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20 Years of Caring

20 years anniversary Well folks it's twenty years since our organisation was founded in 1987.

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Latest News

Latest News Read the Latest News about ME/CFS, updated monthly.
Research on M.E and C.F.S | ME CFS Research
Pacing Helps ME 2009 PDF Print E-mail

Working with the Brighton & Sussex Medical School the Sussex & Kent ME/CFS Society has been running a survey about the experiences over the last two years of those affected by the Chronic Fatigue Syndrome – ME across their region.This is the first professionally run comprehensive study of its type and the results will be seriously viewed by service providers and users alike. The project is looking at which NHS and other services people are using and how helpful these services are to patients. The questionnaire also enquires about which treatment approaches are being tried and how helpful those are.After informally analyzing 457 completed questionnaires so far received findings show that a number of treatments and approaches are helping a lot of people affected by the debilitating illness and that most doctors in the area are seen by ME/CFS patients as being helpful as is the Burgess Hill and Maidstone specialist NHS centres.   The majority, 54% of those that completed the questionnaire were moderately affected and unable to work and a further 16% virtually housebound and a few confined to the bedroom. Of those that have practiced the management approach of Pacing a massive 94% found it of some help or very helpful.  Treatments such as specialist Cognitive Behavioural Therapy has helped 74% of those that have tried it and specialist pain medications have helped the majority prescribed them as have low doses of antidepressants such as Lustral and Amitriptyline that can help some with sleep, mood and pain. Lifestyle courses run by the NHS centers and the Expert Patient Programmes are helping a lot of people and alternative approaches such as Yoga, Nutrition, Acupuncture and Homeopathy along with the Lightning Process are rated highly by many patients who have benefited from them. Colin Barton of the Sussex & Kent Society said  “Although ME/CFS can be a long term seriously disabling illness for some people there is much that can be done to help many patients make significant improvements as our survey clearly shows.” Dr Michael Broughton who is the lead clinician at the NHS Sussex-wide CFS/ME Service says “The preliminary results of this comprehensive survey support the view that a wide variety of approaches can be very helpful in managing CFS/ME. It is particularly pleasing to see how the concept of Pacing seems to help such a large number of patients. The NHS Sussex CFS/ME Team supports an evidence-based, holistic approach in managing this illness and we are pleased that the survey reveals a good level of patient satisfaction with our service. We are constantly striving to improve results and reduce waiting times for treatment and there has been major progress since April 2005 when we first opened and were inundated with referrals.”

Informal analysis of 457 completed questionnaires received
Male:   23%Female: 77%
Mild:   29%Moderate:   54%  Severe:  16%    Very severe:   1%
 
 The following percentages are of those that have tried the approaches/treatments 
 Not at all helpfulReasonably helpfulVery helpful
GP24%53%23%
Hospital consultant29%45%26%
NHS Sussex CFS/ME Service24%48%28%
NHS Kent CFS/ME Service25%54%21%
Pacing6%56%38%
Sertraline etc(SSRIs)33%52%15%
Amitriptylne etc (Tricyclics)34%46%20%
Special Pain Med35%39%26%
Lifestyle courses (EPP & NHS)20%64%16%
Specialist CBT26%50%24%
Specialist GET37%51%12%
Homeopathy43%44%13%
Acupuncture43%43%14%
The Lightning Process20%36%44%
Nutition18%59%23%
Yoga21%59%20%
 
Kent Patients Survey 2005 PDF Print E-mail

Initial analysis
The research was conducted to gain data to aid our support and campaigning activities across the county of Kent. We distributed 304 questionnaires of which 186 were completed (61% response).

87% of respondents had a firm diagnosis of ME or CFS or PVFS from a GP or hospital doctor.

Most patients had been ill for over 10 years the average overall being 14.07yrs.

Read more... [Kent Patients Survey 2005]
 
The Sussex ME/CFS Society (incorporating Kent ME Society) Survey 2003 PDF Print E-mail

EXECUTIVE SUMMARY
25% of members had joined the society having heard of it through a national ME organisation, whereas only 7% had joined through NHS healthcare recommendations.

89% of members had joined to find out more information about ME/CFS with 60% of those also wanting to get support, access services and help support the society.

Read more... [The Sussex ME/CFS Society (incorporating Kent ME Society) Survey 2003]
 
Chronic Fatigue Syndrome/ME in Sussex 2002 Survey PDF Print E-mail

EXECUTIVE SUMMARY
ME is classified by the World Health Organisation as a disease of the nervous system (1). The recent Chief Medical Officers' Working Group Report (2002) recognises that CFS/ME "can cause profound and often prolonged illness and disability and can have a very substantial affect to the individual and family" (2).

Read more... [Chronic Fatigue Syndrome/ME in Sussex 2002 Survey]
 
Chronic Fatigue Syndrome/ME Sufferers in Sussex: Their Needs and Experiences of Local Healthcare Provision. PDF Print E-mail
REPORT, FEBUARY 1999 - EXECUTIVE SUMMARY
The research was conducted in response to the Chief Medical Officer recognising Chronic Fatigue Syndrome/ME (CFS/ME).

CFS/ME is classified by the World Health Organisation (1992) as a disease of the nervous system, and the Department of Health recognises it as a 'debilitating and distressing condition' (DoH 1998).

Read more... [Chronic Fatigue Syndrome/ME Sufferers in Sussex: Their Needs and Experiences of Local Healthcare Provision.]
 



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