershire ME Support Group, says it was a small victory to have these conditions included in the review by the CCGs.
Mr Logan, 68, of Church Lane, Martley, near Worcester, has battled ME/CFS for more than two decades although he has recently experienced an improvement in his symptoms.
But it has had a heavy toll, forcing him to give up his job as a heating engineer.
He has been racked with flu-like symptoms, aches, pains and general fatigue which made ordinary living and day-to-day tasks like shopping impossible.
Mr Logan said it was ‘long overdue' that some proper support was given to sufferers rather than simply advising those with such conditions to pace their day better or take part in ‘graded exercise'.
“These conditions aren't being taken seriously enough. We're the poor relation.
“I'm back to normal now but all the years I was ill we were ignored and left on the shelf.
“The money was always wanted somewhere more urgent.
“When it comes to us there is no money, no time and no services.
“We would just like to think they're going to ask our help and input and do something about it.”
The Worcestershire ME Support Group has monthly informal gatherings in Worcester, Droitwich and Malvern.
The group is now hoping to reach out to those who suffer from any of these conditions so they can give feedback to the CCGs.
They hope to have gathered responses by the end of this month (March).
Last September Caroline Carver and Jill Pigott were told by the CCGs that the meeting would not include CFS/ME, but if anyone wished to discuss CFS/ME they would be welcome.
They were assured that there would be a further similar meeting covering just CFS/ME.
The three Worcestershire Clinical Commissioning Groups (NHS South Worcestershire, NHS Redditch and Bromsgrove and NHS Wyre Forest CCGs) have scheduled a meeting in early April with colleagues from provider organisations, representatives from Worcestershire ME Group and current service users, to discuss ME/CFS services.
This meeting is part of the CCGs commissioning activities and is separate from the neurology review process.
A spokesman said:
“With regards to the neurology review itself, neurology covers a large and diverse range of conditions, all of which are important to patients and to the CCGs.
“However, in order to manage the work involved in reviewing services it was agreed that the CCGs would initially focus on five specific areas; Multiple Sclerosis, Motor Neurone Disease, Parkinson’s Disease, Epilepsy and Headaches.
“Other areas of neurology, such as ME/CFS, would be looked at in due course.
“As part of the review, a stakeholder event took place in September last year.
“Representatives from Worcestershire M.E. Group attended the session and spoke with the CCG, to map the current pathway and note their concerns.
“That information will be fed into the meeting that is taking place in April.”
Feedback can be given via firstname.lastname@example.org or by calling Ian Logan on 01886 888419.